Author Archives: Jess

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Potential Future Celiac Treatments

I think we all know that the only current treatment for celiac disease is the gluten-free diet. Most days I think that it’s awesome that the only “thing” I have to do to treat my autoimmune disease is watch what I eat. I am grateful that I don’t have to take any pills, do self-injections, etc. But some days, especially when I travel or have to eat outside of my gluten-free home for an extended period of time, I don’t feel quite so enthusiastic about having celiac disease. I fear getting “glutened” when I am away from home. And it takes my body a good 2 to 4 weeks to totally recover every time I am accidentally exposed to gluten.

Recently reading about and reviewing some of the potential future treatments for celiac disease has given me some hope for a future life as a celiac with fewer “glutenings” and an improved quality of life.

According to a recent paper published in the journal Gastroenterology Report (see reference below), there are 3 main categories of potential treatments for celiac disease: gluten detoxification, intestinal permeability modulation, and modulation of the immune response to gluten. I’ll try my best to explain each in a bit of detail.

Gluten detoxification involves making some sort of modification or change to gluten so that it will not cause an immune response. Some of the research in this area has involved the genetic modification of wheat. The bulk of the research in this area, however, involves enzymes that break down gluten into small, non-toxic fragments that do not cause an immune response. The CeliAction Study, which I have previously written about, is phase 2 clinical trial of a drug called ALV003. ALV003 contains 2 enzymes (EP-B2 and SC PEP) that break down gluten into non-toxic fragments. Additional therapies currently being studied include probiotics, AN-PEP, and STAN1. These enzymes are all intended to augment, not replace, the gluten-free diet. ALV003 is also being studied as a treatment for nonresponsive celiac disease.

Intestinal permeability modification involves tightening up the gaps between the cells in our intestinal tissues. For those of us with celiac disease, ingesting even trace amounts of gluten can lead to an increase in intestinal permeability (also known as leaky gut) through the action of a protein called zonulin. Larazotide acetate, which is currently in phase 2 clinical trials, is the main celiac drug being studied to modulate this zonulin-induced increase in intestinal permeability after gluten ingestion. Like ALV003, larazotide acetate is anticipated to augment the gluten free diet and help prevent symptoms from gluten cross-contamination.

The third category of therapies modulate, or block, the gluten-induced immune response in celiac disease. Nexvax 2, also known as the “celiac vaccine,” contains 3 peptides (small portions) of gluten. Exposure to these small amounts of gluten in the vaccine induces a change in the immune system, preventing subjects from having reactions when they ingest gluten after receiving the vaccine. In other words, gluten tolerance develops. Based on the lecture on Nexvax 2 that I heard at the International Celiac Disease Symposium in 2013, this vaccine may actually eventually replace the gluten-free diet and celiac patients who receive the Nexvax 2 may be able to return to their pre-diagnosis diets containing gluten.

Additional therapies in the immune modulating category include parasites, such as whipworms and hookworms (see link), monoclonal antibodies like those used in inflammatory bowel disease, and CCX282-B (involves CCR-9 blockade and is so complicated that I am unable to fully understand it and explain it).

I look forward to the possibility of being able to take either ALV003 or larazotide acetate in the future to prevent symptoms from accidental gluten ingestion/cross-contamination while eating gluten-free outside of my home and travelling. I am unsure about the celiac vaccine. I understand that many of you dislike the notion of ever having to take a “celiac drug” and that is okay. I respect the fact that many of you would opt to decline these therapies if/when they become available and I hope that your doctors will do the same. I, for one, am excited though!

Reference

Castillo, N., Thimmaiah, G., Leffler, D. The present and the future in the diagnosis and management of celiac disease. Gastroenterology Report. 2014, 1-9.

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Introducing Gluten to the Baby At-Risk for Celiac Disease (2014 update)

My youngest daughter, Claire, who I had in 2012, was my first baby born after my celiac diagnosis. I really struggled during her infancy to figure out if/when I should ever feed her gluten, as I wanted to do everything possible to prevent her from developing this disease. Based on all of the available research at the time, I made the decision to introduce her to small amounts of gluten when she was about 5 months old, and I breastfed her as long as I could (see my previous post for more details). I also freaked out a bit, as I was pretty sure that I had introduced gluten at the “wrong” times for my 3 oldest kids, beyond the 4-6 month “window” that had been supported by the literature, and I had not even been breastfeeding when my 2nd child was given gluten for the first time.

Fortunately, thanks to two recent studies published in the October 2nd New England Journal of Medicine, moms of infants at-risk of celiac disease will no longer need to struggle with their decision making the way that I did. Both of these beautifully designed, randomized, placebo-controlled European studies, including large numbers of subjects, demonstrate that neither the timing of gluten introduction, nor breastfeeding during gluten introduction, make any difference in the eventual development of celiac disease in at-risk babies. I wish that these results had been available in 2012 when I was struggling with my decision-making for baby Claire!

The first paper, entitled “Introduction of Gluten, HLA Status, and the Risk of Celiac Disease in Children,” discusses results from the Italian Risk of Celiac Disease and Age at Gluten Introduction (CELIPREV) trial. In this study, 707 infants who were at risk of celiac disease (having either a parent and/or sibling with celiac) were randomized to be introduced to gluten at either 6 months of age (Group A) or 12 months of age (Group B). Infants in the study who carried the celiac genes (HLA-DQ2 and/or DQ8, n=553) were then followed for the development of celiac disease via repeated celiac antibody testing at age 15 months, 24 months, and 3, 5, 8, and 10 years of age. Celiac disease autoimmunity was defined as having positive results for celiac antibodies. In total, 117 of the 553 subjects met the criteria for celiac disease autoimmunity during the study, and 91 of the 117 with celiac disease autoimmunity were diagnosed with celiac disease.

In the CELIPREV trial, earlier introduction of gluten was associated with earlier development of both celiac disease and celiac autoimmunity, but by age 5 there was no difference in the rates of celiac disease or celiac disease autoimmunity between the groups. At age 2, there were significantly more children with celiac disease from study Group A (early introduction) than study group B (late introduction), 12% v. 5%, but by age 5, the percentages of children with celiac disease in both the early and late groups were the same (16%). Likewise, although there was a significantly higher risk of celiac disease autoimmunity in the early group v. the late group at age 2 (16% v. 7%), the difference resolved by age 5 years (21% v. 20%). In addition, breastfeeding duration was not associated with the development of celiac disease. The authors conclude that postponing the introduction of gluten until 12 months of age had no effect on the eventual development of celiac disease in at-risk children.

The second paper, “Randomized Feeding Intervention in Infants at High Risk of Celiac Disease,” discusses results from ongoing the Prevent CD trial. In this study, infants at-risk for celiac disease (defined as having both a first degree relative with celiac disease and the presence of one of the 2 main celiac genes) were randomized to be given either gluten (n=475) or placebo (n=469) between 16 and 24 weeks of age. All of the infants were then followed closely for the development of celiac disease until they were 3 years old. Overall, 80 of the subjects developed celiac disease by age 3. Rates of celiac disease in the gluten v. placebo groups were similar at age 3 (5.9% in the gluten group v. 4.5% in the placebo group) and breastfeeding duration was not found to have an influence on the development of celiac. When evaluated by gender, however, there was a small increase in celiac disease at age 3 in girls who were exposed to gluten v. placebo (8.9% v. 5.5% in boys), which the authors speculate may be due to the fact that there were more girls who were double DQ2 positive, or homozygous (this is the highest risk gene combination for celiac disease). The authors conclude that giving small amounts of gluten between 4 and 6 months of age makes no difference in the eventual development of celiac in genetically predisposed infants.

In conclusion, we now know that there is nothing that we can do, feeding-wise, to prevent the development of celiac disease in our at-risk babies. While these results are sobering, as I know that many of us wish that we could do something to prevent out babies from developing celiac, I hope that future moms will be able to be a little easier on themselves than I was regarding the timing of gluten introduction. As a mom and neonatologist (pediatrician) I am a huge advocate of breastfeeding, and despite the aforementioned research showing that it does not seem to effect celiac disease development, it has numerous other health benefits for babies. I encourage moms to provide breast milk, in at least some capacity, during infancy (realizing that exclusive breastfeeding is sometimes not possible). Lastly, I feel much less guilty for exposing my 4 kids to gluten as babies, as I now know that if they do develop celiac, that it is not because of how I fed them!

Thank you for reading! As always, comments, questions, stories, etc. are appreciated!

References

Lionetti, E., Castellaneta, S., Francavilla, R., et al. Introduction of Gluten, HLA Status, and the Risk of Celiac Disease in Children. New England Journal of Medicine. 2014. 371: 1295-1303.

Vriezinga, S., Auricchio, R., Bravi, E., et al. Randomized Feeding Intervention in Infants at High Risk of Celiac Disease. New England Journal of Medicine. 2014. 371: 1304-1315.

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#100

When I started this page in 2012, I never anticipated that I’d make it to the 100 post mark, but here I am. I am going to treat this post as a brief update. My disclaimer is that this is a very personal post, and has very little to do with with celiac disease, so if you follow my page for celiac and/or non-celiac gluten sensitivity information only, then you should probably stop reading now…

It’s been a hectic last few months for me, in all regards, and my celiac disease passion, advocacy, and writing efforts have really fizzled out. Here’s what’s been going on, in a nutshell:

I had a recent breast cancer scare. In early August I found a painless lump in my left breast during a self-exam that I had never noticed before.  I went to see my primary care provider after about 2-3 weeks, as the lump persisted and slowly grew in size, who ordered a mammogram and ultrasound. I was ordered to wait 2 weeks to have the testing done, just to make sure that it wasn’t a fibrocystic change related to my menstrual cycle. Even though I knew that the odds were in my favor that it wasn’t breast cancer, I was extremely anxious and scared. I kept imaging the worst-case scenario of leaving behind my husband and 4 kids without a wife and mother.  Fortunately, the lump ended up being a totally harmless lump of dense, fibrous tissue. The entire experience really made me step back and examine my life and priorities and made me reflect on how grateful I am for my family, friends, and my health. It gave me a much needed reality check.

We have added an addition to our household. My 14 year old niece has moved in with us for this school year, and although she is a great kid, I totally underestimated what the transition from 4 to 5 kids would be like in terms of groceries, laundry, extra-curricular activities, etc.  The blessing is that we are getting to know her better and she gets along really well with our little ones. And she babysits!

I went through a series of job interviews and I’ve signed a contract for a new job that will put us back near my husband’s family in Boston. We will be moving next summer, in 2015, right after all of my kids finish school. I will still be working full-time as a Neonatologist, but in a totally different type of hospital setting, and I’ll work less weekends and nights.  I hope that this will be the last move we ever make, at least until our kids are raised and out of the house (but as I’ve learned, you never know that the future will hold).

I have continued to train for the NYC marathon on November 2nd in which I will be running on the Celiac Disease Foundation’s Team Gluten-Free. My training runs have been going well and I hit the 16 mark last week.  Running has truly helped me to maintain my sanity over the last few months (along with some very supportive family and friends). As of today I am $430 away from reaching my goal of $3500. If you are interested in donating, you can do so via this link to my fundraising page.

I applied for the University of Chicago Celiac Disease Center’s Annual Preceptorship Program in December. I have no idea if I will be selected or not, but I thought it wouldn’t hurt to apply. If I do get selected and have the opportunity to participate, I will learn a lot of new information that I can hopefully share on this page with you.

I hope to be back soon with a Fall 2014 journal club. In the meantime, many thanks to Shannon for her guest post last week about being newly diagnosed and for helping me to keep my page afloat. I hope you all are doing well and I wish you a Happy Autumn!

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Guest Post: Diary of a Newly Diagnosed Celiac

My name is Shannon. I was diagnosed with Celiac Disease in November of 2013 at the age of 51. I cannot tell you how long that I had Celiac prior to being diagnosed except that it was for many, many years. At this time, I am the only one in my family who has been diagnosed or tested. I have been a nurse since 1993. At that time, Celiac Disease was taught to be a very rare finding in “failure to thrive” children. I returned to school in 1997 to become a Nurse Practitioner. Again, Celiac Disease was a very rare finding and was to be considered in the “failure to thrive” child. I do not even recall learning about this in classes, simply reading a paragraph about this in a textbook at the most. I have had tummy issues since I was a teenager, poor dentition despite very good oral hygiene, multiple canker sores for as long as I can remember, strange illnesses, food intolerances, allergies, intermittent dizziness, anxiety, bouts of depression, herniated disks in my lower back, low vitamin D level, premature ovarian failure, and migraines. I have always felt as if I was treated as a hypochondriac and wasn’t tough enough to handle the “little things” that came my way. I have been to multiple doctors over the years trying to find out what was wrong with me only to walk away feeling like it was all in my head. Since my diagnosis, I have contacted some of my prior physicians to try to educate them as to what was really wrong with me. Some have been receptive and thanked me – others not so much. I am currently not practicing as a Nurse Practitioner for many reasons. I am teaching nursing students at a local college and recently started volunteering in the GI Department at Mayo Clinic in Scottsdale with an emphasis on Celiac Disease research. I am married to the most wonderful man who has been by my side through all of this. The ironies in life…. He owns a commercial bakery. He cannot go 100% gluten free because of his job but we have a gluten free household so that I always have a safe place. My extended family tries hard to understand my disease and what it means when we are all together. No one else has been tested as of yet and I am not sure if they will. I have learned over the past year that it is their journey, not mine. My escape in the past year has been gaining the most knowledge that I can regarding my disease and trying to educate other healthcare providers so that we can stop the years of suffering before someone is given the right diagnosis. Photography has been my other escape. When I am looking through the lens of a camera, the rest of the world disappears and I am by myself exploring the beauty in front of me. The diary that I have submitted is some of my thoughts from the first few months after I was diagnosed. I hope that it helps someone to realize that they are not alone in their struggles. I did not believe it when I heard it at the beginning but “it does get easier”.

It all started with looking up my labs on the patient portal on a Saturday evening, November 2, 2013 at 8:14pm. I had seen my doctor earlier in the week and told her that I was not feeling myself (in fact I told her that I felt like I was dying – that I was an 80 year old in a 50 year old body)…. Extremely tired, not able to think or come up with words, I felt like my eyes were moving all of the time, increased headaches, hard to even drive a car but mostly just exhausted beyond words. I was exhausted just taking a shower. My arm was tired just drying my hair. I would get ready for work in the morning and want to crawl back into bed. I would go to work and come home and take a nap just to get through dinner. My initial labs came back with a Ferritin of 10 and a low zinc (hello?? The reason for my sore tongue that my dentist had ignored and told me was hormonal). My doctor was concerned that I was bleeding internally so emergently scheduled a colonoscopy. Nope, I KNOW that is not the case…. It is something else. So I started eating high iron foods and vitamin enriched WHOLE GRAIN cereals and felt worse. My tongue was a mess, apthous ulcers, so sore that it was difficult to speak at times, my eyes were not focusing and still felt like they were always moving….. and then….. texting my doctor…..

“Dr. Internal Medicine, I just looked up the celiac bloodwork that you added. Have you seen it?”

“No haven’t seen it yet, what’s up?”

“Very high, all three celiac labs are back.”

“Ok will look when I get home, am out to dinner with no access to clinic labs. If so, we have our answer”

“Ironic that my husband is a baker, Have a nice dinner”

“Just looked at your labs. Yes antibodies are up. Tell Dr. Gastroenterologist  so that she can obtain duodenal biopsy specimens along with your scheduled colonoscopy. You may need a gluten free diet with retesting later. We will wait for biopsies to confirm.”

And so it began….YEARS of being sick, YEARS of being a hypochondriac, YEARS of only seeing parts of the puzzle and a text message gave me the answer.

November 3rd what in the hell can I eat? Gluten free…… what in the world does that really mean?

November 4th appointment with Dr. Gastroenterologist, yes, it looks like I have celiac from my labs alone. Your husband may leave for South Africa as originally scheduled and it is ok to delay colonoscopy as you are probably not bleeding internally after all, I will add an EGD for duodenal biopsies for conformational diagnosis of Celiac.

November 5th Jonathan leaves for SA and I have no idea what to do with myself. I have never cried so much, felt so awful, heart pounding, exhausted yet cannot sleep. I think of peach pie and I cry. I think of macaroni and cheese and I cry. I cry. I think. I cry.

November 6th celiac support group meeting by myself. I meet people who have had celiac for years. I meet a lady in 5 inch heals that told me that she was disabled with ataxia – excuse me? Why are you in 5 inch heels then? Food everywhere and supposedly all safe. I tried foods and they all tasted foreign and terrible. How am I going to do this? I miss Jonathan. I miss normal. What is normal? Everyone in the room has an absorption issue and they are all eating a bunch of junk food. Isn’t there something wrong with this picture? Talk of safe restaurants, websites to buy junk food, phone apps, reassurance that it gets easier, talk of the holidays, bread all awful except if toasted – why eat it then?? OMG I can never eat anything from Jonathan’s bakery again. Get that thought out of your head! Too late, more tears. Everyone seems too excited to have a new member to this unique group. I am not excited at all and will need to rethink this. I leave completely overwhelmed. I cry all of the way home and I am not even sure why I am crying.

November 7th I am slowly starving, (and now realize that I have been starving for years). I need to go to the grocery store. Too tired to care at the moment. Meat and potatoes and rice and veggies and fruit right?? I throw some things in my cart and go to check out. My favorite cookies are at the check out. I start to cry, I can never eat them again. I am crying over food again. Really? Nothing feels safe. Wake up! It’s just a bad dream. Everyone and everything is different all of the sudden and I am beginning to realize that it will never be the same again.

Appointment with the nutritionist. Mom comes along as she wants to support me. Let me get this straight? I meet with you for an hour and I already know as much as you? Really? All you can do is give me handouts that you read from. Really? She tells me that I should not visit the bakery because of the flour dust. So the bakery is a nuclear war zone to me now. Gluten is nuclear waste. Thoughts of Thanksgiving creep in to my head. Stop! I cannot go there yet. I hold back more tears. Email to Dr. Internal Medicine – “I need a role model please”. Strange experience at the support group and inadequate help from nutritionist. I need to meet someone who has a healthy attitude about this. I feel like I am treading water and want more than my nostrils above water please. A telephone call reply. Get your act together Shannon. If anyone can do this, you can. She shares that her daughter has a peanut allergy so it could always be worse. I am sorry to hear that but at this point, I really don’t care, sorry. She feels that I need help. No kidding! I asked for help. Referral to a Psychiatrist. Fine, Psych it is…. Because I am going crazy right? No! All of these years that I thought that I was crazy, because everyone made me feel like I was crazy, I was actually sick!

Lunch at moms today. Gluten free pasta. She went out and bought a dedicated pasta strainer for me and it is even labeled gluten free. First bite…. Wow, not so bad. Second bite and I smile. I can still eat “pasta”. My step-father begrudgingly joined us and actually finished his plate. Maybe we can all co-exist as a family during a meal after all.

Jonathan comes home from South Africa to a gluten free house. I have spent hours cleaning crevices in the kitchen, washing down everything, piles of gluten waste to be given away. My friend vacuumed the pantry for me and moved all of my “forbiddens” into the other room so that I did not have to look at them when I am hungry and trying to figure out what in the world I was going to eat.  My mother declares the frosted mini wheat box hers. My favorite breakfast…. Goodbye. So many goodbyes to food. It is so strange that a goodbye to an inert food item is so emotionally painful. SO let me get this straight…. Every time I did not feel well and ate crackers, I was making myself sick. Chicken noodle soup? Sick. Comfort foods like macaroni and cheese? Sick. My favorite birthday meal of beef stroganoff? Sick.

Still making it through clinical with nursing students. I am so thankful to be working part time right now although it feels like a 40 hour work week every day. Heart still pounding, still feel like awful from emotional standpoint and out of breath with one flight of stairs. Slowly realizing that my stomach doesn’t hurt as much. No heartburn. No pinching feeling. What is normal anymore? So my normal wasn’t normal?

Appointment with nutritionist at Mayo – what a breath of fresh air. Jonathan came along and I have begun to realize that he really cares and will be there for me. Great examples given, great discussion. Banning bakery visits is overkill. BTW, brush and floss before kissing if my husband eats gluten. BTW wax coating on veggies and fruits might contain wheat. BTW the vitamin D that you are taking is made in a place where they process products with wheat so not gluten free even though gluten free. Try another form of iron. True, you are not absorbing but try it anyways. Huh?

Bowel prep time for colonoscopy. Always nervous with new medications. Horror stories from friends and family about prep. Not so bad. Kept waiting for more that never came. Biggest problem is that I was already starving, now I can barely walk I am so hungry.

In for colonoscopy and EGD. I tell anesthesia that I am an intermediate metabolizer. His look said, I don’t care. I am very familiar with that facial expression from years of telling physicians all of my symptoms which they ignored. I sense an undercurrent of anger emerging within me. My psychiatrist tells me that I have medical post traumatic stress syndrome, I am beginning to agree with her.

Woke up and I was told that they were unable to do colonoscopy. Dr. Gastroenterologist seemed shocked by this. I had told her about my complications from prior surgeries (Celiac related? Who knows!) Jaw is incredibly sore, did I fight? Was I masked? Don’t care to know the answer. Now wait for results.

Call from RN on day before Thanksgiving. I have Celiac. Marsh IIIC. Gastritis. Take PPI. Nope, don’t want to. I already do not absorb and you want me to not absorb?? Will call me back. Once again, I sense that I am considered the “non-compliant” patient. Ok, hang up phone and go back to picnic. Picnic!! Really?? Is there nothing that is not related to food somehow

Somehow make it through Thanksgiving although we realize that our house must be 100% gluten free. Cheesecake that Josh begged to bring is on table, fridge, floor etc. Thank goodness he put red food coloring in it, makes it much easier to see everywhere that it was dropped, wiped on, etc. I cannot keep any of the leftovers…. Stuffing anyone?

I finish the semester with students and I notice that I look a little less translucent and the circles under my eyes are a little less dark blue when I look in the mirror. My heart isn’t pounding to the same degree when I walk up a flight of steps. There is nothing to eat at the hospital cafeteria so I now pack my lunch. The nurse’s lounge is like a nuclear waste zone with the gluten everywhere. The microwave has not been cleaned in years, half eaten cookies on the table. I am afraid to eat – cross contamination is a risk everywhere that I look.

My experiences with Celiac are all starting to blur together, does that mean that I am getting this down?

Christmas is heading our way. Is this gluten free, is that gluten free? So tired of those two words and I have a lifetime ahead with those words….. Need to find gluten free candy canes. Is there an app for that? I now have an entire page of apps for celiac. Who knew? Last report is that the candy canes were gluten free BUT now they are made in Mexico. Does that change anything? Peppermint stick ice cream – not this year, too tired to try and find the one that I can eat. Christmas cookies? Can’t go there. Telephone calls and emails to corporate headquarters. It is never ending.

Christmas morning breakfast. For years we have had Pillsbury orange danish. It is one of our holiday rituals. We never eat them except on this day. OMG. Never again! OMG they smell incredible. Stepdad is in charge of the eggs for me. Separate pan? Check! Separate butter? Oops! Too late, start over. Wash the pan, get new knife, get new butter. All for one egg! Almost not worth it. Plates? In the warming drawer with the orange danish and the English muffins. SO how much nuclear waste do you think is on my plate sitting below these? I get a cold plate from the shelf.

We bought a new toaster….. can’t stand gluten free bread. Ironic don’t you think?

Signed up for a macaroon class – the kitchen at Sur la Table is a nuclear waste zone for gluten. I can bake it, it is “gluten free” but I cannot eat it. Even the almond flour that they used is produced in a place that also produces wheat.

Went out to lunch with Jonathan to TruFoods. I thought they would be safe. They are not even though they insist that they are. I have to laugh as it reminds me of being a teenager “don’t worry I won’t get you pregnant” – “don’t worry I wont give you gluten”. Weird to think that way – maybe I can blame the gliadin antibodies (I use that excuse a lot lately). I explain to the waitress that I have the real thing. Not a fad. Not for show. I am surprised by the amount of vulnerability that I feel. She claims that she gets it and then brings gf pita with regular pita. Excuse me, which one is which? I inspect the gf pita as I have read to do. Avocado smeared on it. Did the person change gloves to plate my pita? Doubting it now. Have to send it back. Any safer with next round of pita?? Just because a restaurant is good for you, it does not mean that the restaurant is good for you.

Starting to plan for our trip to Yellowstone. How in the world am I going to do this? Calls to snowmobile tour office. “No problem, we will use gluten free bread for you” “What do you mean you can’t eat some of the chips?” “Which brands?” What do you mean we have to prepare your sandwich separately”? “what do you mean you cannot have croutons on the salad?” I realize that I will be packing a lot of food for this trip.

I have been nominated to find all of the restaurants and make reservations for New Years Eve and New Years Day so that I can go to dinner with everyone. No other family members have been tested and I am beginning to doubt that they ever will be – both by ignorance of the medical profession and denial by my family. I send out sample menus. I can tell that my stepfather has reservations (get it?) about some of my choices. Reservations made.

So Yellowstone in the winter is probably not the most celiac aware place to try out my new wings of being a celiac. I have reservations about going, I have reservations for dinner. Breakfast I suspect will be iffy no matter where we are. I get short of breath climbing a flight of steps, want to sleep by 8pm and I am going on 100 mile per day snow mobile trip for three days in zero degree weather in 7000 feet above sea level. I said yes why? Oh yeah, it was all in my head when we decided to take this trip. I just had tummy trouble and migraines when we decided to take this trip. I was just tired, burnt out from my job, stressed from being a stepmother of three teens. I had seen neurologists, internal medicine doctors, GI Specialists, dentists, eye doctors and it was always just me complaining about something weird when I decided to take this trip.

The plan was to meet at the airport for breakfast. I knew better and ate at home.  I may be new to this but I have already figured out that they do not really offer gluten free options the last that I looked.

So we take off for Yellowstone. First flight and I am offered a cookie that I used to hoard on flights – Bischoff cookies. I suspect that they are not gluten free. Actually I know that they are not gluten free because they were one of my favorite cookies. I explain to the flight attendant that I cannot have them. I am offered pretzels, nope not those either. I will take a coke and get something from my purse. Do I need a larger travel purse? Hmmm… good excuse to visit Coach. I wonder if it is considered  tax deductible?

We land in Jackson and where to go for lunch?  There is already talk of what to have for New Years when we all get together after dinner. Everything revolves around the meal that you are on or the next time that we are all going to be eating together. Dinner is at an organic and gluten free restaurant. Some of my family is already a little nervous with words like this being used so freely. My first dinner traveling went ok for the most part. 8 out of 9 were happy with the meal and I have to give my family credit, I know that it is because they love me that we were sitting at this table in this restaurant on New Years Eve. Why does a disease have to show you who loves you in life? Shouldn’t you already know these things? Can I yell do over? Didn’t think so.

Three days in zero degree weather with no one besides my family knowing what Celiac is. Still exhausted…. But I did realize that I never had tummy issues. I returned from this trip knowing that I can survive and learned how to just ask for my food to be “naked”. I survived. I know that I have survived much worse now…. I survived living with an undiagnosed disease for years, I can certainly survive now that I know what is wrong with me.

First visit at the periodontist for a cleaning since my diagnosis. I get my teeth cleaned every three months because no one believes me that I floss and brush all of the time. Now we know the real reason that I have had so many dental issues. I saw him briefly in December and told him that I had celiac. He shared with me that his 27 year old daughter had recently tested positive as well. I gave him an article about how dentists should be more aware of celiac and refer accordingly if they see a patient with apthous ulcers, dental carries despite good hygiene, geographic tongue, tonsilar stones, etc. So cleaning went well and pocket has improved. Hmmm… celiac caused some of my gum pockets? How many thousands of dollars of dental work have I had that I might not have needed if I would have been diagnosed 10 to 15 years ago. Time for the polish and she starts to polish my teeth… I stop her and say “this polish is gluten free right?” She stops and says let me check. Let me check?? Really??? Let’s review: I have celiac, cannot have gluten. She comes back with a different polish that she KNOWS is gluten free. Hmm does that mean the other one was not? Where in the world am I supposed to feel safe?

I wake up the next morning and all of my gums hurt. I have a migraine and feel like crap. Is this what glutened is all about? As the day progresses, I am feeling worse. Exhausted and good ole trigger points are back reminding me of how I used to feel every day. Day #2 post gluten – wake up with a headache and trigger points still in full force. My gums are now peeling so I call the office to tell them and to make sure that I never have that polish again. Apologies given, but too late. Again, there is a compounded mistrust of those who should be taking care of me are the ones that have harmed me.

Visit to the store this evening. Walking through Biltmore Mall it is a Friday evening and everyone is on the patios eating and drinking and looking like they do not have a care in the world. Clinking of beer glasses. The smell of spaghetti. A fully loaded gourmet burger on a brioche bun. A group sharing a pizza. All forbidden. A life sentence.

I have always loved my quiet time alone…. Now I feel like I am always alone. Even when I am with others, I am alone. This is a very isolating disease. I spent almost half of a day typing in the words is…… gluten free? Or speaking with customer service reps and inquiring if their product is gluten free. Ok, so it is gluten free but how is it manufactured? Why do I feel worse instead of better the past few weeks? It makes hope such an unattainable word at times. Be hopeful…. 5 months is a long time to keep hoping that tomorrow I will feel better yet there are people who get chemo for a year. They say that if you threw your problems into a bowl and then saw everyone else’s that you would pull your own back out… would I do that?

I need to look up chronic pain and see how common it is in celiac. I just put on my smile and keep going but I am SO tired of having pain every single day of my life. SO tired of it. I used to say, “just give me one day without pain” but now I do not even know if I want that because then I would want it every day.

I know that what I have is not that bad in the grand scheme of things…. I know that with every fiber of my being. It is what comes with the disease that I am having a hard time adjusting to. Jonathan is an explorer and I already felt like I hindered that… now I feel like I have totally blown out the candle. I will become more brave with time I am sure.

A positive thought… I can now do a day of clinical without feeling like I am going to fall asleep driving home. I can go up and down the steps between two floors without feeling like my heart is going to pound out of my chest. I can go home and do housework after clinical or stop and get gas in the car without feeling like I am going to break down and cry because I am so tired.

******I stopped writing this at around 6 months. In retrospect I stopped because that was about the time of a turning point for me. I could actually run more than one errand in a day and not have to take a nap. I no longer wanted to cry if I had to stop and fill up the car with gas. My eyes quit involuntarily moving, my toes were not longer numb and I actually had days with no joint pain. Sure, I have struggled with a road trip and a vacation since then but made it to the other side and I am stronger for it. My family has still not been tested and I am not sure if they ever will. I no longer will push them as they know how I feel and that is all that I can do. I returned to a temporary job this summer working 3 or 4 days per week which is the most that I have worked in over 4 years. I never called in sick which is a new thing as well. I look in the mirror now and see a more rested person, a more content and centered person. I am no longer on-edge and agitated. I have found foods to replace the ones that I miss and I am ok with being alone or eating before I go somewhere. There is positive reinforcement because I finally feel better – both mentally and physically.

CeliAction Study Update

celiactionsept

Even when you try your best to stay gluten-free, you never know for sure if something you’ve eaten has been cross-contaminated or mislabeled until after the fact. Most people with celiac disease can relate to accidentally ingesting gluten and then paying the price later on.

Well, there is research currently underway to evaluate if an investigational drug can reduce the symptoms of unintentional exposure to gluten. If proven effective, the drug would offer a new way to manage celiac disease and supplement a gluten-free diet by reducing the risk of gluten’s impact on the body. The best part is that you have to stay on your gluten-free diet in order to participate – no gluten challenge!

The clinical research study is called the CeliAction Study and you may qualify if you:

  • Have been diagnosed with celiac disease by a healthcare professional
  • Are attempting to be on a gluten-free diet
  • Have experienced at least one moderate or severe symptom of celiac disease in the past month

If you participate in the CeliAction Study, you:

  • Will be able to maintain your current diet restrictions
  • Will be provided with study-related care at no cost
  • Do not need medical insurance to take part
  • May be compensated for time and travel
  • Will help advance medical research for celiac disease

To learn more about this research study and see if you qualify, visit www.CeliActionStudy.com
or call 1-855-3333-ACT.

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Quietly Spreading Celiac Awareness

Summer is wrapping up and right now I am preparing to send my 3 oldest kids, plus a teenage niece, back to school. Due to some pretty significant life changes I have had to put blogging on the back burner for a while. It’s been difficult to do this, as I feel very passionate about spreading Celiac awareness and writing about gluten-related issues. But as I reflect on my summer, I realize that I have had opportunities spread celiac disease awareness, and share information about celiac disease, all summer long. I’ll share a few examples with you, and as you read, I am sure you’ll find that many of you have had similar experiences.

Back in June while we were in Boston we went out to dinner with a group of friends at an Asian restaurant.  I was already one day post-glutening, so I went out with no intentions of eating anything, but I was curious to see if the restaurant had any gluten-free menu options.  I first spoke to the hostess who was excitedly able to hand me a copy of their brand new gluten-free menu. I was actually the first customer who it was given to as it was hot off the press.  As I read through the GF menu I became very confused, as I found that many Asian dishes that are usually gluten-free, like pad thai, were not listed on the GF menu (pad thai was on the regular menu), but many Asian dishes that are almost never gluten-free were on their new GF menu.  I was particularly bothered by Udon noodles being on the GF menu, as they are almost always made with wheat flour.  I approached the manager and specifically asked him what type of flour the Udon noodles were made of and he quickly replied that they were made in the restaurant out of rice flour only.  I was surprised but excited by the possibility of being able to actually eat Udon noodles during a future visit. A few minutes later the manager came over to our table, and said that he was wrong, that the Udon noodles on the GF menu were made of mostly rice flour, but that a little wheat flour was added in as well.  We were able to have a nice discussion about how sick I, or anyone else with celiac disease, would have become after eating off of his restaurant’s gluten-free menu. He proceeded to throw all of the gluten-free menus away and promised that his establishment would be much more careful if/when they ever reintroduce a gluten-free menu. Through this experience I was able to spread celiac disease awareness.

I recently went on a job interview, which I knew ahead of time was going to include a lunch, and was told that I didn’t need to worry because the local Au Bon Pain (chain that sells breads, soups, and pastries) had some gluten free options available. I explained that since I have to eat gluten free for medical reasons, that the risk for gluten cross-contamination at Au Bon Pain was too high for me, and that I would not be able to eat there (one of my worst glutening episodes ever was eating GF soup from an Au Bon Pain that was either cross-contaminated and/or mislabeled).  I was able to negotiate having the lunch in a much safer environment, where I was able to eat without getting sick, and was ultimately offered the job. I increased awareness by advocating for my own health.

Just this week I ran into a co-worker who was recently diagnosed with celiac disease, and I asked how she was doing.  When she replied, “Fine,” I could tell in her eyes that she is really not doing that well, so I specifically asked how the gluten-free diet is going.  She broke down and confided to me that she hates having to eat GF, and that she “cheats” all the time, and then feels sick and gets neurologic and psychiatric symptoms and hates her life even more.  I was able to listen emphatically,  but then we discussed how important it is for her to stay strong and not cheat, so that she does not continue to damage her body and mind.  I tried my best to increase awareness.

I have received emails from many of you with questions and numerous messages from people with celiac disease and non-celiac gluten sensitivity who are confused, feel alone, need to vent, etc. I try my best to reply to each and every message that pops up in my in box.  By doing this I try to provide support and help to increase awareness.

If life ever calms down a bit I hope to be able to return to writing and posting articles on here, and discussing the latest celiac research like I have in the past, but if it doesn’t, please know that I am here for all of you and that you can reach me via email or Facebook at any time. Although I am never going to be able to dedicate full time efforts to this page, I hope to be able to continue on with it in some capacity. Thank you for your patience and time.

 

CeliAction Study Extension

I sincerely hope to be back to blogging soon. In the meantime I wanted to let you all know that the CeliAction Study has been extended through September 2014, so it is not too late to participate. All questions and comments on this post will receive responses from a CeliAction Study representative. I hope you are all having a great summer!  -Jess

celiactionaugust

Did you know there isn’t a single drug approved to treat celiac disease? Currently, attempting a gluten-free diet is the only option recommended by doctors, but a clinical research study called the CeliAction Study is researching if an investigational drug improves any symptoms of the disease.

You may qualify for the CeliAction Study if you:

  • Have been diagnosed with celiac disease by a healthcare professional
  • Are attempting to be on a gluten-free diet
  • Have experienced at least one moderate or severe symptom of celiac disease in the past month

If you participate in the CeliAction Study, you:

  • Will be able to maintain your current diet restrictions
  • Will be provided with study-related care at no cost
  • Do not need medical insurance to take part
  • May be compensated for time and travel
  • Will help advance medical research for celiac disease

To learn more about this research study and see if you qualify, visit www.CeliActionStudy.com
or call 1-855-3333-ACT.

TEAM-gluten-free-FINAL-300x180

Going Running…and I Need Your Help!

I am excited to announce that I will be running this year’s New York City Marathon as a member of the Celiac Disease Foundation’s “Team Gluten-Free.”  Training has been going well and now that I have hit double-digit mileage for my long runs I feel comfortable sharing this with all of you. I vowed to never run another marathon after getting injured in 2013, but I could not pass up the opportunity to run and raise funds for celiac disease. My five teammates and I have each committed to raise $3500 for celiac disease education, research, and advocacy while training for the marathon on November 2nd.

I was able to resume running after a long hiatus following my celiac diagnosis in 2010 and I credit running with helping me to cope with having celiac disease and other autoimmune issues.  Just last month I added a new tab called “Running” to the top of my blog in hopes to be able to connect with other GF runners and to be able to share information. Please check it out if you are a runner and/or are interested in starting to run.

As of this morning I was $1675 away from meeting my fundraising goal.  I am asking for your help in helping me to get to $3500. Over the last few weeks I have reached out to family and friends (a huge thanks to all who have already donated) and I am now reaching out to our celiac community.  The link to my fundraising site can be found here.

Thanks so much in advance for your help and support. I look forward to representing all of us who need to be gluten-free and you will all be in my heart on marathon day. Also, please let me know if you are also planning on running or watching the NYC marathon…I would love to be able to connect in person! I plan to be in NYC from Friday through Monday of the marathon weekend.

I’ll leave you with a few of my favorite running quotes:

“Long distance runner, what you standing there for? Get up, get off, get out the door.” -Grateful Dead, Fire on the Mountain

“I don’t run because I love the feeling of running. I run because it makes me love the feeling of living.” -Bonnie Pfiester

“That’s the greatest thing about running; your greatest runs are rarely measured by racing success. They are moments in time when running allows you to see how wonderful your life is.” -Kara Goucher

 

doctorpatient

Celiac Disease: 10 Things for Doctors and Patients to Know

I came across this list on PubMed the other day, and although I posted it on Facebook, I thought it might be worth sharing on here for everyone else. It comes from an abstract titled “Celiac Disease: Ten Things that Every Gastroenterologist Should Know.” It was written by Drs. A. Oxentenko and J. Murray (from the Mayo Clinic) and published online in the journal “Clinical Gastroenterology and Hepatology” on July 19, 2014. I usually don’t like “Top 10″ lists, but it has some good information for both gastroenterologists and their patients. Just for clarification, the quoted statements come directly from the publication and the words in italics are mine.

  1. “The IgA TTG is the single best serologic test to use for the detection of celiac disease (CD).” Most celiac antibody panels (blood tests) include the TTG IgA. However, it is possible for a person to have a negative TTG IgA and still have celiac disease. False negatives can occur in small children, people with a condition called selective IgA deficiency, and in people who are tested after already starting on the gluten free diet.
  2. “Celiac disease can be recognized endoscopically, and water immersion enhances villi detection, although a normal endoscopic appearance does not preclude the diagnosis.” If an endoscopy is done to look for celiac disease, biopsies also need to be done.  The damage from celiac disease is often microscopic. I have met people whose GI doctors did endoscopies and told them they did not have celiac without doing any biopsies!
  3. “It is recommended that four biopsies be taken from the second part of the duodenum, and two bulb biopsies taken at the 9 and 12-o’clock positions to maximize the sensitivity for histologic confirmation of CD.” The intestinal damage from celiac disease can be patchy, so if not enough biopsies are done, it can be missed.
  4. “Consider serologic testing of first-degree relatives, patients with type 1 diabetes, Down’s, Turner’s and William’s syndromes, as well as those with premature osteoporosis, iron deficiency, abnormal liver biochemistries and other manifestations of CD.” First degree relatives are parents, siblings, and children of those with celiac disease.  Screening in high-risk people also needs to be repeated periodically, as celiac disease can develop at any time during one’s life.
  5. “Patients already on a prolonged gluten-free diet (GFD) should be tested for the presence of HLA DQ2 or DQ8, thereby avoiding the need for further evaluation of CD in non-allelic carriers.”This can be very helpful in people who go GF prior to being tested for celiac disease. If one does not carry the 2 main genes, the chances of having celiac disease are very low (between 1-2% of celiacs are DQ2 and DQ8 negative) and non-celiac gluten sensitivity is much more likely than celiac. 
  6. “The basic treatment of CD is a strict, life-long GFD, enabled by an expert dietitian.” Don’t think I need to explain this one!
  7. “Newly-diagnosed adults with CD should be assessed for micronutrient deficiencies (iron, B12, folate, zinc, copper), fat soluble vitamins deficiencies (vitamin D) and bone densitometry.” Osteopenia (low bone mineral density) is rather common. Vitamin and mineral levels should be assessed at follow-up appointments, as well, to make sure there has been improvement.
  8. “All patients diagnosed with CD should have clinical follow-up to ensure response and adherence to a GFD.” From what I have read, this should happen between 6 and 12 months after going on the gluten-free diet.
  9. “In those with persistent or relapsing symptoms, the robustness of the original diagnosis should be reviewed, gluten exposure sought, and a systematic evaluation for alternative and associated diseases.” I was given the opportunity to write about this problem, which is called nonresponsive celiac disease, in Gluten-Free Living magazine. You can find my article here. Although the most common cause of continued symptoms is accidental gluten exposure, In some cases people do not get better because they were misdiagnosed with celiac disease in the first place!
  10. “Evaluate those with refractory disease for malignant transformation.”  People with refractory celiac disease are at risk for lymphoma. This is why it is important to get medical follow-up if you do not get better on the gluten-free diet.

Thanks for reading! I hope you are all having a nice summer and I really appreciate your comments, emails, questions, etc. Please keep them coming!

DNA

Celiac Disease Autoimmunity

I first came across the term “celiac disease autoimmunity” a few weeks ago as I read summaries of the article “Risk of Pediatric Celiac Disease According to HLA Haplotype and Country” that was published in the July 3, 2014 issue of the New England Journal of Medicine (NEJM).

Based on my reading and interpretation of the article, it seems that celiac disease autoimmunity is interchangeable with the more commonly used term “potential celiac disease.” Both are used to describe cases in which people have abnormally high levels of celiac antibodies (TTG IgA)  in their blood but their small intestinal biopsies do not show changes consistent with celiac disease. In other words, there is an autoimmune response to gluten that has yet to cause destruction to the villi of the small intestine. For the sake of this study, the subjects had to have abnormally high TTG IgA levels on 2 separate occasions, at least 3 months apart, to be labeled as having celiac disease autoimmunity.

The results published in NEJM come from the multinational TEDDY study, which is prospectively following a large cohort of children who are at genetically at risk of developing Type 1 (juvenile) diabetes mellitus.  Since some children with both Type 1 diabetes and celiac disease share the same “at-risk” genes, HLA-DQ2 and DQ8, the researchers have also been able to follow a large group of genetically-susceptible children for the development of celiac disease. The study is ongoing and subjects are being followed for the development of both diabetes and celiac disease from infancy until age 15. This is one of many papers that have already come from the TEDDY study.

Thus far, 6403 study subjects have been found to have genes that predispose to celiac disease.  Subjects have been placed into 4 risk groups:

-HLA DQ2/HLA DQ2 (homozygous for DQ2)

-HLA DQ2/HLA DQ8

-HLA DQ8/HLA DQ8 (homozygous for DQ8)

-HLA DQ8/HLA DQ4

As you can see, the first 3 groups of kids all have 2 copies of celiac-risk genes, and the 4th group has only one copy of DQ8, so only one gene associated with celiac disease. Subjects’ testing for celiac disease autoimmunity started at age 24 months and has been repeated every year. In all, 786 of the 6403 (11%) at risk subjects were found to have celiac disease autoimmunity (elevated blood TTG IgA antibodies at least twice) at time of data analysis Overall, 25% of the children with celiac disease autoimmunity had a diagnosis of celiac disease by age 3.

The researchers broke down the risk of both celiac disease autoimmunity and celiac disease by genes and found the following risks by age 5:

Celiac Disease Autoimmunity Risk in Children with Celiac Genes by Age 5:

HLA DQ2/HLA DQ2 (homozygous for DQ2): 26%

HLA DQ2/HLA DQ8: 11%

HLA DQ8/HLA DQ8 (homozygous for DQ8): 8%

HLA DQ8/HLA DQ4: 3%

Celiac Disease Risk in Children with Celiac Genes by Age 5:

HLA DQ2/HLA DQ2 (homozygous for DQ2): 11%

HLA DQ2/HLA DQ8: 3%

HLA DQ8/HLA DQ8 (homozygous for DQ8): 3%

HLA DQ8/HLA DQ4: less than 1%

Children with both celiac disease and celiac disease autoimmunity were found to be at a higher risk of having diabetes than the general population (1% for celiac disease autoimmunity and 2% for celiac disease v. 0.3% risk for general U.S. population).

In summary, in this large study, over 25% of children with the DQ2/DQ2 genotype were found to have celiac disease autoimmunity by age 5 and greater than 10% with DQ2/DQ2 were diagnosed with celiac disease by age 5.  Over half of these children had no symptoms of celiac disease, therefore, there is a good chance that many of these diagnoses would have been missed if these children had not been subjects in this study.

After reading this article I am a much stronger proponent of genetic testing of children at risk for celiac disease, if possible. And, as my husband and I both carry genes associated with celiac disease, I feel much less guilty for making my own kids get screened for celiac disease, via TTG IgA blood testing, every 2 years (you can see my post from May 2014 for more details). Lastly, I feel much more at peace for making my at-risk youngest go through having an endoscopy and small bowel biopsy earlier this summer. The statistics from this study are definitely eye-opening.

Reference: Liu E, Lee HS, Aronsson CA, et al. TEDDY Study Group. Risk of pediatric celiac disease according to HLA haplotype and country. N Engl J Med. 2014 Jul 3;371(1):42-9.

Also, if you are a research geek like I am, here are some other interesting findings from the TEDDY study thus far (found via a Pubmed.gov search):

  • The HLA-DQ2/2 genotype may predispose to obesity among 2-4-year-old children.
  • Between 15% and 20% of the infants in the study were introduced to solid foods before the age of 4 months.
  • The median age of early-onset diabetes is at 2.3 years. 33% of the subjects with an early diagnosis of diabetes had no symptoms of diabetes.
  • Findings have not supported the presence of viremia (recent viral infection) around the time of seroconversion in young children with rapid-onset type 1 diabetes.
strawberry

Strawberry Almond Flour Blender Cake

Now that I’ve started to train for another marathon I’ve had to really focus on eating enough calories everyday. Thankfully, it’s strawberry season in my part of the world, and I recently began to make this super easy, gluten-free cake recipe to use up some of our fresh picked strawberries (I adapted it slightly from a recipe that I found on the website roostblog.com). I have not taken a photo of it to post because I keep forgetting to do so, but it looks like an ordinary 8 inch cake when it’s baked.

Strawberry Almond Flour Blender Cake

  • 1 3/4 cup almond flour
  • 1/4 tsp salt
  • 1/4 tsp baking soda
  • 2 Tbsp honey
  • 3 eggs
  • 1/2 Tbsp pure vanilla extract
  • 4 Tbsp butter
  • 1/2 cup quartered strawberries (I’ve used a bit more than this each time and it’s still good)

Preheat oven to 350F.

Grease an 8-inch round cake pan. Trace the bottom of the pan on parchment paper, cut out circle and place on bottom of pan.

Melt butter in a small pan over medium/low heat until browned. Set aside.

In a blender pulse almond flour, salt and baking soda until combined. Add honey, eggs, vanilla, and brown butter. Blend until smooth.

Pour mixture into a bowl and fold in strawberries. Pour batter into prepared cake pan. Bake for 25-30 minutes.

This is enough to serve my family of 6 generously for dessert with about 1 to 2 slices left over. I hope you enjoy it as much as we have!

Also, if you are looking for charities to support in 2014, please consider supporting those of us who are running the NYC marathon for the Celiac Disease Foundation’s Team Gluten-Free on November 2nd. I have pledged to raise $3500 for celiac research, education, and advocacy by Nov. 30th and I need your help! Thank you so much.

Lastly, I just found out that Peter and Kelli Bronski from one of my favorite websites, “No Gluten, No Problem,” have published a new gluten-free recipe book for families called Gluten-Free Family Favorites. I am looking forward to receiving my copy in the mail. Please check out their website for more details about the book and how to win a free copy.

It’s not too late to enroll in the CeliAction Study

I recently learned that the CeliAction Study will be enrolling subjects with celiac disease through the end of July 2014. The ALV003 enzyme is being studied as a treatment to augment the gluten-free diet by providing protection from gluten cross-contamination. It is also being researched as a treatment for nonresponsive celiac disease.  All questions about this post will be answered by a CeliAction Study representative. Thank you for reading!  -Jess

celiaction july

Managing celiac disease may be more than just a gluten-free diet.

A clinical research study called the CeliAction Study is researching if an investigational drug – which would be taken as a supplement to an attempted gluten-free diet – improves any symptoms of celiac disease.

You may qualify for the CeliAction Study if you:

• Have been diagnosed with celiac disease by a healthcare professional

• Are attempting to be on a gluten-free diet

• Have experienced at least one moderate or severe symptom of celiac disease in the past month

If you participate in the CeliAction Study, you:

• Will be able to maintain your current diet restrictions

• Will be provided with study-related care at no cost

• Do not need medical insurance to take part

• May be compensated for time and travel

• Will help advance medical research for celiac disease

To learn more about this research study and see if you qualify, visit www.CeliActionStudy.com or call 1-855-3333-ACT.

gluten challenge

Hope for a Less Challenging “Gluten Challenge”

The current “gold standard” tests for celiac disease include testing for celiac antibodies in patients’ blood and performing an endoscopy to obtain small bowel biopsies. In order for these tests to be accurate, one has to be eating gluten up until the time of testing.  If a patient is already on the gluten-free diet when these tests are done, the diagnosis of celiac disease can easily be missed.

Since starting this page I’ve encountered many people who have decided that they’d like to be tested for celiac disease after starting on the gluten-free diet.  Per the celiac disease experts, a “gluten challenge” must be performed in these cases to assist in the diagnosis of celiac disease. A gluten challenge requires eating foods containing gluten for a prescribed period of time prior to an endoscopy and/or blood testing for celiac disease. The length of time and amount of gluten that need to be consumed for a gluten challenge vary from source to source. Here are some examples of different recommendations for a gluten challenge (current as of July 5, 2014):

University of Chicago Celiac Disease Center: “For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge. Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy.”

Celiac Disease Center at Columbia University: “In individuals who are willing to further pursue the question of whether they have celiac disease, we will advise a gluten challenge. This consists of ingesting at least 4 slices of bread a day for one to three months followed by an endoscopy and biopsy. There is no evidence that following antibody tests is beneficial in establishing a diagnosis of celiac disease because these tests are not sensitive in this setting.”

Celiac Disease Center at Beth Israel Deaconess Medical Center: “Gluten is reintroduced into the diet and after a period of time (ideally 6 to 8 weeks if the challenge can be tolerated for that long) blood tests and an intestinal biopsy are performed. If the gluten challenge is not tolerable for the full 8-week period blood tests and biopsy can be performed sooner but this can lead to a false negative result.”

In addition, Dr. Leffler and colleagues published a paper in 2013 showing that the majority of patients with celiac disease will test positive after eating >3g gluten/day for 2 weeks. A typical piece of wheat bread contains about 5g of gluten.

Despite all of the confusion, there is hope on the horizon for a shorter gluten challenge in the future.  Researchers at the Walter and Eliza Hall Institute in Australia have been developing a blood test that measures gluten-reactive T cells, immune cells that increase in response to gluten in those with celiac disease, via cytokine release assays.  In a pilot study published earlier this year, patients with celiac disease had a significant jump in blood levels of gluten-responsive T cells, compared to controls, after only 3 days of consuming gluten. Per Dr. Jason Tye-Din, one of the researchers working on this test, “We hope that larger studies can validate these findings and establish its role in the diagnosis of celiac disease.” For the sake of my gluten-light kids, and everyone else who is in a similar situation in regards to diagnosis, I hope he is right.

A press release regarding the study can be found here.

Out of curiosity, have any of you been diagnosed with celiac after doing a gluten challenge? If so, do you remember how much gluten you had to eat and for how long prior to testing?

Full reference:

Ontiveros NTye-Din JAHardy MYAnderson RP. Ex-vivo whole blood secretion of interferon (IFN)-γ and IFN-γ-inducible protein-10 measured by enzyme-linked immunosorbent assay are as sensitive as IFN-γ enzyme-linked immunospot for the detection of gluten-reactive T cells in human leucocyte antigen (HLA)-DQ2·5(+) -associated coeliac disease. Clin Exp Immunol. 2014 Feb;175(2):305-15.

 

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Updated Guidelines on the Diagnosis and Management of Adult Celiac Disease

I tried to abstain from reviewing celiac disease research for my 10 day vacation to Massachusetts and failed (proving that I am a big nerd). Earlier today when I checked out Pubmed.gov I came across a June 10th publication entitled “Diagnosis and management of adult coeliac disease: guidelines from the British Society of Gastroenterology.” This paper summarizes recommendations and information from a panel of 21 worldwide celiac disease experts.  You can find the entire article here. If you have the time, the entire article is worth reading.

As I read I learned some new facts, figures, and celiac disease information:

6-22% of cases of celiac disease are seronegative. This means that between 6-22% of people with celiac disease do not have abnormally high antibodies on celiac blood screening tests but do have abnormal small intestinal tissue on biopsy.

First degree family members of celiacs (parents, siblings, and children) have a 16-fold increased risk of also developing celiac disease if they are HLA-DQ2 positive on celiac gene testing.

If a patient has abnormally high celiac disease antibodies, but a normal small bowel biopsy when endoscopy is done (no signs of celiac), then some of the experts recommend that endoscopy be repeated so that jejunal biopsies can be performed. The jejunum is the 2nd portion of the small intestine and is not normally biopsied when a patient is evaluated for celiac disease.  Video capsule endoscopy can also be used in equivocal cases.

Biopsy reports should include all of the following (this is a bit technical but important for those of us who have copies of our own reports, and/or our family members’):

  • Number of biopsies (including those from the duodenal bulb) and orientation.
  • The architectural features (normal, partial, sub-total or total villous atrophy).
  • Comment on the content of the lamina propria (in CD these are lymphocytes, plasma cells and eosinophils, and occasionally neutrophils, but cryptitis and crypt abscesses should suggest other pathology).
  • Presence of Brunner’s glands.
  • Presence of crypt hyperplasia, villous height: crypt depth ratio (3:1).112 The absence of plasma cells suggests common variable immunodeficiency.
  • Evaluation of IELs (with immunocytochemical staining for T cells (CD3) in equivocal cases) is vital.

After diagnosis with celiac disease, adults should be followed-up annually with all of the following: complete blood count, ferritin, folate, Vitamin B12, calcium and alkaline phosphatase levels, thyroid function testing and glucose levels, liver function tests, and celiac antibody levels. In the absence of symptoms, having a follow-up biopsy appears to be controversial. Most of the experts recommended that it be done between 2 and 5 years after diagnosis. 6 months after diagnosis definitely appears to be too soon.

In regards to a gluten challenge, the authors stated: “To perform a gluten challenge, a recent study recommends a 14-day gluten intake at ≥3 g of gluten/day (two slices of wheat bread per day) to induce histological and serological changes in the majority of adults with CD. The challenge can be prolonged to 8 weeks if serology remains negative at 2 weeks.”

In conclusion, this paper is a comprehensive overview of the latest and greatest in regards to celiac disease in adults.  Now that I’ve discussed it I am going to return to my vacation! Hope that you’re all having a good summer thus far. Please let me know if you come across any interesting articles, research, etc.

Reference:

Ludvigsson J, Bai J, Biagi F, Card TR, Ciacci C, Ciclitira PJ, Green P, Hadjivassiliou M, Holdoway A, van Heel DA, Kaukinen K, Leffler DA, Leonard JN, Lundin KE, McGough N, Davidson M, Murray JA, Swift GL, Walker MM, Zingone F, Sanders DS; Authors of the BSG Coeliac Disease Guidelines Development Group. Diagnosis and management of adult coeliac disease: guidelines from the British Society of Gastroenterology. Gut. 2014 Jun 10. pii: gutjnl-2013-306578. doi: 10.1136/gutjnl-2013-306578. [Epub ahead of print]

 

The Scope is Clear (At Least for Now)

clairebear1

Claire is the youngest of our four children and was the first born after my diagnosis with celiac disease. She was a very healthy baby and I can’t recall her having any health issues during her infancy other than one or two mild colds and a touch of constipation.  Then, when she was about a 13 months old she began to have very high fevers, up to 104.5-105 F, that would come out of the blue and last between 2 and 5 days.  During these fevers she would have no other signs or symptoms of infection (i.e. rashes, vomiting, cough), she looked good, and, for the most part, her blood and other lab tests were normal. She had 9 or 10 total episodes of fever without a source during her 2nd year of life. Celiac disease was always in the back of my mind but I could not link her fevers with eating gluten. Although our home is 100% gluten-free, my kids do eat gluten outside of the home, in part so that I can keep tabs on whether or not they develop symptoms after eating it.

Claire’s fevers stopped in December, only to be replaced by episodes of diarrhea. Her poop was tested for bacteria, parasites, white blood cells, and all kinds of other good stuff.  I opted out of blood screening labs for celiac disease at this point as 1.) The celiac antibody panels are not often reliable in her age group, especially in kids who are “gluten-light” at baseline like Claire was, 2.) I couldn’t bear the thought of making her go through any more blood draws after all the times she’d had to be poked for her fevers, and 3.) I did not want her to have to go through a gluten challenge to get a reliable small bowel biopsy via endoscopy (since she was eating such small amounts of gluten at baseline). Our gut instinct was that her system was reacting to something in her diet. So, we put her on a gluten-free and milk-free diet in January, started her on a high-potency probiotic, and, her poops become normal and the fevers did not return.

Our oldest daughter had a milk protein allergy during infancy, so I prayed that Claire’s symptoms were from a milk protein intolerance of some sort, as most kids outgrow this. However,  when we re-introduced milk, none of Claire’s symptoms returned. But when she accidentally ate gluten the diarrhea and abdominal bloating returned on 2 separate occasions.  And then, when we let her eat a non-GF chicken nugget in April on purpose, both the diarrhea and fever returned with a vengeance.

Although I wanted to be able to keep Claire gluten-free forever, I knew that it was time for her to be formally evaluated for celiac disease.  As a doctor, I feel very uncomfortable trying to diagnose my own kids with anything. It seemed that she was sensitive to gluten, but in order to diagnose a child with non-celiac gluten sensitivity, I knew that celiac disease needs to be ruled out.

We met with a pediatric gastroenterologist named Dr. N who is affiliated with a very well-respected tertiary children’s hospital. Dr. N was phenomenal and very knowledgeable about celiac disease. He assured me that he would take enough duodenal biopsy samples (at least 5) and that he would include the duodenal bulb (in some cases, this is the only part of the small intestine where the damage from celiac can be found). He agreed that even if Claire’s small bowel biopsy showed only Marsh 1 damage (mildest findings seen in celiac disease) that he would give her a celiac diagnosis based on her symptoms and family history. We began to give Claire foods with gluten to eat, and for weeks she enjoyed non-GF pizza, Oreos, ice cream with cereal bits on top, and all kinds of other treats that she does not normally eat. Interestingly enough, she did not develop diarrhea but instead became mega-constipated. She did not develop a fever. I almost cancelled the biopsy at this point but decided to go through with it as Dr. N. said that he’d seen this happen with previous gluten challenges in kids who ended up having celiac disease.

Claire could only have clear liquids on the morning of the scope, so all four of our kiddos drank white grape juice and ate yellow jello and popsicles for breakfast. I let her watch Frozen during the 2 hour drive to the hospital. Claire was in great hands with the nurses, anesthesiologist, and other staff who we met at the children’s hospital on the morning of her endoscopy. She was given a medication called Versed which made her sleepy and 20 minutes later they wheeled her away to the O.R. The entire procedure took 15 to 20 minutes and we were reunited about half an hour later when she woke up.  She was a bit cranky at this point, much like she would have been if we woke her from a deep sleep at home, but soon after she was drinking juice and eating peanut butter out of little individual cups with a spoon.  She then ate a huge bowl of GF mac and cheese followed by about 8 cookies. Two hours later she was running around outside in the sunshine, sharing a GF pizza from California Pizza Kitchen with me, and as happy as could be, and since then she seems to have total amnesia for the entire experience. Thankfully.

We received results 4 days later that her duodenal biopsies were normal and did not show celiac disease.  Since the biopsy results came back she has eaten gluten several times without getting ill or having digestive symptoms. I am glad that we went through with the testing. I’m not sure that this will last forever (just because she doesn’t have celiac disease now doesn’t mean that she won’t develop it in the future) and I have no idea why she was having the diarrhea or fevers, but for now I am grateful.

Out of curiosity, has anyone else had a toddler who seemed to have reactions to gluten that disappeared?

 

Update on the CeliAction Study

The CeliAction Study will be continuing to enroll subjects with celiac disease through this summer. This medication has the potential to help many of us with celiac disease. All questions and comments will be answered by a CeliAction study representative, as this is a sponsored post. Thank you for reading!   -Jess

celiaction

 

National study to help advance celiac disease research

The CeliAction Study is a clinical research study designed to evaluate an investigational drug for celiac disease. The study will explore whether the investigational drug is able to improve the damage in the lining of the intestine caused by ingesting even small traces of gluten. The study will also evaluate whether the investigational drug improves any symptoms of celiac disease.

You may qualify for the CeliAction Study if you:

  • Have been diagnosed with celiac disease by a healthcare professional
  • Are attempting to be on a gluten-free diet
  • Have experienced at least one moderate or severe symptom of celiac disease in the past month

There are other criteria that you must meet to qualify for participation. The study staff will explain the requirements to you and answer any of your questions.

As a volunteer in a clinical trial, you may:

  • Participate in a research process that may lead to new treatment options
  • Learn new information about your health
  • Receive study-related care from qualified physicians

To learn more about this research study, visit CeliActionStudy.com or call 1-855-3333-ACT.

Easy Gluten-Free Strawberry Rhubarb Cobbler Recipe

ID-10083685

With our garden blooming, as well as our summer Community Supported Agriculture (CSA) share and local farmers’ markets starting up, we’ve had a steady supply of rhubarb over the last few weeks. So I’ve been making cobbler. I adapted my recipe from one that I found on the website “The Fountain Avenue Kitchen.”

Ingredients:

  • 3 cups of chopped rhubarb (cut stems into 1/2-inch pieces and discard leaves!)
  • 1 pint strawberries, halved or quartered depending on size
  • 1/3 cup sugar
  • 1 tablespoon cornstarch
  • 1 cup old-fashioned GF oats (I use Bob’s Red Mill)
  • 1 cup almond flour (preferably blanched; I use Honeyville Farms almond flour)
  • 1/2 cup sugar
  • 1/2 teaspoon ground ginger
  • 2 egg whites
  • 2 tablespoons melted butter

 Directions:

  1. Preheat oven to 350 degrees F.
  2. Place the rhubarb and strawberries in a 9-inch pie plate. Toss the fruit with the 1/3 cup sugar and 1 tablespoon cornstarch.
  3. In a medium bowl, mix the oats, almond flour, 1/2 cup sugar, and ginger. Add the egg whites and butter, and stir until blended.
  4. Spread the mixture evenly over the fruit mixture. Try to leave at least a tiny gap between the topping and the edge of the pie plate.
  5. Bake for 35-40 minutes or until the rhubarb is bubbling and the topping is crisp and lightly golden. Allow the cobbler to rest for 5 minutes or so. Enjoy hot or at room temperature, with whipped cream, vanilla ice cream, or frozen yogurt, if desired. I actually eat my plain. I have eaten a lot of this cobbler over the last few weeks!

I feel like this blog has turned into my neglected 5th child over the last few weeks. If I haven’t responded to your comments and/or emails, I will do so soon. Also, stay tuned for upcoming posts about a project called Pasta Flyer, the CeliAction Study, cow’s milk protein allergies, non celiac gluten sensitivity, celiac disease and brain fog, and my opportunity to run the NYC Marathon in November for the Celiac Disease Foundation’s “Team Gluten-Free.” I hope that you’re all enjoying your summer!  -Jess

gab

Frequency of Screening for Celiac Disease in Children with Siblings and/or Parents with Celiac Disease

I had the opportunity to moderate a discussion on celiac disease in children during my local celiac support group meeting last week.  One of the topics that we discussed was how often the siblings (or children) of those with celiac disease need to be screened. Research has shown that between 5 to 10% of first degree relatives of those with celiac disease will eventually develop it, and there is consensus that all at-risk children need to be tested at least once.

I have opted to have all of my kids screened with celiac antibody panels starting at age 4, in the absence of symptoms, and then we’ve planned on having them re-screened every 2 to 3 years, as we know that celiac disease can develop at any time during life. That being said, as my group discussion continued, I felt sort of dumb, as I was unable to recall where I had heard the advice about repeated screening of at-risk children. And I started to worry that perhaps I am having my kids tested too often…if you are new to my blog, you will learn that I get a bit neurotic about things from time to time.

My youngest, Claire, went to see her pediatric gastroenterologist a few days after the support group meeting, and he told me that he recommends that all siblings of Celiacs have an initial celiac antibody panel done, but that he recommends repeat testing only if symptoms develop.

I became more confused, so I decided to explore PubMed as well as the internet, to see what I could find…

The first article that I came across is called “Screening for Celiac Disease in Family Members: Is Follow-Up Testing Necessary?” written by Drs. Goldberg, Kryszak, Fasano, and Green and published in 2007. They found that of 171 family members who were negative for celiac disease on initial screening, 3.5% did have elevated celiac antibodies on repeat testing. The average time interval between the normal baseline celiac screening tests and development of celiac disease was 1.7 years. Interestingly enough, in this study, most of the family members who developed celiac disease did not have any symptoms. Based on their results, the authors of this study suggested that at-risk family members be screened every 4 to 5 years. Unfortunately, I was unable to find any other studies that have examined this topic.

The University of Chicago Celiac Center recommends that testing in at-risk individuals occur on a regular or periodic basis. According to another one of my other favorite celiac websites, CeliacCorner, “Some Celiac research centers recommend screening only for family members who are symptomatic, though this is not a consensus among the medical community.   It is agreed upon that children should be screened, because they may be too young to describe symptoms accurately. Important to note: Even if the antibody blood test is negative at the time of initial testing, Celiac can be triggered later at any point in life, so follow-up testing should occur for family members, certainly if experiencing classic gastrointestinal symptoms.” However, I was unable to find information on the recommended time interval between screening tests.

Do any of you have any resources and/or guidance for how often at-risk children, without symptoms, need to be screened for celiac disease? Am I having my kids tested too often, or not often enough? Any advice would be much appreciated. Thank you!

Also, if you are reading this because you are trying to figure out whether or not your child needs screened for celiac disease in the first place, you can check out my post from 2013.

The CeliAction Study Continues to Seek Subjects with Celiac Disease

This is the 3rd of four sponsored posts on my page about the CeliAction Study.  The CeliAction Study is seeking people with celiac disease to enroll in their study of ALV003, a drug to prevent intestinal damage and symptoms from accidental gluten cross-contamination. All comments and questions will be replied to by a CeliAction study representative. Thank you and I hope you are all well. -Jess

CAstudymidmay

Even when you try your best to stay gluten-free, you never know for sure if something you’ve eaten has been cross-contaminated or mislabeled until after the fact. Most people with celiac disease can relate to accidentally ingesting gluten and then paying the price later on.

Well, there is research currently underway to evaluate if an investigational drug can reduce the symptoms of unintentional exposure to gluten. If proven effective, the drug would offer a new way to manage celiac disease and supplement a gluten-free diet by reducing the risk of gluten’s impact on the body. The best part is that you have to stay on your gluten-free diet in order to participate – no gluten challenge!

The clinical research study is called the CeliAction Study and you may qualify if you:

  • Have been diagnosed with celiac disease by a healthcare professional
  • Are attempting to be on a gluten-free diet
  • Have experienced at least one moderate or severe symptom of celiac disease in the past month

If you participate in the CeliAction Study, you:

  • Will be able to maintain your current diet restrictions
  • Will be provided with study-related care at no cost
  • Do not need medical insurance to take part
  • May be compensated for time and travel
  • Will help advance medical research for celiac disease

To learn more about this research study and see if you qualify, visit CeliActionStudy.com
or call 1-855-3333-ACT.

Celiac Books and a Toolkit

Celiac Awareness Month is already halfway over, which seems mind boggling to me, as I feel like May just began. Since May started we’ve celebrated family birthdays, a First Communion, Mother’s Day, and I ran as part of a 200 mile relay from just south of Boston to Cape Cod. I’ve also worked similar hours to when I was in my medical training.  I am ready for things to slow down a little and cannot wait for summer to arrive to spend more time with my kids, travel, go to the beach, etc.

During this past month I have also come across a few resources and books that I thought might be helpful to some of you.

The first is the National Foundation for Celiac Awareness 2014 Celiac Awareness Month Toolkit.

Microsoft Word - CAM Toolkit 2014

It is full of helpful information that you can share with others including celiac fact sheets, recipes, profiles, blogs and webpages to follow, etc. It also includes information cards to give to relatives who need to be tested and screened for celiac disease. I am planning on sharing it with some of my family members who have finally decided to be tested. You can download the free toolkit PDF here.

The 2nd is the book “Mommy, What is Celiac Disease?” by Katie Chalmers.

chalmers

This is an excellent resource for teaching children about celiac disease, what gluten actually is, that some patients with celiac disease may have different symptoms than others, and that there are tons of delicious gluten-free foods that kids with celiac disease can eat after diagnosis.  My favorite quote is near the end of the book: “So, remember to think positive and look at the sunny side of Celiac.  Other than some food, everything else about your life will be just like other kids.”  I need to remind myself of this all of the time! Thank you, Katie, for sending me a free copy of your book to review. My children and I have read it many times and it couldn’t have arrived at a more perfect time for us.

The 3rd is Jennifer Esposito’s new book “Jennifer’s Way: My Journey with Celiac Disease—What Doctors Don’t Tell You and How You Can Learn to Live Again.”

JWay

In the first part of her book Jennifer tells the story of her lifelong battle with undiagnosed celiac disease. Like Jennifer I had a 20+ year delay in diagnosis, and I was able to relate to many of her experiences. The second part of the book discusses the medical and practical aspects of celiac disease diagnosis. I found chapter 17, titled “After diagnosis: what next?” to be an excellent resource for the newly diagnosed.  The last section has some great recipes that I am looking forward to trying, including one for spaghetti squash, kale, and tomato, and one for apple ginger breakfast bars.  Jennifer provides inspiration and hope for those of us who have been diagnosed. She also opened a 100% gluten free bakery in New York City last year called Jennifer’s Way, which I look forward to checking out this summer.

Have any of you discovered any new Celiac books or resources recently? If so, please share, as I am always looking for suggestions for books to read, web pages to check out, etc.

I am also still seeking recommendations for gluten-free bakeries in the Cleveland, OH area for my bakery-deprived kids. The last time I was in a bakery in Cleveland it was a gluten-filled one prior to my diagnosis.

Thank you and happy (almost) summer! There will be more on the Celiaction Study later this week…the latest update I received is that they will be recruiting subjects until well into June or July.

Neurogluten

Gluten-Related Neurologic Symptoms in Children

There is a well-established relationship between celiac disease (and non-celiac gluten sensitivity) and the development of neurologic problems in adults.   According to Dr. Marios Hadjivassiliou, a neurologist in the UK who is one of the world’s experts in this area, up to 50% of adults with newly diagnosed celiac disease have signs or symptoms of neurological problems. I have personally experienced a peripheral neuropathy (nerve damage) as a result of celiac disease and it was my neuropathy that prompted me to start writing about my experiences in 2012 (see link).  If you are interested in learning more about gluten-related neurologic problems in adults, I urge you to read Christine Boyd’s article “Gluten and Your Brain” in the April/May 2014 issue of Living Without Magazine. I was fortunate to be interviewed for Ms. Boyd’s story, and the article contains a wealth of information from experts, including Drs. Fasano and Hadjivassiliou.

Although there is definitely a link between gluten-related disorders and nerve and brain problems in adults, much less in known about the neurologic signs and symptoms in children with gluten sensitivity. This may be in part due to a 2008 paper in the Journal of Pediatrics that concluded that neurologic problems in children with celiac disease are rare. I have personally interacted with many parents of children with both celiac disease and non-celiac gluten sensitivity who have had their children’s neurologic and behavioral symptoms improve on the gluten-free diet.  In addition, in just the last few weeks, there have been several published case reports regarding gluten-induced neurologic problems in kids. If you are interested in learning about the case reports, I have summarized them below:

  1. The 1st case report is of a 15 year old girl with celiac disease who developed a peripheral neuropathy out of the blue that consisted of weakness and a pricking sensation in her legs.  It was discovered that she had been accidentally eating biscuits that contained gluten for about 2 months prior to the neuropathy starting.  Her neuropathic symptoms resolved when she stopped eating the non-GF biscuits (see reference #3).
  2. The 2nd case report is of a 3 year old girl who developed an acute disseminated encephalomyelitis (brain inflammation) and white matter lesions that were visible on her brain MRI. After going on the GF diet her neurological symptoms resolved and the white matter lesions stopped growing in size (see reference #4).
  3. The 3rd case report is of a 2 year old boy with epilepsy who continued to have seizures despite being on multiple seizure medications.  He did not have any digestive symptoms, outside of canker sores in his mouth, but was found to carry one of the 2 main celiac genes (HLA-DQ8).  Within 6 months of being on the GF diet, his seizures improved, his EEG became normal, and he was able to be weaned off of all his seizure medications (see reference #5).

According to Dr. Guandalini, the founder and medical director of The University of Chicago Celiac Disease Center, who wrote a recent review article about celiac disease in children, neurologic signs and symptoms of celiac disease in the pediatric population can include all of the following: cerebellar ataxia, recurring headaches, peripheral neuropathy, seizures, and psychiatric disorders, including anxiety, panic attacks, and depression.

In writing and sharing this post I am not trying to state that all neurologic problems in kids are as a result of gluten, as this is clearly not the case.  I am sharing this information in hopes that both celiac disease and non-celiac gluten sensitivity may be on both parents’ and doctors’ radars when neurologic signs and symptoms appear in kids, as well as to help prevent others from having a long delay in diagnosis like I did.

Thank you for reading and please feel free to share your personal experiences in the comments section.

References:

Hadjivassiliou, M, Sanders, D, Grubewald, R, et al.  Gluten sensitivity: from gut to brain.  The Lancet. March 2010. 9: 318-330.

Ruggieri MIncorpora GPolizzi A, et al. Low prevalence of neurologic and psychiatric manifestations in children with gluten sensitivity. J Pediatr. 2008 Feb; 152(2):244-9.

Boskovic AStankovic I. Axonal and demyelinating polyneuropathy associated with celiac disease. Indian Pediatr. 2014 Apr 8; 51(4):311-2.

Jorge RAguiar CEspinheira C, et al. A pediatric case of gluten sensitivity with severe neurological presentation. Eur J Pediatr. 2014 May 13. [Epub ahead of print]

Bruni ODosi CLuchetti A, et al. An unusual case of drug-resistant epilepsy in a child with non-celiac gluten sensitivity. Seizure. 2014 Apr 18. pii: S1059-1311(14)00106-X. doi: 10.1016/j.seizure.2014.04.005. [Epub ahead of print]

The CeliAction Study

A significant percentage of patients with celiac disease continue to have gastrointestinal symptoms and/or small bowel inflammation while on the gluten-free diet. The Celiaction Study is recruiting subjects with celiac disease to test a medication that will help improve symptoms of celiac patients who are already on the gluten-free diet. Since this is a sponsored post, all questions will be answered by a CeliAction Study representative. Thank you!  -Jess

celiaction

Did you know there isn’t a single drug approved to treat celiac disease? Currently, attempting a gluten-free diet is the only option recommended by doctors, but a clinical research study called the CeliAction Study is researching if an investigational drug improves any symptoms of the disease.

You may qualify for the CeliAction Study if you:

  • Have been diagnosed with celiac disease by a healthcare professional
  • Are attempting to be on a gluten-free diet
  • Have experienced at least one moderate or severe symptom of celiac disease in the past month

If you participate in the CeliAction Study, you:

  • Will be able to maintain your current diet restrictions
  • Will be provided with study-related care at no cost
  • Do not need medical insurance to take part
  • May be compensated for time and travel
  • Will help advance medical research for celiac disease

To learn more about this research study and see if you qualify, visit www.CeliActionStudy.com
or call 1-855-3333-ACT.

“Gluten intolerance” can actually be subclinical celiac disease

glutenintolerant

I think most of us have met people who have symptoms of celiac disease, but when tested, are told that their celiac antibody blood tests and biopsy results are negative (normal). Some of these people are labeled “gluten intolerant” or “gluten sensitive” by their doctors, others are told they may have “early” celiac disease, or “pre” celiac disease, and the rest are told that they have nothing wrong and are often advised to continue to eat gluten.  Many continue to eat gluten and find themselves getting sicker and sicker, with an improvement or disappearance of symptoms when they go gluten-free.  Then, when they go gluten-free, since they are “gluten intolerant” as opposed to having celiac disease, it is unclear how closely they need to be followed for vitamin deficiencies, the development of additional autoimmune disorders, and other problems that are associated with long-standing celiac disease.

Whenever I hear that a person is “gluten intolerant” I wonder whether or not the diagnosis of celiac disease was actually missed.  Celiac blood antibody testing can be unreliable in infants and toddlers, people who have a condition called serum IgA deficiency (occurs in up to 3% of celiacs), and when patients are tested after they have already started on the gluten-free diet. Likewise, endoscopies and biopsies are often done incorrectly (see link) which can lead to celiac-induced intestinal damage being missed.

I recently read, with much interest, an article called, “Intestinal-mucosa anti-transglutaminase antibody assays to test for genetic gluten intolerance,” which was published this month by a group of celiac researchers in Italy. Although it’s a bit technical, I will do my best to summarize it for you.

In this study, the gluten-intolerant subjects consisted of 78 pediatric patients who had symptoms of celiac disease but normal celiac antibodies (anti-TTG, also called TTG IgA) and normal small bowel biopsies.  None of the subjects were IgA deficient. Of the 78 gluten intolerant subjects, 12 were found to have anti-TTG antibodies present in the tissue biopsies from their intestines–to clarify, anti-TTG antibodies were found in their intestines, but not in their blood. 3 of the 12 patients in this “gluten intolerant” group, with TTG antibodies localized to the intestine only, were started on a GFD diet and they all had improvement in symptoms and anemia after 24 months on the gluten-free diet. Of the 9 patients with anti-TTG antibodies in the intestines who were continued on a gluten-containing diet, 2 of the 12 had celiac disease at 24 month follow-up. The remaining 7 “gluten intolerant” subjects who remained on gluten-containing diets appeared to have an improvement in symptoms at the 24 month mark, but it is unclear if this reflected a period of remission v. a true resolution of the intestinal antibody response, as there has been no long term follow-up, and as far as I can tell, biopsies were not repeated.

Although this study has a very small sample size, it demonstrates that there are some “gluten intolerant” patients who actually have subclinical celiac disease. In these cases, the celiac immune response is contained to the intestines only and villous atrophy (the hallmark of celiac disease) has not yet occurred. It appears that these individuals benefit from treatment with the gluten free diet.

I am curious to see if the long-term follow-up of the remaining 7 gluten intolerant subjects will be published in the future, and if some of them will also go on the develop celiac disease. I am also curious to see if celiac antibody testing of intestinal biopsy specimens will eventually become part of the standard of care in the clinical investigation of celiac disease.

Reference:

Quaglia, S, De Leo, L, Ziberna, F, et al. Intestinal-mucosa anti-transglutaminase antibody assays to test for genetic gluten intolerance. Cellular and Molecular Immunology advance online publication, 28 April 2014; doi:10.1038/cmi.2014.32.

My Kids are Bakery-Deprived

We just returned from a spending a week in Florida to celebrate Easter with my grandparents. As we were flying back I asked my 3 oldest kids what their favorite part of the trip was, expecting that the one thing they’d agree on would be “playing at the beach,” “exploring the park with four playgrounds,” or “going to the Easter egg scramble.”  Instead, they all agreed that their favorite experience was actually going to a bakery. On our very first day in Florida we went to a gluten-free restaurant and bakery in Melbourne Beach called The Bald Strawberry. Since it was just a few days before Easter, the glass display cases at The Bald Strawberry were filled with cupcakes, and cookies, tortes, and macaroons, and we let each of the kids pick out a treat to take home.

bald strawberry

We somehow ended up with an extra chick cupcake, which I gladly ate, but since I’m not used to eating sugar anymore, found to be very sweet.

Although I had spent my entire childhood going to bakeries with my mom, for my kids the Bald Strawberry was a novel experience. I realized that since my celiac diagnosis 4 years ago, all of my GF bakery experiences (Sweet Marie’s, Pip’s Place, Happy Bellies Bakeshop) have been when traveling without kids. As far as I know, my kids had not even stepped foot in a bakery since our entire family went gluten-free in 2012.

So, I am asking for your help. This summer we plan to travel to Boston, NYC, Cleveland, Madison, WI, and Chicago. Do any of you have dedicated GF bakery recommendations for any of these cities? I appreciate your help in advance, as do my 4 little ones, as you will help them to overcome their bakery deprivation.

Also, as a total aside, my grandparents are celebrating their 67th wedding anniversary this summer! Congratulations G&G!

 

An Introduction to the CeliAction Study

This is the first of a series of sponsored posts about the Celiaction Study on my page. Since being diagnosed with celiac disease in 2010 I have been patiently waiting for treatment options to augment the GF diet.  Although I eat strictly GF and am safely able to do so in my home, I am at risk of gluten cross-contamination whenever I travel and/or eat outside of my home.  The enzyme being studied has the potential to reduce intestinal damage from gluten cross-contamination, and is also being evaluated as a treatment for those with nonresponsive celiac disease.  All comments and questions will receive a response from a Celiaction Study representative. -Jess

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Managing celiac disease may be more than just a gluten-free diet.

A clinical research study called the CeliAction Study is researching if an investigational drug – which would be taken as a supplement to an attempted gluten-free diet – improves any symptoms of celiac disease.

You may qualify for the CeliAction Study if you:

  • Have been diagnosed with celiac disease by a healthcare professional
  • Are attempting to be on a gluten-free diet
  • Have experienced at least one moderate or severe symptom of celiac disease in the past month

If you participate in the CeliAction Study, you:

  • Will be able to maintain your current diet restrictions
  • Will be provided with study-related care at no cost
  • Do not need medical insurance to take part
  • May be compensated for time and travel
  • Will help advance medical research for celiac disease

To learn more about this research study and see if you qualify, visit CeliActionStudy.com
or call 1-855-3333-ACT.

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Dr. Fasano’s Gift of Gluten Freedom

Dr. Alessio Fasano, founder and director of the Center for Celiac Research at Massachusetts General Hospital, is one of the world’s leading experts in celiac disease and non-celiac gluten sensitivity. Without his dedication and research, there’s a good chance that many of us with celiac disease would still be walking around undiagnosed and chronically ill. As I have stated before, he is one of my heroes.

I had the fortune to read Dr. Fasano’s brand new book, Gluten Freedom, as I sat at O’Hare airport earlier this week due to a flight delay.   It made for one of the most fascinating flight delay experiences of my life.

Gluten Freedom explains the history of celiac disease, celiac disease awareness in the medical community, and the amazing leaps in celiac research over the past two decades.  Most significant research findings related to celiac disease are discussed and summarized in an easy to read manner. Dr. Fasano shows how celiac disease can have effects on all areas of the body, not just the digestive system, and discusses new research on the neurological and psychiatric/behavioral effects of gluten.  Non-celiac gluten sensitivity is discussed in depth as well, and Dr. Fasano makes it clear that non-celiac gluten sensitivity is a separate diagnosis from celiac disease that occurs in up to 6% of Americans. In addition, Dr. Fasano paints us a picture of why not all of us are successful on the gluten free diet, and justifies the need for additional medical treatment options for celiac disease.

My favorite part of the book was Part 3, in which the chapters deal with living with celiac disease during specific phases of life, including pregnancy, childhood, college, and the elderly years. A lot of the questions I have had others ask about me about being gluten free during pregnancy are discussed in this book.

One of my favorite quotes was Dr. Fasano’s discussion of what happens at the time of diagnosis. He states, “As a physician, I’m very sympathetic with this complex combination of emotions.  I never minimize the feelings of someone who has just realized that his or her life has been changed forever by this restriction on one of the most enjoyable activities of humankind, that is, eating.” He truly “gets it” like I wish other doctors would.

Although I’d love to be able provide a summary of the entire book for you, like I often do for journal and research articles, I cannot, as my post would end up being about 500 pages long!  If possible, I urge you to read this book on your own.  No matter what age you are, or where you are in your gluten-free journey, you will be helped by the information in it and will gain a better understanding of your medical condition.

Although the hardcover version of Gluten Freedom will not be available until April 29th, the Kindle version is already available on Amazon.com for $11.99. If you can swing it, it is money well spent, I promise.

And Dr. Fasano, if you (or one of your representatives) ever do read my post, thank you for all you’ve done and continue to do for all of us with gluten-related disorders.  We truly appreciate it!

 

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Happy Gluten-Free Spring

I intended for this post to be an overview of a recent review article about celiac disease written by three prominent celiac researchers in the UK, Drs. Mooney, Hadjivassiliou, and Sanders. However, after just doing 7 hours of online continuing medical education modules, my heart and brain are not cooperating, and I am also ready to throw my laptop out the window. So I’m going to shorten my post by quite a bit and save the life of my computer…

Below are the “take home” messages of the article, as well as some interesting comments on the original article that were published by another physician. Please bear in mind that I am “translating” from medical terminology to lay terminology, so if anything seems confusing, just post a comment and I will clarify.

1. The prognosis for celiac disease is good and those with celiac have a normal life expectancy.

2. The gluten free diet is currently the only treatment for celiac disease (this is the only 1 of the 6 that I was told when I was diagnosed).

3. Although the risk of lymphoma is greater than the general population, it is small, and being on the gluten free diet reduces the risk of lymphoma.

4. The average celiac patient has low bone mineral density, therefore, adequate vitamin D and calcium intake must occur.

5. If patients do not get better on the gluten free diet, then they need to seek medical advice as this indicates that there is either ongoing gluten exposure, or another condition that needs to be evaluated.

6. Close family members have a 1 in 10 chance of also having celiac disease; 1st degree relatives (parents, siblings, and children) should be screened.

Dr. Andrew Smith, also from the UK, had some interesting comments about this article in regards to the role of an endoscopy and biopsy in the diagnosis of celiac disease. I’ve cut and paste a few of Dr. Smith’s statements below (originally published online in the British Medical Journal on 3-12-14).

“The article is an interesting and informative overview of coeliac disease. However, the discussion related to the necessity of a duodenal biopsy in adults seems comparatively inadequate; especially considering that it is reported that European guidelines provide an algorithm for avoidance of biopsy in children.”

“The formal diagnosis of coeliac disease seems to be an academic endeavour in certain cases. If an adult patient has resolution of symptoms on a gluten-free diet, especially if combined with high serological markers, can this not be enough to recommend continued trial of dietary gluten avoidance? Even if the patient has Irritable Bowel Syndrome with an element of gluten-sensitivity, the treatment will be the same. The insistence on endoscopy seems unnecessary in these cases; both in relation to patients’ perceptions and experience of such an invasive procedure and to the financial costs associated with it.”

“Another factor is that of an ethical one. It is well known that a fundamental basis of medicine is ‘primum nil nocere’ (‘first, do no harm’). It therefore seems erroneous to encourage patients to continue with gluten-containing diets whilst awaiting an endoscopy appointment, especially when serological tests can be taken within one or two days. Even more conflicting is prescribing individuals a ‘gluten challenge’ with the explicit aim to create the histological features, but also concomitant symptoms, to aid the diagnosis of a disease for which the treatment may have already had benefit.”

I think that Dr. Smith brings up some of the same questions that many of us, as patients, have had through the years, and it is nice to see that this is being debated and discussed.

On a totally unrelated note, sometime this week is my 4 year anniversary of being diagnosed with celiac disease and going gluten free (I’m not sure of the exact date but know it was around St.Patrick’s Day).

As a tribute I would like reflect on the ways that this diagnosis has changed my life for the better:

-I have energy and can run, chase my kids around the yard, ski, do yoga, and stay awake all day (and sometimes all night for work) without feeling like sleeping all of the time. My joint pains are gone and I feel younger than I did 4 years ago.

-I have been forced to eat healthier and provide my entire family with more nutritious food. I no longer take what I eat for granted, and I have mastered the art of label reading. I have also learned to cook and bake from scratch, something that I had never had to confidence to try to do in the past. I also have an excuse not to eat all of the junk food in the break room at work, donuts at conferences, etc.

-When we road trip and travel we have to plan out our food-related stops ahead of time, and no longer rely on eating at fast food places like McDonald’s. This has been a blessing, and just last week we discovered a super great eatery called Egg Harbor Café, with GF options, outside of Chicago while on a road trip. I highly recommend checking them out if you live or travel through the area, there are a bunch of locations.

-I have formed an incredible network of people with celiac disease and non-celiac gluten sensitivity around the world. And although I have met only a few of you in person, it is a joy to be able to communicate, email, and share ideas, stories, articles, laughs, etc. I am so grateful for your love, advice, and support.

-I’ve realized that I can live a full life, even with celiac disease and 2 other autoimmune conditions. Although it’s not always a piece of cake, celiac disease is not a death sentence (see #1 above) or a reason to hate the world. It has been empowering for me to triumph over celiac disease.

The next time I get glutened, I’ll have to remember to look back on this post. Dear Tom, if you are reading this, please remind me to do so!

Have any of you had experienced positive life changes following your diagnosis? If so, please feel free to share. I would love to balance some of the negativity and bitter feelings about celiac disease and living gluten free that seem to be increasingly prevalent these days in the internet world.

I won’t be writing much this spring, but feel free to post questions and comments either here or on my Facebook page, and I’ll respond as soon as I can. Thanks for reading and Happy Spring!

Reference:

Mooney, P., Hadjivassiliou, M., Sanders, D. Coeliac disease. BMJ 2014;348:g1561. Published online 3 March 2014.

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Necrotizing enterocolitis: a devastating digestive disease of premature babies

I do not see celiac disease in my practice as a neonatologist as most of my patients are born prematurely, weigh less than 5 pounds at birth, and have never eaten wheat.  That being said, I have taken care of several babies with an intestinal condition that is much worse than celiac disease. It is called necrotizing enterocolitis (or NEC) and approximately 5-10% of the smallest premature infants develop it after birth. The incidence in the neonatal population overall is 1-2%, similar the rates of celiac disease in the adult population.

Babies with NEC develop inflammation in the lining of their intestines which can lead to injury and death of segments of the small and large intestines. In the worst cases of NEC, perforations (holes) develop in the intestines and portions of the intestine have to be surgically removed. Clinical signs of NEC include abdominal distension (babies’ bellies often become large and hard like a rock), bloody stools, delayed digestion, respiratory distress, and shock.  Once NEC develops, it can progress rapidly, and 25 to 30% of babies who develop NEC die. A healthy premature infant can develop NEC and be dead within 8 to 12 hours.

The cause of NEC is unknown.  It usually develops after the first week of life and, in most cases, after a baby starts to receive feedings. The risk of NEC is much higher in babies who receive formula than those who receive pumped breast milk (or donor breast milk) but we do see cases of NEC in babies who have received only breast milk.  Although we are able to treat NEC medically, with bowel rest and antibiotics, we are not quite sure which bacteria are the culprits. Similar to celiac disease, emerging research is showing that NEC may be associated with an overgrowth and colonization of babies’ guts with “bad” bacteria, and probiotics are being researched as a possible way to prevent NEC in preemies.

Although there is not any known association between NEC and celiac disease, I think it’s important for us to be aware that there are other digestive diseases out there for which there is much less known than celiac disease. Although we cannot prevent celiac disease from developing, at least not yet, we are able to treat it with the gluten-free diet.  Despite our best efforts to prevent NEC (through exclusive breast milk diets), it is still occurring at alarming rates, and the treatments do not always work. NEC has many parallels with food protein-induced enterocolitis, a disease of infants and children that I wrote a post about last spring.

The NEC Society has recently been founded by the mother of a premature baby who died from NEC-associated complications in 2012.  The missions of the NEC Society include to increase awareness of NEC, empower families affected by NEC, and to, ultimately, prevent it.  Please check out their website and share it with others who may be interested and/or helped by the information on it. One of my favorite posts from their site is called “Pointers for Parents of Preemies” from February 2014.

Lastly, out of curiosity, have any moms out there with celiac disease or non-celiac gluten sensitivity had an infant develop NEC? If so, would you be willing to share your story? Thank you!

 

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Notes from the 2014 International Nutrition and Growth Conference in Barcelona

I was fortunate to be able to escape the “polar vortex” 3 weeks ago and travel to sunny Barcelona, Spain for the 2nd International Conference on Nutrition and Growth, a 3-day gathering of doctors, researchers, nutritionists, nurses, and other specialists from around the world. During this conference I learned about the most recent research regarding neonatal and pediatric nutrition, breastfeeding, probiotics, obesity, maternal diet and nutrient supplementation during pregnancy, epigenetics, and the microbiome. I was also given a fair amount of free time to explore one of the most beautiful cities in the world. As an added bonus I was able to eat GF like a queen throughout the city (there will be an upcoming post about this). If it was not for my family, job, and other “real life” things I am not sure that I would ever have left Barcelona!

Although I have pages and pages of notes, abstracts, and presentation slides to sort through, there were some common themes that were repeated over and over again at the conference. Although we’ve heard many of these ideas before, and none of them are “rocket science,” I feel compelled to share, as they are all very important. Here they are, in no particular order:

1. We need for our children to play outside as much as they can. It is good for them to play in and eat dirt, as this strengthens their microbiomes. Having a healthy population of gut bacteria helps to prevent against the later development of allergies and celiac disease. Exposure to sunshine, even on cold winter days, is crucial for the development of healthy bones and teeth.

2. All us need to eat more fish and green leafy vegetables, especially when we are pregnant. The “good” fats in fish, such as salmon, play a huge role in the development of a fetus’ immune system. Green leafy vegetables, such as kale, are full of micronutrients that are important for the development of fetal and infant brains. We need to really pay attention to what we are eating and drinking when we are pregnant, as our diets during pregnancy play a large role in the lifetime health of our unborn babies.

3. We should probably all be taking probiotics, or at least considering doing so. The higher one’s level of Lactobacilli and Bifidobacterium (good bacteria) in the gut, the less likely one is to develop celiac disease and food allergies later on. Researchers are also finding that an overgrowth of “bad” gut bacteria can predispose both to obesity and mental health issues. The best source of probiotics for babies is breast milk.

4. Rapid weight gain during infancy is not a good thing. If a newborn infant gains too much weight during the first few months of life, he or she will have a much higher risk of obesity, type 2 diabetes, and metabolic syndrome as an adult. Infant obesity is being recognized as an emerging problem in first world countries. Healthy term infants should not be fed on a schedule and should not be forced to continue eating when they no longer seem hungry.

5. All infants need to get their own mother’s breast milk, even if the breastfeeding is partial. The evidence is clear that breastfeeding leads to decreased infections during infancy, improved immune system functioning, optimal brain development, and the establishment of a healthy microbiome. Some breast milk is much better than none at all! When a mother cannot provide breast milk, donor breast milk should be considered, especially for premature infants.

6. Solid foods (including those containing eggs, milk, gluten, etc.) should be introduced to an infant between 4 and 6 months of age, while still being breastfed. This is a critical time in the development of the immune system, and there’s enough research out there showing that babies who receive breast milk when solids are introduced during this time frame have a much lower risk of the later development of both food allergies and celiac disease.

I could keep going but am going to stop for the sake of brevity. As I make my way through some more of my notes, I’ll post information that may be of interest to you. Feel free to ask questions too. I love when readers comment, ask questions, and share their experiences and ideas.  I’ll definitely share my Barcelona dining experiences in an upcoming post as well, as it truly is a great destination for those of us with celiac disease (and non-celiacs too!)

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Celiac Disease Can be a Pain in the Joint

Unexplained joint pains (arthralgias) were one of the main symptoms that I dealt with prior to my celiac diagnosis. Throughout my twenties I had pain and stiffness in my fingers, knees and ankles that would come and go with no apparent explanation.  I ran track for part of high school and continued to run for fitness during college, but shortly after graduating had to stop running for a long time due to my joint issues. I was evaluated over and over again for lupus, rheumatoid arthritis, Lyme Disease, etc. but there were never any answers for why I had developed the pains. So I learned to live with them and I stopped running. Fortunately, since going GF in 2010 my arthralgias have almost entirely disappeared, and I was able to resume running again.

Based on previous research, up to 25% of people with celiac disease may experience joint pains. In just the last few months there have been a few interesting studies published about the relationship between celiac disease and joint issues.

A group of researchers published a paper last week showing a significant relationship between joint inflammation and celiac disease in children. They evaluated the knees, hips, and ankles of children with celiac disease (n=74) by ultrasound. They compared ultrasound findings of those with treated v. untreated celiac disease and found that 50% of those who were not on the GF diet had evidence of joint inflammation v. only 11% of those who were GF.

In a recent Tunisian study, researchers tested over 200 women with unexplained arthralgias (joint pains) for celiac disease.  They found much high rates of undiagnosed celiac disease in their sample (2.37%) than in the general population in their country (0.28%).  Interestingly enough, all of the women who were diagnosed did have other symptoms of celiac disease, such as anemia and infertility, when their medical records were reviewed after-the-fact.

In addition, Dr. Guandalini refers to the relationship between celiac disease and arthritis in his review of celiac disease in children that was published earlier this month in JAMA Pediatrics (see my previous post for a summary and for the actual reference).

Although the relationship (or lack of one) between juvenile idiopathic arthritis (JIA) and celiac disease appears to be debatable in the medical literature, this story, which was published last year in the NY Times, does present a compelling case for a link, at least in some cases.

Have any of you experienced celiac-related joint pains? If so, please share, as your stories may lead others to be diagnosed…

References:

  1. Lubrano E, Ciacci C, Ames PR, et al. The arthritis of coeliac disease: prevalence and pattern in 200 adult patients. Br J Rheumatol. 1996;35(12):1314.
  2. Iagnocco ACeccarelli FMennini M, et al. Subclinical synovitis detected by ultrasound in children affected by coeliac disease: a frequent manifestation improved by a gluten-free diet.Clin Exp Rheumatol. 2014 Jan 20. [Epub ahead of print]
  3. Ghozzi MSakly WMankaï A, et al. Screening for celiac disease, by endomysial antibodies, in patients with unexplained articular manifestations. Rheumatol Int. 2013 Dec 1. [Epub ahead of print]
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Celiac Disease in Children (Summary of January 2014 Review Article)

Drs. Guandalini and Assiri have written a summary of pediatric celiac disease that was published in the online edition of the journal JAMA Pediatrics last week. In this post I will share some of the highlights of their review article.

Although the overall prevalence of celiac disease is 1% in the pediatric population, only 10-15% of children with celiac disease have been diagnosed and treated.

The celiac genes (HLA-DQ2 and DQ8) contribute 40% of the risk of developing celiac. Environmental risk factors for celiac disease include infant feeding patterns, early infections, gut microbiota, and the amount and timing of initial gluten exposure.

The two major autoantibodies used in the diagnosis of celiac disease include the anti-TTG IgA and antiendomysial IgA. The antibody against deamidated gliadin peptides IgG (DGP IgG) is a 3rd antibody that has been identified. The DGP IgG may be the best one to use for diagnosing celiac disease in young children (under the age of 2) as it has the highest sensitivity in this age group.

During the past few decades there has been a shift from children presenting with celiac disease having typical symptoms (gastrointestinal) to having extraintestinal (atypical) symptoms.

“Typical” symptoms include abdominal pain (most common), diarrhea, chronic constipation, weight loss, vomiting, abdominal distension, and malnutrition.

“Atypical” (extraintestinal) symptoms in children include all of the following:

  • fatigue
  • iron deficiency anemia
  • dermatitis herpetiformis
  • dental enamel defects
  • aphthous ulcers (canker sores)
  • arthritis and arthralgias (joint pains)
  • low bone mineral density, fractures of bones
  • elevated liver enzymes
  • short stature
  • delayed puberty
  • cerebellar ataxia
  • recurring headaches
  • peripheral neuropathy
  • seizures
  • psychiatric disorders, including anxiety, panic attacks, depression

Celiac disease is associated with other pediatric conditions, including type 1 diabetes mellitus, selective IgA deficiency, Down syndrome, Turner syndrome, and Williams syndrome.

Patients with celiac disease are at an increased risk of all of the following (I was not aware of many of these associations until I read this article):

  • adrenal insufficiency
  • asthma
  • IgA nephropathy
  • lupus
  • pancreatitis
  • hyperparathyroidism
  • endometriosis
  • cataracts
  • ischemic heart disease
  • dilated cardiomyopathy

Dr. Guandalini recommends that celiac diagnosis in children involve celiac antibody testing, endoscopy with small bowel biopsy, and response to the gluten free diet. He does discuss that the European Society for Pediatric Gastroenterology, Hepatology, and Nutrition (ESPGHAN) has recently issued guidelines for diagnosis in which, in select cases, the small bowel biopsy can be omitted. Dr. Guandalini’s major concern is that if children undergoing evaluation do not have biopsies done, that other GI diagnoses that may need treatment, such as eosinophilic esophagitis, can be missed.

Celiac Disease resources that were discussed toward the end of the article include the Academy of Nutrition and Dietetics website, www.eatright.org, and an e-book created by the University of Chicago Celiac Disease Center called “Jump Start Your Gluten-Free Diet.”

In summary, this is a nicely written paper that is a great summary for pediatricians and other practitioners who need to be on the look out for celiac disease in their pediatric patients. I also thought that some of you non-medical folks might be interested as well!

Reference: Guandalini S, Assiri A. Celiac Disease: A Review. JAMA Pediatr. 2014 Jan 6. doi: 10.1001/jamapediatrics.2013.3858.

Lastly, the super cute children in the photo are my baby brothers and nieces who are now in their late teens and twenties. Since none of them read my blog, as they seem to be in denial that they have a risk of celiac disease, I had no qualms about sharing their adorable photo. Also, I became an aunt for 19th time this past week! Welcome baby Gabriel Dominic and congratulations to my sister and her family on his birth.

Thank you for reading!

 

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Mast Cell Activation Syndrome Madness

At this time last year I had never heard of mast cell activation syndrome (MCAS) and the first time that I heard the name I thought that it was a “made up” disease. Since then I have come to realize that it is a real diagnosis and I have learned a ton about it, including the following:

  • MCAS is a newly recognized disease of the innate immune system (our bodies’ first line of defense against bacteria, viruses, parasites, and other invaders).
  • Women make up the majority of patients with MCAS.
  • Symptoms are caused by having too much histamine in one’s system and can affect almost any part of the body (see comprehensive list below).
  • MCAS is very common (there is pilot data showing that 17% of Germans are affected to some degree).
  • It is acquired during life; no one is born with MCAS and it is not yet known why it develops in certain people.

I am one of the unlucky people to have acquired MCAS during my journey through life. Although I really wish that I didn’t have it, I am sharing my story in hopes that I can help others.

Mast cells are innate immune cells that play a role in defending the body against bacteria, viruses, and parasites, but are best known for their participation in the allergic response. When mast cells degranulate, or burst open, histamine and other chemicals are released, leading to symptoms which we associate with allergies, including having a runny nose, wheezing, hives, etc. Most of us are familiar with the antihistamine drugs that are used to treat allergic symptoms, such as Claritin, Allergra, and Zrytec. Although these medications do not prevent mast cells from releasing histamine, they prevent symptoms by blocking histamine receptors.

In mast cell activation syndrome (also known as mast cell activation disorder, or MCAD), mast cells have excessive degranulation, release too much histamine, and adverse symptoms develop. Symptoms can vary from person to person and will often become worse in the same person with time. Some patients will experience only one or two symptoms from having too much histamine floating around, and other patients will experience many, many symptoms. Although urticaria (hives) is the classic symptom associated with mast cell degranulation, in many cases patients with MCAS do not have urticaria or any skin findings. I have never had hives and the only skin symptom that I get from MCAS is facial flushing from time to time.

According to the Mastocytosis Society Canada’s website, the most common symptoms of MCAS include the following:

  • Gastrointestinal symptoms, including nausea, vomiting, diarrhea, abdominal pain, bloating, and malabsorption* (sounds a lot like celiac and/or irritable bowel syndrome doesn’t it?)
  • Low blood pressure*
  • Fatigue*
  • Wheezing*
  • Itching, flushing*, hives
  • Episodes of fainting or dizziness
  • Bone pain*
  • Cognitive impairment (brain fog)*
  • Anxiety
  • Rapid weight gain or loss
  • Anaphylaxis
  • Chest pain and/or a racing heart*
  • Sensitivity to sunlight

* = symptoms that I have personally experienced as a result of MCAS. I saw several different subspecialists before we were able to piece all of these symptoms together.

Common triggers for mast cell degranulation in those of us with MCAS include the following:

  • insect stings
  • pain medications such as NSAIDs and narcotics
  • foods and drinks that are high in histamine or are known to trigger histamine release
  • extreme temperatures, both hot and cold
  • exercise
  • strong scents including perfumes and chemicals
  • friction, pressure, or vibration on the skin
  • emotional and physical stress

At this point, my only known triggers for MCAS are high histamine foods and foods that are histamine-releasing, including fermented foods and foods/drinks that have added sulfites. Please see my previous post “Celiac Disease and Multiple Food Intolerances” from July 2013 for more details on food triggers and high histamine foods. Since beginning treatment for MCAS late last summer, the other food intolerances that I had attributed to my celiac disease have markedly improved. My sulfite allergy/intolerance also appears to have been as result of untreated MCAS (see link).

The first case reports of MCAS were just published in the medical journals in 2007 or 2008, so in most cases, the only doctors who have learned about MCAS during medical school are the really young ones. Systemic mastocytosis (SM) is a well-known, very serious mast cell disease in which there are too many mast cells in the body that invade into other parts of the body, including the bone marrow. In MCAS patients the numbers of mast cells are normal (this is what differentiates it from SM) but the mast cells that are present are overly active and degranulate much more often than they should. SM and MCAS share a lot of the same symptoms but MCAS is on a milder scale.

According to Dr. Larry Afrin, MD, a professor at the University of South Carolina who is one of the world’s experts on MCAS, testing should consist of the following:

  1. Complete blood cell count with manual differential, comprehensive metabolic panel, and a serum magnesium level (these are usually part of a doctor’s evaluation for a patient presenting with any type of chronic illness). Coagulation studies and serum immunoglobulin levels may need to be done depending on presenting symptoms.
  2. Blood tests consisting of serum tryptase and plasma histamine levels. If the tryptase is greater than 20 ng/mL, then a patient must be evaluated for systemic mastocytosis. In MCAS the tryptase, although often elevated, is almost always less than 20 mg/dL.
  3. Plasma prostaglandin D2 (PGD2) and heparin levels.
  4. Chilled 24 hour urine sample for PGD2 and methylhistamine.

In many cases of MCAS the baseline tryptase and histamine levels can be normal, so it is important for a patient to have these labs done two times (both at baseline and when symptomatic). Both blood and urine levels of histamine and tryptase should rise after mast cells are triggered. Therefore, MCAS cannot be ruled out based on one set of normal labs. This differs from many other diseases that can be ruled out if an initial set of lab tests are normal. In my case I had abnormally high urine prostaglandin levels on two separate occasions and my tryptase and histamine levels rose when I was symptomatic (both were totally normal at baseline when I did not have any symptoms going on).

Treatment options for MCAS include H1 antihistamines (such as Claritin, Allegra, and Zrytec and their generic forms), H2 antihistamines (such as Pepcid and Zantac), and mast cell stabilizers such as ketotifen and cromolyn sodium. I initially had a difficult time finding an H1-blocking antihistamine that worked for me, as most contain cornstarch and other sulfited ingredients which are triggers for my mast cells to degranulate. But I have recently done very well taking a compounded sulfite-free form of generic Claritin twice a day. I have also done my best to follow a low-histamine diet, and I believe that this has made the biggest difference in my symptoms improving. Yasmina, the Low Histamine Chef, who also has MCAS, has been a wonderful resource for learning about the low-histamine diet and recipes. If I keep my overall histamine intake low, I find that I can indulge in an occasional glass of wine or enjoy a small serving of aged cheese without starting to wheeze like I used to in the past.

Interestingly enough, since starting on this MCAS journey I have met about a dozen or so other women who have both celiac disease and MCAS.  Many of us have found that our MCAS/histamine symptoms seem to spiral out of control after getting accidentally “glutened.” DAO, the enzyme in our bodies that breaks down histamine, is produced in our digestive systems, so it does make sense that the gut damage we experience from gluten may lead to a decrease in DAO (and hence, our bodies getting overwhelmed with histamine that cannot be broken down). My gut instinct (no pun intended) is that many of us with celiac disease and non celiac gluten sensitivity have MCAS going on to some degree. I guess that time will tell…In the meantime, if you are experiencing symptoms that seem puzzling, involve multiple systems of your body, and popped up out of the blue, I encourage you to look into MCAS as a possibility and discuss your symptoms with your doctor.

There are some great references on the internet for learning about mast cell activation syndrome and histamine intolerance, including the following:

1. Mastocytosis and Mast Cell Disorders from the Mastocytosis Society Canada’s website (www.mastocytosis.ca). Accessed Jan. 3, 2014.

2. Presentation, Diagnosis, and Management of Mast Cell Activation Syndrome by Lawrence Afrin, MD, chapter 6 in the book Mast Cells edited by David B. Murray, 2013.

3. Histamine Intolerance on Allergy UK website (www.allergyuk.org). Accessed Jan. 3, 2014.

4. Mast cell activation syndrome: a newly recognized disorder with systemic clinical manifestations.  Hamilton, M., Hornick, J., Akin, C., et al.  J Allergy Clin Immunol. 2011. 128 (1): 147-152.

5. Mast Cell Activation Syndrome: A Review.  Frieri, M., Patel, R., Celestin, J.  Curr Allergy Asthma Rep. 2013. 13: 27-32.

6. Histamine Intolerance by Dr. Janice Joneja on webpage www.foodsmatter.com. Accessed Jan. 3, 2014.

7. Expanding spectrum of mast cell activation disorders: monoclonal and idiopathic mast cell activation syndromes. Picard, M., Giavina-Bianchi, P., Mezzano, V., et al.  Clinical Therapeutics. 2013. 35(5): 548-562.

Dr. Afrin’s chapter on MCAS for physicians (#2 above) is the most comprehensive document that I have come across regarding all that is known about MCAS.

Lastly, I would like to thank my friend Harriet for all of her advice and help on this journey. If it was not for her assistance, I would probably still be wheezing and flushing with chronic brain fog and irritable bowel syndrome despite being strictly gluten free.

Happy New Year and thank you for reading!

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December Book Review, Recipes, and Ramblings

If you are one of my readers who visits this page to be able to learn about newly published research studies about celiac disease and gluten sensitivity, this is not the post for you. I am not going to write about any research this time. Instead, this is going to be a rambling post written by a chronically sleep-deprived, working mother 2 weeks before Christmas! If you don’t like the sounds of it, please stop reading now!

We celebrated Thanksgiving a few weeks with our wonderful friends who have become like family since moving to Wisconsin 4 years ago. M, the husband, went out of his way to prepare an almost entirely GF dinner for all of us, even though I was the only one of the guests unable to eat gluten. He stuffed the turkey with Rudi’s GF stuffing mix and it turned out really good. My husband and I were responsible for only a few items for the dinner, which included cornbread, cranberry sauce, wine and beer, ice cream, and pumpkin pie. I made a lovely pumpkin pie using a GF Pillsbury pie dough the night before Thanksgiving and when I was taking it out of the oven at 9:45 pm I accidentally dropped it to the ground and it was smashed to bits. I foraged through my cupboards and found an old bag of Cup 4 Cup GF flour that I had forgotten I had, and an extra can of easy pumpkin pie filling. I searched the internet for a pie crust recipe using Cup 4 Cup flour and I came across this recipe on a website called Kitchen Simplicity. I followed the recipe using 3 tablespoons of water and the “mix by hand” option because my food processor is broken, and the pie crust turned out a million times better than the first one that I had ruined had tasted (I only know this because I ate a few bites of it that had fallen on my kitchen floor as I tried to figure out if I’d be able to salvage it!) The pie dough from the recipe I made was very soft and the consistency reminded me a lot of other GF doughs, like Chebe. I used my hands, as opposed to a roller, to shape it into the pie dish. I am planning on using it as my basic pie recipe from now on since it was so simple and good. So, in the end I am thankful that I ruined my pie!

Once we get through this crazy week (my two oldest daughters are performing in our local production of the Nutcracker and there are rehearsals or performances every night) we are going to make some Christmas cookies. We have been using an easy cut-out GF sugar cookie recipe that I adapted from the Land O’Lakes recipe with great success (see link). I am going to omit the xanthan gum again this year as I have made it without the gum the last 2 times and we haven’t been able to detect a difference. Please feel free to share any of your favorite GF cookie recipes too in the comments section if you’d like. My kids and I love trying out new cookie recipes and my 4 year old loves to be in the kitchen with me.

I was recently introduced to the children’s book “Gluten-Free Me” written by a fellow Clevelander named Christy Bykowski. Christy’s middle son Beckmin has celiac disease. The main character who is also named Beckmin, has celiac disease, and this book describes his navigation of his first day of kindergarten. My three oldest children, who are 8, 6, and 4, really enjoyed the book and through reading it with them, I feel that they gained a better understanding of why those of us with celiac disease need to be so careful about gluten cross-contamination. I recommend this book for children with celiac disease, as well as siblings, other relatives, and friends of people with celiac disease who are from about 3 to 9 years old. This would also be a great book for teachers to have in their classrooms. You can purchase the book here or at amazon.com. Now that I think about it, it would make a great Christmas gift! As a disclaimer, I was sent a free copy of this book to review.

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A few other random things:

I received an email from a company that has recently created an iPhone/iPad/Droid app called GlutenFree VIP. At this point, outside of reviewing celiac-related books from time to time, as I just did above, I am opting to not review any products for compensation. That being said, I did download the app and was happy to see that GF foods from some great online stores, like Moon Rabbit Foods, are available, so this looks like this may be a promising tool. I haven’t actually tried it yet, but thought that this app may be of interest to some of you to try out.

I was recently hired as a freelance writer by the magazine Gluten-Free Living and my first article about Probiotics and Celiac Disease will be in their Jan/Feb 2014 issue that will soon be hitting the shelves. I encourage you to check it out of you are interested in learning more about the topic and have been considering whether or not to start taking a probiotic. This is my first publication since I published research from my fellowship training, so I am pretty excited about it. Gluten-Free Living is also having a conference in Orlando in April (4th thru 6th) that I am considering attending.

Lastly, I would like to recognize Sue, a fellow Celiac who works in dietary services at the hospital where I work. Over the past few months Sue has gone out of her way to enable me to safely eat in our doctors’ lounge by doing things such as moving the bowl of fruit salad far away from all bread crumbs and keeping a secret stash of Rice Chex and other GF foods for me. Thank you Sue for all of you have done to make my work life easier. I really appreciate it and hope that you are reading this!

If any late-breaking, hugely important celiac-related papers are published between now and Christmas, you will hear from me. Otherwise, I’ll be back sometime around the new year. Merry Christmas to you and your families (if you celebrate) and Happy New Year! I wish you peace, love, and joy. Remember that you can always reach out to me by email at thepatientceliac@gmail.com.

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This was my first Christmas as a mom in 2005. My daughter Grace was 7 weeks old when this was taken. It is one of my favorite Christmas photos and when I look at it I am reminded of how quickly my kids are growing up and that I need to slow down and enjoy the present time with them! And take a break from blogging for a while! I’ll see you in 2014!

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If Research Looks Too Good to Be True, it Probably is…

I recently learned that bovine colostrum (the milk produced by cows in the first few days postpartum) was discussed during a large online presentation for those with gluten-related disorders.  As some of you may know, I am a huge advocate of breastfeeding and I think that it is very important for newborn babies to get their own mothers’ colostrum, if possible, because it is full of antibodies and other immune proteins, pre- and probiotics, and it promotes optimal functioning of babies’ digestive tracts.

However, I was unfamiliar with any benefits of bovine colostrum for humans, and in doing a search of the literature on Pubmed.gov, I was unable to come up with any scientific references regarding the use of bovine colostrum for celiac disease or non-celiac gluten sensitivity. All that I could find regarding bovine colostrum and “leaky gut” in humans was one study showing that bovine colostrum is associated with an increase in intestinal permeability in runners, and another showing that it may decrease intestinal permeability in athletes.

Many of the bovine colostrum manufacturers have loads of references about bovine colostrum available on their internet pages. Interestingly enough, many of them have exactly the same references that they appear to have shared with each other. I decided to check a couple of them out (taken from an anonymous company’s page):

1.   Immunoglobulin from bovine colostrum effectively reduces and prevents viral and bacterial infections in immune deficient subjects: bone marrow recipients, premature babies, AIDS, etc. New England Journal of Medicine

-This one caught my eye because I work with premature babies and I have never heard of bovine colostrum being used as a treatment in my patient population. I checked the entire New England Journal of Medicine (NEJM) database for the last 20 years and there is only one article regarding bovine colostrum, which is a case report in which it was given to an AIDS patient with a cryptosporidial infection causing diarrhea.

2.   Immunoglobulin in colostrum has been used to successfully treat: Thrombocytopenia, Anemia, Neutropenia, Myasthenia Gravis, Guillain Barre Syndrome, Multiple Sclerosis, Systemic Lupus, Rheumatoid Arthritis, Bullous Pamphigoid, Kawasaki’s Syndrome, Chronic Fatigue Syndrome and Crohn’s disease, among others. Dr. Dwyer; New England Journal of Medicine

-Again, I checked the NEJM database, and I cannot find evidence of an author named Dr. Dwyer who has published any research about colostrum. Likewise, Dr. Dwyer definitely did not write a review article about colostrum for the NEJM. Is Dr. Dwyer a physician who reads the NEJM and somehow found all of these articles about colostrum that I am unable to find? Or is he or she made up? It’s hard to tell.

3.   Human clinical study: Immune factors in cow colostrum, when taken orally, are effective against disease-causing organisms in the intestinal tract. Ingestion of bovine colostrum’s immunoglobulins may be a new method of providing passive immunoprotection against a host of gut-associated disease causing antigens (viral and bacterial). Dr. R. McClead, et. al.; Pediatrics Research

-Dr. R. McClead has published two studies about colostrum that are listed in PubMed.gov. The first, in 1984, showed that bovine colostrum contains antibodies against cholera. The second, in 1988, showed that bovine colostrum was not effective in the treatment of cholera diarrhea. Also, as an FYI, the journal Pediatrics Research does not exist; there is a journal called Pediatric Research. Is there possibly some unpublished pediatric research regarding bovine colostrum that Dr. McClead has done? If so, it should be described as such.

All in all, I personally have nothing against bovine colostrum, but I feel that the above references are misleading and make me much less trusting of such a product.  Scientific/research references should always contain the following information:

1. Authors’ names

2. Title of article/study

3. Journal name, volume, and page numbers (if unpublished, or an abstract only, it should be described as such)

4. Date of publication

If a manufacturer of a product is unable to provide this information with their cited reference(s), it is a red flag that the information they are providing may be inaccurate.  Also, a manufacturer of a product should not ask you to pay money to be able to see their references.  This information should be freely shared so that consumers can make informed decisions.

Have any of you had a similar experience of coming across references on the internet that do not add up? If so, please share.

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Non-celiac gluten sensitivity in children

I was thrilled to come across a paper about non-celiac gluten sensitivity in children in the Journal of Pediatrics, one of the main pediatric journals. Many of my pediatrician colleagues read this journal on a regular basis. In this article, a group of Italian researchers have described the symptoms and lab test results in 15 children with gluten sensitivity (GS) compared to 15 children with active celiac disease and 15 controls (children with IBS-type symptoms that have no correlation with gluten intake). None of the children included in the GS group had an IgE-mediated wheat allergy causing symptoms. Most of the children in the study were between 8 and 10 years old.

Here is a brief overview of the research study:

  • The main symptoms in the gluten sensitive group included abdominal pain, chronic diarrhea, bloating, failure to thrive (poor growth), vomiting, and constipation. These symptoms were similar to those seen in the group of children with active celiac disease. The “control” group of children with functional (IBS-type symptoms) had only abdominal pain and indigestion as symptoms.
  • The gluten sensitive children had “extraintestinal” symptoms of tiredness, headaches, and limb pains. Interestingly, these were not seen in children with active celiac disease. The celiac group of children had anemia and elevated liver function enzymes but the gluten sensitive children did not.
  • Two thirds of the gluten sensitive children had abnormally high antigliadin IgG antibodies (this is an older antibody that was used in the past to assess for celiac disease, but is no longer used because it is non-specific for celiac disease). None of the gluten sensitive children had elevated celiac antibodies (TTG IgA and endomysial IgA). All of the children with active celiac disease had abnormally high TTG IgA and endomysial IgA levels and 13/15 with celiac disease had elevated antigliadin antibodies. The control group kiddos with functional abdominal pain were negative for all antibodies (antigliadin, TTG, and endomysial).
  • Seven of the 15 children with GS had one of the celiac genes (DQ2/8) and 8 did not. The 8 gluten sensitive children who were DQ2/8 negative all had some combination of HLA DQ1, DQ5, and DQ7.
  • Eleven of the 15 GS children had an intestinal biopsy while on a gluten-containing diet. All of those with GS had normal to mildly inflamed intestinal mucosa, corresponding to Marsh stage 0 to 1.

In summary, the authors provide findings that support the existence of gluten sensitivity in children as a distinct problem from celiac disease. Children with gluten sensitivity have celiac-like symptoms that resolve on a gluten free diet and return when gluten is reintroduced. Although gluten sensitive children often have elevated antigliadin IgG levels, they have normal TTG IgA and endomysial IgA levels, at least in this study. Their small bowel biopsies show no evidence of villous blunting and, in the majority of cases, the biopsies are normal. In addition, these children’s symptoms are not as a result of being allergic to wheat. Although this is a small study, it is a step in the right direction toward the recognition of non-celiac gluten sensitivity in the pediatric population, and I am thankful that there is finally a research study to support its existence. I am looking forward to being able to read and share similar articles with you.

Reference:

Francavilla, R., Cristofori, F., Castellaneta, S., et al. Clinical, serologic, and histologic features of gluten sensitivity in children. Journal of Pediatrics. E-pub ahead of print. Nov. 16, 2013.

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Risk Factors for Celiac Disease

I’ve had a very difficult week getting my act together to watch any of the Gluten Summit videos, and was unable to make it to my local celiac support group’s dinner tonight due to traffic difficulties (sorry Mary Lynne!), but I was able to get my hands on Dr. Benjamin Lebwohl’s latest manuscript called “The Unfolding Story of Celiac Disease Risk Factors.” If you have Celiac Disease and haven’t heard of Dr. Lebwohl, he is one of the main researchers at the Celiac Disease Center at Columbia University in New York with Dr. Peter Green. Just this past summer Dr. Lebwohl published a landmark paper (see link) showing an increased risk of lymphoma in untreated celiac disease. If you haven’t read this paper, I recommend reading it and showing it to your family members to convince them that they need to be screened for celiac disease if they’d like to prevent getting cancer.

It is currently known that there are 3 components to developing celiac disease: ingestion of gluten, having one of the celiac genes (HLA DQ2 and/or DQ8 in most cases), and a yet to be determined environmental factor. Researchers are working hard to figure out what the environmental trigger is, as avoiding it may be the key to preventing the development of celiac disease in genetically susceptible individuals. About 40% of the U.S. population carries one of the celiac genes, and as I learned at the International Celiac Disease Symposium in Chicago this fall, Celiac can also develop in people who do not have the 2 main genes (myself included, I am double DQ7 positive).

In his latest paper, Dr. Lebwohl discusses the current theories regarding risk factors for the development of celiac disease that have been well-researched. They include the following:

1. Infant feeding practices. There was an epidemic of celiac disease in Sweden in the 1980s and 1990s which corresponded with a change in feeding practices. Babies during this time period were exposed to large amounts of gluten after they had been weaned from breast milk. The lovely Cristen Pantano wrote a guest post for me about this very topic in October 2013. Thus, the timing of the introduction of gluten during infancy may have an effect on the later development of celiac.

2. Infections, including rotavirus infections in children and campylobacter infections in adults, have been associated with an increased risk of celiac disease.

3. Hygiene hypothesis. Research has shown an increased risk of celiac disease in developed countries (i.e. Finland) than in less developed regions, such as the Russian Karelia region. A decrease in exposure to bacteria and microbes may lead to an increased risk of autoimmune and allergic conditions. Kids are supposed to be dirty to some extent.

4. Infants born via c-section are at higher risk for celiac disease than infants delivered vaginally. This is likely due to a change in the colonization of babies’ intestinal flora. For more on this topic, you can see my post about probiotics from February 2013 (and I’ve also heard through the grapevine that this is being discussed quite a bit during the Gluten Summit).

5. Gastrointestinal tract colonization with H pylori, a bacteria, is associated with a lower risk of celiac disease.

6. Medications associated with a higher risk of celiac include antibiotics (especially multiple doses) and proton pump inhibitors (i.e. Prilosec or Prevacid). I cringe when I think of how many antibiotics and anti-reflux medications I was on during college when I was repeatedly treated for ulcers and acne (in retrospect my symptoms were from untreated celiac disease and I have a feeling that this is the case for many people).

7. Infants whose mothers take iron supplements during pregnancy are at a higher risk of celiac disease than infants whose mothers did not take iron. Excess iron may have an effect on the makeup of the bacterial microbiome and have an influence on the innate immune system. More research into this area is needed before specific recommendations can be made and/or changed in regards to iron supplementation during pregnancy.

Overall, this paper by Dr. Lebwohl is the most comprehensive, up-to-date summary of our current understanding of celiac disease risk factors that I have come across, and every risk factor has research to support its inclusion. I am optimistic that, in the future, as more information becomes available, that we will be able to better identify those at risk for celiac disease and prevent it. Right now the only way to prevent celiac disease from developing is to exclude gluten from a newborn baby’s diet for life. And as we all know, in our gluten-filled world, this is much easier said than done! Perhaps for my great-great grandchildren we’ll have an easier way to prevent it. As my 4 year old daughter reminded me today as I dropped her off at school, “Mommy, you are going to be a grandma soon because you look like you are almost 100 years old!” So, perhaps this will be sooner than later!

Reference:

Lebwohl, B, Ludvigsson, JF, Green, PHR. The unfolding story of celiac disease risk factors. Clinical Gastroenterology and Hepatology (2013), doi: 10.1016/j.cgh.2013.10.031.

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2013 International Celiac Disease Symposium Poster Highlights

Although I did not allot enough time to check out all of the posters of abstracts that were on display at the International Celiac Disease Symposium (ICDS) in person, all of us received a spiral bound book that contained the hundreds of scientific posters that were presented. Abstracts are summaries of new research studies, and in many cases, they have not yet been published in a journal. I have started to review the book of abstracts that I received from the ICDS and there are some abstracts that are truly fascinating. We’ll hopefully hear more about these studies in the future as they get published in journals.

Here is a brief synopsis of five of the most interesting studies that I’ve been reading about:

1. “Nine years of follow-up of potential celiac disease in children.” A group of researchers from Naples, Italy (Aurrichio, et al) followed 156 with potential celiac disease who were not on a GF diet. Potential celiac disease, as I discussed here, is when a patient has abnormally high celiac antibodies on blood screening, and often symptoms, but a normal intestinal biopsy. The management is currently controversial. In this study, over a 5-year period, 46.8% of the children with potential celiac disease developed full-blown celiac disease.

2. “Celiac disease detection in asymptomatic children of 2 and 11 years old in a primary care health center using a transglutaminase antibodies quick test.” A Spanish team (Vallejo, et al) screened groups of 2 and 11 year olds for celiac disease in an outpatient clinic using rapid tests. 2% of the 2 year olds had confirmed celiac disease, and 1.5% of the 11 years had celiac disease. The overall rate of celiac disease in their population was 1.7%, which is higher than previously described.

3. “Absence of HLA-DQ2 and HLA-DQ8 does not exclude celiac disease in Brazilian patients.” HLA DQ2 and DQ8 are the 2 main celiac disease genes and are the ones that are currently tested for by most U.S. laboratories. In this study, a Brazilian team (Kotze, et al) performed gene tests on 101 patients with biopsy confirmed celiac disease. They found that 9 (8.9%) of their patients with celiac disease were DQ2 and DQ8 negative. They suspect that this is related to having such an ethnically diverse population in Brazil.

4. “Neurological dysfunction in patients with newly diagnosed celiac disease: a large prospective study.” Dr. Hadjivassiliou and team from the UK performed neurological evaluations on 73 patients with newly diagnosed celiac disease. 63% complained of neurologic symptoms; the most common were frequent headaches, problems with balance, and sensory symptoms. 32% had abnormal white matter lesions on MRI scanning and 43% had abnormal spectroscopy of the vermis of the cerebellum. The cerebellum is the part of the brain involved in balance and posture.

5. “Potential or definite celiac disease: push enteroscopy changes the diagnosis.” A celiac research team from the UK, lead by Dr. Eross, evaluated 16 patients with “potential” celiac disease. Potential celiac disease, as discussed above, is the term for when a patient has abnormally elevated celiac antibodies but no evidence of celiac disease on small bowel biopsy. They found that when their original duodenal biopsies were re-reviewed and biopsies of the jejunum (2nd part of the small intestine that is not typically biopsied when a patient is evaluated for celiac disease) were performed that 15 of the 16 patients actually did have celiac disease. They recommend that a diagnosis of potential celiac disease can only be made if the jejunum has been evaluated by biopsy.

Please let me know if you are interested in reading more about the abstracts that were presented at the ICDS poster session, as there are literally hundreds more that I can summarize for you. Also, I would love to hear about any interesting research that you have stumbled upon!

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Early Feeding and Risk of Celiac Disease in a Prospective Birth Cohort

**This is the first guest post on my page by Cristen Pantano, an incredibly talented scientist and mother of two children. Her youngest child was diagnosed with Celiac disease earlier this year. Many thanks to Cristen for tackling this challenging topic! 

Celiac is known to have a large genetic component and people with Celiac disease carry the HLA-DQ2 or HLA-DQ8 genes. However, only around 4% of people that carry these genes develop Celiac. The big question then is, what else is contributing to the development of Celiac?

Scientists are currently looking at other candidate genes, and so far, seven additional genes that make individuals more susceptible to developing Celiac have been identified. Genes are a great place to start, but as we all know, gluten is the big culprit in Celiac. It is the known environmental “trigger” for Celiac. Why is it that some people that carry the “Celiac genes” develop the disease after gluten exposure while others don’t?

Scientists and doctors are asking this question a lot these day. One area that is being investigated is infant feeding. Studies looking back on the Swedish Celiac epidemic of the 1980-1990s have shown that more than half of the epidemic could be explained by infant feeding practices (see link). During the time of the epidemic, Swedish infants were being introduced to gluten, on average, at around five months of age. Breastfeeding ended around this time and was replaced with formula thickened with wheat flour. When breastfeeding averages extended toward seven months and the popularity of wheat-laden formulas decreased, so did the rates of Celiac.

The Swedish epidemic got researchers thinking about infant feeding and many studies have since been published showing an effect of the age of gluten introduction, the amount of gluten introduced, and breast feeding on Celiac development.

A new study looking at the effect of these factors on the development of Celiac was recently published in the journal Pediatrics. This study, out of Norway, looked at the early feeding practices in 324 children that developed Celiac disease compared to a cohort with 81,843 children that did not develop the disease. The strength of the study is that it was prospective. Unlike most population studies where parents have to look back in time and remember details of early milestones, in a prospective study, parents fill out surveys to provide information in real time.

So what did this most recent study find? The authors found that 3.68/1000 children developed Celiac when introduced to gluten at six months compared to 4.24/1000 when introduced at four months and 4.15/1000 after six months. The increased risk for Celiac disease when gluten is introduced before four months, or after six, has been previously observed.

In this new study, the average length of breastfeeding in children that developed Celiac was 10.4 months compared to 9.9 months in the control population. The researchers found a positive association of prolonged (greater than 12 months) breastfeeding and  the development of Celiac disease. When all their breastfeeding data was adjusted for confounding factors such as maternal Celiac disease, this increased risk was borderline significant. That means that statistically speaking, the data set is on the weaker side and needs to be interpreted with caution. However, it does still demonstrate that in this data set, children that were nursed for twelve months or more had a greater risk for developing Celiac.

These findings have been met with frustration by many mothers of children with Celiac. Are women responsible for the development of their child’s Celiac disease because they chose to hold off solid foods and nurse up to, or past, one year? Of course they aren’t, and the authors of this study are not saying that they are. In their discussion, the authors caution that while their data on age of gluten introduction closely matches data from earlier studies, their data on breastfeeding does not.

Many, if not all, previous studies looking at breastfeeding and Celiac disease have found a protective effect from nursing. A 2006 review of the literature found that breastfeeding at the time of gluten introduction provided a 52% reduction in the development of Celiac disease. In 2005, two Swedish studies found a significant reduction in the onset of Celiac in babies that were nursed at the time of gluten introduction and continued to be nursed after that first introduction.

This latest study found that breastfeeding did not protect against Celiac and that nursing past twelve months increased the risk. Sounds strange right? In their discussion, the authors hypothesize that the greater risk in those breastfed past 12 months may have more to do with gluten than with breast milk. When a child is breastfed longer, the introduction of gluten may be later, after six months of age. Furthermore, since the child is older at gluten introduction, he may be exposed to larger amounts. The authors also mention that some mothers may have nursed longer due to perceived food sensitivities.

In the end, what is the take away from this study, and others, looking at infant feeding and the development of Celiac? It seems that there may be a window for gluten introduction between 5-6 months. Introduction before and after this time seem to increase the risk of Celiac. As far as breastfeeding, most studies point toward a large protective effect.

The development of Celiac Disease seems to be a perfect storm of genetic and environmental factors. Factors that may be out of any one person’s control. Studies should continue to look at early infant feeding and disease development, but all data should also be interpreted knowing that as hard as we try, some times, some things just can’t be prevented.

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ICDS 2013: The Celiac Iceberg Revisited

The second to last session on day one of the 2013 International Celiac Disease Symposium (ICDS) was a talk entitled, “Melting the Celiac Iceberg-potential, latent, silent: to treat or not to treat?” I was very confused about these terms when I first came across them in the Celiac medical and research literature a few years ago.

“Silent” Celiac Disease refers to patients who have Celiac Disease (elevated Celiac antibodies on blood testing and abnormal small bowel mucosa on endoscopy and biopsy) but no outward symptoms (or at least, do not appreciate any abnormal symptoms). Many silent Celiacs are picked up when they are screened for Celiac Disease due to having a family member with Celiac Disease and/or being in a high risk category for Celiac Disease, i.e. having Type 1 Diabetes.

“Latent” or “Potential” Celiac Disease is the term for when a patient has abnormally high Celiac antibodies on blood testing but either normal, or almost normal, small bowel mucosa on endoscopy. Many with potential Celiac Disease have abnormal symptoms. Some patients with this problem are told they are gluten sensitive, some have been told that they may have “early” or “pre” Celiac Disease, some are told by their doctors that they can continue to eat gluten, and others are advised by their doctors to go gluten free. My understanding is that, in recent years, the word “potential” is preferred over the word “latent” to describe this group.

Dr. Daniel Leffler, from the Celiac Center at Beth Israel Deaconess in Boston, presented the case for the GF diet in patients with potential and silent Celiac Disease, while Dr. Riccardo Troncone, from Naples, Italy, presented the case against the GF diet in these populations. Here are some interesting points that were brought up during both sides of the debate:

Children with first-degree relatives with Celiac Disease (parents and/or siblings) should be screened for Celiac Disease every 2-3 years in the absence of outward symptoms. Many “silent” Celiacs who think they feel “fine” prior to diagnosis will notice improvement on the GF diet. The presenters reminded us that 60% of newly diagnosed Celiacs have atypical symptoms.

There are many types of tissue transglutaminase (TTG) antibodies. Type 2 TTG antibodies can attack the placentas of pregnant women, type 3 cause the skin problem of dermatitis herpetiformis, and type 6 can attack the brain and nervous system. As an aside (from another talk during the ICDS), the commercially available assays in the U.S. test for Type 2 only!

There is conflicting information of the risks to silent Celiacs who do not go gluten free. One study in 2006 (Metzger, et al.) showed that untreated silent Celiacs have an increased risk of mortality and cancer over a 10 year period. But another study in 2009 (Lohi, et al) did not show an increase in cancer for this group. As with many areas, more research is necessary.

According to Dr. Troncone, it is not known if untreated silent Celiac Disease is associated with the development of other autoimmune diseases. He did state that going GF does not improve blood glucose control in patients who have both silent Celiac Disease and Type 1 diabetes.

Dr. Leffler presented research that shows that up to 50% of potential Celiacs will develop full blown Celiac Disease over a 5 year period and reminded us that TTG antibodies can cause harm even if there are no intestinal changes. He also stated that in order to be diagnosed with “potential” Celiac Disease that one must have an abnormally high TTG antibody level on at least 2 separate occasions (this is to rule out a false positive on the initial test).

I felt that the take home message from this lecture/debate was that those with silent and potential Celiac Disease should be on the GF diet, but that much more research is needed. Per my notes, they recommended that silent Celiacs should be GF, but it was not explicitly stated that potential Celiacs need to be GF. My concern is that many potential Celiacs may actually have full blown Celiac Disease that was not picked up on biopsy (see my previous ICDS post for information on how biopsies can be done incorrectly and that the damage from Celiac Disease can be missed). I will update all of my ICDS posts once I can get my hands on the power point presentations from the lectures, which I hope is soon! We were unable to take photos of the slides and although I tried to write as quickly as I could, I will add in key information that I may have missed.

Also, as a total aside, I am thankful to the anonymous reader who has nominated me for the WEGO Health “Geek Health Activist” of the year award. I have never been so proud to be called a geek in my entire life!

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Good Reads (Mostly Gluten-Free)

I have always been passionate about reading. Between my book club and blogging world, I have been introduced to some great books since the beginning of this year. I will share a list of some of my favorites with you. Please keep in mind that I am not a professional book reviewer and that the last time I took an English/writing class was during my freshman year of college!

1. The Gluten-Free Edge by Peter Bronski and Melissa McLean Jory.

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If you are an athlete with either Celiac or non-celiac gluten sensitivity, this is the book for you. It is full of practical advice and I made the mistake of reading it after training for my first marathon last spring, instead of before. Peter and Melissa are bloggers and truly understand what it is like to live with gluten-intolerance/Celiac Disease.  There are great, easy recipes at the end of the book too.

2. Wild by Cheryl Strayed

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This autobiography tells the story of a woman who hiked the Pacific Coastal Trail by herself in the 1990s. Her story makes having Celiac Disease seem not so bad! It’s a quick read but inspirational.

3. Mind over Medicine by Lissa Rankin, M.D.

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This is a non-fiction piece by a former OB-GYN who has immersed herself in the spiritual side of medicine. She does a wonderful job of describing the placebo and nocebo effects, and the power of our minds in our bodies’ abilities to deal with and, in some cases, heal from chronic illnesses.

4. Beautiful Ruins by Jess Walters

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I bought this at an airport kiosk during an unanticipated flight delay.  The novel is based in a small Italian town near the Cinque Terre on the Mediterranean, spans several generations, and is extremely well-written.  It reminded me a bit of some of Jonathan Franzen’s novels that I have read in past years.

5. Half the Sky by Nicholas Kristof and Sheryl WuDunn

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This beautifully-written book blew me away and opened my eyes to the modern-day oppression of women throughout the world. The authors tell the stories of women who have devoted their lives to helping other women escape sexual slavery and other oppressive environments, including Somaly Mam of Cambodia who has devoted her life to rescuing young girls from brothels.  There is also a 2 part documentary about the book that is aired on PBS from time to time. Please read this book and share it with others to get the word out!

6. The Alchemist by Paolo Coelho

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This simple fable tells the story of one boy’s quest to find his “personal legend” and in doing so, reminds us of the importance of living in the moment. I am thankful to have been introduced to this author and look forward to reading more of his novels.

7. Her Best Kept Secret by Gabrielle Glaser

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Ms. Glaser gives a historical overview of alcoholism and women in the U.S. and explains why AA (and rehab programs based on the 12 steps) may not be the best fit for some women alcoholics. It was eye-opening and helped me to relate to some close friends who are struggling with similar issues.

8. Pet Goats and Pap Smears by Pamela Wible, M.D.

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This book consists of a series of short stories by Dr. Wible, a family practice physician in Oregon who has created the first “patient designed” medical practice in the U.S. Dr. Wible reminded me that it is okay to cry with, hug, and show emotion to my patients and their families. It reminded me why I entered medicine in the first place (to be able to care for others and help people heal).

9. The Impossible Lives of Greta Wells by Andrew Sean Greer

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Greta, the main character in this book, is able to travel between 3 time periods and live parallel lives. If you liked “The Time Traveler’s Wife” you will like this book too. I think I finished it in only 2 or 3 nights, which is pretty good for me these days.

10. The Sense of an Ending by Julian Barnes

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This short novel shares the reflections of a man who lost his best friend to suicide during early adulthood.  If I try to describe it, I am not going to do it justice, so I suggest instead, that you read it and reflect, and then read it again.

Have you read any good books lately? If so, feel free to suggest away….some of the best suggestions I have gotten for books to read have been from total strangers!

 

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Updates on Celiac Disease Screening and Testing from the 2013 International Celiac Disease Symposium

It’s been a busy three weeks since I attended the 2013 International Celiac Disease Symposium (ICDS) in Chicago and I have dedicated only two posts to the symposium thus far (as I was reminded by my friend last night). So, here is some more information for you. This will be post #3 of about 9 or 10 total.

On the first day of the conference, Dr. Benjamin Lebwohl from Columbia gave a lecture entitled “The Correct Diagnostic Approach.” Some of his bullet points on the diagnosis of Celiac Disease included the following:

  • At the current time, most algorithms for diagnosis use both blood tests (serology) and a small bowel biopsy.
  • The TTG IgA antibody is the blood test that is the most sensitive and specific for Celiac Disease. If a patient has a selective IgA deficiency (occurs in about 3% of the population), the deamidated gliadin peptide IgG (DGP IgG) can be useful for screening. The DGP IgA antibody is also more sensitive than the TTG IgA antibody in children under the age of 2.
  • The Celiac antibody tests are imperfect. In approximately 10% of Celiac patients, at time of diagnosis the antibody tests will be negative (normal) but there is still damage seen on biopsy. If these patients had only blood tests performed, their cases of Celiac Disease would be missed.
  • All patients with Irritable Bowel Syndrome (IBS) should be tested for Celiac Disease.
  • It is not feasible to screen all people for Celiac Disease because the positive predictive value (PPV) of the Celiac tests is too low. PPV refers to the percentage of patients with a positive test result who actually have a disease. He stated that if all people were screened, 2/3 of people with abnormal Celiac antibodies would actually not have Celiac Disease (too many false positives) .
  • Lastly, he reminded us that it is crucial that 4 to 6 biopsies be taken during endoscopy, as the damage from Celiac Disease can be missed if too few biopsies are taken. There are many people walking around who have Celiac Disease but were told that their small bowel biopsies were normal because not enough biopsies were taken. If you are interested in reading more about this, I discussed this in a recent post.

Later in the day, Dr. Enzo Bravi from Europe discussed rapid “point of care” tests for Celiac Disease.  There are several tests on the market that require only a few drops of blood and can give results in 5 to 10 minutes.  Simtomax and Biocard are two examples that are used in Europe and other parts of the world.  All of the rapid tests look for some combination of antibodies (TTG IgA, total IgA, DGP IgA and IgG, etc).  There are hopes that these tests will be especially useful in pediatric populations and in developing countries.  Dr. Bravi is currently researching if these tests can be used to assess compliance with the GF diet in Celiac patients who are already GF.   He emphasized that these tests are not intended to be used for the final diagnosis of Celiac Disease.  For more on the Simtomax tests, please see link.  I had an opportunity to briefly speak with Dr. Bravi during one of the breaks and learned that none of these tests are FDA approved for use in the U.S.  If/when they are approved,  I would love to be able to use them in a clinical research study!

Session 4 of the ICDS focused on the pathology of Celiac Disease.  The speakers were Drs. Marsh, Hart, and Bhagat.  We were reminded that small intestinal (duodenal) tissue biopsies are graded from Marsh Type 0 (normal) to Type 3 (villous atrophy and destruction).  Types 1 and 2, the intermediate lesions, have infiltration of tissues with white blood cells, which is called intraepithelial lymphocytosis (IEL). Type 2 also includes tissue hyperplasia, or thickening.

Type 1 lesions, with IEL only, can be seen in IBS and other causes of malabsorption.  If a patient has a Marsh Type 1 lesion in the duodenum and positive TTG antibodies, the diagnosis is either Celiac Disease or Crohn’s Disease.  If anti-endomysial antibodies are present, it is Celiac Disease, and if they are absent, it is Crohn’s Disease.

There are several other diseases that can cause villous blunting that is similar to that seen in Celiac Disease.  They include the following:

  1. Olmesartan associated enteropathy
  2. Common variable immunodeficiency (CVID)
  3. Crohn’s Disease
  4. Giardia infection
  5. Tropical sprue
  6. Autoimmune enterocolitis

CVID, an immunodeficiency, has a mean age of diagnosis of 35.  Two thirds of patients with CVID have increased IEL +/- villous atrophy on their biopsies.  Celiac antibody tests are often negative.  Patients with CVID have no improvement on the gluten free diet. This is one of the biggest red flags that CVID is a possibility for a patient.  CVID needs to be ruled out in cases of refractory (non-responsive) Celiac Disease.

Olmesartan is a medication used for high blood pressure (hypertension) that is in a category of drugs called ACE inhibitors. It can cause duodenal damage that is almost identical to that seen in Celiac Disease. Colchicine is another drug that can cause similar bowel changes.

The speakers emphasized that in patients with refractory Celiac Disease (that do not respond to the gluten free diet), #1-6 need to be excluded.

More information from ICDS to come, including what to do for those with “potential” Celiac Disease and nutrional aspects of Celiac Disease.  Thank you for both reading and being patient with me!

For additional information from the conference, please check out recent posts from both The Savvy Celiac  and Pretty Little Celiac who were official ICDS bloggers.

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What are medical students learning about Celiac Disease these days?

I’ve been wondering this for a while. I graduated from medical school 10 years ago, which makes me a relatively “young” doctor.  Although I did learn about Celiac Disease during my medical training, the image that I had burned in my mind was of a sickly child with a huge belly, diarrhea, and failure to thrive.  I do not recall seeing a single adult patient with it during my clinical years of medical school, outside of a patient with Celiac who came to one of our genetics lectures to share her experiences.  I vividly remember thinking that her gluten free life sounded horrible (sad, but true!)

Although I now work in a community hospital, I have a teaching appointment at a large, well-respected medical school which allows me to be able to interact with and teach medical students on occasion.  I recently worked with an exceptionally smart and motivated student who hung out with me for a day. Just for fun, at the end of our day together, I asked if she had ever heard of Celiac Disease.  She told me that she had learned about Celiac Disease during her pre-clinical years (first and second year).  I gave her a short quiz on what she had learned about Celiac Disease. Here are her answers:

What is Celiac Disease?  An autoimmune disease where the body produces an antibody to gluten and is unable to digest gluten.  Exposure to gluten leads to characteristic GI symptoms of bloating and diarrhea, and is also associated in some cases with dermatitis herpetiformis.

How is Celiac Disease diagnosed? Testing for the presence of TTG antibodies.

Have you seen a patient with Celiac Disease? If so, what were his or her symptoms?  Yes, it was a man with bloating, diarrhea, weight loss, and a rash of the upper extremities.

What is your best estimate as to the prevalence of Celiac Disease?  1 in 100,000

I thought that her answers were okay until I read the 1 in 100,000! Although these are the answers of only one medical student, who is only half way through her medical schooling, my impression is that students are still learning that Celiac Disease is a rare disease associated with digestive and skin symptoms only. I really hope that I am wrong, and I will report back as I further investigate this topic.

Are any of you in medical or nursing school right now? If so, would you be willing to share what you have actually learned about Celiac Disease in your lectures?

 

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“Celiac Disease Now”

Note: This is part 2 of several posts summarizing information discussed at the International Celiac Disease Symposium (ICDS) 2013 in Chicago 9/23-9/25. 

The introductory lecture of the clinical forum of the International Celiac Disease Symposium (ICDS) 2013 in Chicago last week was entitled “Celiac Disease Today: An Overview” given by Drs. Alessio Fasano and Peter Green.

Although the official slides and presentations from the symposium are not yet available for purchase, based on my notes the following topics were addressed during this opening session:

Celiac Disease involves both an innate and an adaptive immune system response to gluten. 1 in 133 Americans have Celiac Disease. The risk of Celiac Disease in 1st degree relatives of Celiac patients (parents, siblings, and children) is 1 in 22. The risk in 2nd degree relatives (aunts and uncles and grandparents) is 1 in 39.  Research has shown that the true prevalence of Celiac Disease has increased by 15% in the last few decades.  Most people with Celiac Disease (83%) are unaware that they have it…

Although the current “gold standard” for diagnosing Celiac Disease is to perform an endoscopy and small intestinal biopsy, Dr. Fasano did bring up the concept of the “4 out of 5” rule, in which some have proposed that Celiac Disease can be diagnosed if a patient meets at least 4 of the following 5 criteria:

  1. Adverse symptoms when gluten is ingested
  2. Elevated Celiac antibodies on serology (blood tests)
  3. An improvement in symptoms when gluten is removed from the diet
  4. Genetic markers (HLA DQ2 and/or 8, although he did mention that 1-2% of Celiacs are DQ2 and DQ8 negative)
  5. Abnormal small intestinal (duodenal) biopsy

Anti-TTG IgA antibodies are greater than 95% sensitive and 95% specific for Celiac Disease.  The DGP IgA antibodies have a sensitivity and specificity of greater than 90%.

No one is born with Celiac Disease and it can develop at any age. Celiac Disease involves a shift from gluten tolerance to an immune (autoimmune) response to gluten.  The current thinking is that in order to develop Celiac Disease, one must have a genetic predisposition, ingest gluten, and be exposed to a (yet to be defined) environmental factor. In order to figure out exactly what the environmental factor(s) are, researchers will need to follow a large cohort of children from birth and monitor them for the development of Celiac Disease.  We did learn later during the conference that this is actually being done as part of the “Prevent Celiac Disease Study” in Europe, which I will discuss in a later post (www.preventCD.com).

It is now believed that a change in the gut microbiome (bacteria) is involved in the pathogenesis and development of Celiac Disease.  Although our gut microbiomes are inherited from our mothers,  the composition of our gut bacteria is continually changing.  There has been some recent research showing that birth by c-section increases a child’s risk of Celiac Disease by 2-3x. During a normal vaginal delivery newborns’ digestive tracts are colonized by bacteria that they pick up from their mothers’ bodies during labor and delivery.  During a c-section this mother to infant transfer of bacteria does not take place.

There are over 70 clinical trials of Celiac Disease going on right now, many of which are currently enrolling subjects.  You can check out www.clinicaltrials.gov and search for “celiac disease” for more information.

Dr. Green stated that currently recognized gluten related disorders include Celiac Disease, gluten ataxia, dermatitis herpetiformis, wheat allergy, and non celiac gluten sensitivity (NCGS).  NCGS was discussed at the ICDS pre-conference (see my previous post for more details).  Celiac Disease can be differentiated from these disorders by the presence of intestinal inflammation and villous atrophy.  Based on a 2012 publication, only 17% of people with Celiac Disease have actually been diagnosed. Young men in the age range of 20-30 have the lowest rates of diagnosis.

Currently recognized risk factors for Celiac Disease include formula feeding, being introduced to gluten before 4 months of life or after 7 months of life, being born during the winter months, PPI (proton pump inhibitor, a type a reflux medication) use, and frequent respiratory infections during infancy.  Much of this information comes from Sweden, where there was an epidemic of Celiac Disease in children during the 1980s and 1990s which triggered much research and analysis.

We were cautioned of a few pitfalls in the diagnosis of Celiac Disease, many of which I will describe in more detail in future posts.  Some of the researchers have found that TTG (tissue transglutaminase) antibody testing from certain labs can be unreliable.  Likewise, some research has shown that only 35% of the biopsies performed during evaluations for Celiac Disease are done correctly. Most GI docs take only 2 samples of small bowel, despite the current recommendations that 4-6 samples be taken.

Although Celiac Disease is often associated with digestive symptoms, many patients do not have any symptoms at all (i.e. they are picked up because they are screened due to having a family member with Celiac).  Some of the most severe cases of Celiac Disease have been found in patients whose only symptom is anemia (low red blood cell count).  On the flip side, a 2009 study showed that only 51% of patients with symptoms of Celiac Disease were actually screened.

A few sort of depressing stats:

-only 20% of patients with Celiac Disease have adequate follow-up after diagnosis

-the average U.S. medical student learns about Celiac Disease for one hour during medical school (I can personally relate to this one!)

And things that I think everyone should know:

-If a patient has dermatitis herpertiformis (DH), then they have Celiac Disease. Dr. Green stated that if one has DH, there is no need for a small bowel biopsy.

-1st degree family members of Celiac Disease patients should be screened every 5 years.

-The Celiac Center at Beth Israel Deaconess Medical Center in Boston has a great new website called “Celiac Now.” Check it out here.

More ICDS information to come soon…Also, any questions are welcome in the meantime!

 

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Recap of Non Celiac Gluten Sensitivity ICDS Pre-Conference 9.22.2013

I was fortunate to be able to attend the International Celiac Disease Symposium (ICDS) in Chicago last week, during which I was able to hear lectures given by world expert doctors, researchers, and nutritionists.  Although I got home 3 days ago, my mind is still spinning from all of the information that I learned and tried to absorb during the 22 hours of lectures.  I was also fortunate to meet some awesome people from the Celiac internet community, including Erica from Celiac and the Beast, Rebecca from Pretty Little Celiac, G-Free Laura, and The Gluten-Free Professor. Although I was not one of the official bloggers from the conference, I did learn some information that I’d like to share with you.

Over the next few weeks I plan to summarize much of the information that I learned about both Celiac Disease and Non Celiac Gluten Sensitivity (NCGS) at the symposium, as well as to try to convince you to attend the next ICDS in Prague in 2015 with me, as my dear husband has already declined.

On Sunday night there was a pre-conference on NCGS with a panel of speakers who are world’s experts on NCGS.  I am very interested in this topic as I have several family members who have NCGS and I am amazed by the lack of awareness of this condition in the medical community. There are many doctors who believe that you cannot get sick from gluten unless you have Celiac Disease (intestinal damage) and as you may already know, this is not true!

The experts who presented information about NCGS included Drs. Fasano, Green, Kelly, Mooney, Volta, Schuppan, and Leffler. Below is a summary of some of the information that was shared with the audience:

Patients with NCGS experience adverse symptoms after ingesting gluten but they do not meet the criteria for getting diagnosed with Celiac Disease (namely, they do not have the findings of Celiac Disease on small bowel biopsy).  NCGS is a “diagnosis of exclusion” meaning that, ideally, Celiac Disease is ruled out before a diagnosis of NCGS is given. Despite this, many with NCGS are self-diagnosed.

Between 0.5 to 6% of U.S. population has NCGS, depending on which study is referenced.  The average age of diagnosis is around 40 years, but the research on NCGS is really still in its infancy. Some patients with NCGS have abnormally high antibodies that are associated with Celiac Disease, such as TTG IgA and/or anti-gliadin antibodies, and others do not. About half of patients with NCGS have one of the two main Celiac genes (HLA-DQ2 and/or DQ8) and half do not.  There are currently no biomarkers for NCGS, which plays a large part in the difficulty of diagnosis.

In a large Italian survey, the most common symptoms associated with NCGS included abdominal pain, bloating, diarrhea, fatigue, headache, anxiety, and a “foggy mind.” This mirrors the symptoms that have been described in previous studies.

Dr. Green introduced the acronym PWAWG which stands for People Who Avoid Wheat and Gluten.  According to Dr. Green, not all PWAWGs have NCGS, and many have other problems such as small intestinal bacterial overgrowth (SIBO) and fructose intolerance.  In one recent study, which has gotten a lot of attention, many NCGS patients’ reactions to gluten totally disappear when FODMAPs are also removed from the diet (see link to paper in references below).  However, the researchers only looked for a resolution of abdominal and digestive symptoms and we do not know if other symptoms of NCGS, such as headaches and anxiety, also improved when FODMAPs were removed.  More research is needed in this area. Although I will discuss FODMAPs more in the upcoming weeks, you can refer to Stanford’s website for more information on the low FODMAP diet if interested.

I learned that both autism and schizophrenia have been associated with anti-gliadin antibodies. There was a publication in 2011 that showed that there is subset of autistic children whose symptoms improve on a gluten free and casein free diet.  There are also ongoing clinical trials to see if the GF diet can help improve symptoms associated with schizophrenia.  The tissue transglutaminase antibody (TTG) type 6 looks to be a marker of neuroinflammation and is a possible biomarker for schizophrenia. TTG type 2 antibodies are what are currently measured in blood tests for Celiac Disease.

The pathogenesis of NCGS appears to involve the innate immune system and it is possible that wheat amylase trypsin inhibitors (ATIs), a totally different portion of wheat than the gluten proteins, may be involved. I wrote about this a bit last winter (see link) and the article referenced can be found in the references below.

During the panel discussion, we were reminded that the only way that a NCGS individual who is already GF can find out if he or she has Celiac Disease is to undergo a “gluten challenge.”

One of the last questions to the panel was, “Who should be avoiding gluten?” The answer given was patients with Celiac Disease, NCGS, and possibly autism and schizophrenia.

I also learned that Dr. Fasano recently published a book called “A Clinical Guide to Gluten-Related Disorders,” which I plan to purchase a copy of ASAP. It is available on Amazon.com (see here).

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Dr. Fasano reminded us that there is currently more confusion than understanding of NCGS, and that it is similar where we were with understanding Celiac Disease 20 to 30 years ago. The great thing is NCGS is finally being recognized and properly studied!

For a great overview of NCGS, please check out the following abstract from PubMed by Dr. Volta, who was one of the experts on NCGS at the symposium:

Volta U, Caio G, Tovoli F, De Giorgio R.Cell Mol Immunol. Non-celiac gluten sensitivity: questions still to be answered despite increasing awareness.  2013 Sep;10(5):383-92. doi: 10.1038/cmi.2013.28. Epub 2013 Aug 10.

Recently, the increasing number of patients worldwide who are sensitive to dietary gluten without evidence of celiac disease or wheat allergy has contributed to the identification of a new gluten-related syndrome defined as non-celiac gluten sensitivity. Our knowledge regarding this syndrome is still lacking, and many aspects of this syndrome remain unknown. Its pathogenesis is heterogeneous, with a recognized pivotal role for innate immunity; many other factors also contribute, including low-grade intestinal inflammation, increased intestinal barrier function and changes in the intestinal microbiota. Gluten and other wheat proteins, such as amylase trypsin inhibitors, are the primary triggers of this syndrome, but it has also been hypothesized that a diet rich in fermentable monosaccharides and polyols may elicit its functional gastrointestinal symptoms. The epidemiology of this condition is far from established; its prevalence in the general population is highly variable, ranging from 0.63% to 6%. From a clinical point of view, non-celiac gluten sensitivity is characterized by a wide array of gastrointestinal and extraintestinal symptoms that occur shortly after the ingestion of gluten and improve or disappear when gluten is withdrawn from the diet. These symptoms recur when gluten is reintroduced. Because diagnostic biomarkers have not yet been identified, a double-blind placebo-controlled gluten challenge is currently the diagnostic method with the highest accuracy. Future research is needed to generate more knowledge regarding non-celiac gluten sensitivity, a condition that has global acceptance but has only a few certainties and many unresolved issues.

Additional References from ICDS pre-conference:

1. DiGiacomo, et al. Prevalence of gluten-free diet adherence among individuals without celiac disease in the USA: results from the Continuous National Health and Nutrition Examination Survey 2009-2010. Scand Journal Gastroenterol. 2013 Aug;48(8):921-5. doi: 10.3109/00365521.2013.809598. Epub 2013 Jul 8.

2. Biesiekierski JR, Newnham ED, Irving PM, Barrett JS, Haines M, Doecke JD, et al. Gluten causes gastrointestinal symptoms in subjects without celiac disease: a double-blind randomized placebo-controlled trial. Am J Gastroenterol 2011;106:508–14.

3. Biesiekierski JR., et al. No effects of gluten in patients with self-reported non-celiac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates. Gastroenterology. 2013 Aug;145(2):320-8.e1-3. doi: 10.1053/j.gastro.2013.04.051. Epub 2013 May 4.

4. Junker, et al. Wheat amylase trypsin inhibitors drive intestinal inflammation via activation of toll-like receptor 4. J Exp Med. 2012 Dec 17;209(13):2395-408. doi: 10.1084/jem.20102660. Epub 2012 Dec 3.

 

 

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Celiac Disease “Journal Club” 2013 Part 2

This is going to be a quick post, as I am getting ready to head to Cincinnati for a wedding, and then to Chicago for the International Celiac Disease Symposium 9/22-9/25. I look forward to being able to meet some of you in person at this conference, and to hear the experts, including Dr. Fasano, speak about the most recent research, recommendations, and guidelines regarding the diagnosis and management of both celiac disease and non-celiac gluten sensitivity.

Below are summaries of three recent journal articles that may be of interest. Part 1 of my Celiac “Journal Club” series can be seen here. Under each article summary statement I am including a link to some of my previous posts about relevant topics.

1. “2013 update on celiac disease and eosinophilic esophagitis.” Authors: Pellicano, R, et al. Published in Nutrients in Aug. 2013.

-authors reviewed 30 publications regarding celiac disease and eosinophilic esophagitis (EoE), a chronic inflammatory disorder of the esophagus which is on the rise. They found that the prevalence of EoE in subjects with celiac disease is 10x higher than the general population in the majority of the studies. They recommend that all children who get small intestinal biopsies for celiac disease diagnosis also get evaluated for EoE.

-for more information on the relationship between EoE and Celiac Disease, as well as an overview of the symptoms of EoE, please see my post from Jan. 2013.

2. “The rising incidence of celiac disease in Scotland.”  Authors: White, L, et al. Published in Pediatrics in Sept. 2013.

-researchers looked at the incidence of celiac disease in children in Scotland from 1990 to 2009. Overall incidence increased by 640% over this 20 year period, with the incidence of “atypical” celiac disease increasing by 1140%!

-of note, 51% of the children who were actively screened for celiac disease and found to have celiac disease had no symptoms at all. Active screening takes place if a child is in a “high risk” category for celiac disease, i.e. has a sibling or other first degree relative with celiac disease.

-for more information on the screening of children for celiac disease, and who should be screened, please check out my post from June 2013.

3. “Potential new mechanisms of placental damage in celiac disease: anti-tranglutaminase antibodies impair human endometrial angiogenesis.” Authors: Simone, N., et al. Published in Biol Reprod in Aug. 2013.

-the authors demonstrate that tissue transglutaminase antibodies seen in celiac disease damage the placenta by interfering with the development of crucial placental blood vessels.  This finding helps to explain why women with untreated celiac disease often have problems of infertility, miscarriages, and fetal growth restriction.

-I wrote about the topics of Celiac Disease and Pregnancy in Jan. 2013 (see link) and Celiac Disease and Infertility in Mar. 2013 (see link).

I anticipate returning from Chicago with a lot to write about on this page. I will also be making my conference tweeting debut (@PatientCeliac), so feel free to follow me for real-time updates. Lastly, if you will be attending, please reach out and let me know so that we can meet!

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My, Oh My, Peripheral Neuropathy

I spent a good chunk of last Christmas Eve in an MRI scanner, getting my spine analyzed for the white matter lesions of multiple sclerosis (MS). Mike, the MRI technician, piped George Winston’s “December” CD through my MRI headphones, but the music did little to drown out the loud hammering sounds of the MRI and the thoughts that were racing in my head. I prayed and bargained while I was in the scanner, with thoughts such as, “If I do have MS, please let it be relapsing-remitting and not primary progressive,” and, “If I am going to become disabled from MS, please let it happen after my 4 babies have been raised and are out of the house.”

I developed a peripheral neuropathy (nerve damage) last fall, about 2 and a half years after going gluten free for my Celiac Disease diagnosis. In September 2012 I felt better than I had in quite a while and was training for my first half marathon after having Claire in March. Then, the first week of October, I had a pretty bad “glutening” episode (thanks to Trader Joe’s) which took me quite a while to bounce back from. Two weeks later, while visiting family in Boston, I developed persistent numbness and tingling in my hands, feet, tongue, and right upper lip, followed by extreme fatigue and difficulty concentrating/lapses in my short term memory. I went to see a neurologist after my symptoms had persisted for about a week and a half. My full neurologic exam at this point was unremarkable. My brain MRI was normal. I was evaluated for Lyme Disease, lupus, diabetes, sarcoidosis, and several other autoimmune and vascular diseases. My Vitamin B12 and copper levels were normal. My thyroid function was assessed (I have Hashimoto’s Disease and take daily levothyroxine) and everything thyroid-wise was normal as well. My neurologist told me that based on recent research, as well as in his experience, Celiac Disease is the third most common cause of the development of a peripheral neuropathy, behind diabetes and alcoholism. He told me that if my neuropathy was indeed Celiac-related, that it should resolve in 3-6 weeks. And it did. I was out running one day and I finally felt like my feet were back to normal after weeks of running with numb feet (which, looking back, probably wasn’t the smartest thing to do!)

We took all gluten out of our home at this point to avoid exposing me to any inadvertent gluten cross-contamination. I stopped eating GF processed foods entirely. But then Thanksgiving came, and I know that I got a hit of gluten somewhere, and about one week later my neuropathy returned to me. I was in the middle of watching my daughter perform in a Christmas ballet routine with Martina McBride and I had a sudden onset of numbness in my hands, feet, tongue, and upper right lip. Again, the symptoms lasted for days which turned into weeks. I returned to my neurologist and he ordered the rest of the testing for multiple sclerosis: a retinal exam to look for optic nerve thinning, visual evoked potentials, and the Christmas Eve spinal MRI, all of which were normal. The numbness and tingling slowly resolved and were gone by New Year’s. I was grateful to not have MS.

Since December, I have had the neuropathy symptoms return only twice, once in January and once in July. They have both occurred after traveling, the only time that I am really ever taken out of my gluten free home (aka safe haven) and been exposed to cross-contamination. Fortunately,  for reasons that are still unclear to me, my neuropathy symptoms lasted just days, instead of weeks, these last two times.

I started this blog last fall as a way of coping with my new neurologic symptoms from Celiac Disease. I had truly under-appreciated the effects that small amounts of  gluten cross-contamination could have on my body until I developed the peripheral neuropathy. Although I did write about the neurologic effects of gluten last fall (see link), I was not prepared to share my personal experience until now.

In conclusion, many patients with Celiac Disease will go on to develop peripheral neuropathies, even while on a gluten free diet. If you have Celiac Disease or non celiac gluten sensitivity and develop symptoms of a possible peripheral neuropathy, please be evaluated by a neurologist to make sure that something treatable, such as a vitamin deficiency or Lyme Disease, is not going on.

For more information on Celiac Disease and peripheral neuropathy, please check out the following links:

1. Peripheral Neuropathy. National Foundation for Celiac Awareness. Accessed 9/10/2013.

2. Celiac Neuropathy.  The University of Chicago Celiac Disease Newsletter. Spring 2010. Accessed 9/10/2013.

3. Chin, R. and Latov, N. Peripheral Neuropathy and Celiac Disease. Current Treatment Opinions in Neurology. 2005; 7: 43-48.

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Celiac Disease “Journal Club” 2013 Part 1

As some of you may have figured out, I love to keep up to date with the latest research regarding celiac disease and non-celiac gluten sensitivity (NCGS). My interest in research stems from the countless Journal Clubs that I participated in during my decade of medical training. Journal Club gives medical students, residents, fellows, and other trainees the opportunity to learn how to read, interpret, and critically review research articles. Although there are many things which I do not miss about medical training (especially the sleep deprivation), I do miss Journal Club.

I have created my own overview for you of some of the most interesting research articles about gluten-related diseases that have been published during the past few months. This is part 1 of 2.

1. “Clinical features and symptom recovery on a gluten-free diet in Canadian adults with celiac disease.” Authors: Pulido, et al. Published in the Canadian Journal of Gastroenterology in August 2013.

-Almost 6000 adults with Celiac Disease were surveyed regarding their symptoms of Celiac Disease and their recovery on the GF diet. Average age at diagnosis was 45 and average delay in diagnosis was 12 years.

-Conclusions: Although many subjects had a complete resolution of symptoms after 5 years on the GF diet, almost half reported continuing problems with migraines, lactose intolerance, constipation, itchy skin, and depression after being GF for 5 years. Women were less likely than men to report full recovery from symptoms, especially in the areas of abdominal pain, bloating, weakness, diarrhea, anemia, muscle cramps, constipation, migraine headaches, and swelling of the hands and feet.

2.  “Mucosal healing and risk for lymphoproliferative malignancy in celiac disease: a population-based cohort study.” Authors: Lebwohl, et al. Published in Annals of Internal Medicine in August 2013.

-Researchers found that 43% of adults with Celiac Disease in their study population had persistent villous atrophy on follow-up biopsies after being GF. These patients were found to have a significantly higher (3.5x) risk of lymphoma than the general population.

-Conclusion: Partially treated Celiac Disease is associated with cancer.

-For more information please check out this summary article from Columbia University.

3. “Antibiotic exposure and the development of celiac disease: a nationwide case-control study.” Authors: Marild, K., et al. Published in BMC Gastroenterology in July 2013.

-Main objective of the study was to examine the association between antibiotic use and the subsequent development of celiac disease by comparing subjects with celiac disease with matched controls (subjects without celiac disease).

-Antibiotic exposure was found to be associated with an increased risk of celiac disease, intestinal inflammation, and “potential” celiac disease (elevated Celiac antibodies on blood testing without any small intestinal changes seen on small bowel biopsy).

-Conclusion: The first study to show an association between antibiotic doses and the subsequent development of celiac disease. The authors postulate that an alteration of gut flora (ie. killing off of “good” bacteria) may play a role in the development of celiac disease.

4. “Markers of celiac disease and gluten sensitivity in children with autism.” Authors: Lau, N, et al. Published in PLOS One in June 2013.

-The researchers examined 37 children with autism and found that they had significantly higher levels of anti-gliadin IgG antibodies than children without autism (controls)

-Of the autistic children with anti-gliadin antibodies, most did not have either of the celiac genes (HLA-DQ2 and DQ8) and did not have other celiac antibodies (TTG IgA and IgG and DGP IgA and IgG). However, the majority of autistic children with anti-gliadin antibodies did have gastrointestinal symptoms.

-Conclusion: The anti-gliadin (gluten) immune response in autism involves a mechanism that is different from celiac disease.

5. “Colonic involvement in celiac disease and possible implications of the sigmoid mucosa involvement in its diagnosis.” Authors: Picarelli, A., et al. Published in the Journal of Clinical Immunology in July 2013.

-Researchers took samples of the colon (large intestine) of patients with Celiac Disease and evaluated the samples for celiac antibodies. They found that 75% of patients with Celiac Disease had anti-endomysial antibodies and 81% had anti-TTG antibodies in colonic tissue.

-Conclusion: The immune tissues of the large intestine are affected by Celiac Disease. In the future, large intestinal biopsies may be used in diagnosis.

Part 2 will be coming soon. Please feel free to comment and share articles related to celiac disease and/or non-celiac gluten sensitivity which you have found interesting as well. I would love to discuss.

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Women with celiac disease, we are not alone…

I have spent a good portion of this summer enjoying my time with my family, traveling, and not obsessing about celiac disease (which has led me to not write about it either!) Overall, I am comfortable with my gluten free household and life and have accepted my diagnosis. But, the other day, in part due to fatigue and in part due to accidentally eating a KIND bar with soy protein (soy is one of my other food intolerances and I feel like total garbage after eating it), I totally lost my calm. I found my 4-year-old, Gabby, eating a bag of Goldfish crackers when I picked her up from day camp. Instead of hugging and kissing her, and asking her about her day, like I should have, I began to obsess about celiac disease. Thoughts like, “Now I have to clean all of the gluten off of her face and I don’t have any napkins or wet wipes,” and, “Why the heck is she getting Goldfish crackers as a ‘healthy’ snack’?” and, “I cannot afford to get ‘glutened’ this week because I have to be able to work and function as a mom!” went through my mind. The encounter of picking up Gabby from camp quickly became “all about me,” which is one thing that I truly despise about this disease.

That very night I came across a timely article entitled “Everyday Life for Women with Celiac Disease” in which 16 Swedish women with celiac disease share their experiences. Amazingly, there has not been much published on this topic over the years, so I read it with much interest.

Here are some of the common themes that came up in the discussions in the study:

1. Celiac Disease affects a person’s entire life.

2. The experience of persistent fatigue, even after years on the gluten free diet.

3. Many women reported new signs and symptoms in other areas of the body, such as headaches, after starting the gluten free diet.

4. Anxiety about always having to plan ahead to have food to be able to safely eat and frustration at the lack of spontaneity associated with eating outside of the home.

5.  Reluctance to attend parties and social events due to fears of gluten contamination.

6. Feelings of sadness, vulnerability, anger, and hopelessness surrounding having to follow the gluten free diet. Many women felt lonely in their struggles.

I have experienced #1-6 more times than I can count, and although it has gotten easier with time, I continue to struggle to explain to others how careful I need to be with eating food that is not prepared in my own kitchen. Many of my friends and family members have had no idea how careful I need to be about cross contamination, and that I have to avoid foods that not only contain gluten, but that are prepared on surfaces and in equipment where cross contamination might occur.

Reading about the experience of these women with celiac disease made me feel much less alone, much less “crazy,” and I realized that my reaction to Gabby’s Goldfish crackers was probably not as severe as I had initially thought.  I have decided to be a little easier on myself and move on as I know that Gabby definitely already has. Also, when I pick her up today I’ll be better prepared with some wet wipes and paper towels to clean up the gluten crumbs!

Reference:

Roos, Suzanne, Hellstrom, Ingrid, Hallert, Claes, and Wilhelmsson, Susan. Everyday Life for Women with Celiac Disease. Gastroenterology Nursing. 2013. 36(4), p. 266-273.

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Two Things

Thanks to another cancelled flight, I am apart from my family for one more night. I am desperate to see them and cannot put into words how much I miss them.

3 weeks ago we drove 1300+ miles to visit with family in Cape Cod and Boston. I flew back home to work a week ago and am flying back to meet them in Boston and then drive home with them (I would never make my husband do a 1350 mile road trip with 4 kids under 8 by himself!)  We are going to drive north into Montreal and then across northern Ontario to get home, which is going to be quite the 1350 mile adventure.

This quiet evening has given me the opportunity to run, read, and to reflect. I am grateful that I have been diagnosed with this disease, even though there are aspects of it that really stink.  If you haven’t read or heard, there was an article just published in the Annals of Internal Medicine which affirms that those with untreated Celiac Disease have a much higher risk of lymphoma (cancer) than the general population.  If you haven’t read the article, I encourage you to read this summary. I am glad that I am being treated with the gluten free diet and that I have come to the realization that I needed to make my entire household gluten free in order for my intestines to heal and for my symptoms to resolve. I am thankful for all of you who I have “met” and connected with through this blog over the last 8 months.  I am thankful that this disease has caused me to prioritize the nutrition of my family. If learning that untreated Celiac Disease causes cancer does not lead my family members, and others, to get tested for Celiac Disease, then I do not think that anything will. I want you to get tested because I do not want any of you to get lymphoma, not because I want to make your life harder by having to give up bread!

Over the past month I have had the opportunity to see many family members and friends who I have not seen for a while. I wanted to take this opportunity to thank all of you for being so supportive of my gluten free life and give a few examples of the love I have felt…

Mom: Thank you, thank you, thank you for having a cookout for us when we were visiting in July and having a GF spread for me and the kids (tons of fruit and veggies, tortilla chips, GF hot dog buns, ice cream bars, etc.) It was so wonderful to be able to eat everything at a BBQ without being worried about being sick.

Chan: Thank you for bringing your beautiful kids over and making blueberry mojitos for us to drink, and bringing me my own special crispy rice dessert! I hope that next time we can visit for a bit longer and get more adult time to catch up (and drink more Mojitos!)

Ashleigh: Thanks for introducing me to 2 ingredient (banana and egg pancakes) and for letting me visit with beautiful little Luca.

Carol: Thanks for making kick ass guacamole and buying pistachios galore the week in the Cape.  Thanks also for the adult only time, Zumba class with Bunny, and the re-introduction to Gordon Lightfoot.

Ali: Thank you for making an awesome lunch of chicken and mozzarella caprese salad, my absolute favorite salad, when we came to visit. Thanks also for all of the American Girl stuff for the girls.

Dan: Thanks a bunch for buying me my own stash of Celia beer when we hung out…it’s nice to have a new beer to add into the mix and I was so happy to see that Celia is portrayed as being a healthy female Celiac!

Colleen: Thank you for roasting up all of the leftover veggies for me and for basically feeding my kids for the entire week in the Cape so that I didn’t get sick from preparing their food!

Nana and Pop: Thanks for bringing all of the gluten free food down to the Cape for me, buying me and Claire sweet potatoes, taking care to make sure that the grill was clean before cooking for me on it, and for having an never ending stash of gluten free K cups at your house.

Grace, Tommy, Gabby, and Claire: Thanks for always reminding everyone that gluten makes your mommy sick and for going with me to Captain Frosty’s to get gluten free custard. I cannot wait to hug and squeeze and kiss all of you tomorrow!

Tom: Thank you for supporting me throughout this crazy journey, helping to calm me down when I’m acting a bit crazy (which is just once in a while, right?), and providing unconditional love.  I love you very much!

Happy August everyone! Hope to see some of you at the ICD Symposium in Chicago next month!

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The Intestinal Villous Blunting (Flattening) in Celiac Disease is often “Patchy”

Villi are the fingerlike projections of the small intestine where nutrient absorption takes place and are the location of Celiac Disease’s assault on the digestive tract.

Untreated celiac disease leads to blunting (flattening) of the intestinal villi that can be seen when a gastroenterologist performs an endoscopy with biopsy. Despite current controversy over whether or not an endoscopy is necessary for all cases of celiac diagnosis, it is still considered by many experts to be the “gold standard” for officially diagnosing Celiac Disease. I look forward to learning more about this moving target at the International Celiac Disease Symposium being hosted by the University of Chicago in September 2013 (see link).

Although in many cases of Celiac Disease the villous blunting is continuous throughout the small intestine, it has been increasingly recognized that the blunting/flattening can be patchy, and in some cases, localized to one specific portion of the small intestine called the duodenal bulb (see references). Thus, in many cases of Celiac Disease, totally normal areas of intestine alternate with diseased areas. Because of this, experts recommend that gastroenterologists take at least 3 to 4 biopsies, including at least one of the duodenal bulb, when evaluating a patient for Celiac Disease. If not enough biopsies are taken, the diseased portions of the small intestine may be missed (and hence, Celiac Disease not properly recognized). Since starting this blog last fall I have interacted with many people who get terribly ill from eating gluten, have many symptoms of Celiac Disease and have abnormal Celiac antibodies on blood testing, only to be told that they do not have Celiac Disease based on “normal” biopsies. I have also encountered one woman in which no biopsies were taken at all! I strongly suspect that some of these “gluten intolerant” people actually have Celiac Disease.

A group of researchers in Italy (Valitutti, et al.) have recently published the findings of a study in which they mapped the patchiness of villous blunting in 41 pediatric patients with Celiac Disease. 17/41 (41.5%) showed diffuse villous blunting throughout and 24/41 (58.5%) had patchy villous lesions. Of note, one child with Celiac Disease had villous blunting in the jejunum, the second portion of the small intestine, only. In most cases only the duodenum, the first portion of the small intestine, is biopsied, so had this child not had his jejunum biopsied for the study, his celiac changes would have been missed. I find this to be very significant, as he would have likely been labeled as being gluten intolerant, or having “Potential” Celiac Disease as opposed to having actual Celiac Disease….for more on Potential Celiac Disease, please see my previous post from March 2013.

In conclusion, if you are one of the gluten intolerant or gluten sensitive patients out there who had a “normal” biopsy (or are parents of one), I encourage you to obtain your biopsy results and check out how many tissue samples were actually taken from your small intestines. Check also to see if your duodenal bulb was evaluated. You may be surprised by what you find!

Also, if you are going to be attending the Celiac Disease Symposium in Chicago next month I would love to connect with you in person. Shoot me an email at thepatientceliac@gmail.com, or comment below. We are very fortunate to be having it be held in the U.S.A. this year and it will be a great opportunity to learn and network.

References:

1. Valitutti, F., et al. Mapping histologic patchiness of celiac disease by push enteroscopy. Gastrointestinal endoscopy. E-pub, ahead of print. June 2013.

2. Kurien, M., et al. Duodenal bulb biopsies for diagnosing adult celiac disease: is there an optimal biopsy site? Gastrointestinal Endoscopy. 2012. 75 (6): 1190-6.

3. Ravelli, A., et al. How patchy is patchy villous atrophy?: distribution of histological lesions in the duodenum of children with celiac disease. American Journal of Gastroenterology. 2010. 105(9): 2103-10.

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Celiac Disease and Multiple Food Intolerances

There are many of us with celiac disease who develop additional food intolerances after going gluten free.  Despite maintaining control of my celiac symptoms by being strictly gluten free, I have become intolerant to soy (2011), sulfites (2012), and too much dairy (late 2012-early 2013).  My allergy skin prick tests for soy and milk were negative, which shows that my reactions are not IgE mediated, and, thus, not “typical” food allergies in which there would be a concern about anaphylaxis. I have no knowledge of getting sick from soy, dairy, or sulfites prior to my celiac diagnosis in 2010, however, I may not have realized that I was reacting to these foods because I felt so cruddy from chronic gluten ingestion.

I have scoured the medical literature and spoken with as many other MDs as I can, and I have found no research or publications that show a link between celiac disease and other food intolerances.  There was a nice Italian study published last fall which showed that patients with “wheat sensitive” irritable bowel syndrome (IBS) do have a high incidence of food intolerances, and this led me to the conclusion that many of us with Celiac Disease may also have IBS.  Please see my post from earlier this year for additional information.  Likewise, last month in The American Journal of Gastroenterology, there is a Swedish study (see references) in which the authors describe the multiple food intolerances seen in patients with IBS.  The most common culprits for gastrointestinal symptoms in their sample of IBS patients included dairy (49%), beans/legumes (36%), wine/beer (31%), apples (28%), flour (24%), plum (23%), and pork (21%).  They reiterate that all of the following foods can precipate digestive symptoms in IBS patients: dairy, foods which are high in FODMAPS (fermentable oligo-, di-, monosaccharides, and polyols), high fat and spicy foods, foods with high levels of biogenic amines, i.e. histamine (such as soy), lectins (present in beans), and preservatives, such as benzoic acid and sulfites.

Although I do have “IBS” type symptoms after ingesting soy and sulfites, as well as large amounts of dairy, most of my symptoms of food intolerances are in other parts of my body.  When I eat soy I develop headaches, nausea, fatigue, flushing, and joint pains.  Every time I have developed this constellation of symptoms, I have been able to trace them to accidental soy exposure.  With sulfites I develop shortness of breath, wheezing, and flushing right away, followed by headaches, fatigue, joint pains, numbness, “brain fog,” and I overall feel lousy. With suflites I feel very similar to how I feel after being glutened, except when I get glutened I do not have the wheezing or shortness of breath occur.  You can read more about my sulfite issues in my previous post.

So, yes, while I believe that many of us with Celiac Disease have IBS, and that our intermittent digestive symptoms can be attributed to IBS, the real questions are why do so many of us have IBS (leading to additional food intolerances) and what is the real cause for our IBS symptoms?

Through reading, doing online research, and discussions with others who I have met through social networking, I think that the answer is histamine.  I believe that some of us with Celiac Disease are experiencing a histamine overload which is waging war on our bodies.

Histamine is a chemical produced by two types of cells in our bodies: basophils (a type of white blood cell) and mast cells. It is involved in the immune response and is an inflammatory agent.  Most of us are familiar with histamine being overproduced in hayfever and other seasonal allergies, and many of us have to take antihistamines, such as Claritin and Zrytec, to decrease allergic symptoms.

There are many foods which are high in histamine and/or cause histamine to be released. In most cases, the excess histamine produced after eating these foods is either stored or inactivated by the body. However, if one is lacking the enzymes that are responsible for the breakdown of histamine, symptoms can occur.  Also, if one has overly active mast cells, too much histamine can be produced, which overwhelms the body.  This is called mast cell activation syndrome (MCAS), and I plan on discussing this topic in my posts in the upcoming months. This is a very newly recognized disorder, and most of the journal articles about MCAS have been published in the last 24 months.  It did not exist when I was medical school, so few doctors know about it. Two great resources for mast cell disorders who I have met online who have been very helpful include Yasmina, The Low Histamine Chef, and Dr. Hornet Bupp on Twitter.

I will leave you with a list of histamine rich foods to ponder.  I found the list interesting, as I have had aversions to many of these foods for as long as I can remember, including pickles, sauerkraut, greek yogurt, sardines, mayo and sour cream. I have also avoided all condiments since I was a young child…

Histamine-Rich Foods (including fermented foods):

  • Alcoholic beverages, especially beer and wine.
  • Anchovies
  • Avocados
  • Cheeses, especially aged or fermented cheese, such as parmesan, blue and Roquefort.
  • Cider and home-made root beer.
  • Dried fruits such as apricots, dates, prunes, figs and raisins (you may be able to eat these fruits – without reaction – if the fruit is thoroughly washed).
  • Eggplant
  • Fermented foods, such as pickled or smoked meats, sauerkraut, etc.
  • Mackerel
  • Mushrooms
  • Processed meats – sausage, hot dogs, salami, etc.
  • Sardines
  • Smoked fish – herring, sardines, etc.
  • Sour cream, sour milk, buttermilk, yogurt – especially if not fresh.
  • Soured breads, such as pumpernickel, coffee cakes and other foods made with large amounts of yeast.
  • Soy and soy sauce
  • Spinach, tomatoes
  • Vinegar or vinegar-containing foods, such as mayonnaise, salad dressing, ketchup, chili sauce, pickles, pickled beets, relishes, olives.
  • Yogurt

Histamine-Releasing Foods:

  • Alcohol
  • Bananas
  • Chocolate
  • Eggs
  • Fish
  • Milk
  • Papayas
  • Pineapple
  • Shellfish
  • Strawberries
  • Tomatoes

Lastly, here is a lovely diagram of mast cells which I am saving here so that I can find it for future posts on mast cell disorders! Image is from Role of mast cells in allergic and non-allergic immune responses: comparison of human and murine data. Stephan C. Bischoff. Nature Reviews Immunology 7, 93-104, February 2007).

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References

1. Bohn, L., et al. Self-reported food-related gastrointestinal symptoms in IBS are common and associated with more severe symptoms and reduced quality of life.  The American Journal of Gastroenterology. May 2013. 108: 634-641.

2. Foods that contain histamine or cause the body to release histamine, including fermented foods. List from Michigan Allergy, Sinus, and Asthma specialists. http://www.michiganallergy.com/food_and_histamine.shtml.

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Celiac Disease and Endometriosis

As I was doing my weekly glance through the PubMed database (www.pubmed.gov) I came across an interesting letter to the editor in the Archives of Gynecology and Obstetrics entitled, “Celiac Disease and Endometriosis: What is the Nexus?” Endometriosis is a common gynecologic disorder, which effects approximately 10% of women of childbearing age. It involves the development of endometrium, which is the tissue which lines the uterus, in areas of the body outside of the uterus. Symptoms of endometriosis include heavy menstrual periods, abdominal and pelvic pain, abnormal menstrual cycles, and infertility. Although the exact cause of endometriosis is unknown, theories include retrograde menstruation (endometrial cells from the uterus flow backward into the fallopian tubes instead of out of the body during menstruation), an abnormal placement of embryonic stem cells in the pelvic cavity which produce endometrial tissue, and/or an immune system disorder.

Endometriosis is associated with having the HLA-DQ2 and DQ8 genes (which are also present in approximately 96% of patients with Celiac Disease), as well as the DQ7 gene, which has been associated with Celiac Disease in some southern Italians, Sicilians, and Sardinians.

Two studies published within the last few years have shown associations between Celiac Disease and endometriosis. Researchers in Sweden (Stephansson, et al.) reviewed the medical records of over 11,000 women with Celiac Disease in 2011. Compared with controls, women with Celiac Disease were found to be at a much higher risk of having endometriosis, especially in the first year after diagnosis with celiac disease (overall hazard ratio of 1.39).  The authors postulate that there must be a shared inflammatory process in both disorders. Likewise, researchers in Brazil found that 2.5% of women diagnosed with endometriosis also had Celiac Disease (Aguiar, et al, 2009). Please see the references section for links to these two studies.

The gluten free diet has recently been recommended as a strategy to manage the pain of endometriosis. In a pilot study in Italy, 75% of women with endometriosis had a decrease in pain symptoms after 12 months on the gluten free diet (see link in reference section). This strongly suggests that gluten sensitivity and/or Celiac Disease plays a role in endometriosis.

Although I do not have endometriosis, I have interacted with many women through social networking who do have both gluten intolerance and endometriosis. I can say that my periods have become significantly lighter and less painful since going gluten free after my Celiac diagnosis in 2010. I can also say, without a doubt, that my sensitivity to gluten seems to ebb and flow with my menstrual cycle. I seem to be the most sensitive to gluten cross contamination in the 7-10 day stretch before my period, when my estrogen levels are their highest.

With time, I hope that more research is done examining the link between celiac disease and gynecologic disorders. After reading up on endometriosis I did a PubMed search on “Celiac Disease and Polycystic Ovarian Syndrome (PCOS)” and came up with one article from 2002 that was published in Turkey and did not find an association between the two conditions. I have a feeling that if the study was reproduced in the U.S., on a large scale, that an association between Celiac Disease and PCOS would be shown.

For more information on endometriosis, please check out the Mayo Clinic’s website. Rebecca, from “Pretty Little Celiac,” also wrote about endometriosis on her page in January 2013 (see link.)

References:

1. Mormile, R. and Vittori, G. Celiac disease and endometriosis: what is the nexus? Archives of Gynecology and Obstetrics; June 2013 (e-pub, ahead of print).

2. Stephansson, O., Falconer, H., Ludvigsson, J. Risk of endometriosis in 11,000 women with celiac disease. Human Reproduction. 2011; 26 (10): 2896-2901.

3. Aguiar., F., et al. Serological testing for celiac disease in women with endometriosis. A pilot study. Clin Exp Obstet Gynecol. 2009; 36(1): 23-25.

4. Marziali, M. et al. Gluten-free diet: a new strategy for management of painful endometriosis related symptoms? Minerva Chir. 2012 Dec; 67(6): 499-504.

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Eating Gluten Free During a 311 km Ragnar Relay

“I have Celiac Disease. I am very hungry and need to be able to eat without getting sick. Can you help me?”  These were my words as I stepped into a chain restaurant called “Crabby Joe’s” in the eastern Toronto area.  I was one third of the way through running a Ragnar Relay in which my team of eleven ran 311 km from Cobourg, Ontario to Niagara Falls over the course of 30+ hours. The entire experience is worthy of its own blog post, and I hope to post a link to some of my other team members’ blogs.  For the sake of brevity, I plan to discuss the logistics of traveling and running this race strictly gluten free. This race took me away from home (and out of my comfort zone of eating safely gluten free at home) for four days.

To prepare for the race I packed a ton of shelf-stable food in my carry on bag. My stash consisted of Larabars, Zing Bars (one of my new favorite snacks, zingbars.com), GF almonds and cashews from nuts.com, rice cakes and individual packets of almond butter, 2 packets of Glutenfreeda instant oatmeal, and about 4 Go Picnic lunch boxes (www.gopicnic.com).  In the past I would have packed some sort of dried fruit and/or homemade trail mix, but I can no longer eat dried fruits and raisins since I now have a sulfite intolerance/allergy. Nuts.com is the only place where I have been able to find nuts that are not processed on shared equipment with wheat.

Once we arrived in Buffalo, NY, we stopped at Target, where we bought food and supplies for the race, including apples, bananas, clementines, snap peas, baby carrots, and blueberries. I also bought an additional 5 pack of peanut butter and chocolate Larabars. I am not sure why as I had about 20 Larabars in my carry on bag! We stopped for lunch at Chipotle where I had chips and guacamole.  Chipotle’s corn tortilla chips are prepared in a dedicated fryer, and they opened up a virgin container of guacamole for me.  I did not risk eating anything else because I have gotten sick from gluten cross contamination at fast food restaurants more times than I can count, especially in the first 6 months after diagnosis.

We ate at Trattoria Gusto in Port Hope, Ontario on Thursday night.  I had called ahead and discovered that the wife of one of the chefs has Celiac Disease.  I had a mixed greens salad with grilled chicken and butternut squash risotto that were both delicious. I have become a huge risotto fan since being diagnosed with Celiac Disease, as it is usually the one “safe” item on menus in Italian restaurants. In addition, they did have gluten free pizza and pasta options on their menu as well.

We stopped at a random diner for breakfast on Friday morning. Once I learned that the eggs and bacon were prepared in a separate area of the kitchen from the toast and pancakes, I indulged by eating fried eggs and 5 pieces of American Bacon!  This was fitting since my team’s name for the relay was “American Bacon.”

We never really ate lunch on Friday because we were running and then stopping to pick up and drop off runners and cheer people on.  Fresh fruits and Zing Bars and Larabars fueled me.  This lack of eating came back to bite me in the butt at dinnertime, hence my pathetic entrance into Crabby Joe’s while my teammates were eating BBQ at a restaurant that was clearly not gluten free. Once I expressed my hunger and desperation to be able to safely eat to the hostess, the manager asked me what I wanted to eat and within 20 minutes I had a dinner of chicken, a baked potato and steamed asparagus. They cooked the chicken fresh with salt, pepper, and oil in a clean pan, and prepared the rest of my food on clean surfaces that were free from contamination.  This was by far the best meal that I’ve eaten in a chain restaurant since being diagnosed with Celiac Disease in 2010, and I was so grateful for the help of the manager and kitchen staff. If you’re ever in the greater Toronto area and need a restaurant to eat gluten free at, check out Crabby Joe’s.

Breakfast Saturday morning consisted of fruit, coffee, and another Larabar and Zing Bar.  We bought some fresh strawberries from a fruit stand in Ontario, and then stopped at Frog Pond Farm organic winery while Amy, our team captain, was running the last 8 miles of the relay.  It was here that I had a Camino milk chocolate hazelnut bar, which I think may be the best chocolate that I’ve had in my entire life!

We met Amy at the finish line in Niagara Falls around 4:45 pm and we crossed the line together as a team.  We later grabbed dinner at Koutouki, a Greek restaurant that was a little bit off of the main strip.  The waitress who took care of our table was versed in gluten free dining. I had stuffed grape leaves as an appetizer and the chef was able to modify a stuffed chicken breast for me (omitting the sauce which is thickened with flour). Koutouki’s martinis are not too shabby either!

Breakfast on Sunday consisted of bacon, eggs, and fresh fruit at our hotel, and for dinner at the airport I had a Go Picnic boxed lunch while my team mates ate at The Anchor Bar at the Buffalo airport. The Anchor did have “gluten free” wings on their menu, but upon questioning I learned that they do not have a dedicated fryer for the wings. A reminder once again that gluten free items on menus are not always truly gluten free!

All in all, my Ragnar Niagara experience was phenomenal. I met a ton of new people, saw a beautiful part of North America, slept very little, and ate very well. I would do it again in a heart beat! If you have the opportunity to run a Ragnar, go for it!

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My fabulous team at the finish line (I am in the back row in the purple hat). A special thanks to Susan for letting me use her photos, Amy for being our awesome captain and leader, and the rest of my team for their patience, guidance, and support. I hope to see you all again!

girl with sandwich

Should Your Child be Screened for Celiac Disease?

I have four children, who are all at high risk for developing Celiac Disease. I was diagnosed with Celiac Disease 3 years ago, but have had symptoms since early childhood. My husband does not have Celiac Disease, but he carries one of the two main Celiac genes, DQ2. Due to my children’s risk, I have had their pediatrician screen them when they turn 4 years old with a Celiac panel (blood test with Celiac antibodies). My third child, Gabby, just turned 4 so she will have her first Celiac panel at her well-child visit in a few weeks, along with all of her four year old immunizations. I think I’ll try to get my husband to take her!

Since starting this page I have had a lot of people ask me if their children should be screened for Celiac Disease. The latest, evidence-based, recommendations for screening are as follows:

Children should be screened for Celiac Diease if they have any of the following symptoms:

  • short or underweight for age, especially if growth has slowed down
  • diarrhea that lasts for more than a few weeks
  • recurring constipation, abdominal pain, and/or vomiting
  • tooth problems called dental enamel defects
  • delayed puberty
  • iron deficiency anemia that does not respond to treatment with supplements

“High risk” children who belong to the following groups should also be screened (even if they have none of the above symptoms):

  • 1st degree relative (child or sibling) of someone with Celiac Disease
  • Type 1 diabetes
  • Down syndrome
  • Turner syndrome
  • Selective IgA deficiency
  • Williams syndrome
  • Autoimmune thyroid disease

The first step in screening is to have Celiac antibodies measured in the blood. For small children, especially those under the age of 2, it is important for the antibody tests to include the deamidated gliadin peptide, or DGP, antibody. Please see my post from April for more details. While most Celiac panels include TTG IgA and IgG antibodies and endomysial IgA and IgG antibodies, not all include the DGP antibodies.

The second step in testing, if Celiac antibodies are abnormal, and/or there are enough symptoms that Celiac Disease is suspected, is to have an endoscopy and biopsy. During the endoscopy a flexible tube with a camera on the end is inserted into the mouth, down the esophagus, and into the small intestine. Small pieces of the small intestine (biopsies) are obtained, which are evaluated by pathologists. In Celiac Disease, the small fingerlike projections (villi) of the walls of the small intestine are flat, or blunted, which impairs the ability of the body to absorb essentials vitamins and nutrients.

In the absence of symptoms, we are having our kids have Celiac antibody tests every two years or so starting at the age of 4. If any of them develop overt symptoms of Celiac Disease and/or have abnormal antibodies, we will go the route of having an endoscopy and biopsy done to be able to have a firm diagnosis of Celiac Disease. Although we keep a strictly gluten free household, for my sake, as I am very sensitive to any gluten cross-contamination, we do allow our older kids to eat gluten outside of our home. This enables them to have a small “dose” of gluten in their systems on a regular basis. We feel this is important because it enables us to monitor them for symptoms when they do eat gluten and will enable their Celiac blood tests to be as accurate as possible. One of the most common causes of falsely negative Celiac antibody tests is that patients are already gluten free when their tests are performed.

For more information on Celiac Disease testing I recommend that you check out the National Foundation for Celiac Awareness and the University of Chicago Center for Celiac Disease Center websites.

Reference: Patient information: Celiac disease in children (Beyond the Basics). Authors Ivor D Hill, MD and Anne Roland Lee, MSEd, RD, LD; Section Editor William J Klish, MD; Deputy Editor Alison G Hoppin, MD. Literature review current through: May 2013. This topic last updated: Dec 3, 2012. www.uptodate.com.

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Nonresponsive Celiac Disease

Nonresponders are the 5% of Celiac patients who have either persistent symptoms and/or abnormally high Celiac antibodies after two years on the gluten free diet.

According the most recent medical review in the “Up to Date” database, there are 5 main categories of nonresponders to the gluten free diet:

  1. Patient is continuing to eat gluten. This is the most common cause of persistent symptoms. This can be on purpose (i.e. taking a little bite of a gluten containing food every once in a while) or accidental (i.e. not realizing that a child is nibbling her wheat containing Playdough at school).
  2. Patient doesn’t actually have Celiac Disease.  For example, elevated serum antigliadin IgA antibodies may be a false positive. Small intestinal villous blunting may be caused by any of the following: hypogammaglobulinemia, acute infectious gastroenteritis, lymphoma, Crohn’s Disease, and/or a milk protein intolerance.
  3. There is a second disease present, in addition to Celiac, which is causing symptoms. Lactose intolerance, irritable bowel syndrome, small bowel bacterial overgrowth, pancreatic insufficiency, and microscopic colitis can all lead to digestive symptoms in patients with Celiac Disease. I recently wrote about having the dual diagnosis of Celiac Disease and Irritable Bowel Syndrome (see link).
  4. Refractory sprue is Celiac Disease which has never improved, or recurs after a period of “remission.”  It usually needs to be treated with steroids or other drugs that suppress the immune system, as it can lead to #5.
  5. Ulcerative jejunitis and/or intestinal lymphoma. Patients with ulcerative jejunitis have symptoms of malabsorption, fatigue, loss of appetite, weight loss, abdominal pain, diarrhea, and fever despite being on a gluten-free diet. Small bowel obstructions may occur.  Lymphomas have similar symptoms to ulcerative jejunitis, but may also be associated with fevers and abdominal masses.

The bottom line is that If you do not feel significantly better after two years on the gluten free diet, you need to work with your doctor to figure out the reason why. Untreated refractory sprue, ulcerative jejunitis, and lymphoma can lead to death. This is yet another reason to recommend screening to our family members…and if any of my 4 siblings are reading this, yes, you need to get tested or I will continue to badger you about this for this rest of your lives!

References:

1. Cleveland Clinic Center for Continuing Education.  “Celiac Disease and Malabsorptive Disorders.” By J. Wakim-Fleming.

2. “Management of Celiac Disease in Adults.” By Ciclitira, P.J.  UpToDate, April 10, 2013. www.uptodate.com.

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“Up to Date” Management of Celiac Disease in Adults

“Up to Date” is an online medical database for physicians and other practitioners.  I use it almost every day when I am at work to get a brief overview of the most recent evidence regarding the diagnosis and management of my patients’ problems.

I just reviewed the most recent “Up to Date” highlights on the management of Celiac Disease in adults (published April 10, 2013). Here are some of the highlights:

There are 6 key elements in the management of Celiac patients (note mnemonic CELIAC):

  1. Consultation with a skilled dietician.
  2. Education about the disease.
  3. Lifelong adherence to a gluten free diet.
  4. Identification and treatment of nutritional deficiencies.
  5. Access to an advocacy group.
  6. Continuous long-term follow-up by a multidisciplinary team.

I highlighted #4 because I think that it is in important one to discuss and a reminder that the management of our disease is a bit more complicated than just eating gluten free foods.

The authors suggest that newly diagnosed patients should have blood work done 4 to 6 weeks after starting the gluten free diet, which should include a CBC (complete blood count, to evaluate for anemia), folate and vitamin B12 levels, iron studies, liver chemistries, and Celiac antibody levels.  In most cases, TTG (tissue transglutminase) IgA levels should decrease to normal within 3 to 12 months of going gluten free.  The authors reiterate that the most common cause of persistently elevated celiac antibodies is continued exposure to gluten (whether intentional or not).

Although the authors still recommend a repeat endoscopy and small bowel biopsy 3 to 4 months after going gluten free, they admit that this is debatable.  An increasing number of physicians will only repeat the biopsy for patients with persistent symptoms after going gluten free.

“Nonresponders” are patients who have persistent symptoms and/or elevated antibodies and/or abnormal small bowel biopsies after 2 years on the GF diet.  I plan to discuss this topic in further detail in an upcoming post.

The authors recommend monitoring for specific nutritional deficiencies which are associated with Celiac Disease, including the following: iron, folic acid, calcium, vitamin D, thiamine, vitamin B6, vitamin B12, magnesium, zinc, copper, and selenium, especially at the time of diagnosis. This is pretty much in line with the recommendations from the University of Chicago Celiac Disease Center.

Patients should be evaluated for bone loss using a DEXA scan at time of diagnosis and at one year intervals. As an aside, I was unable to get my own insurance to cover this for me, and my out of pocket quotes ranged from $650 to $800. I am going to have to start to pick this battle again soon.

Family members should be screened.  The authors quote that 5-11% of first degree relatives (parents, siblings, children) will also have Celiac Disease. This is quite a bit higher than some of the other estimates which I have seen.

A few things in this article which I had never heard before:

-  It is normal for women to experience breast tenderness in the 1st 3 months after going gluten free….

- Gluten challenges in children with Celiac Disease may increase the risk of the development of additional autoimmune disorders, such as type 1 diabetes…

- Improvement in dermatitis herpetiformis may not occur for 6 to 12 months after going gluten free…

I just tried to remember what the CELIAC mnemonic stands for, and failed miserably, so I am going to go to sleep instead.  Thanks for reading and good night!

Reference:

“Management of Celiac Disease in Adults.” By Ciclitira, P.J.  UpToDate, April 10, 2013. www.uptodate.com.

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Celiac Disease (Out of the Mouths of My Babes)

I am not going to be able to write a new post for a while due to time constraints, but I’d like to share the answers to some questions about Celiac Disease which I recently asked my 7, 5, and 3 year old children. I promised them that I would post the answers from their “interviews.” I did not interview the 1 year old for obvious reasons!

  1. What is Celiac Disease?

3 y.o.: “It’s dumb.”

5 y.o.: “It makes you not eat gluten foods.”

7  y.o.: “If you eat gluten, even by mistake or accident, you get really sick.”

  1. What is gluten?

3 y.o.: “A butt ”(followed by a lot of giggling!)

5 y.o.: “A type of thing that Celiacs cannot eat.”

7 y.o.: “Stuff made out of wheat. Foods with crumbs usually have it.” I am pretty sure that this answer is better than what you would get from the general public if asked the same question.

  1. What foods have gluten?

Collaborative effort:  bread, bagels, vanilla wafers, donuts, frosting and cake, ice cream, pizza, milk, French fries, hamburgers, hot dogs, sausages. Not sure where the milk came from, but they had recently experienced my disappointment on Mother’s Day when we found out that the ice cream at our local (favorite) ice cream shop now contains gluten.  My husband was the recipient of my free Mother’s Day dish.

  1. What foods do you miss?

Collaborative effort: Daddy’s oatmeal (Quaker Instant), Cheezits, pizza bagels, Goldfish crackers, vanilla wafers, ice cream sandwiches. I am truly not sad that they cannot eat these foods anymore.

  1. If you found out you had Celiac Disease, how would you feel?

3 y.o.: “Happy, because I can’t eat gluten anymore.”

5 y.o.: “Sad, because I would miss the gluten.”

7 y.o.: “Kind of happy and kind of sad.”  This is most similar to how I felt after diagnosis….

  1. What are your favorite gluten free foods?

Again, a collaborative effort:  Salmon, Annie’s Bunnies, lentils, hamburgers, chocolate, raisins, yogurt, Fruity Pebbles, popcorn, tortilla chips, Cinnamon Chex. I realized that I have not been as good about removing processed foods from our house as I thought I had been!

As life settles down a bit I hope to write about dermatitis herpetiformis, the relationship between Celiac Disease and other autoimmune diseases, non celiac gluten sensitivity, yoga, DNA testing, and much more. Please let me know if you have any topics/areas which you’d like me to try to tackle, and thanks for all of your support.

 

CFS

Chronic Fatigue Syndrome and Celiac Disease

I recently did an online continuing medical education activity on Chronic Fatigue Syndrome (CFS).  This is a diagnosis which I never see in my patient population, so I found it interesting to learn about.

According to the presentation, CFS is severe fatigue that persists for at least six months and results in a significant decrease in activity. The fatigue occurs in combination with at least 4 of the following symptoms on a regular basis: joint pain, impaired memory and/or concentration, enlarged lymph nodes in the neck, unrefreshing sleep, sore throat, muscle pains, and headaches.  CFS is a diagnosis of exclusion, which means that other causes of symptoms need to be ruled out, such as an underactive thyroid gland, before a diagnosis can be made.

As soon as I read this info, the first thought that went through my mind was how similar the CFS symptoms seemed to how I would feel if I had to go back to eating gluten again.  Joint pains, “brain fog,” fatigue, and enlarged lymph nodes were all chronic problems which I experienced in the months before my Celiac diagnosis.

The educational activity included 3 case reports of real patients with chronic fatigue syndrome. The third report described a 52 year old woman with Chronic Fatigue Syndrome. She was previously healthy, but developed fatigue and chronic pain following a trip to Asia.  She did have a past medical history of depression, high blood pressure, and environmental allergies.  Her physical exam was normal outside of having some fibromyalgia trigger points (these are areas of the body which are tender when palpated).  The patient had low Vitamin D levels, but her thyroid function, iron levels, and autoimmune screening tests were normal. She was started on Vitamin D supplements and began psychological therapy, with minimal improvement in her chronic fatigue symptoms.  Since her Vitamin D levels remained low, despite supplementation, she was tested for Celiac Disease.  She did have Celiac Disease, and she had an almost total resolution of her symptoms of CFS within 6 weeks of going gluten free.

The bottom line is that you or a loved one have been diagnosed with chronic fatigue syndrome, please make sure that Celiac Disease has been excluded.  I tried to search the medical literature for information linking CFS with non-celiac gluten sensitivity, but in usual fashion, there has been no research looking for a link between the two problems.

References

“A Case Based Approach to Chronic Fatigue Syndrome.” Power Point presentation moderated by Anthony Komaroff, MD, Professor of Medicine, Harvard Medical School. Released April 19, 2013 on http://www.medscape.org/viewarticle/782106?src=wnl_cme_revw.

Centers for Disease Control. Chronic Fatigue Syndrome (CFS). Accessed 5/12/2013. http://www.cdc.gov/cfs/index.html.

Chronic fatigue syndrome: oxidative stress and dietary modifications. Logan ACWong C. Altern Med Rev. 2001 Oct;6 (5):450-9.

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So you just found out that you have Celiac Disease….now what?

This post is in honor of all of us whose only advice was to “eat gluten free” after diagnosis!

1. Cry. Be angry. Complain. Mourn the loss of gluten from your life. You will never be able to eat pasta, pizza, chocolate chip cookies, or drink beer again. Feel sorry for yourself. Cry and yell some more. Get it all out, emotionally, at the beginning. FYI, I was so angry and in denial at first that I ate a whole sleeve of Thin Mint Girl Scout cookies and then cheesy pizza bread sticks within a 24 hour period right after my testing was complete…the effects on my body were so horrible, that I was able to then go gluten free and never look back (I just wish that I been smarter about choosing my last gluten-containing foods).

2. Learn about which foods contain gluten. There is a great list on the Living Without Magazine website (see link). Remember that you can never eat any of the following again: wheat (einkorn, durum, faro, graham, kamut, semolina, or spelt), rye, barley, triticale, malt, malt flavoring, and malt vinegar. Get used to reading ingredient labels and calling companies to inquire about gluten in foods and products. Two of my favorite lists come from the page www.withstyleandgraceblog.com:

Common sources of gluten

gf safe list

3. Purge your kitchen, bathroom, and medicine cabinet of gluten. You will give away/throw away more than you could ever imagine.  Gluten Free Makeup Gal’s website can help with cosmetics and www.glutenfreedrugs.com can help you to find out if gluten is lurking in your medications.

4. Get copies of your Celiac tests (antibodies, genes, pathology results). Read through them, learn from them, and share them with your family members who may need to be tested.

5. Find reliable sources about Celiac Disease and sign up for internet newsletters, Facebook pages, etc. My two favorites are the National Foundaton for Celiac Disease Awareness (www.celiaccentral.org) and the University of Chicago Celiac Disease Center (www.cureceliacdisease.org).

6. Do not give in to the urge to replace all of the foods you threw away (pastas, breads, salad dressings, etc.) with gluten free versions. Try one or two gluten free products out a week, as many of these foods are very expensive, may not taste good, and contain a lot of sugar and empty calories. Focus on eating a lot of whole foods (fruits, veggies, lean meats, fish, potatoes, etc) in the first few months if you can.

7. Explore shopping for GF foods online, as you may be able to save quite a bit of money. I’ve been able to order flours and mixes, i.e. Bob’s Red Mill, for almost 50% off what I would have paid at my local grocer.

8. Find a few “go-to” meals and snacks for when you are time pressed but need to be able to safely eat, i.e. Larabars and KIND bars.

9. Find a support group, whether it be it a local group or online. I have actually found some really nicely moderated support groups on Facebook.

10. Discuss whether or not you need supplements with your doctor or practioner. A lot of us are anemic and/or Vitamin B12 deficient in the beginning. It is important for us to have our Vitamin D levels and our thyroid function monitored. There is emerging information on the role of altered gut flora (bacteria) in inflammation of the digestive system, so you may want to consider a probiotic as well (see my post on probiotics for more details).

11. Encourage your family members to get tested. First degree family members (parents, siblings, and children) have a 1 in 22 risk of also having Celiac Disease. Second degree family members (aunts, uncle, grandparents) have a 1 in 39 risk.

12. Expect a change in how you socialize. Gone are the days when you can freely eat and drink whatever you’d like at every party, potluck, wedding, etc. Some people will go out of their way to accommodate you, and others won’t. Some will care about your diagnosis, and others won’t (and it will be difficult to predict who will care and who won’t). You will feel “left out” at least some of the time. Get used to bringing your own food and snacks wherever you go. I always bring a GF item to every social gathering I attend, so that I am assured that there will be one food that is safe for me to eat.

13. Take care of your body. Run, walk, do yoga, meditate. Use your diagnosis as an opportunity to take charge not only of your diet, but your overall well-being. Once I was gluten free, I was able to run again after years of not having the endurance to run more than 2 miles.

14. Cry. Be angry. Complain. There will be good and bad days at first, but with time, the good days will outnumber the bad. It will get easier, I promise!

One of my favorite reminders to take care of myself:

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Celiac Disease and the Thyroid Gland

If you have Celiac Disease, it is important that you know a bit about your thyroid gland, as you are at a high risk of autoimmune thyroid disease. Experts estimate that between 8 and 12% of people with Celiac Disease have, or will eventually develop, problems with their thyroid gland. Conversely, between 3 and 5% of people with autoimmune thyroid disease will develop Celiac Disease. I was diagnosed with Hashimoto’s Disease (hypothyroidism) in 2003, seven years before my Celiac diagnosis.

The thyroid gland is a butterfly-shaped gland that is present in the neck region, just under the region of the “Adam’s apple,” which is made up of two lobes (see diagram).

Illu_thyroid_parathyroid

Our thyroid glands secrete hormones that regulate metabolism, play a role in the growth and development of our bones and muscles, and impact brain and heart function. Thyroid gland dysfunction can lead to a rapid decline in health. Prior to my diagnosis with Hashimoto’s Disease, I had a 4 to 6 month history of overwhelming fatigue, dry skin, puffiness around my eyes, hair thinning, mental sluggishness, and feeling cold all of the time. I was about to scan and put in a photo of myself in the weeks leading up to my diagnosis, but I look so atrocious that I did not want to scare any of you. It is available upon request!

In Hashimoto’s Disease, the body makes auto-antibodies which lead to thyroid inflammation and destruction, which in turn causes the the thyroid to be under-active (also called hypothyroidism). Hashimoto’s is the most common autoimmune thyroid disease that is associated with Celiac Disease. Common symptoms associated with hypothyroidism include lethargy, depression, muscle cramps, constipation, dry skin, cold intolerance, and/or weight gain. The treatment for hypothyroidism is to take synthetic thyroid hormone, which is called levothyroxine. The brand name for levothyroxine is Synthyroid.

If you are started on levothyroxine, it is important to have your thyroid hormone levels checked frequently, so that your dose can be adjusted as needed. Pregnancy, the postpartum period, lactation, menopause, and other events associated with hormonal changes can also effect the thyroid gland, so it is important to have your thyroid hormone levels monitored closely during these times.

Once I went gluten free, my levothyroxine dose decreased from 150 mcg/day to 125 mcg/day. From the reading that I have done, this is not unusual, and many Celiacs experience a need for less thyroid hormone once off of gluten. However, it is very unusual for hypothyroidism to ever totally resolve. This means that if you are diagnosed with Hashimoto’s Disease, you should anticipate being on thyroid hormone replacement therapy for the rest of your life.

A few other things which I have learned about levothyroxine: 1. Make sure to take it on an empty stomach (I take mine first thing in the morning, about 30 to 45 minutes before breakfast), 2. To take separately from vitamin and mineral supplements, as some can interfere with its absorption, and 3. Make sure that the levothyroxine which you are taking is gluten free.  I have been taking generic levothyroxine manufactured by Lannett since October 2012 without any issues. www.glutenfreedrugs.com is a great resource to check out the GF status of drugs and supplements.

Grave’s Disease is the most common cause of hyperthyroidism, or overactive thyroid. In this disease, auto-antibodies stimulate the thyroid gland to produce an excess of hormones. Hyperthyroid symptoms are the opposite of those seen in Hashimoto’s Disease and include weight loss, elevated body temperature, irritability, tremors, heart palpitations, and insomnia. Treatment options for Grave’s Disease include antithyroid medications, radioactive iodine, and surgery. For more on Grave’s Disease, please see the following link (taken from the womenshealth.gov website).

The main test used to screen for thyroid problems and monitor thyroid function is called a TSH (short for thyroid stimulating hormone). In hypothyroidism, the TSH is too high, and in hyperthyroidism, the TSH is too low. In most cases test results should be available within 24 hours of having blood drawn. T4 and T3 levels are also monitored closely during diagnosis and treatment.

My hypothyroid symptoms improved dramatically within one week of starting on Synthroid after my diagnosis with Hashimoto’s Disease. I urge you to have your TSH checked if you or a loved one are experiencing any unusual symptoms which may be due to thyroid dysfunction.

The bottom line is that if you have Celiac Disease, you need to have your thyroid function monitored, and if you have autoimmune thyroid disease, you should strongly consider being screened for Celiac Disease, especially if any concerning symptoms develop.

For more information, please check out the following links:

1. Celiac Disease and Autoimmune Thyroid Disease. Ch’ng, C., et al. Clin Med Res. 2007; 5(3): 184-192.

2. “Celiac Disease, Thyroid Disease Often Found Together. Two Autoimmune Disorders Could Share Common Trigger.” By Jane Anderson, About.com Guide; updated January 19, 2012.

3. “Celiac and the Thyroid.” NFCA website: www.celiaccentral.org. Accessed 04/23/2013.

4. Prevalence of thyroid disorders in untreated adult celiac disease patients and effect of gluten withdrawal: an Italian multicenter study. Sategna-Guidetti C, Volta U, Ciacci C, Usai P, Carlino A, De Franceschi L, Camera A, Pelli A, Brossa C. Am J Gastroenterol. 2001 Mar;96(3):751-7. See link.

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Update on Celiac Disease Screening in Infants and Toddlers

There are multiple reasons why a young child may need to be evaluated for Celiac Disease. The most obvious reason is if he or she has symptoms, such as chronic diarrhea, poor growth, and/or anemia. Other reasons include having a first degree relative (parent or sibling) who has Celiac Disease or having another autoimmune disorder, such as Type 1 diabetes.

The main blood tests to screen for Celiac Disease are tissue transglutaminase IgA (TTG IgA) antibodies and endomysial IgA (EMA IgA) antibodies. These tests are highly sensitive, which means that if the tests are negative, Celiac Disease can be ruled out most of the time. The problem with using these tests in infants and toddlers is that the sensitivity of these tests is much lower for children under the age of 2 than it is for older children and adults. Some believe that this is because young children with Celiac Disease have not had enough time to develop TTG and EMA IgA antibodies which can be measured. Needless to say, there are probably many toddlers with Celiac Disease who are walking around undiagnosed because they did not have elevated TTG and/or EMA IgA antibodies when they were tested.

Deamidated gliadin peptides (DGPs) are a new test for antibodies against gliadin and are being used with increased frequency for screening for Celiac Disease in the U.S. and Europe. A group of Italian researchers recently studied the utility of using DGP IgG antibodies to screen for Celiac Disease in children under the age of 2. They found that 100% of children under the age of 2 with biopsy-proven Celiac Disease had abnormally high DGP IgG antibodies on blood testing. They also found that DGP antibodies were abnormally high in 4 toddlers who had malabsorption (diarrhea) but who did not have a biopsy consistent with Celiac Disease. One of the 4 children with an abnormal DGP did have mild villous blunting and eventually developed Celiac Disease. The other 3 children with diarrhea and elevated DGPs all had the genes that predispose to Celiac Disease. They plan to follow these 3 children closely for the development of Celiac Disease. The researchers also found that DGP levels correlate very well with the extent of damage on the duodenal biopsies of the children with Celiac Disease and postulate that in the future, children with markedly elevated DGP antibodies may not need to be biopsied for diagnosis with Celiac Disease.

Out of curiosity, I went to the internet sites of some of the major labs that perform Celiac Disease blood screening tests. Labs which DO include DGP IgG antibodies on their celiac panels include Prometheus, Labcorp, ARUP, and Mayo Medical Labs. Labs which DO NOT include DGP IgG antibodies on their celiac panels include Kimball Genetics and Quest Diagnostics (as of 4/17/2013).

If you suspect that your young child may have Celiac Disease, but he or she did not have positive antibodies, it may be helpful to find out which lab their blood was sent to so that you can learn whether or not DGP IgG antibodies were part of the testing.  I recommend that you discuss any concerns with your child’s physician.

References:

1. Antibodies to deamidated gliadin peptides: an accurate predictor of celiac disease in infancy. Amarri, S., et al. J Clin Immunol. Published online 4/5/2013.

2. ARUP Consult. A Physician’s Guide to Laboratory Test Selection and Test Interpretation. Celiac Disease. www.arupconsult.com/assets/print/CeliacDisease.pdf.

3. Screening for celiac disease in average-risk and high-risk populations. Aggarwal, S., Lebwohl, B, and Green, P. Therap Adv Gastroenterol. Jan 2012; 5 (1): 37-47.

baby bottle

A New Food “Allergy” of Infancy: Food Protein Induced Enterocolitis Syndrome (FPIES)

My oldest daughter, Grace, had horribly bad reactions to cow’s milk protein as an infant, which included vomiting, chronic diarrhea with mucus, irritability, reflux, and poor growth. Her first reaction occurred shortly after getting her initial supplemental bottle of formula. She was predominantly breastfed at first, but I did have to supplement her due to milk supply issues (which, looking back, I believe were a result of my undiagnosed Celiac Disease). She went through a series of formula changes (from regular to soy to Alimentum and Nutramigen), and it was not until she was started on Neocate, an amino acid based formula, at 2 months, that she began to grow and thrive. Looking back, I am pretty sure that she had food protein induced enterocolitis syndrome, which is also called FPIES.

FPIES is a severe food sensitivity/intolerance which causes digestive symptoms in infants. Although it is considered by many to be an “allergy,’” it does not involve the formation of IgE antibodies like other food allergies. The most common triggers for FPIES in babies are cow’s milk and soy proteins, although rice, oats, barley, fruits, and vegetables have also been documented as triggers for older infants who have been started on solid foods. Based on recent studies it is believed that 0.3% of infants have an FPIES reaction to cow’s milk. This is in addition to the 3-5% of infants who have milder non-IgE reactions (allergies) to cow’s milk protein during the first year of life.

Infants with FPIES have symptoms shortly after consuming cow’s milk and/or soy proteins, usually within 1-4 hours. The usual trigger is a cow’s milk based formula, but breast fed infants can react to milk proteins in their mother’s breast milk as well. Symptoms can include projectile vomiting, chronic diarrhea with blood and/or mucus, low blood pressure, lethargy, irritability, and/or an elevated white blood cell count. 50% of infants with FPIES who react to milk will also react to soy.

It has recently been recognized that older infants can develop FPIES after solid foods are introduced during the 2nd six months of life. Rice is the most common trigger, followed by oats, barley, chicken, turkey, egg whites, green peas, peanuts, and potatoes. I recently learned that 80% of infants with one solid food trigger will have reactions to at least one other food, and that it is common for infants to have FPIES reactions to multiple foods.

Diagnosing FPIES is difficult because there are currently no blood tests that can be used in detection. This is because the immune reaction of FPIES does not involve the formation of IgE antibodies against the offending foods. This is much different than the IgE-mediated immune reaction that occurs in older children with food allergies. IgE allergies can be detected by blood and/or skin testing.  If a baby has adverse reactions after multiple exposures to the same food, FPIES can be diagnosed clinically. If the diagnosis is unclear, an oral food challenge (OFC) should be performed. It is recommended that an OFC be performed under close medical supervision (i.e. doctor’s office), as there is a risk for low blood pressure and/or dehydration to develop during a food challenge. In the worst cases an infant can develop shock. In some cases infants may need IV fluids after a reaction. Steroids are sometimes needed in severe cases. Based on what I have read, it seems that reactions to trigger foods may get more severe with time, i.e. it may take less and less of the offending food to trigger a reaction.

Research has shown that FPIES to milk and/or soy protein resolves by 3 years of age. It is recommended that children with FPIES get oral food challenges every 12 to 24 months. My oldest daughter is now 7 years old and she has no problems with dairy products (she eats yogurt, cheese, and ice cream) but she has refused to drink plain cow’s milk and has a tendency to avoid soy as well.

Reading and learning about FPIES led me to have many questions and concerns:

1. Why are so many infants born with this problem and why is it increasing in severity? Is it somehow related to their moms having undiagnosed Celiac Disease, and/or some other process causing “leaky gut” while pregnant?

2.  Is this the same disease process which those of us who have multiple food intolerances are experiencing, only babies are getting sicker and having more severe reactions since their immune and digestive systems are less mature?

3. How under-diagnosed is this problem? I had never heard of it 7 years ago when my daughter had it (and I was in my pediatric residency at the time). What are the real numbers?

4. Do infants with FPIES go on to develop Celiac Disease or gluten sensitivity when they are older? Is FPIES, even though it resolves, some sort of marker for the future development of food issues in a patient?

5. Is this somehow linked to the dramatic increase in autism over the last few years? Do the FPIES episodes have some sort of effect on the developing brain of an infant?

6. Does the microflora of the gut play a role? Would probiotics prevent and/or ameliorate the problem?

7. I was going to speculate a bit about GMOs, but I am not sure that I am ready to write about that yet…

I suspect that we are going to hear a lot more about this problem in the future. I wrote this article to share the little which I know about FPIES with you, in hopes that we can learn about it together.

References:

1. American Academy of Allergy, Asthma, and Immunology website: www.acaai.org/allergist/allergies/Types/food-allergies/Pages/food-protein-induced-enterocolitis-syndrome-fpies.aspx

2. Medscape Pediatrics. “FPIES: The ‘Other” Food Allergy.” Dr. Anna Nowak-Wegrzyn, MD. Published online April 3, 2013.

3. Curr Opin Pediatr. 2012 Dec;24(6):739-45. Clinical diagnosis and management of food protein-induced enterocolitis syndrome. Leonard, S. and Nowak-Wegrzyn, A. www.ncbi.nlm.nih.gov/pubmed/23042254

4. Clin Exp Allergy. 2012 Aug;42(8):1257-65. A multicentre retrospective study of 66 Italian children with food protein-induced enterocolitis syndrome: different management for different phenotypes. Sopo, S., et al. Department of Pediatrics, University of Sacred Heart Agostino Gemelli Rome, Rome, Italy. www.ncbi.nlm.nih.gov/pubmed/22805473

 

Courtesy of www.wholeliving.com

Socializing and Socca Bread

I was recently reminded of how socially isolating Celiac Disease can be.  I attended a day long volunteering orientation during which a complimentary lunch of sub sandwiches and cookies was provided for attendees. I was not surprised by this, and, as usual, packed and brought a lunch from home. I am so far into this whole Celiac thing that I was not bothered by this at all.  The two women sitting closest to me at the orientation were curious as to why I brought own lunch when we knew ahead of time that a free lunch was going to be provided. I went through the whole, “I have Celiac Disease, so I get very sick if I eat gluten,” explanation for the umpteenth time. Again, not a big deal, and I am always happy to educate others about gluten-related illnesses.

When I finished my lunch I grabbed my phone to check my emails. The first 3 emails I read were the following:

1. An invitation to a spaghetti and garlic bread benefit dinner for a local homeless shelter.

2. A reminder that my upcoming book club is at a cheesecake restaurant (I have been there many times and there is nothing on the menu I can eat and no “carry ins” allowed).

3. A local running club invitation to an upcoming ”flatbread and beer” 5K fun run.

This string of emails was a quick wake-up call that those of us with Celiac Disease (1% of the population) are a small minority, that we truly live in a food-based culture, and a reminder that I used to take similar social events totally for granted back when I could attend them.

I fortunately, just this week, came across a recipe for socca bread, a French, chickpea flour-based flatbread which is similar to Italian farinata.  It is gluten free, dairy free, cheap, easy to make, and tastes great. I found the recipe on the website www.thekitchn.com. I used the oven method to make it, as I am ashamed to admit that I do not own a cast iron skllet, and I used Bob’s Red Mill Garbanzo Bean Flour. I am not ashamed to admit that I ate the entire flatbread in less than a day!

Ingredients

1 cup (4 1/2 ounces) chickpea flour
1 cup (8 ounces) water
1 1/2 tablespoons extra-virgin olive oil, plus more for the pan
1/2 teaspoon salt
Optional seasonings: 1 tablespoon chopped fresh herbs (rosemary, thyme, oregano), 1-2 cloves minced garlic, 1/8-1/2 teaspoon spice (chili powder, cumin, smoked paprika, za’atar)

Equipment

10-inch cast-iron skillet, pie tin, or other metal baking dish
Spatula
Knife

Instructions

Makes 1 thick 10″ pancake or 2 thin 10″ pancakes (recipe can be multiplied)

1. Prepare the Chickpea Batter – Whisk together the chickpea flour, water, olive oil, and salt in a small bowl. Let rest for 1/2 hour to 2 hours to give the flour time to absorb the water.

2. Heat the Broiler and the Pan – Set an oven rack six inches below your oven’s broiler and turn on the broiler. Set a cast iron skillet or other baking dish on the rack to warm for five minutes.

3. Pour the Batter – Remove the skillet from the oven using oven mitts. Add a teaspoon or so of olive oil and swirl to coat the bottom of the pan. Whisk the chickpea batter quickly and then pour half into the hot skillet (or all if making a thicker pancake). Tilt the pan so the batter coats the entire surface of the pan.

4. Broil the Socca – Broil for 3 to 5 minutes, until you see the top of the socca begin to blister and brown. If you find the top browning before the batter is fully set, move the skillet to a lower oven rack until done. The socca should be fairly flexible in the middle but crispy on the edges.

5. Slice and Serve – Use a spatula to work your way under the socca and ease it from the pan. Slice it into wedges or squares, sprinkle with salt and pepper, and drizzle with a little good olive oil. Repeat with any remaining batter.

Socca is best if eaten immediately after baking while still warm, but can be refrigerated and re-toasted for up to a week.

Additional Notes:

To Bake in the Oven: Heat the oven to 450°F and pre-heat the baking dish for 5 minutes. Bake the socca for 8-10 minutes, until it’s cooked through, then run it under the broiler to blister the top.

To Bake on the Stove Top: Film a pan with oil and set over medium-high heat. Pour in the socca batter. After about 3 minutes when the edges are firm, gently lift the pancake and flip it. Cook on the other side for another 2 to 3 minutes, until both surfaces are dry and beginning to brown.

I plan on making socca often, and sharing it with many. I may even have my own socca bread party so that I can actually socialize and eat at the same time. I hope you enjoy it as much as I did.

Disclaimer: The socca bread which I made looked nowhere near as pretty as the socca bread photo which I found on www.wholeliving.com. Their website also has a few different recipes and suggestions for socca bread preparation.

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It is Possible to Have Both Celiac Disease and I.B.S.

Like many, I had a long delay in my diagnosis of Celiac Disease and walked around for years with a label of Irritable Bowel Syndrome (I.B.S.) Once I was diagnosed with Celiac Disease in 2010, I threw my diagnosis of I.B.S. in the garbage. From a medical standpoint, I have ignored discussions and articles regarding I.B.S., digestive problems in fibromyalgia, “functional bowel disease,” FODMAPs, etc. because I have assumed that they do not apply to me. Also, the largest patients I take care of are about 12 lbs., and, fortunately, do not suffer from I.B.S.

I have been trying to search for answers as to why so many of us with Celiac Disease also have multiple food intolerances. With our villous blunting and poorly functioning small intestines before diagnosis, it makes physiologic sense to have a temporary lactose intolerance. I had severe lactose intolerance when I was first diagnosed with Celiac Disease and was unable to tolerate dairy until I had been gluten free for at least 6 months. I can now tolerate a moderate amount of dairy without the development of GI symptoms. However, since being diagnosed with Celiac Disease in 2010, I have developed intolerances to both soy protein (after one year of being GF) and sulfites (right around my two year anniversary of being GF). When I ingest soy proteins or sulfites I have immediate digestive distress followed by a “delayed” onset of inflammatory symptoms about 24 hours later.

Recent research has shown that I.B.S. patients often have multiple food intolerances, of which wheat is one of the most common. A group of Italian researchers published a paper last fall that highlighted that many patients with “wheat sensitive” I.B.S. have other food intolerances, the most common of which are dairy, tomatoes, eggs, and chocolate. I did write a bit about this last December in a post which I titled, “What Now, Wheat Sensitivity?”  The original research article by Carrocchio, et al. can be found here.

Although I used to think of I.B.S. as being a “diagnosis of exclusion,” I have confirmed with the University of Chicago Celiac Disease Center, as well as two other gastroenterologists, that it is possible to have both Celiac Disease and I.B.S. With my development of multiple food intolerances and “super sensitivity” to traces of gluten, I believe that I may have both Celiac Disease and “wheat sensitive” I.B.S. Through my online interactions with many other Celiacs, I am pretty sure that I am not alone in this either. Due to the plethora of information regarding Celiac Disease on the internet, we are fortunate to be able to read and learn a lot about the treatment for Celiac Disease (which, as we know, is the gluten free diet). We have much less information about what to do about I.B.S. symptoms. In my case, I was totally in the dark as to the fact that I probably still have I.B.S., as I figured that all of my gut problems and symptoms were from untreated Celiac Disease.  However, in reading up on I.B.S. for this article, I have learned that April is I.B.S. Awareness month.  There is also a huge online IBS support forum which can be found at www.ibsgroup.org.

In brief, I.B.S. is a chronic condition of the digestive system of which the most common symptoms are abdominal pain and diarrhea and/or constipation. It is estimated that 10-20% of the U.S. population, at any given time, meets criteria for having I.B.S. Although the exact cause of I.B.S. is unclear, current theories include that it involves having a “spastic” colon, a history of a previous GI infection, food intolerance(s), stress, and/or overactive nerves in the GI tract. Current treatments for I.B.S. include dietary changes, psychological therapies, and medications, including antispasmodic drugs, antidepressants, and anti-diarrheal therapies.

The low FODMAPs diet (fermentable oligosaccharides, disaccharides, monosaccharides, and polyols) is one of the most popular nutritional treatments for I.B.S. The underlying theory is that an alteration in small intestinal gut flora leads to the fermentation of short chain carbohydrate components (FODMAPs) in the large intestine. Fermentation by colonic bacteria causes adverse symptoms such as gas, abdominal pain, diarrhea, and constipation which can lead to I.B.S.

FODMAPs include the following: fructans (found in wheat, rye, onion, garlic, artichokes, asparagus, and chocolate), fructose (found in honey, fruits, high fructose corn syrup), galactans (beans, lentils, and legumes, such as soy), polyols (found in apples, apricots, cherries, nectarines, peaches, pears, prunes, watermelon, blackberries, avocados, mushrooms, and artificial sweeteners, such as mannitol, soribtol, and xylitol), and lactose (dairy).

For more on the low FODMAPS diet, please refer to the Stanford Digestive Health Center Nutrition Services website.

At this point my GI symptoms are under control on a gluten free, soy free, sulfite light, and “modified” paleo diet, so I am not going to adopt a strict low FODMAPs diet, nor any other I.B.S. treatments, unless I develop symptoms that warrant it. However, reviewing I.B.S. has reminded me that my periodic episodes of digestive discomfort may actually be due to I.B.S. symptoms as opposed to “glutenings.” I spent a lot of time during my first year after diagnosis trying to figure out why I kept getting “glutened” by GF foods, such as soy flour, Gatorade, lentils, and cranberries. Looking back, I was likely having I.B.S. type symptoms from FODMAPs. Also, it is entirely possible that the GI discomfort that I experience from ingredients such as xanthan gum and carrageenan may be due to I.B.S. as well (as opposed to Celiac Disease).

A dual diagnosis of I.B.S. and Celiac Disease may well explain why many of us have multiple food intolerances, symptoms of leaky gut, and/or better responses to probiotics than others with Celiac Disease. Is I.B.S. a manifestation of an innate immune response to both gluten and other food proteins in some of us with Celiac Disease? Is it I.B.S. that actually causes a leaky gut in some of us or is it a leaky gut which causes I.B.S. symptoms? I hope that we will someday have answers. In the meantime, I hope that we can all find the best diets for our individual needs and intolerances without having to go too crazy or jumping through too many hoops.

Happy Spring to all of you!

Sun-dogs-in-South-Dakota-photo-by-Joe-Unterbrunner

Sun Dogs, Celiac, and Gratitude

The sun was setting as I was driving to meet a friend for dinner last night, and I noticed that there was what looked like a multi-colored beam of light going almost all the way around the sun. I was so enthralled with staring at it that I missed my exit twice! When I got home I searched the internet and found that the phenomenon, called a parhelion (plural is parhelia), is due to atmospheric ice crystals which act like giant prisms. When the beams are not totally connected, they are called “sun dogs.”

My friend and I shared a fabulous meal and as I drove home I reflected on how grateful I am for my family, friends, faith, health, and the foods and beverages that I can (and do) eat and drink.

Here is my list of foods I am thankful I can eat (in no particular order):

fruits (apples, berries, clementines, grapes, peaches, melons) • vegetables (kale, spinach, sweet peas, tomatoes, eggplant, zucchini) • chocolateeggs (and bacon) • fish, shrimp, and non-processed seafood • fresh squeezed lemonade • aged cheese • meats such as chicken, pork, lamb, and lean beef • sweet potatoes, squash, and yams • Jelly Bellies • homemade chocolate, cranberry scones (adapted from this fabulous recipe) • popcorn and kettle corn • Against the Grain baguettes • green, leafy salads • all types of nuts (as long as ordered from nuts.com) • GF oats and oatmeal • gelato • corn tortillas and many Mexican foods • organic wine • chickpeas, rice, and other beansfresh herbs like basil, cilantro, and rosemary • GF Thin Mint cookies from Happy Bellies Bake Shop

I will leave you with the Shin Buddhist Food Prayer (in Japanese and English):

Before meals recite: Ita Da Ki Masu. I take this nourishment in gratitude (to all beings).

After meals recite: Go Chi So Sama. Thank you in deepest gratitude (to sustain my life).

Thank you for reading! What foods are you thankful to be able to eat?

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“Potential” Celiac Disease

I celebrated the 3-year anniversary of my Celiac diagnosis by attending a Celiac support group meeting in a nearby city. I was a bit hesitant to attend, as my initial experience at a Celiac support group meeting in 2010 was nothing short of a disaster (probably worthy of a blog post in itself, but in short, involved the woman sitting next to me eating a gluten-rich Subway sandwich and chocolate chip cookies throughout the meeting and getting her crumbs on me when she coughed.)

Despite my reluctance, I am grateful that I gave this other support group a chance. The guest speaker was a Gastroenterologist who is also board-certified in Integrative Medicine, so he seemed to have a true understanding of the effect of nutrition on our bodies’ healing.  He presented top notch information on Celiac Diease, and as he spoke I scribbled notes on a manila folder. Upon reviewing my chicken scratching, the phrase “Potential Celiac Disease” jumped out at me because it is a term that I have heard of but did not know much about.

Potential Celiac Disease (PCD) is diagnosed when a patient has abnormally elevated TTG IgA and Endomysial (EMA) antibodies on blood screening tests (the 2 main celiac antibodies) but normal bowel mucosa on biopsy. There is no evidence of the villous blunting seen in Celiac Diease (CD).  PCD often pops up when people who are at high risk for celiac disease are screened, such as first degree relatives of Celiacs, Type 1 diabetics, and/or patients with other autoimmune diseases. Many patients with PCD have no symptoms and do not feel ill from eating gluten. It is essential for the Celiac screening to be done while a patient is still on a gluten-containing diet. If a person is already gluten free when tested it is difficult to tell if the positive celiac antibodies and normal biopsies are from PCD v. full blown CD which is already being treated.

There is a lot of controversy over what to do if a patient is diagnosed with PCD. Some experts believe that if Celiac antibodies are elevated, that one should go gluten free, even in the absence of symptoms. Others believe that asymptomatic potential Celiacs should continue on a gluten containing diet, with close monitoring and follow-up of with small bowel biopsies at regular intervals. The rational behind this 2nd line of thought is that a lot of patients with PCD may never actually go on to develop full CD.

Unfortunately, Potential Celiac Disease has been so under-researched that we really don’t have good information on what percentage of “Potential” Celiacs become actual Celiacs.

A group of researchers in Italy recently studied 47 patients who were diagnosed with PCD. They found that those with PCD did not differ from those with CD in terms of age of diagnosis, digestive symptoms, anemia, or other associated problems. They broke the 47 PCD patients into 2 groups for analysis:

Group 1: 23 patients who immediately went gluten free after being diagnosed with PCD, most due to digestive and other autoimmune complaints. Follow-up biopsies to screen for CD could not be performed since all of these patients were GF.

Group 2: 24 patients who stayed on a gluten-containing diet after being diagnosed with PCD. 14 had repeat biopsies at 1 year. Of these 14, 5 had villous blunting (full celiac disease) and 9 did not. Of the 9 who had normal biopsies at 1 year follow-up, 4 went GF due to symptom development and 5 remained without symptoms and had normal biopsies 3 years later.  The 10 patients with potential celiac disease who remained on a gluten-containing diet and refused follow-up biopsies are described as being in “good clinical condition,” however 5/10 had anemia, 3/10 had thyroid disease, 3/10 had diarrhea, 1/10 had alopecia, and 1/10 had rheumatoid arthritis on follow-up. While these problems might be perceived as being better than having full blown Celiac Disease, I wonder if so many symptoms would be present in this group of potential Celiacs had they gone GF.

The concept of non celiac gluten sensitivity was largely ignored in this paper. There is also no comment on how many intestinal biopsies were taken. The speaker that I listened to last night reiterated that at least 4-6 biopsies need to be taken from the duodenum in order to confirm a diagnosis of CD. If less than 4-6 biopsies are taken, CD can be missed.

In summary, we are in a gray zone as to how to advise others with “potential” celiac disease in terms of the gluten free diet. If one has PCD and feels lousy after eating gluten, then the decision to go gluten free is an easy one. For those who have PCD but do not have any ill effects from eating gluten (at least outward symptoms), I can see how the decision may be quite a bit more difficult.

After living so long with undiagnosed Celiac Disease, I would be hard pressed to not recommend the gluten free diet for those with Potential Celiac Disease. We currently have no idea how high the real risk of Celiac Disease is for this group. I personally know that it is a risk that I would not want my own family members to take….whether or not they would take my advice is an entirely different question!

Reference:

Prevalence and natural history of potential celiac disease in adult patients. Federico Biagi, Lucia Trotta, Claudia Alfano, Davide Balduzzi, et al. Scandanavian Journal of Gastroenterology. Posted online on March 19, 2013. (doi:10.3109/00365521.2013.777470)

*Also, a quick reminder that this is a blog. I am summarizing medical literature, but also adding in my own thoughts and opinions on what I have read. I am not trying to tell anyone what they should do for their own health, nor am I giving medical advice through this page. Thank you!

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Let’s Talk about Celiac Disease and Infertility

One of my favorite Celiac Disease-related pages on Facebook is that of the University of Chicago’s Celiac Disease Center. One of the first “tidbits” that I read on this page, after discovering it last fall, was the following statement: “Women who have experienced persistent miscarriages or infertility without a known medical cause should be tested for celiac disease.” I had no idea that there was such a strong association between Celiac Disease and infertility until I read this sentence.

I have encountered tons of women, both professionally and personally, who have struggled to get pregnant and/or carry a pregnancy to term. Recent estimates have shown that up to 10.9% of women of childbearing age (15-44) in the U.S. seek treatment for infertility in any given year. I wrote a post about the effects of Celiac Disease on pregnancy in January 2013, and since then have read quite a bit more about topic. Here are some things which I have learned about Celiac Disease and infertility:

-Studies published within the last two years have shown that between 6 and 10% of women with unexplained infertility have (undiagnosed) Celiac Disease. Previously, it was believed that the numbers were much lower, around 2-4%.

-Many women with Celiac-related infertility do have a prior history of irritable bowel syndrome or other GI complaints, but they do not necessarily have these symptoms while undergoing treatment for infertility.  It is well known that signs and symptoms of Celiac Disease can appear and then disappear for years (and even decades) before diagnosis.

-It is believed that Celiac impacts fertility due to a combination of malnutrition (nutrient deficiencies interfere with sex hormone function) and the formation of small placental blood clots (thromboses) due to Vitamin B12 deficiency. It has also been shown that anti-TTG antibodies do bind to placental tissues and can interfere with placental formation and function.

-If a woman has infertility due to Celiac Disease, fertility should resume between 3 to 9 months after going gluten free.

-Many researchers conclude that all women with unexplained infertility should be screened for Celiac Disease. Based on discussions with several people, this does not seem to be happening in all parts of the U.S.

The average cost for one cycle of IVF is $12,400. Many women go through multiple rounds of IVF before conceiving. Surrogacy can cost up to $100,000. If the research studies are correct, many women who are paying for these expensive treatments may actually have undiagnosed Celiac Disease. We need to continue to inform and discuss this with our families, friends, and neighbors as so many are potentially impacted.

General infertility statistics are found on the CDC site: http://www.cdc.gov/nchs/fastats/fertile.htm.

Other references which may be of interest:

1. Undiagnosed celiac disease in women with infertility. Machado AP, Silva LR, Zausner B, Oliveira Jde A, Diniz DR, de Oliveira J. J Reprod Med. 2013 Jan-Feb; 58(1-2):61-6

2. Increased prevalence of celiac disease in patients with unexplained infertility in the United States. Choi JM, Lebwohl B, Wang J, Lee SK, Murray JA, Sauer MV, Green PH. J Reprod Med. 2011 May-Jun; 56(5-6):199-203.

3. Immediate effect on fertility of a gluten-free diet in women with untreated coeliac disease. Raffaella Nenna, Maurizio Mennini, Laura Petrarca, Margherita Bonamico. Gut 2011;60:1023-1024.

4. Anti-tissue transglutaminase antibodies from celiac patients are responsible for trophoblast damage via apoptosis in vitro. Di Simone N, Silano M, Castellani R, Di Nicuolo F, D’Alessio MC, Franceschi F, Tritarelli A, Leone AM, Tersigni C, Gasbarrini G, Silveri NG, Caruso A, Gasbarrini A. Am J Gastroenterol. 2010 Oct; 105(10):2254-61.

5. Infertility Treatment in a Population-Based Sample: 2004–2005. Sara E. Simonsen, Laurie Baksh, Joseph B. Stanford. Maternal and Child Health Journal. May 2012, Volume 16, Issue 4, pp 877-886.

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Delay in Diagnosis of Celiac Disease

This is my first grade photo. This was taken right before I began to show signs and symptoms of Celiac Disease. Although it takes, on average, 10 to 13 years after the initial onset of symptoms for a patient with Celiac Disease to be diagnosed, in my case it took almost 30 years.

Undiagnosed, and hence, untreated, Celiac Disease is associated with anemia, osteoporosis, arthritis, infertility, central nervous system damage, and the development of other autoimmune diseases. Celiacs with longstanding exposure to gluten are also at an increased risk of cancer of the digestive system. Although some of these problems, such as anemia and infertility, are reversible once gluten free, others are not. My autoimmune thyroid disease (Hashimoto’s thyroiditis), which I suspect is due to decades of gluten exposure, will never go away.  Through the internet I have interacted with tons of other people with Celiac Disease with long delays in diagnosis (some not until their 50s or 60s). Anecdotally, it seems like a lot of us have multiple autoimmune issues, such as lupus, multiple sclerosis, fibromyalgia, and/or irritable bowel syndrome, as well as multiple food intolerances. It is unclear whether or not we would have developed these additional autoimmune problems had we removed gluten from our diets decades earlier, when we first started to show signs and symptoms of Celiac Disease. My gut tells me that we would have…

There was an interesting study published in Wales in 2007 in which the medical records of patients with Celiac Disease were reviewed. Celiac patients had a significant increase in number of subspecialist consultations in the years before diagnosis, seeing on average 5 different consultants. People with Celiac Disease also had symptoms of depression, anxiety, anemia, and diarrhea in much higher numbers than patients without Celiac Disease prior to diagnosis; 41% had a history of depression and/or anxiety. Swedish researchers examined the quality of life of 1500+ patients with Celiac Disease, both pre- and post-diagnosis, and found, not surprisingly, an improved quality of life for Celiac patients once diagnosed and treated (see link).

Last of all, a case report of a women diagnosed with Celiac Disease in her mid-forties (named Mrs. J) was published in a large medical journal called JAMA in 2011. Mrs. J’s main symptoms of Celiac Disease were recurrent miscarriages and chronic anemia. While I highly recommend that all of you read the article if you can, I am going to cut and paste a few of Mrs. J’s questions after diagnosis and the experts’ answers to her:

Could my miscarriages have been related to celiac disease? Currently the typical newly diagnosed patient with celiac disease is a woman around the age of 40 years who has had symptoms of celiac disease for over a decade. Given that active celiac disease has nutritional and direct inflammatory consequences on fertility, the reproductive life of many patients is irreversibly affected. In particular, the risk of miscarriage appears higher in women with untreated celiac disease compared to the general population. For these reasons, clinicians should maintain a very low threshold for celiac disease testing in this population.

Has my body sustained any irreversible damage from celiac disease over the years? The small intestinal mucosa has enormous regenerative capacity in both health and disease. Even individuals with longstanding, severe celiac enteropathy can expect to achieve complete or near complete intestinal healing with gluten avoidance and nutritional support, although the length of time to healing varies from less than one year to more than five years and healing is associated with younger age at diagnosis and improved GFD adherence. Outside of the intestine, however, healing is not always assured. A number of extraintestinal manifestations of celiac disease such as dermatitis herpetiformis, anemia, and joint pain, typically improve significantly or resolve within the first year of treatment, as was seen in Ms. J. One of the most common associations with celiac disease is reduced bone mineral density (BMD) which is seen in at more than 50% of patients at diagnosis. Although there is often a significant improvement in BMD over the first year of treatment with a GFD, up to 21% of patients will have persistent osteoporosis. There are multiple neurologic manifestations of celiac disease, some of including peripheral neuropathy and headaches which resolve, while case studies suggest that other manifestations including ataxia, may stabilize but rarely improve. Finally, there is a potential increased risk of secondary autoimmune disorders related to longstanding untreated celiac disease, and once triggered, these will not respond to gluten withdrawal.

My hope is that no child with current symptoms of Celiac Disease will have to wait 20+ years for diagnosis, like so many of us did. We need to prevent Celiac-associated problems, such as infertility, neurologic complications, and other autoimmune diseases, from developing in the first place, so that children with Celiac Disease can have an improved quality of life as adults!

References:

1. A case-control study of presentations in general practice before diagnosis of coeliac disease. Cannings-John R, Butler CC, Prout H, Owen D, Williams D, Hood K, Crimmins R, Swift G. Br J Gen Pract. 2007 Aug; 57(541):636-42.

2. Delay to celiac disease diagnosis and its implications for health-related quality of life. Norström F, Lindholm L, Sandström O, Nordyke K, Ivarsson A. BMC Gastroenterol. 2011 Nov 7;11:118.

3. Celiac disease diagnosis and management: a 46-year-old woman with anemia. Leffler D. Source Department of Gastroenterology, Beth Israel Deaconess Medical Center, and Department of Medicine, Harvard Medical School, Boston, Massachusetts 02215, USA. dleffler@caregroup.harvard.edu. JAMA. 2011 Oct 12;306(14):1582-92.

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The Gluten Contamination Elimination Diet

As many of us already know, there are some celiacs who are “refractory” and continue to have ongoing symptoms after going gluten free. In addition, there are a bunch of us who are “super sensitive” in terms of reactions to gluten cross-contamination. I am one of the super sensitives. Not too long ago I had a reaction from eating one bite of a Trader Joe’s “no gluten ingredients” brownie which I had prepared in my own gluten free kitchen for a potluck.

Just last week, Dr. Fasano and colleagues published a research paper on the effects of 3-6 months of a diet of exclusively whole, unprocessed foods on the symptoms of celiac patients who had no improvement while eating strictly gluten free. In this study patients were considered to have non-responsive celiac disease (NRCD) if they failed to respond to the gluten free diet or had a recurrence/relapse of symptoms despite being gluten free. Steroids are currently the standard of care for treating NRCD, which as we know can have serious side effects.

The researchers coined their diet the “Gluten Contamination Elimination Diet.” Here is the breakdown of foods with are allowed and prohibited on this diet:

Allowed: brown and white rice; all fresh fruits and vegetables; fresh meats; fish; eggs; dried beans; unseasoned nuts in the shell; butter; plain yogurt; plain milk, and aged cheeses; oils; vinegar (except flavored or malt); honey; salt. Beverages allowed include 100% juices, water, and Gatorade.

Not allowed: millet, sorghum, buckwheat or any other grains, seeds, or flours; frozen, canned, or dried fruits and vegetables; lunch meats; ham; bacon; seasoned or flavored dairy products; processed cheeses; flavored and malt vinegars.

Basically, all processed foods are eliminated. Of note, dairy is not reintroduced until week 4 of the diet.

17 patients with NRCD, all female, were placed on this diet for an average of 3-6 months. 14 of the 17 (82%) significantly improved on the Gluten Contamination Elimination Diet. Of those who did have biopsies performed after the diet, all but one had resolution of their villous atrophy. This is important information as there have been a lot of recent studies showing that persistent villous atrophy is common in celiac disease. Most of the patients in this study were able to eventually resume a “traditional” gluten free diet.

It has taken me over 3 years, and a lot of trial and error, to figure out the foods which my body loves and hates. Interestingly enough, my body’s food preferences are almost identical to the foods on the “allowed” list in this diet. Had I known about this diet, and adhered to it when I was first diagnosed, it would have saved me a ton of pain and anguish. I am optimistic that this diet (or a similar version) will become the standard of care for those newly diagnosed with Celiac Disease, and I hope that this happens sooner than later. If we work together, we can get the word out!

Reference: “Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients.” BMC Gastroenterology. 2013. 13:40 (e-pub).

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A Glimmer of Hope (for Increased Awareness of Gluten-Related Problems)

I recently came across a discussion concerning celiac disease on a physician-only internet forum.  Here are some of the (anonymous) comments which were posted:

“Ugh. Is there any disease more boring and worthy of turfing to the GI guys than Celiac Sprue?”

“Celiac disease – so little known, so much to know, so important to know”

“Celiac disease is easy to diagnose ONCE SUSPECTED! We can easily suspect in a child with diarrhea and an adult with the same in chronic state, but in the face of generalized inanition, neuropathy, or other intestinal disorders, or teen age diabetes onset, it doesn’t readily pop up in one’s conciousness. Yet recent studies have suggested that as many as 1 in 5 with celiac disease will have a variety of neurologic and other symptoms. I know in my practice I can look back and see a number of patients whose symptoms might nowadays suggest a strong need for screening. It is with regret that I look back on their years of suffering without a chance for their improvement with a gluten free diet or study of the nutritional factors disturbed by gluten deposition.”

“Most physicians are missing the Celiac Disease because they diagnose it as IBS.”

“Its very hard for patients to stick to a gluten free diet, unless the entire family goes gluten free, which most don’t. I am seeing many more gluten free products in the stores, though, especially baking mixes and crackers/cookies – makes it easier. But I have tasted some gluten free cookies. I decided that gluten is good.”

“Hey, did y’all know that most American soy sauce is mostly fermented wheat?”

And then I came across this comment, a true treasure, which made me feel like the time I had spent reading through the other comments was actually worthwhile. I wish that I could meet this physician in person and give him or her a huge hug!

I diagnose and successfully treat many children with gluten intolerance who do not meet the typical diagnosis of celiac. I screen all kids with neuropsychiatric and immune dysfunction for the HLA DQ2 and DQ8 genetic markers. If the patient is positive, I inform them they do not necessarily meet celiac diagnostic criteria, but the gold standard is a trial off gluten. IF the child is way better ( which they often are), the family is sold on the diet, even if it takes a lot of work. 

As for the kids who get worse gluten free, (many are autistic), they are usually soy or corn sensitive, and as they remove gluten they increase their soy and corn consumption and get worse. There are many families that seem more sensitive to soy and corn than even gluten, (GMO?), any trial off gluten, a family must be warned of this potential adverse effect so they are not surprised. Also, patients dont feel better for up to 2-3 weeks, in the beginning they have gluten withdrawal and get worse.

For all of you that believe the gluten free life is hard, it is far harder to have a severe autistic, anxious, depressed or ill child. Most families are more than willing to endure the trouble when they see their kids thrive. Don’t assume they will do poor.

As for those who say that they will have nutritional deficiencies, GIVE ME A BREAK, many cultures all over the world are free of gluten, it is not needed for human life. It just takes education, plus they eat less processed foods, which all Americans could benefit from.

Looking for this in my patients has changed my whole practice, and the lives of my families. We dont have IBS in our office, no functional abdominal pain, no chronic fatigue. Gluten intolerance is not all that we do for those conditions, but it is a good place to start. Children are suffering for reasons that are treatable, not “stress”.

This last post gave me hope that awareness of gluten-related disorders is finally increasing within the medical community, especially in pediatrics. It’s about time!

 

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Happy Sulfite Intolerance

I started to develop chest tightness and wheezing out of the blue in the middle of running with one of my neighbors last spring. I figured that I was out of shape from my pregnancy and the strange sensation slowly resolved as I walked. But then it came back again and again, each time a little bit worse, and sometimes with chest pain. I had a chest CT to evaluate for a pulmonary embolism, since I was at risk due to being postpartum, and it was normal. My chest x-ray was normal too. My heart tests, including an EKG and Echocardiogram, were unremarkable.

One night at work I had to go to the ED because I was having so much difficulty with breathing. I was diagnosed with possible asthma, given albuterol, and sent home with a prescription for a course of oral steroids. Despite the treatment, over the course of the next few weeks my breathing declined. I went from being able to run a 10K to getting winded and short of breath walking across a Target store. I wracked my brain trying to figure out why asthma would just “pop up” suddenly when I was in my mid-thirties….

I had pulmonary function tests and a methacholine challenge, to look for exercise-induced asthma, about 6 weeks after my symptoms first started, and everything was normal (I did not have asthma).

I began to notice that my chest tightness/wheezing would occur shortly after eating. Around this time I was back to work and eating a lot of Apple Cinnamon Chex and KIND bars for both snacks and meal replacements. I began to keep a food journal and discovered that all the the following foods were triggers for my symptoms: Apple Cinnamon Chex, raisins, wine, Juices, KIND bars, eggs, certain bottled waters, balsamic vinegar, shrimp, and anything that contained molasses as an ingredient. I looked at a box of Apple Cinnamon Chex over and over until I saw the words “contains sodium sulfite.” I did a web search for foods that contain sulfites, and I found that ALL of my trigger foods were on the list. I discovered that I had a sulfite intolerance, which is also called a “sulfite allergy.”

FAQ about about sulfites:

What are sulfites?

Sulfites are sulphur-based compounds which are added to foods and supplements as a preservative and/or flavor enhancer. They may also occur naturally. Sulfite sensitive individuals need to avoid all of the following:

  • sulfur dioxide
  • sulfurous acid
  • sodium sulfite, sodium bisulfate and sodium metabisulfate
  • potassium sulfite, potassium bisulfite and postassium metabisulfite

What foods contain sulfites?

  • Baked goods
  • Beverages (including beer, wine, hard cider, fruit juice, vegetable juice, and tea)
  • Bottled lemon and lime juice (concentrates)
  • Condiments
  • Cornstarch
  • Dried fruits
  • Dried and/or processed potatoes
  • Fruit toppings/jams/jellies
  • Gravies
  • Maraschino cherries
  • Molasses
  • Sauerkraut
  • Shrimp
  • Soy
  • Vinegar
  • Wine

The most comprehensive list and forum to check out regarding sulfites is the website: www.holdthesulfites.com.

Sulfites can be present in medications. A lot of generic acetaminophen tablets and other OTC meds contain sodium metabisulfite.  Cornstarch, which is sulfited during processing, is a filler in a lot of pills, and depending on the degree of one’s sulfite sensitivity, may trigger a reaction.

Why do people develop a sulfite intolerance?

We do not know. Most of the scientific papers about sulfite allergies are case reports which were published back in the 1980s (most are in French). Some theories I have come across on the internet regarding why a sulfite intolerance develops include that sufferers may have a partial sulfite oxidase deficiency (a full deficiency is fatal, so perhaps we are “carriers” of the gene and express some symptoms), or that symptoms are due to a deficiency of molybdenum, which is a mineral cofactor in the breakdown of sulfites. Other lines of thought are that the intolerance is related to an environmental exposure of some sort and/or is immune-related (a non-IgE mediated food allergy). In my interactions with others with this problem it seems like a lot of us have either Celiac Disease or gluten sensitivity. But, this is all anecdotal, as there is no research out there (and as far as I know, no one doing any research into the problem of sulfite issues).

How is a sulfite intolerance treated?

The most important thing is the obvious: avoid sulfites! However, this is easier said than done! The only mandatory labeling is for foods and drinks with a lot of sulfites added in, such as wine,  beer, and hard cider. Other foods which contain sulfites, such as dried fruits and KIND bars, do not have mandatory labeling. I have been unable to find any GF, sulfite free beers or hard ciders. The main sulfite free wine makers are Frey and Orleans Hill. I am partial to the Orleans Hill’s Zinfandel, Syrah, and Cabernet, and am slowly getting used to bringing my own bottle with me when I socialize. Many people report a lessening of symptoms while taking Molybdenum. I tried Molybdenum, and, unfortunately, and it did not help me. Other supplements which I have seen recommended include Vitamin B12, Magnesium, and Probiotics. It also never hurts to have an Epipen (or 2) around, just in case of a severe reaction.  Ironically, though, Epipens do contain sulfites as preservatives!

How are sulfites metabolized?

Sulfite Metabolic Pathway (from http://pathman.smpdb.ca/pathways/SMP00041/pathway):

Sulfur_Metabolism_a

Update January 2014: Since writing this post last spring I discovered that my sulfite intolerance is the result of an immune system disorder called mast cell activation syndrome (MCAS) and I have since started on a treatment regimen.  Please see my recent post on MCAS for more details. Thank you.

References/Links:

1. www.holdthesulfites.com: This is hands-down the most comprehensive resource out there for those who are suffering with sulfite issues.

2. “Allergies and Sulfite Sensitivity.” www.webmd.com. 2012.

3. American Academy of Nutrition and Dietetics Nutrition Care Manual (accessed 8/10/12)

*Also, a quick reminder that this is a blog. I am summarizing medical literature, but also adding in my own thoughts and opinions on what I have read. I am not trying to tell anyone what they should do for their own health, nor am I giving medical advice through this page. Thank you!

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Probiotics and Celiac Disease

Up until last year, the only thing which I knew about probiotics are that they are “good” bacteria which some people take to improve gut health. I began to see more and more posts about probiotics on the Celiac forums and I became curious. I asked my primary care physician if I should be taking probiotics for my Celiac Disease and he said no. I asked my gastroenterologist if I should be taking them and he also said no. I did not heed their advice and went to a local health foods store to buy one anyway. I told the nutritionist that I was gluten free due to Celiac Disease and was sold one that contained barley grass as an ingredient! At this point I was about 4 weeks postpartum and had a screaming baby and toddler at the health foods store with me when I made my purchase (so was a tad bit distracted). Fortunately, I was able to return the gluten-filled probiotic, and since then I have learned quite a bit.

Probiotics are healthy bacteria which keep the microflora (bacterial balance) of our digestive systems intact and prevent overgrowth of “bad” bacteria. The normal human GI tract contains 400+ types of probiotic bacteria. The largest group of probiotic bacteria in the intestine is lactic acid bacteria, of which Lactobacillus acidophilus, is the best known. Probiotics are found naturally in certain foods, such as yogurt, and are available as dietary supplements. Probiotics are often prescribed alongside antibiotics to prevent the depletion of “good” bacteria during antibiotic treatment for infections. They are also used to prevent recurrent yeast infections, during recovery from infectious diarrheal illnesses, and in some cases of intestinal inflammation, such as that seen in inflammatory bowel disease.

In 2005 there was a study done by O’Mahoney et al, which showed a marked improvement of GI symptoms (abdominal pain, bloating, and diarrhea) in patients with Irritable Bowel Syndrome who took probiotics compared with placebo (see reference). Adult and pediatric patients with Celiac Disease have recently been shown to have low levels of a probiotic species called Bifidobacterium in their digestive tracts (see reference).

A group of researchers from Argentina recently evaluated the benefit of giving probiotics to patients with Celiac Disease and published their results in the February 2013 issue of the Journal of Clinical Gastroenterology (see reference). They gave patients with untreated Celiac Disease (just to clarify, these patients were still eating gluten) a probiotic called Bifidobacterium infantis for a 3 week course and compared them to controls who took a placebo. 86% of the Celiac patients had evidence of leaky gut (called increased intestinal permeability) at the beginning. At the end of the 3 week period they evaluated for a difference in leaky gut and found no difference between the group of Celiacs who received the probiotic and the group which did not. In the discussion at the end of the article, the authors admit that their lack of difference between groups may be due to the short duration of the study and/or the fact that the probiotic administered only contained one strain.

To date, there have been no studies evaluating the effect of probiotics on the symptoms of patients with Celiac Disease who are being treated with a gluten free diet. I think that most of us with Celiac Disease who are interested in probiotics are patients who are already gluten free but not feeling 100% better, having symptoms of leaky gut, multiple food intolerances, and/or want to optimize our treatment. If a patient with Celiac Disease is not following a gluten free diet, then I think that it is less likely that he or she would be interested in taking probiotics. So, as with so much of Celiac Disease, we, the current patients, are the subjects.

Based on the “experts” in the social media world and my own experiences I have learned the following about selecting the right probiotic:

1. Make sure that your probiotic is gluten free and also free of other foods to which you may have intolerances, such as lactose or soy.

2. The higher the bacteria count (CFU), the better.

3. The probiotic should contain at least 2 different strains of bacteria, of which one should be Lactobacillus.

4. Probiotics should be taken on an empty stomach.

5. Once you begin taking a probiotic, you will experience a 24 to 48 hour period of digestive distress. This is normal and I believe is part of the war between the “good” and “bad” bacteria in your intestines. This will improve with patience and time.

I have been taking an over-the-counter (OTC) probiotic called Florajen 3 for the last 6 months or so with a good effect. It costs about $24.99 for 90 capsules, a 3 month supply, and is gluten, soy, dairy, and corn free. Other probiotics which I have seen good reviews for include Culturelle and Align, which are OTC, and VSL #3, which is by prescription only.

Since starting the probiotic my digestive symptoms and sensitivities to other foods have improved. As I have read and researched this area further, I have also decided that if/when my kids need antibiotics in the future, that I will make sure that they take a probiotic at the same time to maintain a healthy gut flora (due to them all having a high risk of gluten-related issues due to a genetic predisposition to celiac disease).  From all I have read about probiotics, I feel that the benefits far outweigh the risks for those of us with gluten-related illnesses.

Thank you for reading! If you are currently taking a probiotic, I would love to hear your experiences and advice.

*Also, a quick reminder that this is a blog. I am summarizing medical literature, but also adding in my own thoughts and opinions on what I have read. I am not trying to tell anyone what they should do for their own health, nor am I giving medical advice through this page. Thank you!

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Easy Gluten Free “Muffin Tin” Recipes for Families

When I started this blog, I had no intention of posting recipes, as there are a ton of awesome websites and blogs with gluten free recipes already in existence.  However, as a working mom who prepares gluten free meals regularly for a family of 6, I have adopted a ton of super easy, family friendly foods over the past few years. One common theme is that all of these recipes involve making foods in a muffin tin.  For some reason, my kids seem to really like this!  All six recipes are gluten free and soy free, and some are Paleo and/or dairy free (or can be modified to be so).  If you’d like, you can skip the cooking spray and use olive oil to grease the tins instead. Okay, here are your recipes…

1. Zucchini Bites (recipe adapted from The Naptime Chef)

Ingredients: 1 cup grated zucchini, 1 egg, 1/4 yellow onion (diced), 1/4 cup cheese (we usually use parmesan), 1/4 cup GF bread crumbs, salt and pepper

Directions:  1. Preheat oven to 400F.  Spray a standard muffin tin or mini muffin tin with cooking spray and set aside.  2. Squeeze out grated zucchini between paper towels so it is dry.  3. Mix egg, onion, cheese, bread crumbs, zucchini, and salt and pepper (use as much as you’d like) in a bowl.   4.  Using a spoon or cookie scoop, fill the muffin cups to the top.   5. Bake for 15-18 minutes, or until the tops are browned and set.

**Makes 12 mini muffins or 6 regular sized muffins.  We have doubled and even tripled the recipe many times without a problem!

 

2. Pizza Frittatas (I have had this recipe for so long that I cannot recollect its origin):

Ingredients: 1 cup chopped mushrooms, 1 chopped bell pepper, pepperoni slices, 10 large eggs, 1 cup shredded mozzarella cheese, 1 tsp salt

Directions:  1. Preheat oven to 350F.   2. Saute the mushrooms and bell pepper.   3. Spray muffin tin with cooking spray and divide sauteed veggies evenly into each cup.    4.  Line inside of each cup with 4-5 slices of pepperoni.  5.  Whisk eggs and salt together.  Pour eggs evenly into each muffin cup.   6. Top each with mozzarella cheese.     7. Bake for 15 minutes, or until eggs are set and puffy.

**You can tightly wrap the individual frittatas and freeze.  Microwave in 15 sec increments until heated through.  You can prepare as a Paleo dish if mozzarella cheese is omitted.

 

3. Easy Cheesy Bread (modified from a recipe on www.simplyrecipes.com):

Ingredients: 1 egg, 1/3 cup olive oil, 2/3 cup milk, 1-1/2 cups tapioca flour, 1/2 cup grated cheese of your choice, 1 tsp salt

Directions: 1. Preheat oven to 400F.   2. Put all ingredients into a blender and pulse until smooth.  You may need to use a spatula to scrape down the sides of the blender halfway through.  3. Pour into a greased muffin tin.    4. Bake for 15-20 minutes until puffy and just lightly browned.

 

4. Meatloaf Delight (modified from a new recipe called “Meatloaf in a Muffin Tin” on Dana’s website, www.celiackiddo.wordpress.com):

Ingredients: 1-1/2 lbs lean ground sirloin, 2 garlic cloves (minced), 1tsp salt, 1/2 tsp pepper, 1 cup GF bread crumbs, 1 egg

Directions: 1. Preheat oven to 450F.     2. Grease a standard sized muffin tin.     3. Combine sirloin, egg, garlic, salt, pepper, and bread crumbs in a large bowl with your hands.     4. Divide equally into muffin cups, either using an ice cream scoop or rolling into balls and pressing into cups.    5. Bake for 20 minutes, making sure to cut into one to make sure it is cooked through before serving.

**if you check out Dana’s website (see above) she has a recipe for a ketchup glaze to put on the top before cooking.  We opted to give our kids ketchup on the side.  We just made this recipe for the first time last week. My oldest gave it a score of an 11 on a scale of 1 to 10, and my 2nd coined it “Meatloaf Delight” because he loved it so much.

 

5. Salmon Cakes (adapted from a recipe on www.runnersworld.com):

Ingredients: Two 6 oz cans of salmon, 2 eggs, 1/2 cup GF bread crumbs, 1/3 cup milk (can use non-dairy milk), 1 shredded zucchini, 2 tsp curry powder (okay to omit curry if you don’t have it)

Directions: 1 Preheat oven to 350F.    2. Combine all ingredients in a large bowl.    3. Stuff into 8 to 12 standard sized muffin cups (we have had enough for 12).    4. Bake for 25 minutes.

**can be served with an avocado sauce as well (combine 1 avocado, 1/2 cup plain yogurt, juice of 1 lime, and 1/4 tsp salt in a food processor).

 

6. Banana Chocolate Chip Muffins (also via www.celiackiddo.wordpress.com):

Ingredients: 3 ripe bananas, 1/2 cup coconut milk, 2 tbsp apple cider vinegar, 1 tsp GF vanilla extract, 1-1/2 cups GF all purpose flour (I am pretty sure you can substitute almond flour but we have not tried this yet), 1/2 cup light brown sugar, 1 tsp baking soda, 1-1/2 tsp cinnamon, 1/2 tsp salt, 1/2 cup mini chocolate chips (we use the Enjoy Life brand)

Directions: 1. Preheat oven to 350F.  Grease a standard, 12 cup muffin tin, or 2 mini muffin tins.   2. Place bananas, coconut milk, apple cider vinegar, and vanilla extract into a blender or food processor and pulse until smooth.  Scrape down sides with a spatula and blend again.    3. In a large bowl, whisk together all dry ingredients except for chocolate chips.     4. Add wet mixture to the dry mixture and mix well.     5. Fold in the chocolate chips.   6. Spoon batter into muffin tins.     7. Bake mini muffins for 10 minutes, standard sized muffins may need closer to 20 minutes (you will know they are done when a knife or toothpick inserted into the center comes out clean).

Enjoy!

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Why I Love Being Gluten Free

As a Celiac, going gluten free was nothing less than a rebirth for me.  I did not realize the toll that Celiac Disease had taken on my body and mind until after my diagnosis and treatment with the gluten free diet began. For the first time in my life since childhood I began to feel “normal” and like I was lifted out of a fog. The overall improvement in my life has been incredible. In addition to a total resolution of my chronic GI distress and arthritis, I experienced several other unexpected benefits of being off of gluten.

One of the first things that occurred after removing gluten from my diet was that I had a rapid increase in my energy level.  Although I ran track in high school, and continued to run while in college for fitness, I had struggled to run more than 2 miles at a time in the years leading up to diagnosis.  Like most aspects of my life, I chalked my exercise intolerance up to stress. Looking back, my real problem had been untreated Celiac Disease. Within 8 weeks of being on the gluten free diet I was able to run a 10K and within 16 weeks I completed my first half marathon.

The second thing that was noticeable within weeks of starting my gluten free journey was a marked improvement in the integrity of my hair, skin, and nails.  All of the “gross” stuff that I had experienced for ages, like adult acne, dandruff, breaking nails, alopecia (hair loss), and easy bruising, disappeared.  My hair grew back in and I actually had to get it cut regularly. I started to have to trim my fingernails on a weekly basis again (prior to going gluten free I cut them maybe once a month).  As I write and reflect on this now, I realize how malnourished by body actually was.

My depression has dissipated and I feel a joy about life that I did not feel when I sick with diarrhea, abdominal cramping, and joint pains on a regular basis. There have been several studies showing that there is a higher incidence of depression in patients with Celiac Disease, and I believe them. In my case I think that the improvement in my mood is multifactorial. Once I removed gluten I began to physically feel better and eat in a more nutritious manner, which led me to get be able to run and exercise, which in turn led to a decrease in my stress level and an improvement in my overall well-being.  Although there have been stressful experiences in my life the last few years (deaths, a miscarriage, familial stress, a multiple sclerosis scare, etc.) I have not had my depression recur like it used to prior to my diagnosis.

Miscellaneous other things which improved or disappeared when I removed gluten include the following (some seem utterly bizarre and I still cannot figure out if or why they are connected with gluten and Celiac Disease):

  • gray hairs on my head
  • ringing in my ears
  • TMJ (temporomandibular joint) pain and clicking
  • difficulty seeing at night
  • mouth sores and ulcers
  • hay fever and seasonal allergy symptoms
  • bad menstrual cramps
  • sensitivity to sounds and loud noises
  • styes
  • having to pee all of the time (although my husband may debate this one!)
  • low white blood cell count

I hope that with increased awareness and diagnosis of Celiac Disease and gluten sensitivity that others will begin to experience the fabulous gluten free life. I can attest that it is much better than the alternative!

Celiac Disease and the Innate Immune System

256px-Innate_Immune_cells

I know that this title sounds very boring (so much so that I doubt that many will read any further than this).  But, if you can bear with me, there is some fascinating research involving the role of the innate immune system in reactions to wheat. Trust me!

The role of the immune system is to fight infection.  There are two main types of immunity: innate and adaptive. The adaptive immune system is highly evolved and involves antibody formation. The ability of our bodies to “remember” previous infections and respond to vaccines depends on adaptive immunity.

The innate immune system, on the other hand, is our first line of defense against bacteria and viruses. It is primitive, exists in all plants and animals, and does not involve antibody formation. The innate immune system is made up of different types of white blood cells, including neutrophils, monocytes, basophils, and mast cells (see picture above).  When confronted with an “invader,” these cells release chemicals, called cytokines, which cause widespread inflammation.

The traditional teaching is that autoimmune diseases involve the adaptive immune system, as antibodies are created against one’s own tissues and organs, called “autoantibodies.”  For example, in Celiac Disease antigliadin antibodies and tissue transglutaminase antibodies (TTG) are created. However, recent research has shown that the innate immune system may also be involved in the “gluten reaction” experienced in Celiac Disease.

Alpha-amylase/trypsin inhibitors (ATIs) are “pest-resistant” molecules found in wheat and other cereals and grains, such as corn and soy. A team of researchers from Boston and Germany have recently discovered that wheat ATIs trigger an innate immune response, with a release of pro-inflammatory cytokines from monocytes, macrophages, and dendritic cells, when they come into contact with human intestinal cells.  They were surprised to find that inflammation occurred when wheat ATIs came into contact with cells from all of the subjects (both with and without Celiac Disease). I find this to be both fascinating and scary.

I am curious to see if those of us with Celiac Disease who seem to be “super sensitives” may actually have a stronger innate immune reaction to wheat than other Celiacs. I am also wondering if the innate immune system plays a role in why so many of us with Celiac Disease develop additional food sensitivities with time and/or feel like we get “glutened” from gluten free foods from time to time. The fact that other grains contain ATIs, and hence, can likely trigger an innate reaction, may explain why so many of us feel our best when we are on a Paleo, or at least “grain-light,” diet.  Finally, I hope that this information will stimulate research into the mechanism of non celiac gluten sensitivity, which so many suffer from.

For more information on this subject I suggest the following:

1. Gliadin Triggers Innate Immune Reaction in Celiac and Non-Celiac Individuals.  Celiac.com webpage. 12/31/2012.

2. J Exp Med. 2012 Dec 17;209(13):2395-408. doi: 10.1084/jem.20102660. Epub 2012 Dec. Wheat amylase trypsin inhibitors drive intestinal inflammation via activation of toll-like receptor. Junker Y, Zeissig S, Kim SJ, Barisani D, Wieser H, Leffler DA, Zevallos V, Libermann TA, Dillon S, Freitag TL, Kelly CP, Schuppan D. Division of Gastroenterology, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA 02215, USA.

3. Researchers believe pest resistance molecules in wheat play role in triggering innate immune responses.  National Foundation for Celiac Awareness website. 12/31/2012.

4. Natural “Pesticides” in Wheat: Is There a Role in Gluten Sensitivity and Celiac Disease? By Peter Olins, PhD. December 19, 2012.

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Yes, it is “Safe” to Raise Non Celiac Kids Gluten Free

I’ve realized that I have not written for almost a week and I think I am okay with this. When I started this blog two months ago, I anticipated being able to post about once a week, so I think I am on track. Between working full-time, running, and trying to squeeze in some sleep, the main reason  that I have not had time is that I have four small children. I am trying my best to cherish this phase of our family life, as I know that someday I will have four teenagers at once!

None of my kids have Celiac Disease, but I consider them all to be at high risk for its development. Although I was diagnosed when I was 33, I have probably had Celiac Disease since early childhood. My mother also has it, and interestingly enough, was diagnosed after I was. Through conversations with aunts and uncles, it seems there is some “gluten sensitivity” in my deceased dad’s family. Although my husband, Tom, does not have Celiac, we do know that he is HLA-DQ2 positive, as he was tested by his GI doctor.  He has both an aunt and cousin with Celiac Disease as well. If none of my children go on to develop Celiac Disease, I will be truly amazed!

We started off my Celiac journey with a shared kitchen. I read up on this as much as I could after diagnosis, and I had my own “gluten free” cabinet, pasta strainer and pasta pot, cooking utensils, baking dish, etc. I also kept separate GF butter, peanut butter, and other condiments to avoid cross contamination.  I always put my items on a piece of aluminum foil when toasting because I was never able to find the “toaster bags” which people would discuss on the Internet forums. I thought that I was doing everything right and although our GF/non GF set-up did work for a while, I kept on getting sick. In 2012 I developed a peripheral neuropathy, which is persistent numbness and tingling from nerve inflammation, and was evaluated for multiple sclerosis. My neuropathy ended up being Celiac Disease related, as a result of continued exposure to traces of gluten. We made our whole home gluten free in 2012 and I have had minimal problems since then.  My exposure to tiny hands and mouths with gluten crumbs was much more damaging than I could ever have imagined when I was diagnosed in 2010.

Through starting this blog I have been able to interact with a lot of moms with Celiac Disease and/or raising kids with Celiac Disease. Many of us have decided to raise all of our kids gluten free, however, this seems to be controversial.  I have learned that many people are being advised by their doctors that it is not “safe” to raise their non Celiac children gluten free, because they are being told that by doing so that they are depriving their kids of essential vitamins and nutrients.  I have researched this and have not found any evidence that this is the case, as long as gluten free kids are given a wide variety of non-processed, nutrient-rich foods.

Our youngest is now 10 months old and, freakishly enough, has 7 teeth, so she is eating table foods at dinner. We eat a lot of vegetables, fruits, meats, eggs, beans, and fish. Our “starches” consist of potatoes, rice and risotto, squash, and sweet potatoes.  Once a week or so we will make a GF pizza of some sort. Lately we have been making a cauliflower pizza crust which I adapted from a recipe I found on Pinterest (I will post it on the “Recipes” page of this blog soon). We occasionally make tacos, enchiladas and other Mexican foods, pasta or lasagna, and Indian dishes, usually a chicken curry of some sort.  For snacks our kids eat fresh fruit, applesauce, popcorn, dried fruits and nuts, yogurt, string cheese, GF crackers and rice cakes.  We always have a few “treats” in our home, usually Annie’s GF Bunny crackers, ice cream, and a tortilla chip of some sort.  I bake a lot of treats for the kids as well. We’ve made delicious chocolate chunk cookies using almond flour 2 or 3 times in the past week (see link). We’ve said goodbye to a lot of convenience foods like chicken nuggets and frozen macaroni and cheese.

I do not see any evidence that my children are nutritionally deprived. They are growing and thriving, are not anemic, and interestingly enough, my two oldest have grown quite a bit since going off of gluten last year.  I give all of them a calcium and vitamin D supplement once a day, but I have done this for years. We live in the midwest, where vitamin D deficiency is rampant in both kids and adults, and a deficiency is associated with the development of autoimmune diseases.  I have not given them any other vitamins or supplements. I am pretty certain that they are getting enough protein, fat, vitamins, minerals and calories for proper growth and development through their diets.

I am not trying to say that what I am doing for my family is right or best for all families. I am sharing my story in hopes that it may help others to make the decision whether or not to make their entire household gluten free. Looking back, I wish that I would have made the transition much earlier in my journey, as it would likely have prevented me from developing neurologic complications from Celiac Disease. Thank you for reading!

 *Also, a quick reminder that this is a blog. I am summarizing medical literature, but also adding in my own thoughts and opinions on what I have read. I am not trying to tell anyone what they should do for their own health, nor am I giving medical advice through this page. Thank you!

 

 

 

What your doctor may possibly be reading about Celiac Disease

medicine_and_Stethoscope

I was at a work function recently and I met a new physician. She noticed that I was not eating any of the food from the dinner buffet and she asked me why. I told her that I have Celiac Disease and she asked me, “What is Celiac Disease?” It took me a minute to respond because I was so taken aback by the question. When I responded that I cannot eat gluten, she asked me, “What foods is gluten found in?”  I went back to the basics in my explanation.

This encounter came about a month or two after I had another doctor ask me questions about my “gluten allergy” and whether or not I ever “cheat” on my diet. He told me that one of his relatives has Celiac Disease, but cheats all of the time.

That encounter came about 6 months after I was told by another M.D. that all Celiacs cheat on the gluten free diet because it is too difficult to follow. He shared with me that he has never met a patient who has been successful at eating gluten-free.

So, although I have not picked up a copy of “Harrison’s Principles of Internal Medicine” since medical school, as I am in a very different field, I marched into the library and began to read the 17th edition. Two of the 2500+ pages were devoted to “Celiac Sprue” (that is what it is called in this book). This is probably the last big, clunky edition of Harrison’s that many MDs have sitting in their offices for reference, as since then it has been widely available online.

Here are some of the things which I read (and what other doctors and practitioners may also be reading):

-Celiac disease is a common cause of malabsorption (true)

-it occurs in up to 1 in 113 people (true)

-although the cause is unknown, it is likely due to a combination of genetic, environmental, and immune factors (true)

-the hallmark findings are an abnormal small-intestinal biopsy showing villous blunting (photos of biopsies are shown) and response to a gluten-free diet (true)

-it may develop at any time during life (true)

-symptoms can come and go for years and years before diagnosis (true)

-symptoms include diarrhea, fatty stools, weight loss, nutrient deficiencies, anemia, bone disease, and/or iron deficiency anemia (true-but no discussion of all of the other symptoms and problems
which we now know celiac disease is associated with, like infertility, thyroid disease, joint pains, rashes, nerve inflammation, oral ulcers, ataxia, osteoporosis, etc.)

-it is associated with ingestion of gliadin, a protein component of gluten in wheat, rye, and barley (true-but no mention of oats often being a culprit as well due to heavy contamination with gluten)

-patients often have abnormally high levels of certain antibodies, such as IgA antigliadin, IgA endomysial, and IgA anti-TTG (true)

-10% of family members of celiacs may also be affected (true)

-Almost all patients are HLA-DQ2 positive. Absence of HLA-DQ2 excludes Celiac Disease (not true-we now know that about 8% of celiacs are HLA-DQ8 positive, and that a small number may actually not have either of the 2 main celiac genes).

-A small intestinal biopsy is required for diagnosis (this is not always the case anymore, a lot of people are diagnosed based on lab results, family history, and response to the GF diet; diagnostic
criteria are being revised)

-the most common cause of continued symptoms and lack of intestinal healing is continued ingestion of gluten (true, but the role other food intolerances, such as lactose intolerance, are not discussed)

-associated diseases include dermatitis herpetiformis, type 1 diabetes, and IgA deficiency (true-but no mention of all of the other problems which I discussed earlier)

-the most important complication is the development of cancers, like lymphoma (true)

Things which I am surprised were not mentioned in this textbook:
-that Celiac Disease is an autoimmune disorder
-that Celiac Disease can present without any gastrointestinal symptoms or anemia; the concept of “atypical” Celiac Disease
-that patients with Celiac Disease require follow-up testing, nutritional counseling, testing for bone density, vitamin levels, etc.
-that HLA-DQ8 is associated with the disease

This edition in my library was written in 2008. There was a more recent, 18th edition of the textbook, published in 2012, which I was able to access online. I was optimistic that it would
be much more up-to-date, which it was to a degree. There was a discussion of DQ8 as a genetic
marker. It also included the following very important statement:

“A much larger number of individuals have manifestations that are not obviously related to intestinal malabsorption, e.g., anemia, osteopenia, infertility, neurologic symptoms (“atypical celiac disease”); while an even larger group are essentially asymptomatic though with abnormal small intestinal histopathology and serologies and are referred to as “silent’ celiac disease.”

The problem is that this is very new publication, and if MDs are using the 2008 (or older) edition of the textbook, they are not going to be seeing this. A lot of younger physicians are using an online resource called “Up to Date,” which is continually updated and has all of the newer information on Celiac which seemed to be lacking in the textbook.  There is also a wonderful section on Celiac Disease in “Up to Date” for patients and their families, which I hope to share soon.

Reviewing the internal medicine textbook, in conjunction with my recent interactions with other medical providers, reminded me that we all need to work together to continue to educate our families, friends, doctors, nurses, teachers, neighbors, etc. about Celiac Disease. I am trying to do my part. Will you help me?

So it appears that Celiacs are not slowly dying after all…

Happy celiac

I recently came across the question, “Are Celiacs really slowly dying?” on one of the Celiac Disease forums. My first thought was, “Aren’t we all slowly dying?” Then, as I read, I realized that the person who posted it was concerned about research showing that many adult Celiacs do not have complete healing of their intestinal mucosa (tissue) despite being on the gluten free diet. This is called “persistent villous atrophy” in the medical world.

One of the major studies of persistent villous atrophy was published in 2009 (see link). Italian researchers studied a large group (n=465) of Celiacs who were on the gluten free diet. The average follow-up biopsy was performed 16 months after biopsy-confirmed diagnosis of Celiac Disease. At the time of follow-up biopsy, 75% of the patients reported that their symptoms had disappeared and 87% of the subjects experienced normalization of their celiac antibody tests on the gluten free diet. Of the 465 Celiacs on the GF diet, they found the following on repeat biopsy: 8% had completely normal duodenal (small intestinal) tissue, 65% were in remission (intestines looked better than at diagnosis, but there were still an increased number of white blood cells in the intestinal tissues), 26% had no change from diagnosis, and 1% were actually worse than prior to going gluten free.

At the end of the paper, the researchers hypothesize that the lack of intestinal healing and increased white blood cells may be due to the continual activation of the innate immune system by small amounts of gluten in “gluten free” foods. I plan to discuss this soon in another post. The Italian researchers’ findings and discussion at the end of their paper have, unfortunately, led many to believe that the gluten free diet is harmful and/or killing all of us with Celiac Disease.

In February 2013 Dr. Green and colleagues at both the Celiac Disease Center at Columbia University and in Sweden will be publishing a paper entitled “Mucosal healing and mortality in celiac disease.” Their teams set out to see if a lack of mucosal healing (persistent villous atrophy) is associated with an increased risk of death for patients with Celiac Disease. Similar to the Italian researchers, > 40% of Celiacs were shown to have persistent villous atrophy on follow-up biopsies. However, the researchers found no association between persistent villous atrophy and an increased risk of death for Celiacs. This is definitely a good thing!

After reading both of these papers, I am left with many questions: Why does it take so long for adult Celiacs’ guts to heal after going gluten free? Should we expect the same for children with Celiac Disease? Is the persistence of white blood cells in the intestines contributing to and/or a “marker” of the “leaky gut” that so many of us seem to be experiencing, or is it a normal part of the slow healing process? How is the innate immune system involved? Are follow-up biopsies for Celiacs going to be necessary in the future now that so many patients are diagnosed on the basis of genetics, symptoms, and abnormal antibody testing alone? Isn’t the fact that symptoms resolve and antibodies normalize much more important than what actually shows up on repeat biopsies?

I’ll definitely be hitting the books and reviewing the innate immune system in upcoming weeks with plans to share what I find with you…

**Also, a quick reminder that this is a blog. I am summarizing medical literature, but also adding in my own thoughts and opinions on what I have read. I am not trying to tell anyone what they should do for their own health, nor am I giving medical advice through this page.

 

The Prevent Celiac Disease Study

prevent_cd_logo

I recently wrote about the best available recommendations for when to introduce gluten to babies who may be at risk of developing Celiac Disease. Although most babies are exposed to small amounts of gluten in breast milk, for my 4th baby (first born after my diagnosis), my breast milk was gluten free. Based on the best available evidence in the medical literature, small amounts of gluten should be given between 4 to 6 months of age, as it seems this is a critical window for the development of the immune system. If gluten is introduced later than this, the consensus is that it is important for breastfeeding to still be taking place during gluten introduction (see references in my previous post for more info).

I understand that this is a controversial area, as many parents feel that they should never introduce gluten to the at-risk child. I believe that, despite our best efforts to shield our children from gluten, they are eventually going to be exposed one way or another.

I did recently discover that the question of the timing of gluten introduction is being explored in Europe right now through the PreventCD study (www.preventCD.com).

This study has been sponsored by the European Union and involves 11 countries. More than 1000 infants were enrolled in the study from 2007 through 2011, and they are now being followed for the development of Celiac Disease from infancy until age 3. Based on the latest newsletter on the study website, the last participant will turn 3 in 2013, and the results will be “unblinded” at this point.

The 1000 infants in the study were all considered to be “at risk” for CD by having a first-degree relative (parent and/sibling) with Celiac Disease and being HLA-DQ2 and/or DQ8 positive. The study “intervention” started at 4 months of age and went for 8 weeks. Half of the babies were given a gluten-containing baby food on a daily basis and half were given a placebo. Breastfeeding was encouraged for both groups during the 8 week period.

The endpoint of the study is to see if there is any difference in frequency of Celiac Disease between the two groups at age 3. As a mom, Celiac, and pediatrician, I am eagerly awaiting these results. I am also intereseted to see if they will have the funding and resources to be able to follow the children into later childhood and adolescence. Either way, the results which they share will be valuable for all of us!

Although the study results will not be published for a while, the researchers have published an interesting review paper on infant feeding and Celiac Disease:

Systematic review: early infant feeding and the prevention of coeliac disease. Szajewska H, Chmielewska A, Pieścik-Lech M, Ivarsson A, Kolacek S, Koletzko S, Mearin ML, Shamir R, Auricchio R, Troncone R; PREVENTCD Study Group.Aliment Pharmacol Ther. 2012 Oct;36(7):607-18.

The full details of their study are described in this paper:

The PreventCD Study design: towards new strategies for the prevention of coeliac disease. Hogen Esch CE, Rosén A, Auricchio R, Romanos J, Chmielewska A, Putter H, Ivarsson A, Szajewska H, Koning F, Wijmenga C, Troncone R, Mearin ML; PreventCD Study Group.Eur J Gastroenterol Hepatol. 2010 Dec;22(12):1424-30.

Eosinophilic Esophagitis and Celiac Disease

simplified-digestive-system-md

Eosinophilic Esophagitis, also known as “EE,” is gastrointestinal disorder that, like Celiac Disease, seems to be increasing in frequency of diagnosis. I first heard of EE disease when I was in my pediatric residency.  I worked with a Pediatric GI specialist who seemed to diagnose all of his infant patients with gastroesophageal reflux (GERD) with EE. When I learned about EE I had no idea that my dear husband had the very same problem!

My husband was diagnosed with EE in 2009 after having several episodes of choking and feeling like he had food stuck in his throat. In usual wife fashion I recommended over and over again (looking back, perhaps I nagged a little bit) that he get evaluated for his swallowing problems. He finally saw a GI doc following an ED visit for a choking episode, and had an upper endoscopy with biopsy performed that showed numerous eosinophils in his esophagus.

Eosinophils are white blood cells that are usually involved in allergic reactions. Although doctors are not exactly sure what causes EE, it is believed that food allergies/intolerances play a role. Both adults and children can be affected by EE, but the symptoms are different in these two groups. In adults EE leads to symptoms of difficulty swallowing (feeling like food is stuck in the throat), chest and/or abdominal pain, and heartburn. Infants and small children who are affected may refuse to eat, develop failure to thrive, and suffer from abdominal pain and/or nausea and vomiting. Some babies who are diagnosed and treated for “reflux” by their pediatricians may actually have EE.

Most patients with EE are referred for food allergy testing. If there are food allergies, avoiding the food “triggers” often helps their EE symptoms to improve. Infants and toddlers with EE may need to be put on a hypoallergenic formula, such as Neocate, to avoid allergic triggers. Other treatments for EE include proton pump inhibitors (PPIs), which are a type of anti-reflux medication, and swallowed inhaled steroids (such as Flovent) to decrease inflammation in the esophagus.

My husband’s GI doctor tested him for Celiac Disease, as, in his experience, he has encountered many patients who have both Celiac Disease and Eosinophilic Esophagitis. Although my husband does not have Celiac Disease, he carries one of the main Celiac genes, and he has found that his EE symptoms have markedly improved since going on a gluten free diet. I find this to be very fascinating as it makes me suspect he may be gluten sensitive to some degree.

Dr. Peter Green from Columbia University, one of the nation’s leading experts in Celiac Disease research, published a study showing a clear link between Celiac Disease and EE in 2012. In his paper (see link), both children and adults with Celiac Disease are at a much higher risk of also having EE. There have been a handful of smaller studies also showing an association between the two disorders, but, like with much research related to Celiac Disease and gluten-related disorders, more work needs to be done.

For additional information I recommend the American College of Allergy, Asthma & Immunology (ACAAI) page on Eosinophilic Esophagitis.

Celiac Disease and Pregnancy

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Although I am pretty sure that I had Celiac Disease for more than two decades before my diagnosis, I was not diagnosed until after my 3rd child was born. Looking back, my diet during my first 3 pregnancies was a gluten-filled nightmare. I am actually glad that I have no idea how sky-high my celiac antibodies probably were while I was pregnant with my oldest kids.

There has not been a ton of research on celiac disease and pregnancy, but based on the work that has been done, I have learned that celiac disease has effects on fertility, miscarriage rates, fetal growth, and the ability to carry a pregnancy to term.

Celiac disease is associated with early menopause, endometriosis, irregular menstrual cycles, and amenorrhea (missed periods), similar to what is seen in many other autoimmune diseases.

Between 4 to 8% of unexplained infertility is due to undiagnosed celiac disease. Many celiacs with infertility as their main problem do not have the “classic” digestive symptoms that would normally lead to diagnosis.

Once pregnant, women with undiagnosed celiac disease have between a 2-4x higher risk of miscarriage than women who do not.

During pregnancy, women with untreated celiac disease are at a higher risk of anemia, preterm labor, stillbirth, and having infants with low birth weights (growth restriction). These problems are related to a combination of maternal nutrient deficiencies during pregnancy, as well as effects from the attack of the placenta by maternal auto antibodies (TTG).

As a part of taking care of premature babies, it is important for me to review the medical and obstetric histories of my patients’ mothers. I have come across women more times than I can keep track of who, upon review of their medical records, may have celiac disease (some combination of irritable bowel syndrome, anemia, thyroid disease, depression, infertility, diabetes, and/or asthma). I have a friend who did a small research study during her fellowship in which she evaluated the mothers of low birth weight babies for celiac disease. Through her study, one mother was diagnosed with celiac disease. Similar research has recently been conducted in Italy, with results mirroring my friend’s.

Based on the information on the University of Chicago Celiac Disease Center website, once a woman is diagnosed with celiac disease and on a strict gluten free diet, fertility should return. Experts have recommended waiting between 6 months to 2 years once being gluten free before trying to conceive, in order to give the body time to heal. It is essential for celiacs to be on appropriate vitamin and mineral supplementation while pregnant.

It is assumed that pregnancy outcomes for women with treated celiac disease are similar to those of women without it. The only exception is that celiacs are still at a higher risk of miscarriage, even when we are gluten free during pregnancy. I have personally experienced this; back in 2011 I miscarried within days of bad “glutening” episode.

In summary, women with unexplained infertility should be screened for celiac disease. Once diagnosed, it is important to remain strictly gluten free and take a good gluten free prenatal vitamin while pregnant. One of the best resources to check the gluten status of a medication is at www.glutenfreedrugs.com. Last of all, try not to worry about the effects of celiac disease on your baby! Treated maternal celiac disease has no association with birth defects, heart problems, cerebral palsy, etc. However, if you are like me, you will worry about your baby throughout your entire pregnancy…this is a totally normal part of being a mom!

For additional reading on celiac disease and pregnancy, I recommend the following links:

1. The National Foundation for Celiac Awareness’ 2009 article “Pregnancy and Celiac Disease.”

2. “Celiac Disease: An underappreciated issue in women’s health” by Shah, S (2010).

Thank you for continuing to read and providing inspiration for posts!

Update September 2013: A group of Italian researchers has discovered that the type 2 tissue transglutaminase (TTG) antibodies seen in Celiac Disease interfere with the development of placental blood vessels. Reference is Simone, et al. Potential New Mechanisms of Placental Damage in Celiac Disease: Anti-Transglutaminase Antibodies Impair Human Endometrial Angiogenesis. Biol Reprod. Sept. 5, 2013. E-pub, ahead of print.

 

 

Carrageenan and Celiac Disease

red seaweed

Carrageenan is a food additive that is extracted from red seaweed.  It is used as a thickener and emulsifier and is found in dairy products, processed meat, soymilk, toothpaste, and ready to feed infant formulas. I first came across it on an ingredient list early in on my gluten free (and food label reading) life. Once I learned that it is gluten free and “natural,” I assumed it was safe for me to eat as a celiac. However, a few months ago I began developing GI upset every time I ingested it, and I cut it totally out of my diet. Based on what I have now learned, I am glad that carrageenan is out of my life and kitchen.

First of all, the definitive answer to the question, “Is carrageenan safe for celiacs?” is never going to be known in our lifetimes.  No one is going to pay for a randomized controlled trial in which one group of celiacs are fed carrageenan and one group are fed a placebo, and outcomes of the two groups are measured. It’s just not going to happen.

Carrageenan has antiviral properties and stimulates the immune system.  On a quick search through the Pubmed.gov database, carrageenan aids in killing viruses and is being researched as an additive in treatments for HIV, enterovirus, and human papilloma virus.

When rats are given carageenan, they develop inflammation and arthritis-type symptoms.  Many studies of anti-inflammatory medications involve giving the test medications to Carrageenan exposed, and hence, inflamed rats and monitoring for improvement and side effects.

Research has shown that animals given carrageenan in high doses develop polyps, ulcers, tumors, and inflammation of the intestine. Most of the published research on the effects of carrageenan on human cells and tissues is by Dr. J. Tobacman from the University of Illinois, Chicago.  In the past year she has shown that carrageenan leads to enzyme changes and an inflammatory response in human intestinal and mammary cells as well. See link for more information.

There are two types of carrageenan. The first is degraded, or low molecular weight, and is the type which has been shown to cause inflammation in animals and human cells. It is not used in food products and products for human consumption.  The second type is undegraded, or high molecular weight, and is the type which is added to foods and beauty products.  There is an widespread belief that undegraded carrageenan is safe, and according to the Stonyfield farms website:

The scientific literature overwhelmingly concludes that undegraded carrageenan is safe to eat.  Based on this independent review of the literature, along with the Board’s recommendation to continue to allow it in organic production, we feel that carrageenan continues to be a safe ingredient to use.

What we don’t have any information about is whether or not our bodies convert some of the undegraded (“safe”) form to degraded (“unsafe”) form after we have eaten it. There are a few small studies from the 1970s which show that this chemical change occurs in the intestinal tract of rats and guinea pigs.

The European Union has banned the use of carrageenan in infant formulas due to concerns about safety in this population.  I just checked the website of the major U.S. formula makers and it is still present in most ready-to-feed formulas commercially available in the U.S.

Dr. Weil, M.D., one of the nation’s leaders in integrative health, spoke out against carrageenan in October 2012 (see link), stating, “I recommend avoiding regular consumption of foods containing carrageenan. This is especially important advice for persons with inflammatory bowel disease.”

As a Celiac I’ve made my decision and there’s no turning back now….

My First Trip to a Gastroenterologist

GI

I have been wanting to get this story off of my chest for a while! Alternative titles ideas for this post included, “Why I did not become a Gastroenterologist,” and, for my M.D. friends, “Some females with chronic abdominal pain may actually be suffering from gluten intolerance.”

I saw a gastroenterologist for the first time approximately 16 years ago. It was the summer between my freshman and sophomore year of college. It is etched in my memory because it was such a horrible experience.

I suffered from a mysterious mono-like illness when I was 18 that started shortly after an episode of food poisoning. Soon after, I began to have episodes of sharp, stabbing, diffuse abdominal pains accompanied by bloating and diarrhea. My symptoms seemed to always get worse in the evenings, shortly after dinnertime. I wondered why I would go from looking “not pregnant” to about 8 months pregnant within minutes. I slept with a heating pad on my abdomen most nights. I also had recurrent pharyngitis, fatigue, oral ulcers, and anemia. I also could eat anything I wanted without gaining any weight (which I admit, I thought was pretty cool at the time).

I was treated over and over again for stomach and duodenal ulcers, but despite treatment, my symptoms continued to worsen. During my freshman year I had an upper GI performed (barium swallow) which was normal. My adolescent medicine doctor referred me to a Gastroenterologist and I met him that following summer. It was a memorable experience…but not in a good way! The GI doctor came into the room and didn’t introduce himself. He never sat down. He did not look me in the eye. He reviewed the results of my upper GI study and told me it was normal. He told me that I had Irritable Bowel Syndrome (IBS). He asked me if I had ever been sexually abused. After telling him that I had not, he told me that I must have been abused and was repressing it, because, in his experience, most of his female patients with Irritable Bowel Syndrome had abdominal symptoms as a result of abusive memories. He recommended that I get psychological counseling and to eat a lot of whole grains. He walked out the room.

I remember this interaction vividly because I was planning on going to medical school and it was one of my first experiences as an adult patient. Although I cannot remember the name of the Gastroenterologist, I know that, if I really wanted to, I could find him, as at the time he was working at a large university hospital in a large mid-western city. I hope to God that he actually evaluates his IBS patients for Celiac Disease now, in lieu of recommending psychological evaluations and whole grains. Actually, I hope for the sake of all that he is no longer practicing medicine!

Perhaps I have shared too much with you, but I know that there are tons of Celiacs who have had similar experiences to mine. The lesson that I learned was that I should have gotten a second opinion (or third, or fourth if needed). And, if you or your loved ones are having symptoms that seem to be dismissed, that you need to seek alternate opinions as necessary.

Also, despite there being bad doctors out here, most of us truly care about our patients and want them to heal! We continually learn from our patients as well. Please ask questions and provide us with information that you think is important and relevant to your care and the care of your family. I have learned a ton from the parents of children with chronic illnesses through the years.

When “Gluten Free” Does Not Mean “Free of Gluten”

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My husband and I recently traveled to Kauai, Hawaii for a conference. We ended up having a peaceful and wonderful time, but, as usual, I was nervous to eat due to concerns about being “glutened” while traveling. I was well prepared for the long flight with fruit, nuts, water, Larabars, and other snacks. Once we arrived at the resort, however, my anxiety set in, despite being assured by the concierge that all of the cafes, restaurants, etc. in the resort had “gluten free” options available.

The first morning of our trip I went down to grab breakfast on the terrace. I had placed an order for a large coffee and a fruit bowl, when I saw a sign stating that gluten free muffins were available. I inquired about where the gluten free muffins were, and the clerk pointed to the glass case with shelves of regular muffins, croissants, and pastries. The gluten free muffins were at the bottom of the case, in the perfect location to have an ongoing shower of crumbs as the higher up regular pastries, croissants, and muffins were removed for customers. I suggested that they move the gluten free muffins to the top row to prevent cross-contamination and I mentioned that someone with Celiac Disease could get very sick from eating one of the muffins.

The next morning I was pleased to see that the gluten free muffins had been moved to the top row, but upon closer inspection, saw that they were “kissing” the gluten containing muffins next to them (see poorly taken photo from my cell phone). Sigh….

I was reminded once again that, as Celiacs, we need to be very careful to confirm that our “gluten free” food is truly gluten free and free of cross-contamination. If a “gluten free” chicken breast is grilled on the same surface as wheat-containing buns, it is not gluten free. If “gluten free” french fries are made in the same fryer as onion rings and mozzarella sticks, they are not gluten free. If “gluten free” muffins are touching gluten-containing muffins, they are not gluten free. We must always watch our muffins and we need our families and loved ones to do the same.

Fortunately, I met a woman named Marie Cassel on the island, and thanks to her 100% gluten free bakery, Sweet Marie’s, in Lihue, I ate muffins to my heart’s delight. I truly regret not eating more of them while I had the opportunity! Now we will definitely have to return to Kauai….

 

Introducing Gluten to the Baby At-Risk for Celiac Disease

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This is Claire. She is my fourth baby, my “last” baby, and one of the greatest gifts of my life. She is the first baby I’ve had since being diagnosed with Celiac Disease and going gluten free. Because of this, I spent a lot of time during the postpartum period obsessing/fretting/freaking out about if/when I should expose my dear baby to gluten. I felt that I needed to do everything that I could to protect her from developing celiac disease. As usual, my husband was much more laid back and calm about the whole situation!

I researched my question and discovered the following:

1. Based on the best available information, gluten should be introduced to the “at risk” baby between 4 and 6 months of age. This runs counter to the current notion that infants should be exclusively breastfed for 6+ months and not have solids introduced until after 6 months.

2. Babies should be breastfed when gluten is first introduced and should continue to receive breast milk for at least 2-3 months after the first introduction to gluten.

Here is some of the science behind what I discovered:

-Anti-gliadin antibodies (antibodies against the major gluten protein) are present in breast milk of all women. The highest antibody titers are in colostrum, or early breastmilk, and levels decrease with time. It is hypothesized that these antibodies, which are passed from mother to baby, provide immunity to babies when gluten is introduced. Please refer to my post from November 2012 for additional information.

-Norris, et al. followed a large cohort of infants (>1500) in the U.S. who were at risk of developing celiac disease between the years 1994 and 2004. Feeding practices were analyzed and their research showed a much higher risk of celiac disease if gluten was introduced between 1 and 3 months of age or after 6 months of age.

- The rates of celiac disease skyrocketed in Sweden between 1984 and 1996; 3% of children born during this time developed celiac disease. This epidemic coincided with a nationwide change in feeding practice recommendations from starting solids between 4-6 months until after 6 months of age. This led to many infants having gluten introduced after being weaned from breastfeeding. See link for more information.

- The European Society for Pediatric Gastroenterology, Hepatology, and Nutrition (ESPGHAN) recommends avoiding both early (<4 months) and late (>7 months) introduction of gluten and to introduce gluten while the infant is still being breastfed. This mirrors the advice given by the University of Chicago Celiac Center (see website). The American Academy of Pediatrics emphasizes the importance of introducing gluten while breastfeeding in their 2012 “Breastfeeding and the Use of Human Milk” policy statement.

Overall, there seems to be a current consensus for an optimal “window” for introducing gluten to the “at-risk” baby between 4 and 7 months.

Back to sweet, little Claire. We started her on wheat-contaminated baby oatmeal at 4.5 months one time/day for about 4 weeks. She received exclusive breast milk for the next 2.5 months and is now a gluten-free baby. We’ll see what develops with time, but at if she develops Celiac Disease, at least I will know that I tried my best to prevent it!

Happy New Year and thank you for reading!

PLEASE NOTE THAT THERE HAS BEEN ADDITIONAL RESEARCH INTO THIS TOPIC SINCE I WROTE THIS POST IN DECEMBER 2012. PLEASE SEE MY OCTOBER 2014 POST FOR DETAILS. THANK YOU!

*Also, a quick reminder that this is a blog. I am summarizing medical literature, but also adding in my own thoughts and opinions on what I have read. I am not trying to tell anyone what they should do for their own health, nor am I giving medical advice through this page. Thank you!

Book Review: “Adam’s Gluten Free Surprise” by Debbie Simpson

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I discovered this book by reading a review written by “Celiac Yoga Momma.” I ordered my own copy, snuggled up with my three oldest kids over the weekend, and gave it a read. It could not have come at a better time as we’ve recently transitioned to being a totally gluten free household, which has been easier said than done.

This book shares the struggles of a little boy with celiac disease named Adam. His classroom is “typical” in the sense that parents and teachers provide treats on a regular basis, i.e. ice cream cones and pizza parties. As the school year progresses, Adam’s teacher and classmates gain a better understanding of what it means to have celiac disease and live gluten free. There is a great surprise at the end which I will not ruin for you!

“Adam’s Gluten Free Surprise” is a excellent book to read to any child with celiac disease, gluten sensitivity, and/or other food allergies. It is also an important read for any child who would benefit from having a better understanding of food allergies and intolerances, especially siblings and classmates of such children.

After we were finished with this book, my first grader and I had a nice discussion about all of the kids in her classroom who have food allergies. My preschoolers both gained a better understanding of celiac disease and why I have to be so careful to avoid foods with gluten. They asked me multiple times if I ever get sad like Adam does about not being able to eat “gluten foods” anymore…

Although Adam is an 8 year old boy, I found myself able to relate to him throughout the book. Just today I walked into our break room at work and it looked as if a “gluten bomb” had gone off. The tables and countertops were piled with cupcakes, pretzels, Chex mixes, Christmas cookies, muffins, breads, etc. and there were about one million crumbs on the floor. I related to little Adam very well as I carefully heated up my gluten free lunch and ran out.

Please check out author Debbie Simpson’s website at www.dsimpsonbooks.com. The book can be ordered through amazon.com and there are reduced prices between now and New Year’s.

This is one of my favorite pages from the book. I hope that you enjoy it as much as I did.

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Celiac Disease in the December 20, 2012 New England Journal of Medicine

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I am grateful to one of my partners for leaving the December 20th issue of the New England Journal of Medicine in my mailbox with a yellow sticky note stating, “Jess, Thought this might interest you.” She was right, it did interest me, because it includes a review article written by my favorite celiac researcher, Dr. Fasano, from the Center for Celiac Research in Baltimore, MD (which, if you’re interested, will be moving to Boston, MA in 2013).

I love this article as, from the start, it highlights the fact that celiac disease can present in patients in “atypical” ways.

The article begins by describing a 22 year old female who fractures her wrist while playing volleyball. Outside of having fatigue and oral ulcers, she is otherwise healthy. An X-ray of her wrist shows that she has osteopenia (low bone density). Her blood tests show anemia, low iron, and low Vitamin D levels. She had no gastrointestinal symptoms but celiac disease is suspected.

I absolutely love this case presentation, as when I was in medical school (which wasn’t really that long ago) I learned that celiac disease was to be considered in patients with classic gastrointestinal symptoms, such as chronic abdominal pain, diarrhea, and weight loss. During my pediatrics residency (which was even more recently), I learned to suspect celiac disease in toddlers with signs of malnutrition, chronic diarrhea, and failure to thrive. Definitely not in young adults with a wrist fracture and low Vitamin D levels…..

I am so excited that hundreds and thousands of physicians, nurse practitioners, and physician assistants will read this article and learn and/or be reminded that patients with celiac disease can have symptoms NOT related to the GI tract. As Dr. Fasano eloquently states in the article, “The clinical features of celiac disease are protean and reflect its systemic nature.” How beautiful is that?

Dr. Fasano also reminds us of the consequences of untreated celiac disease, which include osteoporosis, spleen dysfunction, infertility and recurrent miscarriages, intestinal ulcers, and cancer. This is important for all doctors and patients to know.

He mentions that for many celiacs, despite adhering to a strict gluten free diet, minimal intestinal damage persists. I think that it is important for more to know this, as it highlights the need for additional research into celiac disease and the “leaky gut” phenomenon which it seems more and more of us are experiencing.

The last segment of the article is called “Areas of Uncertainty” and includes a discussion regarding the appropriate timing of introducing gluten to infants. He reports a 50% lower risk of celiac disease in infants who are receiving breast milk when gluten is introduced. I hope to write more about this in the upcoming months.

In conclusion, this article reaffirmed my admiration and gratefulness for Dr. Fasano, and I sincerely hope that its publication leads to increased diagnosis and treatment for the 97% of celiac patients in the U.S. who are walking around undiagnosed.

Can “Gluten-Free” Make you Skinny?

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This caption caught my attention as I was skimming through a recent issue of Redbook Magazine. I was skeptical to read the article at first, as the two other health features on the same page are titled “Another Reason to Have a Drink” and “Yes, Your Undies Can Be Bad for You.” However, I kept reading and am glad that I did.

I was happy to see this article in a mainstream women’s publication for the following reasons:

  • Gluten is defined, in plain English, as a protein found in wheat, barley, and rye. This is a good thing, as I wrote last month about the general public’s lack of understanding of what gluten actually is.
  • It alludes to the fact that gluten is often hidden in “non-obvious” foods, such as soups, salad dressings, and sausages.
  • The two medical reasons to be on a gluten-free diet, celiac disease and non-celiac gluten sensitivity, are discussed.
  • Although the gluten-free diet is referred to as “the world’s biggest diet trend,” there is not a laundry list of celebs who are gluten free. This is good, because if one more person mentions to me that they’ve heard that Lady Gaga is on a gluten-free diet, I think I am going to rip all of the hairs out of my head!

My criticisms of the article are as follows:

  • As usual, celiac disease is described as an autoimmune disease affecting only the gut, despite the fact that it is associated with so many other problems, including infertility, anemia, osteoporosis, thyroid disease, and fatigue.
  • There is no mention of the huge number of those with gluten sensitivity (up to 8% of the U.S. population).
  • The concept of the importance of cutting out both gluten-containing and gluten-free processed foods is totally ignored. This is a huge pet peeve of mine, as for many, being “gluten-free” means to continue to follow the carbohydrate-heavy, overly processed, standard American diet, i.e. substituting GF bagels for regular bagels and GF frozen dinners for regular frozen dinners.

It is very important for overall health and bodily healing that those of us who have Celiac Disease start on a predominantly whole foods diet. We need to focus on buying, preparing, and eating fresh vegetables, fruits, fish, nuts, lean meats, etc. (instead of GF cookies, muffins, waffles, etc.) While I am grateful that so many GF products exist, and I do indulge occasionally, I am thankful that my diagnosis has forced me to change the entire nutritional landscape of my family. I can assure you that I have not missed being able to eat Cheezits, Lucky Charms, Doritos, or Weight Watchers frozen entrees for a moment.

In summary, while this is not the best article out there about the gluten-free diet, it is an easy and quick read. And it does increase awareness that eating gluten-free is not a magic bullet for weight loss.

Next up, I need to keep reading to find out if my underwear is bad for me!

What Now? Wheat Sensitivity?

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I first came across the term “wheat sensitivity” in an editorial entitled, “Non-Celiac Wheat Sensitivity: Separating the Wheat from the Chat,” in the December 2012 issue of the American Journal of Gastroenterology. Thanks to a night of bad insomnia and a pretty interesting original research article by Carroccio, et al., in the same issue, I kept on reading…

Researchers out of Palermo, Sicily, state that “wheat sensitivity” is a both a new and real diagnosis. They reviewed the medical records of 267 patients diagnosed with both Irritable Bowel Syndrome (IBS) and “wheat sensitivity” during the 10-year period from 2001 thru 2011. All of their patients with wheat issues met the following criteria:

  1. Symptoms of irritable bowel syndrome
  2. Negative celiac antibody testing for TTG (tissue transglutaminase) and EMA (endomysial) antibodies
  3. Normal small intestinal biopsies (no villous blunting like that seen in celiac disease)
  4. Negative IgE (skin prick) testing for a wheat allergy
  5. Improvement in gastrointestinal symptoms on a wheat free diet by a double-blind placebo challenge

For the double-blind placebo wheat challenge the patients ate a regular diet, including 30 grams of wheat, daily for 2 to 4 weeks. 30 grams of wheat equals 1 slice of bread. They then had a 2-week elimination period, in which they stopped eating wheat, dairy, tomatoes, eggs, and chocolate, all of which are considered highly allergenic foods in Italy. After the elimination diet period, they were then given one of two pills everyday for 2 weeks. Pill “A” contained wheat and Pill “B” was a placebo sugar pill. Neither the research subjects, nor the researchers, knew which pill each subject was taking during the test period; this is why it is called a “double-blind” placebo study. There was a one week interim period in which subjects avoided all of the allergenic foods again, and then those who received pill “B” for the 1st two weeks were given “A” for the 2nd two week period and vice versa. The beauty of this type of crossover study is that each subject served as his or her own control.

If you’ve actually read this far, you may be wondering what the researchers found when they re-analyzed the 276 cases of wheat sensitivity….see below!

Compared to patients with Celiac Disease and IBS, those with “wheat sensitivity” have the following characteristics:

  • Increased likelihood of having atopic diseases (i.e. eczema, hay fever, environmental allergies)
  • Increased history of food allergies, especially during infancy
  • Elevated numbers of eosinophils (white blood associated with allergic reactions) in both the small and large intestine
  • Abnormally high anti-gliadin antibodies (a type of antibody against one of the gluten proteins) compared with those with IBS
  • Higher rates of anemia and weight loss than seen in those patients with non-wheat sensitive IBS

The researchers were able to break down the 276 wheat sensitive individuals into 2 groups. Those in Group 1 (n=70) shared many characteristics with Celiac patients, including having the genes that predispose to Celiac Disease (HLA DQ2 and/or DQ8). They believe that these wheat sensitive patients with IBS are at risk for the later development of celiac disease. Those in Group 2 (n=206) were found to have multiple food intolerances, including having antibodies to cow’s milk proteins, despite not having IgE mediated food allergies on skin prick testing. This group was referred to as the multiple food sensitivity group.

I believe that the researchers have done a great job demonstrating that there are many people with IBS who may benefit from being wheat free. I wish that I had known this when I was diagnosed with IBS at age 19. I was advised to increase my consumption of healthy whole grains, which I did; unfortunately, most of my increased grain consumption was in the form of whole wheat!

Perhaps in the future gastroenterologists will be able to use the presence/absence of eosinophils in the small and large intestines to help guide nutritional recommendations for patients with IBS. I am especially interested in seeing what the future holds for learning about links between wheat and cow’s milk protein sensitivities. I work with newborn babies and it seems like the numbers of babies with cow’s milk protein allergies are skyrocketing. I hope to write more about this soon.

The Effects of Gluten on the Brain and Nervous System

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Most of the articles about gluten and celiac disease I’ve came across in the media have focused on symptoms related to digestion, such as abdominal pain and bloating after eating gluten, and damage to the small intestine. The bulk of the gluten-related discussions on the celiac forums I’ve perused concern questions and answers regarding the diagnosis of celiac disease and tips for following the gluten free diet. There have been several papers published over the last few years about the neurologic effects of gluten exposure for those with celiac disease and non-celiac gluten sensitivity. I do not believe that they have gotten the attention that they deserve in the media or on the forums. I am especially interested in this area as over the last few months I have developed a peripheral neuropathy (nerve damage) related to having celiac disease.

Dr. Hadjivassiliou is one of the leading researchers on neurologic problems related to gluten exposure. Although I have no idea how to pronounce his name, I can tell you that he is on faculty in the Department of Neurology at Royal Hallamshire Hospital in Sheffield, United Kingdom. My favorite paper of Dr. Hadjivassiliou’s is a review article titled, “Gluten sensitivity: from gut to brain,” which was published in the Lancet, a major medical journal, in 2010. In this paper, gluten sensitivity refers to both celiac disease and non-celiac gluten sensitivity. Some of the key points of this paper include the following:

• Most patients with neurologic symptoms related to gluten do not have gastrointestinal symptoms.

• Ataxia (a problem with balance and coordination) and peripheral neuropathy (nerve damage) are the most common neurologic symptoms related to gluten. Up to 25% of celiac patients on a gluten free diet will develop a peripheral neuropathy at some point.

• Patients with neurologic symptoms often have celiac “autoantibodies” on blood testing, usually anti-gliadin (AGA) antibodies and/or tissue transglutaminase (TTG) antibodies. Many patients with these antibodies have non-celiac gluten sensitivity, meaning that they have high celiac antibody levels and symptoms, but no evidence of villous blunting (seen in celiac disease) on small bowel biopsy.

• The average age of onset of gluten ataxia is 53 years and for the gluten-related peripheral neuropathy is 55 years.

• Brain MRI findings can include cerebellar atrophy (loss of volume) and/or white matter lesions which may mimic those seen in multiple sclerosis.

• Neurologic symptoms often improve on a strict gluten free diet but may never resolve completely.

Gluten sensitivity has also been associated with seizures, dementia, and migraines. Obviously, further research on the effects of gluten on the brain and nervous system is needed. I’ve came across many people on the celiac forums who have psychiatric symptoms related to gluten exposure as well, although this has not been well-studied.

It seems especially frightening that many people who develop neurologic problems, like me, do so when they are already on the gluten free diet. This is a reminder that even small traces of gluten can cause serious damage to those of us who are gluten sensitive. If you have any family members or friends who develop ataxia or a peripheral neuropathy of an unknown cause, I urge you to recommend an evaluation for celiac disease and non-celiac gluten sensitivity.

For further reading on the this topic I would suggest the following links:

1. “Brain Abnormalities Common in Celiac Disease Patients,” by P. Harrison, published in Medscape Neurology News on September 10, 2012.

2. Dr. Hadjivassiliou’s Lancet Neurology article, “Gluten Sensitivity: From Gut to Brain,” published in March 2010.

3. Living Without Magazine article, “Gluten Attack: Ataxia,” found in the Feb/Mar 2011 issue.

My “Unlucky” Seven

Since going gluten free 3 years ago I have made my share of mistakes leading to “glutenings.” Most of them were in my first 6 months post-diagnosis. I am sharing my list in hopes that I may prevent others from getting sick like I did. I am also sharing so that friends and family members of Celiacs may understand why their Celiac loved one may seem to be “paranoid” from time to time.

1. Shampoo: I had a bad case of brassy highlights and bought a “blueing” shampoo to use a few times a week to neutralize the brassiness. Lo and behold, I began to feel ill, and one morning, as I read the ingredients while in the shower, I realized that my shampoo contained hydrolyzed wheat protein. There is a lot of controversy about whether or not gluten can be absorbed through the skin, but in this case, I believe that a little bit of shampoo was probably getting into my mouth while I was rinsing my hair. I stopped using the shampoo and my symptoms went away. Problem solved. My lesson learned was to always read the ingredients in hair products before buying and using them.

2. Playdough: Yes, this seems obvious, but I honestly thought that if I washed my hands carefully after playing with it, that I would be safe. I had figured that as long as I didn’t actually eat the Playdough that I would be fine. I was totally wrong. If you’re a Celiac with kids, you cannot touch Playdough with a ten foot pole! Trust me.

3. Eating gluten free pizza at a pizza parlor that makes regular pizza: Looking back, it seems obvious that this was a bad idea, but I had confirmed with the kitchen staff ahead of time that there were no gluten ingredients, that the gluten free pizza would be made on a separate surface, that the flour used to roll out my pizza was gluten free, etc. I learned a lesson in cross-contamination.

4. Hand sanitizer: I was traveling for a work conference, through lots of dirty airports, subways, etc. in the middle of winter, so I used a lot of hand sanitizer. Unfortunately, I soon discovered that it had wheat amino acids in it. Like the shampoo incident, I don’t believe that I absorbed the wheat protein through my skin, but I used the sanitizer many times before eating, and thus, probably ingested trace amounts that built up in my system and made me ill.

5. Soup at an airport café: As most celiacs know, soups are usually unsafe. I was at an Au Bon Pain at a major airport (yes, a very poor choice of café for a Celiac) and was pregnant and starving. The soup was labeled as a gluten free white bean soup and there were ingredients listed, which were all “safe.” But it wasn’t actually safe at all. I am pretty sure that the ladle must have been contaminated by being dipped in some of the other soups, and then put back into the gluten free one. That was the last bowl of soup that I ever ate….

6. Making Christmas cookies: This happened shortly after the Playdough incident, but I was still in denial that I could get sick just from touching/handling wheat flour. My kids and I made dozens and dozens of cut-out Christmas cookies using regular flour. I washed my hands numerous times, picked dough out from underneath my fingernails, and obviously didn’t eat any of the cookies, but still got majorly glutened. Hence, the gluten free cut-out cookie recipe that I shared with you last week!

7. Trusting a “no gluten ingredients” label: This was my most recent glutening. We do not live near a Trader Joe’s but will often stop at one when traveling. I have always avoided any of their products that have the disclaimer that they are made on “shared equipment” with wheat because I know I am sensitive and react to traces of gluten. We bought and prepared a basic spaghetti sauce that was marked as “no gluten ingredients” and did not have the shared equipment warning on it. We ate it with rice pasta for dinner and I got sick (no one else in my family did). I contacted Trader Joe’s via email and they did write back that the sauce was made on shared equipment. I have learned to never make any assumptions about processed foods.

As time has passed I have learned how careful I really need to be to prevent getting sick. I wish that I knew at diagnosis what I know now, that being “gluten free” is not as simple as it sounds and to not take risks with the diet. For those of us with Celiac Disease, eating gluten free is not trendy or a “fad,” it is the difference between sickness and health. As the actress Jennifer Esposito, a Celiac, recently stated, “This disease is no joke.” I wholeheartedly agree.

The Latest and Greatest on Non-Celiac Gluten Sensitivity

Yes, this is a real diagnosis, and it effects between 6 to 8% of our population, or approximately 18 million people. Many doctors and patients are unaware that it exists. Most of the papers on this topic have only been published in the last 2-3 years. The British Medical Journal published a case study and review of gluten sensitivity in their November 30, 2012 edition. It is the first case study I have come across in a major medical journal in which a patient self-diagnoses based on information which he found on the internet. The review article gives a good overview of our current understanding of this disorder.

Gluten sensitivity is a catchall term for a bodily reaction to eating gluten. It is not a food allergy, and the autoimmune process differs from celiac disease in that there is not destruction of the villi of the small intestine. People with gluten sensitivity may experience any of the following symptoms after eating gluten:

1. Gastrointestinal symptoms like diarrhea, abdominal pain, constipation, and/or “irritable bowel syndrome.”

2. Fatigue, depression, or difficulty concentrating. Feeling like one has a “foggy brain.”

3. Joint pains, stiffness, and/or leg numbness and tingling.

Anemia and osteoporosis have also been associated with gluten sensitivity. Some recent work has also shown neurologic problems, such as ataxia and peripheral neuropathy, in gluten-sensitive individuals.

Many of these symptoms overlap with celiac disease, but patients with gluten sensitivity do not meet the diagnostic criteria for celiac disease. Some may not have either of the two major celiac genes (HLA-DQ2 or DQ8), some may not have abnormal celiac antibodies, and most have normal, or almost normal, small bowel biopsies.

There are no tests for gluten sensitivity. Once celiac disease has been ruled out, if your symptoms go away when you stop eating gluten, and they return when you start eating gluten again, then you know that you are “sensitive” to it. You can diagnosis yourself.

We do not yet have information on the long-term effects of continuing to eat gluten if you have a gluten sensitivity. In this recent article, Dr. Fasano, one of the leaders in celiac disease research, states that he doesn’t believe that there are long term effects on health if you choose to do this.

I am a bit uncomfortable with this, as just a few decades ago it was believed that patients could “outgrow” celiac disease. The bottom line is that if a food makes you feel terrible, don’t eat it! You can definitely survive and live a full life without gluten-containing cupcakes, pizza, pancakes, etc. My fellow Celiacs and I are proof of this and we can help you on this journey.

For additional reading on this subject I would suggest Melinda Beck’s article, “Clues to Gluten Sensitivity,” published in the March 15, 2011, Wall Street Journal Health Journal.  There is also some helpful information about gluten sensitivity on the website www.celiaccenter.org.

Easy Cut-Out Gluten Free Christmas Cookies

I made the mistake of making regular Christmas cookies with my kids my first winter after diagnosis. Even though I did not eat the cookies, I experienced a major “glutening” episode from just working with the cookie dough. The next year I came across the following recipe for gluten free  holiday cookies, and I’ve used it ever since. My friends and family have not been able to detect a difference between these cookies and “regular” Christmas cookies. Plus it’s an easy recipe!

Ingredients:

1 cup of sugar

1 cup of butter, softened

2 egg yolks

1-1/2 teaspoons GF vanilla extract

1/4 teaspoon salt

2 1/4 cups GF flour blend (this is made by mixing 2 cups of white rice flour, 2/3 cups of potato starch, 1/3 cup of tapioca flour, and 1 teaspoon xanthan gum. I left out the xanthan gum the last time and it turned out fine too)

Directions:

1. Combine sugar and butter in a large bowl. Beat at medium speed, scraping the bowl often, until creamy. Add egg yolks and vanilla. Continue beating, scraping often, until well mixed. Reduce speed to low; add GF flour blend and salt. Beat until well mixed. Cover and refrigerate until firm (approximately 1 hour).

2. Heat oven to 350 degrees F. Roll out dough on surface lightly dusted with GF flour, one half at a time (keep other half in refrigerator), until 1/4 inch thick. Cut into shapes with cookie cutters. Place 1 inch apart on ungreased cookie sheets.

3. Bake for 8 to 12 minutes or until edges are lightly browned. Let stand 2 minutes and remove from cookie sheets. Makes approx. 36 cookies.

Enjoy!

 

Celiac: Is There a Trigger?

I’ve questioned this so many times. More than 40% of Americans have at least one of the celiac genes, HLA-DQ2 and/or HLA-DQ8, yet only 1% go on develop the full-blown disease. I recently read an article in the magazine Living Without called, “Celiac Disease, By Accident,” in which possible environmental triggers are discussed (see link). Many people report that they have developed celiac disease after major life stressors, including accidents, surgeries, and infections. I am pretty sure that my trigger was pregnancy.

Although my symptoms waxed and waned for 20+ years, it was shortly after I had my 3rd child that I got very sick. At first I thought that my symptoms of fatigue and continual diarrhea were due to being postpartum, stressed, and drinking too much coffee to stay awake. Then I began to feel like I was getting food poisoning all of the time, and I actually blamed my husband for a while because he was doing most of the cooking at this point (sorry, Tom!). I blamed my hair loss on the pregnancy but thought it was strange when it didn’t grow back in. When I was about 8 months postpartum I developed additional symptoms….arthritis in my hands, knees, and ankles, diffuse oral ulcers, daily low grade fevers, low back pain, and huge bruises all over my body. At this point in time I remember feeling like I was continually “hungover” and that my brain was in a fog, even though my baby was sleeping through the night and I was no longer working the crazy night shifts that I had during my medical training. I suspected that I had an autoimmune illness and actually thought that it was probably rheumatoid arthritis.

It was around this time that I had the most memorable gastrointestinal virus of my life! I subsisted on Gatorade for about 2.5 days and all of my autoimmune symptoms went away. The fatigue, joint pains, and mouth ulcers miraculously disappeared, and I felt better than I had in ages, despite having a nasty GI bug. Then, once I did start eating again, mostly toast, saltines, and chicken noodle soup, all of the symptoms came back with a vengeance, including the GI symptoms. I was diagnosed a few weeks later. Now, every time I get “glutened,” I experience immediate GI symptoms (abdominal pains, bloating, food poisoning symptoms) followed by about 5-7 days of arthritis, lethargy, oral ulcers, brain fog, headache, and overall feeling really crummy. This is why I am so cautious with what I eat. As the breadwinner for my family I cannot afford to be sick on a regular basis. If my reaction was just a little GI discomfort, or just lasted a day, I’d probably consider cheating on the diet from time to time…..

 

Gluten is _________ (Fill in the Blank)

I know that there have been a lot of news features and pieces on the internet about the gluten free diet, so today I asked 12 random people to answer the question, “What is gluten?” Here are the responses I received:

1. A type of fat in the foods we eat.

2. A type of sugar.

3. Something in foods that makes people sick.

4. Found in dairy products and causes a negative reaction.

5. A muscle in your butt.

6. A substance in white bread–not good for you!

7. A product used for making breads, such as wheat.

8. An item in food, like a starch.

9. A type of sugar.

10. A component in wheat that can cause an allergic reaction when consumed.

11. A filler used in wheat.

12. A food product.

Okay, so outside of #5, in which I think that the person must have meant the gluteus muscles which indeed are part of our butts, everyone knew that gluten is food-related….this is a good thing. However, as you can see, an understanding of gluten, beyond the concept of it being present in food, is lacking in most cases.

Gluten is a protein found in wheat, barley, and rye. In people with Celiac Disease, eating gluten triggers an immune reaction which leads to damage to the lining of the small intestine and resultant nutrient deficiencies. Untreated Celiac Disease also leads to anemia, osteoporosis, cancers of the digestive tract, infertility, and other autoimmune problems, such as thyroid disease. There is emerging evidence that approximately 6-8% of the population has a condition called non-celiac gluten sensitivity and would also have improved health abstaining from gluten. I hope to discuss this problem soon. For now, as long as gluten does not make you sick, enjoy it in moderation, and remember that in the future, you may too have to give up gluten for health issues. I probably would have enjoyed my last slice of pizza, my last donut, my last Girl Scout cookie, etc. much more had I known they were the last I would ever eat!

Why are 97% of American Celiacs Undiagnosed?

Based on prevalence studies, it is estimated that 3 million Americans have Celiac Disease. Of these 3 million people, 2.9+ million have no idea that they have a serious autoimmune disease. This is a huge problem….

A few explanations for the atrocious rates of diagnosis:

-Only 1/3 of Celiacs have “classic” symptoms, such as abdominal pain and chronic diarrhea. Many of the symptoms of celiac disease, such as reflux, fatigue, anemia, oral ulcers, joint pains, hair loss, osteoporosis, seizures, migraines, infertility, etc. can be seen in other conditions and lead to errors and delays in diagnosis. There are probably many people with diagnoses such as chronic fatigue syndrome or fibromyalgia who actually have celiac disease as their underlying problem.

-Doctors used to teach that children with celiac disease would “outgrow” the condition, so there are many adult celiacs who believe that they outgrew their problems with wheat.

-The screening blood tests for celiac disease can be inaccurate.

  • Although there is evidence that patients need to have tests for several celiac antibodies, many labs are not performing all of these.
  • The labs that must be performed are 1. IgA endomysial antibodies, 2. IgA and IgG tissue transglutaminase antibodies, 3. total IgA antibodies, and 4. deamidated gliadin peptides.
  • 3% of celiacs have selective IgA deficiency, so if total IgA antibodies are not tested, the rest of the test results will be meaningless (meaning that celiac antibody tests will be negative even if celiac disease is present).


-Genetic testing is not perfect either. Most labs will test for two genes, HLA-DQ2 and HLA-DQ8, which are found in 95% of people with celiac diease. If a patient doesn’t have these genes, even if they get horribly sick from eating gluten, they are often told that they do not have Celiac Disease and may not be offered further testing. However, in 3-5% of cases, patients with Celiac Disease on biopsy are negative for DQ2 or DQ8. So it is possible to be a Celiac, even if you don’t have the 2 most common genes.

-Many biopsies are done incorrectly. According to most experts, the “gold standard” of diagnosis is an endoscopy with biopsy. Celiac disease destruction of the small intestine can be very patchy, and if the wrong areas are biopsied, and/or not enough tissue samples are taken, it can be missed. It is essential that at least 4 samples are taken. It is essential that the duodenal bulb be biopsied in all cases. Despite the guidelines, only 35% of biopsies are done correctly. Many patients have classic symptoms of celiac disease, positive antibodies and/or gene tests, but have negative biopsies due to the wrong area being biopsied. They are labeled as being gluten intolerant and some are sadly told and advised to continue to eat gluten!

-Right now there is no cure. Celiac disease is treated with the gluten free diet, but there is not a pharmaceutical “magic bullet.” I think that when there is finally a pill to treat this disease, and the associated marketing campaign, that people will finally get diagnosed in large numbers.

The bottom line is that if you or a loved one has any symptoms of celiac, it is worth researching the idea of celiac disease and discussing with your doctor. A lot of people who I have met have been diagnosed after asking their doctors to test them. Also, the book “Celiac Disease: A Hidden Epidemic” by Peter Green, is definitely worth checking out if you have any suspicions or conerns that gluten is causing you harm.

Help, My Gut is Leaking! Celiac Disease and the “Leaky Gut”

Intestine_-_sized

I have heard and read tidbits about the concept of the “leaky gut” for a while, especially in regards to autism, so it was with great interest that I read Dr. Alessio Fasano’s article, “The Leaky Gut and Autoimmune Diseases,” which was published in 2012. Dr. Fasano is one of the leading U.S. researchers of Celiac Disease and is the head of the Center for Celiac Disease Research at the University of Maryland. He was the first to report that 1 in 133 Americans are Celiacs (the majority of which have no idea). He will likely be one of the first to find a cure for us. And, as I recently learned by watching a recent televised interview, he is also very easy on the eyes…

Our digestive tracts are one of the largest immune organs in our body. The tissues of our small and large intestines act as a barrier to keep out proteins and other molecules which may be perceived by our bodies as being “foreign.” According to Dr. Fasano, increased intestinal permeability (or loss of the barrier function of our intestines) may play a role in the development of autoimmune diseases. In autoimmune diseases, our immune systems produce antibodies against our own tissues, called “autoantibodies.” For example, in Hashimoto’s Disease, the first autoimmune disease which I was diagnosed with, autoantibodies have attacked and destroyed my thyroid gland. In Celiac Disease, when our bodies are confronted with “foreign” proteins in gluten, such as gliadin, autoantibodies are formed which lead to an attack that may cause injury to many organs, including the intestines.

We all have “tight junctions” between the cells in the lining of our intestines. These tight junctions prevent the movement of “foreign” proteins to the layer of the intestines where the immune response occurs. Dr. Fasano has found that individuals with autoimmune diseases have increased levels of a molecule called zonulin in their intestines. Zonulin plays a role in making the intestinal tight junctions looser, and thus, “leakier.” Leaks between the tight junctions allow “foreign” proteins, i.e. gliadin, to sneak into the deeper layers of the intestine and for autoantibodies to be created. Dr. Fasano provides evidence that zonulin levels are increased in Celiac Disease as well as other autoimmune diseases, such as Type I Diabetes, Asthma, Multiple Sclerosis, and Inflammatory Bowel Disease.

Trials of a zonulin blocker, called Larazotide acetate, are currently underway. Thus far, patients with Celiac Disease who take this medication have much “tighter” junctions when ingesting gluten. While this would not be a cure for celiac disease, it would be a great way to prevent people on the GF diet from getting accidentally “glutened.” And if you are a Celiac or have a loved one who is a Celiac, you can understand how truly horrendous it is to get “glutened.” I am curious to see if research will show that increased zonulin levels lead to other food intolerances and sensitivities in those of us with Celiac disease. Since going gluten free I have also developed autoimmune/inflammatory symptoms after consuming foods with soy proteins as well as sulfites. I guess that time will tell. Until then I am patiently waiting….

Cooking for a Gluten Free Guest

I used to taste EVERYTHING when I went to a party, wedding, etc. I have now been a gluten free guest more times than I can count.

Some tips/words of advice if you will be entertaining a Celiac or individual who is highly sensitive to gluten:

1. Don’t stress!

2. Keep the food plain and simple. Use simple ingredients like vegetables, meats, oil, salt and pepper. Many sauces, marinades, broths, and dressings have gluten as a thickener.

3. Don’t assume that a processed food is gluten free without careful label reading. I have had well-intentioned family and friends make chili and soups for me, not realizing that the brands that they purchased contained gluten.

4. Don’t get offended if your guest would like to read all of the labels of ingredients you used, just to make sure there are no hidden sources of gluten. Although the FDA mandates labeling for wheat, there are no mandates for other gluten-containing grains like barley and rye.

5. If you choose to make gluten free pasta, please buy a new, cheap plastic colander and wooden spoon to use, as your normal ones are probably contaminated with gluten. You can usually find these at a dollar store.

6. If cooking with butter or margarine, open a new stick or tub, so that there is no contamination with breadcrumbs.

7. Do not place GF items directly on a rack in a toaster oven, put them on aluminum foil before toasting.

8. Talk to your guest ahead of time, if possible. Many celiacs have additional food intolerances, i.e. soy or dairy, which are helpful to know about when menu planning.

9. Ask your guest if he/she is interested in bringing a GF dish to eat and share.

10. If in doubt, order out. There are several chains in the U.S. who do a great job with gluten free entrees and prepare foods in separate areas of their kitchens to avoid gluten contamination. P.F. Chang’s and Maggiano’s both come to mind as possibilities.

Meal ideas:

Appetizers: Cut up vegetables and fruit. Slices of cheese. Nut thins or other rice based GF crackers. Shrimp. GF corn chips and salsa. Mozzarella and tomatoes with basil and balsamic vinegar.

Salads: Use any salad green and chopped veggies. No croutons. Keep dressings and toppings on the side. Have oil and vinegar available. Keep in mind that many nuts are processed on equipment shared with wheat and have the potential for gluten contamination.

Bread: If you absolutely must have bread, heat up an Against the Grain GF baguette or two and slice and serve. Can serve with GF bruschetta or dipping oils.

Main dishes: Basic meats work well, such as a roast chicken, steak, or pork tenderloin. Use oil, salt, and pepper instead of a marinade (unless you are sure it is GF). Lasgana made with brown rice noodles (Tinkyada or Trader Joe’s). Enchiladas made with GF corn tortillas (Mission brand). Baked fish seasoned with lemon and fresh herbs. Risotto. Chili made with a GF mix. Eggplant parmesan made with gluten free breadcrumbs (like Glutino). Homemade meatballs made with gluten free breadcrumbs. Most homemade Indian dishes are GF as well (obviously skip the Naan).

Side dishes: Salads. Polenta. Baked potatoes. Sweet potato fries. Butternut squash puree. Roasted vegetables. Asparagus. Homemade mashed potatoes. Simple rice dishes (avoid boxed, seasoned rice as most mixes contains gluten). GF corn bread. Thanksgiving is actually a pretty easy meal to do gluten free.

Desserts: Fruit. Ice Cream or Gelato (make sure labeled GF). GF brownies. Kids often like Fruity Pebbles squares.

Beverages: Most beers contains gluten. Wine and ciders are safe. If beer is a must, go for Redbridge, New Grist, New Planet, or Bard’s, which are all GF.

Just for Fun

I came across this picture on “Gluten Dude’s” website and it made me laugh, even though Celiac shouldn’t be spelled with an apostrophe. I hope that the little girl’s sandwich is not on Ener-G bread!

Happy Thanksgiving!

Save the Date (September 22-25, 2013, Chicago, IL)

I am thrilled to learn that the 15th International Celiac Disease Symposium will be taking place in Chicago from September 22-25, 2013. The last symposium was held in Oslo, Norway in 2011. This meeting will bring together celiac researchers, physicians, nurses, dietitians, patients, etc. from around the world. The latest research on celiac disease and non-celiac gluten sensitivity will be presented. There will be 2 separate forums, one for physicians and scientists, and a clinical forum for patients, clinicians, dieticians, etc.

I plan on attending for sure, as I live within driving distance to Chicago, it’s a lovely time of year to visit the city, and I am eager to learn from this conference. I will likely sign up for the “clinical” track, although there is a part of me which would love to participate in the scientific forum as well (each person can only register for the scientific or the clinical forum).  Luckily, I have plenty of time to make a decision.

Please check out the Symposium’s website for full details and registration. I hope to see you/meet you there and/or share information with you after I attend.