Category Archives: Uncategorized

The CeliAction Study is Continuing to Recruit Subjects with Celiac Disease

I’ve recently been notified that the CeliAction Study is continuing to recruit subjects with celiac disease. ALV003 (an enzyme) is being investigated 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. I just returned to “real life” after running the NYC marathon for Team Gluten-Free and I look forward to sharing my experience with all of you soon in a separate post. Thank you for reading!  -Jess

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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 www.CeliActionStudy.com or call 1-855-3333-ACT.

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Celiac Disease and Muscular Pain, Weakness and Atrophy by Irish Heart

Hi all! It’s a super busy week for me as I wrap up work and prepare to travel to New York to represent all of us with celiac disease in the NYC marathon on Sunday November 2nd as a member of the Celiac Disease Foundation’s Team Gluten-Free.  I will be back to posting soon, but in the meantime wanted to re-post this excellent article about celiac disease and muscular issues that was written by my dear friend Irish Heart (shared with her permission). Like Irish Heart, I have suffered from neurological and musculoskeletal symptoms from my celiac diagnosis, which have, fortunately, improved with time. Hope you’re all doing well!  -Jess

My musculoskeletal and neurological systems took the biggest hit while I was suffering from years of malabsorption prior to my diagnosis. I was constantly in pain and losing the ability to tolerate exercise. Nearly 4 years after diagnosis, I am still rehabbing my muscles. We’ve spent a small fortune on physical therapy, occupational therapy, massage therapy and pelvic floor therapy programs. Without this intervention, I doubt I’d be walking now or have the full use of my arms. You can’t imagine what I have been through to get to this point, but suffice to say, I no longer have curled shoulders, rigid muscles, an inability to sit, stand or lie down for long periods, burning neuropathic pain from entrapped nerves and my muscles don’t feel like “wood” (as they were described in a report back in 2010). I do still have some mobility issues and I do still have painful knots called trigger points in some muscles, but I am not the head to toe giant knot I once was. Trigger points are not to be confused with tender points as used in the FMS “diagnosis”.

The pain level has reduced from a “just kill me now 10″ to an “I don’t feel like crying every day 4″. And I’ll take it!

If you are like me, you’ve done all you can to get well and resolve the various extra-intestinal symptoms and conditions you developed because you were so ill and suffering from malabsorption for so long.

If you still have sore muscles, please don’t accept the all-purpose “fibromyalgia” syndrome that doctors slap on anyone with muscle pain and soreness. It’s much like “IBS”…a collection of symptoms, not a diagnosis and the treatment plan is abysmal and often useless.

Some suggestions, based on 3 years of reading articles:

(1) have blood tests done to rule other conditions that may co-exist with CD such as lupus, MS, myopathy and hypertonia.
(2) make sure your thyroid is functioning properly
(3) take a good B-Complex (Country Life has certified GF vitamins. for example)
And get your muscle-support from foods!

Calcium. Milk products or fortified non-dairy such as soy, rice or almond, canned salmon and sardines with bones, bok choy, brown rice, English walnuts, almonds, green leafy vegetables such as broccoli, collards, turnip greens, beet greens and dandelion.

Potassium. Fruits and vegetables are a richer source than animal foods. Try bananas, beans, pumpkin, chick peas, romaine lettuce and endive. Good animal sources are milk products, meat, poultry, and fish.

Iron. This mineral is well absorbed from kidney, liver, oyster, seafood, meat, fish, poultry, and egg yolk. Plant sources are not as easily absorbed. Try brown rice, peas, lentils and beans.

Magnesium. Rich plant sources are soybeans, buckwheat, black-eyed peas, almonds, cashews, lima beans, Brazil nuts, pecans, whole grain rice, peanuts, walnuts and bananas. Rich animal sources are halibut, them haddock with less in other fish, shellfish and chicken.

Phosphorus. Milk products and liver. Rich plant sources are peanuts and tree nuts like almond, cashew and walnut. Good amounts are in chickpeas, lentils, lima beans, cocoa and chocolate.

Selenium. Brazil nuts, pork kidneys, lamb kidneys, beef kidneys, pacific oysters, turkey giblets, snapper, lamb liver, halibut, chicken giblets, mussels – blue, chicken liver, tuna – canned, salmon, scallops, bacon, liverwurst, pork liver, crimini mushrooms – raw, sunflower seeds, shitake mushrooms, oyster mushrooms, corn bran, rice bran, corn flour, white rice flour.

Protein. Meat, fish, shellfish, milk and eggs are rich in protein. Best plant sources are tree nuts, soybeans, peanuts, legumes and seeds.

Vitamin B1. Pork, whole or 2% milk, salmon, halibut, chicken, beef and egg. Plants are pecans, sunflower seeds, filberts, walnuts, chestnuts, beans, peanuts, avocado, peas and brown rice.

Vitamin B3. Liver then oyster, milk, clams, pork, beef, chicken, egg, and trout. The richest plant source is almond. Good plants are brewer’s yeast, black-eyed peas, spinach, peanuts, chestnuts, avocado, asparagus, broccoli, soybeans, beans, brown rice, and orange juice.

Zinc. Highest animal source is the oyster. Rich animal sources include canned salmon, beef, liver, turkey neck, shellfish, poultry and fish. Good plants are soybeans, pumpkin seeds, dry peas and beans, brown rice and sunflower seeds.

Further reading here: Health in Depth: Muscle Weakness in Celiac Disease.” By C. Libonati. Published on www.glutenfreeworks.com on July 3, 2010.

And finally, please don’t settle for living with pain. Find a good therapist to help you slowly recondition your muscles and start you on a gentle stretching and/or weight training program. Gentle yoga is especially good as is Tai Chi. Best wishes as you continue your healing!

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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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#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.

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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.

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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

 

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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!

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

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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 www.CeliActionStudy.com or call 1-855-3333-ACT.

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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 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

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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.

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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.”

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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.

“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.

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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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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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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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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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.

InfantRisk Center

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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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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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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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!

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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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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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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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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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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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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!

What your doctor may possibly be reading about Celiac Disease

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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

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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

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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.

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….

 

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.

brown (celiac)

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!

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.