Tag Archives: gluten free diet

_DSC2515-Edit

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.

10246768_10203303714101124_6397405056185055417_n

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.

 

The CeliAction Study

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

celiaction

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

You may qualify for the CeliAction Study if you:

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

If you participate in the CeliAction Study, you:

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

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

“Gluten intolerance” can actually be subclinical celiac disease

glutenintolerant

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

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

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

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

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

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

Reference:

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

ID-10094074

Women with celiac disease, we are not alone…

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

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

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

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

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

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

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

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

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

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

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

Reference:

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

ID-10076296

Celiac Disease and Endometriosis

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

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

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

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

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

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

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

References:

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

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

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

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

Coeliac_path

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.

ID-100170578 (1)

“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.

CFS

Chronic Fatigue Syndrome and Celiac Disease

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

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

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

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

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

References

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

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

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

ID-10087293

“Potential” Celiac Disease

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

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

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

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

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

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

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

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

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

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

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

Reference:

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

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

ID-10069612

Let’s Talk about Celiac Disease and Infertility

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

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

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

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

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

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

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

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

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

Other references which may be of interest:

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

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

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

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

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

ID-10087749

The Gluten Contamination Elimination Diet

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

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

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

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

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

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

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

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

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

ID-10068290

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!

IMG_3051

Yes, it is “Safe” to Raise Non Celiac Kids Gluten Free

I’ve realized that I have not written for almost a week and I think I am okay with this. When I started this blog two months ago, I anticipated being able to post about once a week, so I think I am on track. Between working full-time, running, and trying to squeeze in some sleep, the main reason  that I have not had time is that I have four small children. I am trying my best to cherish this phase of our family life, as I know that someday I will have four teenagers at once!

None of my kids have Celiac Disease, but I consider them all to be at high risk for its development. Although I was diagnosed when I was 33, I have probably had Celiac Disease since early childhood. My mother also has it, and interestingly enough, was diagnosed after I was. Through conversations with aunts and uncles, it seems there is some “gluten sensitivity” in my deceased dad’s family. Although my husband, Tom, does not have Celiac, we do know that he is HLA-DQ2 positive, as he was tested by his GI doctor.  He has both an aunt and cousin with Celiac Disease as well. If none of my children go on to develop Celiac Disease, I will be truly amazed!

We started off my Celiac journey with a shared kitchen. I read up on this as much as I could after diagnosis, and I had my own “gluten free” cabinet, pasta strainer and pasta pot, cooking utensils, baking dish, etc. I also kept separate GF butter, peanut butter, and other condiments to avoid cross contamination.  I always put my items on a piece of aluminum foil when toasting because I was never able to find the “toaster bags” which people would discuss on the Internet forums. I thought that I was doing everything right and although our GF/non GF set-up did work for a while, I kept on getting sick. In 2012 I developed a peripheral neuropathy, which is persistent numbness and tingling from nerve inflammation, and was evaluated for multiple sclerosis. My neuropathy ended up being Celiac Disease related, as a result of continued exposure to traces of gluten. We made our whole home gluten free in 2012 and I have had minimal problems since then.  My exposure to tiny hands and mouths with gluten crumbs was much more damaging than I could ever have imagined when I was diagnosed in 2010.

Through starting this blog I have been able to interact with a lot of moms with Celiac Disease and/or raising kids with Celiac Disease. Many of us have decided to raise all of our kids gluten free, however, this seems to be controversial.  I have learned that many people are being advised by their doctors that it is not “safe” to raise their non Celiac children gluten free, because they are being told that by doing so that they are depriving their kids of essential vitamins and nutrients.  I have researched this and have not found any evidence that this is the case, as long as gluten free kids are given a wide variety of non-processed, nutrient-rich foods.

Our youngest is now 10 months old and, freakishly enough, has 7 teeth, so she is eating table foods at dinner. We eat a lot of vegetables, fruits, meats, eggs, beans, and fish. Our “starches” consist of potatoes, rice and risotto, squash, and sweet potatoes.  Once a week or so we will make a GF pizza of some sort. Lately we have been making a cauliflower pizza crust which I adapted from a recipe I found on Pinterest (I will post it on the “Recipes” page of this blog soon). We occasionally make tacos, enchiladas and other Mexican foods, pasta or lasagna, and Indian dishes, usually a chicken curry of some sort.  For snacks our kids eat fresh fruit, applesauce, popcorn, dried fruits and nuts, yogurt, string cheese, GF crackers and rice cakes.  We always have a few “treats” in our home, usually Annie’s GF Bunny crackers, ice cream, and a tortilla chip of some sort.  I bake a lot of treats for the kids as well. We’ve made delicious chocolate chunk cookies using almond flour 2 or 3 times in the past week (see link). We’ve said goodbye to a lot of convenience foods like chicken nuggets and frozen macaroni and cheese.

I do not see any evidence that my children are nutritionally deprived. They are growing and thriving, are not anemic, and interestingly enough, my two oldest have grown quite a bit since going off of gluten last year.  I give all of them a calcium and vitamin D supplement once a day, but I have done this for years. We live in the midwest, where vitamin D deficiency is rampant in both kids and adults, and a deficiency is associated with the development of autoimmune diseases.  I have not given them any other vitamins or supplements. I am pretty certain that they are getting enough protein, fat, vitamins, minerals and calories for proper growth and development through their diets.

I am not trying to say that what I am doing for my family is right or best for all families. I am sharing my story in hopes that it may help others to make the decision whether or not to make their entire household gluten free. Looking back, I wish that I would have made the transition much earlier in my journey, as it would likely have prevented me from developing neurologic complications from Celiac Disease. Thank you for reading!

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

 

 

 

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.

 

Carrageenan and Celiac Disease

red seaweed

Carrageenan is a food additive that is extracted from red seaweed.  It is used as a thickener and emulsifier and is found in dairy products, processed meat, soymilk, toothpaste, and ready to feed infant formulas. I first came across it on an ingredient list early in on my gluten free (and food label reading) life. Once I learned that it is gluten free and “natural,” I assumed it was safe for me to eat as a celiac. However, a few months ago I began developing GI upset every time I ingested it, and I cut it totally out of my diet. Based on what I have now learned, I am glad that carrageenan is out of my life and kitchen.

First of all, the definitive answer to the question, “Is carrageenan safe for celiacs?” is never going to be known in our lifetimes.  No one is going to pay for a randomized controlled trial in which one group of celiacs are fed carrageenan and one group are fed a placebo, and outcomes of the two groups are measured. It’s just not going to happen.

Carrageenan has antiviral properties and stimulates the immune system.  On a quick search through the Pubmed.gov database, carrageenan aids in killing viruses and is being researched as an additive in treatments for HIV, enterovirus, and human papilloma virus.

When rats are given carageenan, they develop inflammation and arthritis-type symptoms.  Many studies of anti-inflammatory medications involve giving the test medications to Carrageenan exposed, and hence, inflamed rats and monitoring for improvement and side effects.

Research has shown that animals given carrageenan in high doses develop polyps, ulcers, tumors, and inflammation of the intestine. Most of the published research on the effects of carrageenan on human cells and tissues is by Dr. J. Tobacman from the University of Illinois, Chicago.  In the past year she has shown that carrageenan leads to enzyme changes and an inflammatory response in human intestinal and mammary cells as well. See link for more information.

There are two types of carrageenan. The first is degraded, or low molecular weight, and is the type which has been shown to cause inflammation in animals and human cells. It is not used in food products and products for human consumption.  The second type is undegraded, or high molecular weight, and is the type which is added to foods and beauty products.  There is an widespread belief that undegraded carrageenan is safe, and according to the Stonyfield farms website:

The scientific literature overwhelmingly concludes that undegraded carrageenan is safe to eat.  Based on this independent review of the literature, along with the Board’s recommendation to continue to allow it in organic production, we feel that carrageenan continues to be a safe ingredient to use.

What we don’t have any information about is whether or not our bodies convert some of the undegraded (“safe”) form to degraded (“unsafe”) form after we have eaten it. There are a few small studies from the 1970s which show that this chemical change occurs in the intestinal tract of rats and guinea pigs.

The European Union has banned the use of carrageenan in infant formulas due to concerns about safety in this population.  I just checked the website of the major U.S. formula makers and it is still present in most ready-to-feed formulas commercially available in the U.S.

Dr. Weil, M.D., one of the nation’s leaders in integrative health, spoke out against carrageenan in October 2012 (see link), stating, “I recommend avoiding regular consumption of foods containing carrageenan. This is especially important advice for persons with inflammatory bowel disease.”

As a Celiac I’ve made my decision and there’s no turning back now….

Can “Gluten-Free” Make you Skinny?

belly2-2354_150

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!