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Jane Anderson

Study: Gluten Ingestion Symptoms Frequent Despite Gluten-Free Diet

By November 8, 2012

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People with celiac disease who continue to experience symptoms despite adhering to a gluten-free diet suffer from a wide range of gastrointestinal and non-gastrointestinal maladies, including abdominal pain, rashes, headaches and brain fog, according to a study presented at the recent American College of Gastroenterology meeting.


The study, conducted by Alvine Pharmaceuticals, Inc., found that 90% of those studied experienced at least one day of symptoms in a seven-day period, and 44% reported between five and 10 individual symptoms during that same seven-day period.

"The results of this study show that the majority of pateints with celiac disease continue to experience disease-related symptoms ranging from mild to severe even while attempting to adhere to a gluten-free diet," said Dr. Daniel Adelman, Alvine's senior vice president and chief medical officer, in a statement.

Alvine is racing several other companies to become the first pharmaceutical manufacturer with a drug approved to treat celiac disease (for more information, check out the article Celiac Disease Drugs in Development). Its drug, ALV003, wouldn't allow celiac sufferers to eat gluten again; instead, it would help improve symptoms and damage in the case of inadvertent gluten cross-contamination -- the type experienced by the subjects of this study.

The study enrolled 202 people who had biopsy-proven celiac disease and who reported having experienced symptoms in the last three months, despite following a gluten-free diet. It asked them to document their symptoms over a seven-day period. The study found that:

  • 63% of subjects said they experienced flatulence
  • 62% reported abdominal pain
  • 56% said they had fatigue
  • 54% experienced bloating
  • 46% had diarrhea
  • 42% reported constipation
  • 35% experienced nausea
  • 35% reported brain fog, or difficulty thinking
  • 31% said they had headaches, and
  • 17% experienced skin rashes

More than three-quarters of people said their symptoms were at least moderate to "very severe" in intensity, and that those symptoms affected their perceived quality of life.

Many of us continue to experience symptoms while following the gluten-free diet -- questions from readers on how to cope arrive in my inbox frequently. In most cases, I believe the problem is continued gluten ingestion at very low levels -- the levels found in most "gluten-free"-labeled foods. Here's some more information:

My best advice: if you continue to experience symptoms, cut back on or eliminate processed foods, especially 'gluten-free'-labeled grain-based foods, which are the top culprits when it comes to gluten cross-contamination.

Keep up with the latest in the celiac disease/gluten sensitivity world -- sign up for my newsletter, connect with me on Facebook or follow me on Twitter - @AboutCeliac.

Photo © Getty Images/B2M Productions

November 8, 2012 at 11:08 pm
(1) Slee11311 says:

…or, just give up all grains. I’m not sure why this hasn’t been more widely prescribed. Given that there are more and more studies of other grains that have a gluten like response in celiacs (like recently finding out that of the 18 varieties of quinoa, 4 of them consistently gave celiacs symptoms!). I did it and it worked. And it’s a hell of a lot easier to be Paleo than Gluten free (don’t even consider processed foods anymore!)

November 9, 2012 at 12:17 am
(2) Stephanie says:

That was certainly the case with me. I continued to have symptoms while eating “gluten free” processed foods. When I stopped eating them, my symptoms decreased substantially. Further measures to avoid cross contamination have eliminated my symptoms completely.

November 9, 2012 at 1:21 am
(3) Doug says:

I understand. My combinations of problems may be my own and no one elses, however, I do feel we (the ones that understand), have a common thread that runs through us, no pun intended. It seems that the food industry has the answer to our needs. Making gluten free this and that. And by my experience, It is not free. For me, it was obvious the products of this nature did not agree with my new body. A friend commented to me. concerned that I was cutting out too much from my diet. Nothing left to eat, she would say. Maybe in that persons’ view, in comparing it to her modern diet, and she still thinks that I am crazy. My point is: for me, those special products, tailored for people just like me, do not always agree with my bodily functions. So, with that said, my diet now, after 12 years of pain and learning, is void of most processed gluten free products, Maybe a VANN waffle three times a week. Other than that, every week, I make veg. soup, and beans (black and Pinto) with bell peppers, and an onion. Brown rice, and raw food. Salmon, and some tuna at times, among other things. I have learned to live, and I don’t remember the other food. And I don’t crave it. Hurts too bad. Find what makes you feel good after eating it. And let that be your rule. Fitting in, eating normal food, just to be a part of the group, well, that is a path of misery. Just my opinion, Take care.

November 9, 2012 at 4:13 am
(4) JOANIJ says:

I am doing better since going on the Paleo diet under my DR;s care. NO GRAINS at all, except Quinoa and Chia. He has increased my gelatin intake to help hair, bones and nails. Vitamin A has helped increase my retention of liquid — no more cracked lips or knuckles.

November 9, 2012 at 6:52 am
(5) Michael says:

As Doug says, “My combination of problems may be my own and no one else’s.” We all must do whatever testing is necessary to eliminate other non-gluten problem foods. Then we must rotate the foods we eat. I need to work toward that. But not only am I paleo, but also needing to avoid nightshades and cruciferous and legumes, etc. Having gone on the SCD, I just am underweight and continuing to lose.

As Slee says, “just give up all grains. Iím not sure why this hasnít been more widely prescribed.” That’s because you practically have to find a doctor who has the problem and has been GF for 20 years for them to even consider it.

As Stephanie says, “Further measures to avoid cross contamination…” What very few realize is that for some of us, that means avoiding breathing the air downwind of restaurants and bakeries, or cohabitating with gluten consumers.

Dr. Rodney Ford says we need to change the language to “gluten zero”. 20 ppm is too much. That’s just so food companies can continue business as usual. He also says that gluten is bad for everyone, and almost any symptom in anyone is likely to be caused by gluten. And if someone is celiac, all who live with that person have to be gluten zero for the sake of the celiac. Dr. Ford, his wife and children are all gluten zero. He has written more books on the subject of gluten than anyone, and was the first to say that some non-celiacs need to be gluten zero as well, 23 years ago. His colleagues still don’t accept this. in my opinion, we are all brought up to be brain washed, ignorant and addicted. There is no other reason for his colleagues to reject Dr. Ford’s successful treatment of non-celiac children with a gluten zero diet.

November 9, 2012 at 6:30 pm
(6) Barb says:

I can’t tolerate “gluten-free” items at all. I am now grain-free, dairy-free and nightshade-free and finally at a point where I can heal and feel good again. No help from my GI doc on the diet stuff. A food diary has helped me more than any advice from any physician!!

November 10, 2012 at 8:06 pm
(7) Sandy B says:

I too have learned to stay away from most grains, except brown rice. Some corn meal is OK, if it has been processed in a place that does not process other grains like wheat, barley, or rye, and that is hard to find. Even then, I still have symptoms with corn meal ingestion. I’m beginning to suspect that GMOs may be part of the problem. A very large percentage of corn, soy, and other grains are GMOs in the U.S. Many foreign countries are now rejecting GMOs.
Many people think that we’re “missing” out on the fun of being able to eat anything the grocery store sells as “food”. When you become symptom free, believe me, you don’t miss any of that stuff since it’s now in the category of poisonous/toxic and painful.
Actually, for most of history, humans have been on a restricted diet because their foods came from mostly local sources, not from numerous countries around the world as is now the case in our super markets. I’m also beginning to think that a “restricted diet” made up of locally produced and heirloom foods is the healthier way to go. It is what our bodies have become used to over the centuries. The real current problem is way too much variety of highly processed foods that are loaded with preservatives, chemicals, GMOs, and who know what else that our bodies are not designed to deal with. JMHO>

November 14, 2012 at 2:24 pm
(8) miss beckwith says:

A study came out that found that when celiacs eat soy, it can cause villous destruction. watch out because soy isn’t really the health food we once thought it was.

November 20, 2012 at 12:47 pm
(9) NoGlutenEver says:

Many non-celiacs and non-gluten-sensitives report big health improvements on the Paleo diet. Interesting to think about.

May 22, 2013 at 11:47 am
(10) Margaret says:

I know I am extremely late contributing to this post.. still, I hope someone will see it & respond. Given I see respondents who are diagnosed Celiacs and some involved/experiences with the Paleo way of eating I figured it would be a good group to ask; I am a Celiac (gluten free since being diagnosed in 2002) & had a ‘normal’ follow up biopsy later yet have had ongoing- seemingly worsening- GI disturbances daily. I’m ALWAYS bloated, virtually always tired (despite plenty of hrs in bed), deal with constipation often & occasional nausea. Despite many varied approaches haven’t been able to figure out what foods are 2 blame (besides dairy & beans, those leave me with worsened bloat- nausea with dairy- & unpleasant gas).
Long story short I have just read the Whole30 book and am excitedly beginning the program. For “those with autoimmune disorders,” who may, as they claim, be more prone to inflammation than others, it recommends avoiding several additional things for as much as 90 days. 2 are eggs and nightshades. Does anyone on here know whether or not Celiac Disease counts, as it’s technically an autoimmune disorder? I figure they may be thinking of things like Lupus or whatnot. I haven’t had eggs in at least 60 days but think they give me gas. Now unable to have my usual buckwheat/ quinoa I really have no idea what else I’d have besides eggs..& I JUST planted several tomato plants in my garden.. Basically, given I’ve never actually felt “great” (except for abt 5 days after i initially went GF after my diagnosis, oddly; shortly thereafter bloating returned despite strict GF adherence, gotten worse since then.. I can’t explain those few days of bliss but they were great) I really don’t know if eggs or nightshades are a true ‘problem’ for me and am reluctant to omit them as well given I’m already having to change quite a bit of my diet (having relied heavily on quinoa (LOVE quinoa) and buckwheat ) Any thoughts would be much appreciated; thank you!

August 13, 2013 at 2:37 pm
(11) Deb says:

I agree with Margaret. I was diagnosed with Celiac disease two years ago and have been on a Gluten Free Diet since then. I feel like my symptoms are getting worse instead of better. There was a small window of time after being diagnosed that they were better and I felt and looked great. Now, as Margaret said, I am bloated all the time and my belly is huge. I also deal with being tired most of the time, sometimes unable to sleep at night, weight gain, constipation, and nausea. I am very careful about what I eat and make most of my food myself. If anyone has any understanding of what causes the bloating and constipation while on a gluten free diet, I would appreciate the information. Thank you.

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