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  • Jefferson Adams

    Non-celiac Gluten Sensitivity: Fact or Fiction?

    Jefferson Adams
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    Reviewed and edited by a celiac disease expert.

    Celiac.com 02/28/2013 - An entry in the Patient Journey section of the British Medical Journal highlights the confusion around non-celiac gluten sensitivity (doi:10.1136/bmj.e7982).

    Photo: CC--PerterJr1961In the entry, a person without celiac disease describes how, after years of unexplained health problems, a chance conversation on an internet forum led him to try a gluten-exclusion diet.



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    He claims he saw dramatic results: “Within a week of excluding gluten and lactose from my diet, all my symptoms had dramatically improved in just the same way as when I previously starved myself.”

    After accidentally eating gluten the symptoms returned “within hours.” Such dramatic relief of symptoms led him to seek out what he calls “proper diagnosis.”

    This, in turn, led him to Kamran Rostami, whose account of the condition supplements the patient’s story. Rostami says that the patient, like others had "negative immunoallergy tests to wheat and negative coeliac serology; normal endoscopy and biopsy; symptoms that can overlap with coeliac disease, irritable bowel syndrome, and wheat allergy.” Symptoms resolved on a gluten-free diet. Since there are no biomarkers, gluten sensitivity is the ultimate diagnosis of exclusion.

    However, these facts, along with the lack of a disease mechanism have left some clinicians unconvinced.

    Some, like Luca Elli are calling for aspects of gluten sensitivity clarified before doctors start “treating” people for this new “disease” (doi:10.1136/bmj.e7360).

    Elli asks some logical questions, such as "Is gluten sensitivity different from irritable bowel syndrome, or is it simply a variant that benefits from a common therapeutic approach?"

    To get an answer, many clinicians are looking to published literature (doi:10.1136/bmj.e7907). For example, a few randomized trials suggest that non-celiac gluten-sensitivity is a real condition, affecting 6% of nearly 6000 people tested in a Maryland clinic.

    A multi-center trial is currently recruiting people without celiac disease, but with gluten sensitivity for a challenge with gluten or placebo.

    Meanwhile, clinicians are advising that patients who have had celiac disease excluded through blood tests and duodenal biopsy be told that they may suffer from a newly recognized clinical condition which is not yet fully understood.

    In related news, a letter published this week by David Unsworth and colleagues describes an “explosion of requests” for serological testing since 2007, particularly from primary care physicians (doi:10.1136/bmj.e8120). They note that NICE guidance in 2009 has done little to reduce the requests.

    They also point out that, as the number of people being tested has risen, the rates of confirmed celiac disease has fallen to just over 1%, which is no better than rates achieved by random screening.

    They call for more targeted testing, limited to groups in whom detection rates are highest: children with failure to thrive, family history, or type 1 diabetes, and adults attending diabetes and gastroenterology clinics.

    However, such advice would seem to ignore cases like those described in the Patient Journey, cases where people with negative blood tests and biopsies benefit from a gluten-free diet.

    What do you think? Is non-celiac gluten-sensitivity a real condition? Do you or anyone you know come up negative on blood tests and biopsies, but suffer from gluten-sensitivity? How should doctors proceed? Share your comments below.

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    I think we should stop calling it a disease and start calling it what it is. America is the biggest producer of wheat which makes it both understandable and affordable for wheat and gluten to be in food, but human bodies aren't meant to eat mass quantities of anything and wheat isn't all that great for you in the first place. I was fortunate enough to finally test positive and get a diagnosis. At first I was angry and I thought how bad is this going to suck, but I got so sick and for so long I thought why not. Its been a year and not only do I have more money in my pocket but my whole life is healthier and just by eating naturally. I think eating so much wheat and gluten and junk growing up just finally took its toll on my body. Maybe I can't tolerate it. Maybe others can eat it sometimes or they can't at other times or whatever. But when are we just going to come out and say that we really just shouldn't be eating any of it in the first place? At this point, it's only a disease and disability because the modern world has pumped us full of this crud for so long that we can't take it anymore, yet they make it so that's the only thing immediately available. Its poisoning our people. I think its time for change all around. Change your life and perspectives.

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    All of a sudden, at the age of 50, I started to have very serious reactions to things I was eating. They were always following the same scenario, with the bottom line being: I could not keep food in. After some testing and some more testing I was declared healthy and "would find out what not to eat". I had lost more than 40 pounds in 3 years and was afraid to go anywhere, or eat anything. A move to a different state and an alternative way of looking at my "non-problems" health situation suggested that I had a severe intolerance to gluten. I am following a strict gluten-free diet and am happy to report that doing so has eliminated all of my problems. I get occasionally glutened when I eat out and know it within 30 minutes. It is the same old scenario. So, for me, I know that I have a real condition. I would like doctors to take this condition seriously.

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    I believe that it is happening to some people. I did endoscopy and colonoscopy which did not conclusively detect celiac disease. But whenever I ingest gluten by mistake my symptoms return. All along doctors told me I had IBS. I don't understand it at all. I cannot say I was diagnosed with celiac disease, but eating gluten makes me really sick. I have been gluten-free for about 4 years now.

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    Non-celiac gluten sensitivity is a fact. Please read The Gluten Connection (Rodale 2007) by nutritionist Shari Lieberman PhD, with Linda Segall. This condition can be tested with a stool test at EnteroLab (enterolab.com) in Dallas. It is estimated that up to 29% of all people have this condition!

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    All of a sudden, at the age of 50, I started to have very serious reactions to things I was eating. They were always following the same scenario, with the bottom line being: I could not keep food in. After some testing and some more testing I was declared healthy and "would find out what not to eat". I had lost more than 40 pounds in 3 years and was afraid to go anywhere, or eat anything. A move to a different state and an alternative way of looking at my "non-problems" health situation suggested that I had a severe intolerance to gluten. I am following a strict gluten-free diet and am happy to report that doing so has eliminated all of my problems. I get occasionally glutened when I eat out and know it within 30 minutes. It is the same old scenario. So, for me, I know that I have a real condition. I would like doctors to take this condition seriously.

    My experience exactly!

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    My tests, genetic testing and biopsy were negative and I was told I possibly could not have celiac disease. I had dermatitis similar to herpes rash which went away on the gluten-free diet. My father is gluten sensitive, and my father's mother's sister died of celiac disease. I am extremely sensitive. 7 years on gluten-free diet. I think scientific community have not found all the right genetic markers yet.

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    A research study that I have seen indicates that approximately 30% of the population carries the gene for celiac disease, and approximately 1% of the population has Celiac Disease. It seems very possible that some with the gene, but not with verifiable celiac disease may have some degree of gluten sensitivity. I wonder if there is any research showing how many of those with "just gluten sensitivity" have tested positive for having the gene for celiac disease. (The last time I checked, the cost of the genetic testing was about $800.00.)

    The fact that our wheat now has more gluten, and extra gluten is added to some food products, probably has boosted the number of people with symptoms of gluten sensitivity.

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    I have seen with my own eyes, in my own child, that it is true to have gluten sensitivity without celiac disease. My firstborn has celiac disease. When my second born started exhibiting similar symptoms, I took him for celiac blood tests - negative. Many of them negative. He experimented with dairy-free diet, taking pro-biotics, duodenal biopsy also was negative and looked 100% healthy. He felt horrible for years. Then, one year for Lent he "gave up gluten to understand and support" his celiac brother. Guess what - he's been gluten-free and feeling better ever since. We even have really good celiac GI docs at the University of Chicago and still... this is what it took to figure it out. Hopefully a marker will be discovered.

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    I too tested negative for celiac disease after an endoscopic biopsy. I had resolution of my symptoms (GI upset, mental fogginess, general feeling of malaise, abdominal bloating, etc.) within a week of eliminating gluten from my diet. If I do ingest gluten, I am feeling the effects by the following day. This condition is real and I feel that doctors should at least explain the possibility to patients with these symptoms and then the patient can choose whether or not to follow a gluten-free lifestyle. It is difficult at times, but I will never go back to feeling so bad!

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    I am one of those who tested negative on the serology test, endoscopies + biopsies, and the gene test... but wheat definitely bothers me. I am dairy-free and gluten-free and hereditary fructose intolerant. It may be the fructans (a wheat starch made up of long fructose chains) which is really the culprit. I am wondering if others who are non-celiac gluten intolerant really have fructose malabsorption (which is surprisingly common) or have HFI (which is rarer) like me? Anyway, it's an interesting possibility.

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    I don't see why this can't be considered a condition when lactose intolerance and irritable bowel syndrome are accepted. Those, along with gluten intolerance, are not detected by tests or concrete evidence, but by symptoms reported by the patient and through trying out different diets and/or medicines that don't cure, but alleviate symptoms. I agree with Cait in that America puts too much wheat in the diet, and I think that cow's milk is the same issue. Anyway, I was diagnosed with gluten intolerance, and I feel better when I don't eat gluten. I feel bloated, tired, and in pain when I do. So I don't. What does it really matter if doctors want to call it a disease or not? If you feel better eliminating a particular type of food from your diet, then do it.

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  • About Me

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,500 articles on celiac disease. His coursework includes studies in science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. He previously served as SF Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.


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