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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Transient Celiac Autoimmunity In A Adult
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I came across this case report in the pubmed.gov database. It is going to be published in one of the upcoming issues of the Journal of Clinical Gastroenterology. Dr. Peter Green, from Columbia, is one of the co-authors.

To summarize, it discusses a 58 year old man who is employed at a bagel shop and eats gluten on a regular basis. Throughout the vignette he continues to eat gluten on a regular basis.

March 2010: referred for celiac testing after found to be Vitamin D deficient. TTG and DGP antibodies normal, small bowel biopsies on endoscopy are also normal.

May 2010: develops hyperparathyroidism. Celiac antibodies repeated, TTG antibodies high at 22, and then repeated and high at 37. DGP antibodies high at 36, EMA antibodies high at titer of 1:40. Patient also found to be DQ2 positive on genetic testing.

September 2010: TTG and EMA antibodies normal, DGP weaking positive.

February 2011: all antibodies (TTG, EMA, DGP) normal.

April 2011: endoscopy and biopsy repeated: well formed villi in duodenal bulb and throughout duodenum, a few white blood cells (lymphocytosis) in villi tips, a pattern described in latent or potential celiac disease.

They do not refer to any other symptoms in this patient (outside of the problems of Vitamin D deficiency and the hyperparathyroidism) so I would assume he is asymptomatic since he regularly eats bagels and works in a bagel shop.

I am curious to see what others on this board think of this case report, and wondering if anyone else has experienced a total flip from positive to negative antibodies while continuing to eat gluten.

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Just realized that I made a typo, the title should include the words "in an adult" not "a adult." Maybe that's why none of you are commenting?

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Yes, it's common knowledge among experts that celiac disease occasionally goes into remission. There are other case studies, plus a study on someone who desensitized herself by progressively eating more and more gluten.

There was a recent study on DH where dermatologists mention that the gluten sensitivity goes away in some people after 1-2 years of eating gluten-free. I think they said it's more likely to go away in people with DH only and no small intestine involvement.

Problem is, it's not the majority of celiacs and there is no way to predict who will regain gluten tolerance.

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Yes, it's common knowledge among experts that celiac disease occasionally goes into remission. There are other case studies, plus a study on someone who desensitized herself by progressively eating more and more gluten.

There was a recent study on DH where dermatologists mention that the gluten sensitivity goes away in some people after 1-2 years of eating gluten-free. I think they said it's more likely to go away in people with DH only and no small intestine involvement.

Problem is, it's not the majority of celiacs and there is no way to predict who will regain gluten tolerance.

This is interesting because at the end of this case report the authors claim that this is the first report of such a phenomenon. Perhaps because the patient wasn't actually ever diagnosed with celiac disease. Do you have/know the references for the other similar case reports?

I would appreciate it.

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Peter Green likes to claim he is some kind of special snowflake. Apparently the reviewers haven't read enough of the celiac literature to catch his BS. This happens a lot in scientific articles. When I saw Marku Makki talk, he spoke about desensitization and spontaneous remission in some celiacs. He has seen it in his decades of practice. It's part of the reason a vaccine for celiac is thought to be feasible. Makki's observations are in one of his articles but I can't seem to turn it up. I did find some other stuff for you. I don't know whether the Gut links will work for you because I have an academic affiliation that allows me to see a lot of research articles but I copied the conclusions.

Desensitization.

http://www.ncbi.nlm.nih.gov/pubmed/16388719

This is the best article I can find. It is a retrospective study on 70 people diagnosed with celiac in childhood.

http://gut.bmj.com/content/56/10/1379.full

"In conclusion, this study indicates that up to 10% of celiac disease patients diagnosed in childhood can spontaneously recover a normal villous architecture after a long period of normal diet without retaining any clinical or biological sequelae of celiac disease. The persistence of immunological stigmata of celiac disease and the risk of relapse indicate, however, that this remission state must not be considered as a definitive recovery but as a return to latency that requires a regular follow-up. Most of the patients with celiac disease diagnosed in childhood who resumed a normal diet, however, have an active celiac disease at adulthood, even in the absence of symptoms. These patients should be screened for the presence of villous atrophy and osteopenia, and should be advised to return to a GFD in the case of persisting villous atrophy."

A case study.

http://gut.bmj.com/content/57/5/715.full

"If the initial diagnosis was correct this represents a previously unrecognised course of childhood coeliac disease with either cure or prolonged latency (during which a normal diet may be tolerated). This has major implications to the individual, their families and to the provision of health care resources, particularly in the context of the increased prevalence of coeliac disease. The key questions that arise are whether lifelong gluten exclusion is necessary in childhood coeliac disease and whether gluten exclusion in children with coeliac disease has the potential to promote a period of prolonged latency or remission? In the context of the exponential increase in diagnosis and advent of screening further study of the natural history (including the potential impact of gluten challenge) and revision of the diagnostic criteria are indicated. We must ensure that patients are fully informed about uncertainty and that we do not over-diagnose or over-treat a condition that may not be lifelong and may, in a number of children, have the potential to enter a prolonged remission. "

Remission in DH

http://archderm.ama-assn.org/cgi/content/full/archdermatol.2010.336v1

Reuters summary of the research and interview with Stephen Katz at NIH

http://www.reuters.com/article/2010/11/19/us-painful-gluten-rashes-might-be-foreve-idUSTRE6AI44620101119

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Peter Green likes to claim he is some kind of special snowflake. Apparently the reviewers haven't read enough of the celiac literature to catch his BS. This happens a lot in scientific articles. When I saw Marku Makki talk, he spoke about desensitization and spontaneous remission in some celiacs. He has seen it in his decades of practice.

It's part of the reason a vaccine for celiac is thought to be feasible. Makki's observations are in one of his articles but I can't seem to turn it up. I did find some other stuff for you. I don't know whether the Gut links will work for you because I have an academic affiliation that allows me to see a lot of research articles but I copied the conclusions.

Desensitization.

http://www.ncbi.nlm.nih.gov/pubmed/16388719

This is the best article I can find. It is a retrospective study on 70 people diagnosed with celiac in childhood.

http://gut.bmj.com/content/56/10/1379.full

"In conclusion, this study indicates that up to 10% of celiac disease patients diagnosed in childhood can spontaneously recover a normal villous architecture after a long period of normal diet without retaining any clinical or biological sequelae of celiac disease. The persistence of immunological stigmata of celiac disease and the risk of relapse indicate, however, that this remission state must not be considered as a definitive recovery but as a return to latency that requires a regular follow-up. Most of the patients with celiac disease diagnosed in childhood who resumed a normal diet, however, have an active celiac disease at adulthood, even in the absence of symptoms. These patients should be screened for the presence of villous atrophy and osteopenia, and should be advised to return to a GFD in the case of persisting villous atrophy."

A case study.

http://gut.bmj.com/content/57/5/715.ful

"If the initial diagnosis was correct this represents a previously unrecognised course of childhood coeliac disease with either cure or prolonged latency (during which a normal diet may be tolerated). This has major implications to the individual, their families and to the provision of health care resources, particularly in the context of the increased prevalence of coeliac disease. The

key questions that arise are whether lifelong gluten exclusion is necessary in childhood coeliac disease and whether gluten exclusion in children with coeliac disease has the potential to promote a period of prolonged latency or remission? In the context of the exponential increase in diagnosis and advent of screening further study of the natural history (including the potential impact of gluten challenge) and revision of the diagnostic criteria are indicated. We must ensure that patients are fully informed

about uncertainty and that we do not over-diagnose or over-treat a condition that may not be lifelong and may, in a number of children, have the potential to enter a prolonged remission. "

Remission in DH

http://archderm.ama-assn.org/cgi/content/full/archdermatol.2010.336v1

Reuters summary of the research and interview with

Stephen Katz at NIH

http://www.reuters.com/article/2010/11/19/us-painful-gluten-rashes-might-be-foreve-idUSTRE6AI44620101119

Excellent links. Thank you!

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Other autoimmune disorders are known to have flares and periods of remission. Surely it is not a big stretch to see Celiac following such a pattern as well?

I had what now seems to have been my first brush with Celiac 25 years ago, but it was put down to "mono" and post viral fatigue (the accompanying digestive problems were simply ignored by the docs!). I was ill and unable to work for quite some time until I tried an anti-candida diet which was, you guessed it, gluten free. I recovered sufficiently to be able to return to work, and dropped the diet (I'd never even heard of Celiac at this point). I struggled a bit with ongoing fatigue etc for another 18/19 years but otherwise had a normal life. I then used a gluten free/gluten light diet and excercise therapy for a while to recover from lingering joint and soft tissue pain after a car accident, and felt really well for several years afterwards, even after reintroducing normal amounts of gluten to my diet. The penny about needing to stay gluten free still did not drop, until very recently after 2-3 years of increasingly poor health.

Although this is not entirely the point that jwhale is making about recovery while still eating gluten, for me Celiac seems to have grumbled in the backgound for years, with periodic flare ups being treatable by a being gluten free for a while, and the symptoms returning to a grumbling level on reintroducing gluten, and maintaining this low symptom position for a long time.

I am therefore strongly tempted to see Celiac and gluten intolerance as a spectrum disorder, in which the severity can vary between people and also in the same person over time. Other autoimmune disorders behave in this fashion, e.g. lupus. Why not celiac too?

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