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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?  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
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Gluten Intolerance Can Actually Be Subclinical Celiac Disease

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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.[/font][/color][color=rgb(68,68,68)][font='Open Sans']
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 which can lead to celiac-induced intestinal damage being missed.[/font][/color][color=rgb(68,68,68)][font='Open Sans']
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.[/font][/color][color=rgb(68,68,68)][font='Open Sans']
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.[/font][/color][color=rgb(68,68,68)][font='Open Sans']
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.[/font][/color][color=rgb(68,68,68)][font='Open Sans']
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.[/font][/color][color=rgb(68,68,68)][font='Open Sans']
[b]Reference:[/b][/font][/color][color=rgb(68,68,68)][font='Open Sans']
Quaglia, S, De Leo, L, Ziberna, F, et al. [url="http://www.ncbi.nlm.nih.gov/pubmed/24769794"]Intestinal-mucosa anti-transglutaminase antibody assays to test for genetic gluten intolerance[/url]. Cellular and Molecular Immunology advance online publication, 28 April 2014; doi:10.1038/cmi.2014.32.[/font][/color]
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Very interesting. Useful to me as although I've established a negative reaction to gluten I'm currently in pursuit of a diagnosis, this will help me stay on the gluten free diet if I wind up with a NCGI diagnosis.

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I am glad that this helped you. Sometimes I have no idea if anyone is reading…I have some family members who get very ill from gluten but have tested negative for celiac disease.  They are all GF and I suspect that at least a few of them actually have celiac disease that was not picked up on testing. 

All the best to you. This is a great website for advice, guidance, and support.


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That kinda what my primary doctor told me. I had a family history of celiac, and other health problems that astronomically rose the chance of celiac. I went gluten free with any tests because I believed that it would be a 1 week experiment that would end in no improvements in my symptoms. But when I thought about testing, I would have to spend weeks miserable, and I could still get a false negative. But if you have the gene, you have the symptoms, you ruled out fodmap intolerance/ibs, and you feel better without gluten, then that should be enough to be diagnosed. I rather be pointlessly careful, than risk permanent damage that could lead to early death or cancer.

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