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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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Tested Negative For Celiac Gene...
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4 posts in this topic

I recently was diagnosed with late onset type 1 diabetes (at age 33).  My endocrinologist wanted me tested for Celiacs, after mentioning I've had IBS my entire life.  Here was the results:

 

Gliadin Antibody Iga - my value 47 (standard range <20) - High

Gliadin Antibody Igg, Ttg Iga, and Ttg Igg were all < 5 (standard range <20) - Normal

 

My doctor said the high value was on the "less specific" test, but may still have Celiac's.  I was then referred to a Gastroenterologist who tested me for the Celiac gene HLADQ2 &HLADQ8, both of which just came back as negative.

 

Now I'm scheduled for an Endoscopy in 3 weeks for final confirmation.  But, based on this information, is it likely that I do NOT have celiacs?  

Edited by ktmlee
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Most people with celiac disease are DQ2/DQ8 positive, but it is possible to have it without the genes (depending on the source I've seen that between 1 and 4 percent of celiacs do not have of the main genes). I was diagnosed 4 years ago with celiac disease, then found out after the fact that I am DQ2/DQ8 negative. I am double DQ7. So is my mom, who also has celiac disease. There were a few scientific posters at the International Celiac Disease Symposium in Chicago in Sept. showing that celiac can occur in non DQ2/DQ8 individuals as well. Hope this helps!

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I recently read in Dangerous Grains that only 90% of celiacs have the DQ2 gene and 94% have the DQ8 gene (I believe those were the numbers). It is very possible to have celiac disease without the DQ2 or DQ8 genes, most celiacs do have it though.

 

The AGA IgA is not used very often now a days because it is not a very sensitive test. It is not solely specific to celiac disease either; it is thought by some to occur in those with non-celiac gluten intolerance (NCGI) as well. Pages 10-12 of thios report discusses the tests: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

Because you have diabetes, if you have gluten sensitivity it is probably in the form of celiac disease; diabetes is the most common partnering autoimmune disease to appear with celiac disease. :( I would guess it is celiac disease.

 

Good luck with the biopsies. i hope you get some definitive results. Kepp eating gluten until the test is complete.

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Thanks for the replies.  It makes sense why my doctor still wants the endoscopy then, since it could still be Celiacs.  Forcing myself to eat enough grains for this test has been hard though, since it doesn't help my blood sugar.  But, I guess I'll know in a few weeks time, and can go bread-free again after that!  Thanks again.

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