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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Second Guessing Diagnosis
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6 posts in this topic

A week ago my Dr called me in for my blood work results. I was severely low on vitamin D, iron & b12. Plus I had a celiacs blood panel done and I came back positive for only 1 of the 4 tests (the deamiated gliadin iga). So off I went to the specialist to schedule my endoscopy. (Also I should note that I have hypothyroidism and have been dealing with that for almost 20 yrs, I'm 26).

Anyways, my normal Dr had me feeling quite confident that I had celiacs, I had all the deficiencies, the other autoimmune disease, most of the physical symptoms, but my specialist Dr left me second guessing if I really do have it just because only 1 of my blood tests came back positive. He seemed to think that unless the ttg tests came back positive, then it probably was a lab error, getting my one positive.

I'm doing the endoscopy in a week & I know that will make it official either way, but I'm feeling pretty defeated. I honestly was hoping for an end all "cure" (aka just go gluten free, etc) to my situation, but now I'm convinced my biopsy will come back negative. Anybody else go through this?

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Was this a gasterenterologist that specializes in Celiac Disease? - sadly not all do.

With deficiencies, AI symptoms and a positive DGP I would remove all gluten after the biopsies...regardless of results - then retest the celiac antibodies and nutrients at six months and a year. Sometimes AI symptoms take longer than digestive symptoms to resolve so the blood can show if you are no longer producing antibodies and are absorbing nutrients better.

Hang in there...either way give living completely gluten-free the opportunity to improve your health.

Ps...we do have members that were diagnosed by biopsy with ALL negative antibodies...not everyone produces them and you do produce one very specific to gluten already...I wouldn't wait for the others to become positive.

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Also, make sure they do at least EIGHT samples when they do your biopsy. Some "Doctors" only do two or three, and as the damage is often spotty, they miss the damaged parts.

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There are quite a few people around here who were diagnosed using the DGP tests, it seems to catch many celiacs that the tTG misses - the tTG IgA misses up to 25% of celiacs.

 

There are also many who were diagnosed using only the IgG version of tests rather than the Iga versions... doctors seem to doubt those too for some reason.

 

From what I have seen, many doctors want all the stars and moons to align before they will give out a definitive diagnosis... I have no idea why.  :rolleyes:  If the doctor thought your DGP lab result was a fluke, did he order a repeat test? If not, I'm guessing he is one of those reluctant to diagnose doctors.

 

Good luck with the endoscopy.  Keep eating gluten until your testing is done.

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Thank you everyone! Yes, I'll definitely be chowing down on gluten before my intestinal check! Now that I look back at my labs, my Ttg levels were very low, in the .7-1 so perhaps I just didn't have much gluten in my system? Either way, I feel more at ease with my blood work and will just try and be patient during this last testing phase.

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Even if your endoscopy/biopsy comes back negative, I say go gluten free anyway and let your body tell you if gluten is a problem for you. If you do have a problem with it, more than likely, when you go gluten-free, you'll notice lots of other changes in your body that you may not have even realize were troubling you before. I'd trust personal experience more than any test or doctor out there. But great that you're doing things in the proper order!

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