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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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124chicksinger

Scopes And Blood Work

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Had the scopes yesterday.  Ugh.  I think it was a downright horrible experience, but now knowing what it all entails, I wouldn't be scared if/when it needed to be done again.

 

Took numerous biopsies all the way down to the small intestines b/c there was inflammation in the esophagus, and took stomach biopsies also.  Papers I was given on the way out with photos stated the biopsies were to diagnose h pylori and celiac sprue.  It looked like 2 biopsies were taken for the each diagnosis;  I read several should have been taken. Disappointed.  Of course, I could be reading the papers incorrectly.  There were no pics of the small intestines either.  Should there have been?

 

In the other end, 2 polyps were removed and diverticulosis was diagnosed.  Hilariously, he handed me a xeroxed pamphlet about eating more grains and fiber for that.

 

I called the doc's office today to make Tuesday's appointment for the pathology results and said I didn't hear about the blood work for celiac; the nurse then told me it was negative.  Again, I don't know exactly what tests were run.  I don't know whether to be relieved or disappointed but I have so many issues that point to celiac, and she reiterated to wait on the biopsies.  I have already begun eliminating gluten and I intend to continue on that path and see how I feel.  

 

I really do wish I'd already received an answer though, and at this point if he says it isn't celiac, I will believe what these tests showed, and consider myself gluten intolerant or sensitive by continuing to eliminate it and judge by how I feel. 

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make sure to ask for copies of all of your results, and then you can post them here for others to comment.  I was negative on the EMA and TTG IgA but had a strong positive on the DGP IgG.  My GI didn't seem to think it was too bad, but fast forward a year and now he's said at my last two appointments he believes my damage is further down where a traditional endoscopy can take samples.  I still have low Vitamin K, and I just had neutral and total fat malabsorption tests completed and turns out I'm malabsorbing both kinds and that's why I've been taking huge amounts of vitamin K for it to move up a tiny amount.  

 

University of Chicago Celiac Center does recommend 5-6 biopsies.  http://www.uchospitals.edu/pdf/uch_014187.pdf  It's a shame not all doctors know this.  I had eight taken, but they were all negative, but I had an appointment yesterday where the doctor explained the length of the intestine and surface area and how the damage can be really patchy.   He kept saying there is so much still to learn about celiac disease, and he is exactly right!

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