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.
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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
Where can I buy gluten-free stuff?
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Gertrude.....just a few comments after reading your posts..........no other disease but Celiac disease will cause a positive on the EMA test. I have never heard of a false positive on that either. It is a test that is done by hand and not by a machine because of the way it has to be done, so having a false positive is almost impossible. Your doctor should have known that. Many people trip just 1 or 2 tests on the panel and they have Celiac Disease. With autoimmune testing, you can test 2 different people with Celiac Disease and they can have wildly different test results.
Couple those with a positive gene test and the likelihood of it being Celiac is almost 100%. The fact that the doc didn't find villus atrophy just means the damage is not extensive enough for them to find.......yet. I am sure they would prefer you to keep eating gluten until that happens but you do not want to do that. So.........after you have been gluten-free for awhile, have them run the Celiac panel again to see if your EMA goes to normal, which it should if you eat very gluten free. With positive gene results, positives on your Celiac antibody testing, and positive dietary response, that is a diagnosis!
That's great, Gertrude! I'm glad your doctors sound more competent than mine. And that you're starting to feel better. I haven't had any abdominal or joint pain in the last few days, and I feel like I have more energy for sure. I've been feeling a little off/dizzy but that might be from gluten withdrawal.
Good luck with everything!
By the way, I got my biopsy pathology report and the doctor took 2 biopsies, not the recommended 4-6. It says no "significant villous blunting not seen." I don't know if I should laugh or cry---so frustrating.
Thank you, this does feel helpful and reassuring.
Did you end up getting blood tests again after going gluten-free?
Do you have to worry about cross contamination as much as with a celiac diagnosis?
How do you explain it to friends and family? Non-Celiac gluten sensitivity sounds so vague and I know it's dumb, but I worry about people not taking me seriously.