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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.

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Hello to everyone!

I have been hanging around here and reading posts for quite a few weeks. A friend of mine was diagnosed with celiac disease and I thought it might be my problem.

I have had diarrhea for my whole life. I was told years ago it was IBS and to learn to live with it. As I have gotten older I have found it to be a real problem.

I went to my primary care who told me I wasn't sick enough to have celiac disease and I was too heavy. She sent me to an allergist,who did skin testing for foods and the blood tests for celiac disease, The skin test showed positive for wheat, fish, peanuts and eggs. The celiac disease blood test came back normal. He told me to avoid those foods. Then he ran allergy bloodwork and they came back negative. I have omitted those foods from my diet and I feel better. But now they say I don't have any allergies according to the blood work. I guess the big old welts from the skin tests don't count. So according to the Drs. I don't have allergies or celiac disease.

I decided that I would stick to the diet for six weeks and see if I keep improving.If so ,that is how I will eat.

Has anyone else had all the negative tests,but felt better gluten free?Am I crazy?

Cathy

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You are not crazy. I tested negative on the blood tests, too. See the blood test measures the level of antibodies to gliadin (another word for gluten protein) in your blood. The antibodies are produced in your intestine, but only start to leak into your bloodstream when there is a lot of damage to your intestine. Since the damage in the intestines often starts out as patchy and the lining heals quite quickly, it can take quite a long time for some people to produce a positve bloodtest result.

You could ask a GI doctor for a biopsy to see if there is damage, but even the biopsy has some flaws. You already know that you feel better off wheat, so I would say go with that, but understand that it is much harder to get positive test results after being on a gluten free diet.

Welcome to the message board. :)

God bless,

Mariann

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My blood test wasn't negative, but it wasn't positive either. I determined by celiac status by how I did on the gluten-free diet. I felt better going gluten-free, and can tell when I get something that's contaminated, so I stay gluten-free.

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My doctor diagnosed Celiac Sprue from the diet changes. You have to have almost massive amounts of damage for the tests to show positive. If you feel better on the gluten-free diet, then stick with it. A long, healthy life is very much worth not eating wheat!

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      I agree with everything cyclinglady said. You need to be tested BEFORE you go gluten free!!!!!! I was just reading an interview with Joseph A. Murray, MD who is head of the celiac dept. at Mayo Clinic & one of the top celiac experts & researchers in the world. He talks about this subject of going gluten free before testing many times during this interview. It's interesting reading. Please take a little time to read it all the way through. http://www.medscape.com/viewarticle/820397_3
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      That's interesting. I asked her if there was a blood test I could take, she said no. I don't think she feels I have celiac disease, per se, just wants to rule out an allergy or sensitivity to gluten. If after the 6 weeks, there is no difference, she suggested eliminating something else from my diet. She mentioned leaky gut and GMOs as well. Thanks for your input. I appreciated it.
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      Your GI is sadly mis-informed!  You should be tested for Celiac Disease before embarking on a gluten free diet.  Celiac Disease should be ruled out first!  So many doctors think that you have to be malnourished and wasting away to have celiac disease -- not true!  You can develop celiac disease at ANY age.  Do you have any other autoimmune disorders?   Celiac disease is also genetic.  So, if you have it, your kids and sibliings should be tested even if they are symptom free!  Celiac Disease has so many other issues that come with having it.  That's why having a proper diagnosis is important.  You will get the care you need.  Also, sticking to a life-long especially when you are older and it is hard to make changes in general (hey, I'm there!).    Your GP can actually order the celiac blood panel.  In addition, I would search around for another GI (one who is celiac savvy).   Here's a link regarding the exact tests: http://www.cureceliacdisease.org/screening/ I encourage you to read up on celiac disease.  Only you can be your best health advocate!  I wish you well!  Feel free to ask any questions!  
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