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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? - 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

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Due to symptoms and family history, we recently had our six year old daughter tested for celiacs. We received the blood test and it was not typical. Her TTg was 0 (she doesn't produce them) and her IgA was 27. All they could tell us was well she could have it or could not. We have an upper endoscopy schedule for the coming week but was curious to see if anyone else had similar blood test results. I'm having second thoughts about doing the endoscopy but my gut is telling me to. 

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Just saying her TTg was 0 & her IgA was 27 doesn't tell us anything. Every lab can have different values so we need the reference ranges not just the results. Can you look back at the lab report & get those & post them please?

Did they tell you she MUST be eating gluten every single day until all testing is done? Don't make a fatal mistake & take her off of gluten yet.

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Before ordering the endoscopy, you would think they would order the complete celiac panel.  Not all celiacs (like me) ever get a positive TTG (I do test positive to the DGP, but negative to the EMA and TTG).  You would think that the additional blood tests would be way more cost effective than going directly to endoscopy.  The endoscopy usually is still considered necessary for a celiac diagnosis, but there does not seem to be strong evidence that she has celiac disease other than a family history.  

Some celiacs are seronegative negative, but your daughter was only negative on just one of the celiac tests.  So, she MIGHT be seronegative.  More investigation is needed.  She is NOT IgA deficient, at least for celiac testing (for celiac disease this test is just a control test).   The DGP test seems to be better for small children.  

I do not have the complete health history of your child, but I would seek a second opinion before going to an endoscopy at this time with only one test result.  Try to find a celiac-savvy GI -- one who follows what the American GI Association  recommendations for celiac disease and what the Mayo Clinic or a large celiac research center recommends for testing protocol.

https://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf

https://gi.org/guideline/diagnosis-and-management-of-celiac-disease/

 

Edited by cyclinglady
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A smart woman, our cycling lady is! I would heed her advice.

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