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confusing blood results


Erin1712

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Erin1712 Newbie

I was tested in 2012 and my tests came back positive. But I never got my results. A few weeks ago I got the test results and the family doctor said I have celiac disease. I went gluten free and know when I have had gluten now. I feel so much better. But because I had such a long time before I got my results I got another test. That blood test came back normal even though I had not been gluten free much. I did one day without and then one day with. Back and forth. So at the time of testing I had done 2 days gluten free with 10 days of on and off gluten free before that. Is that enough to make my results go down to normal? Here they don't transfer you to a GI doctor for biopsy to diagnose. 

The plus side is that my 2 year old was diagnosed and is doing much better. 


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MatthewK Newbie

Yes, your results can be skewed by the fact that you were not eating enough gluten.  This is what I tell everyone who tell me that the have celiac symptoms;  Go get a Gene test to see if you carry the DQ2, or DQ8 gene, If you carry either or both, you have the ability to have Celiac disease, if you don't have either than you cannot have celiac disease.  In my opinion if you have several of the over 200 possible Celiac symptoms, and also carry one of the genes, assume you have the disease.  More importantly check to see if your child has the gene too.  You can eliminate a lot of guessing by getting the gene test.  

Another thing I tell people new to the Celiac world is to buy the book Recognizing Celiac Disease, by Cleo J. Libonati, RN, BSN.  It gives all the signs, symptoms, etc.  Look on abebooks.com I've bought several for friends and family.

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      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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