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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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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
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