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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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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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