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Doc only tested for TTG - should I press for more?


samplemomof3

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samplemomof3 Rookie

I’ve been having diarrhea and headaches, daily for 18 days now. I have had many of the common celiac symptoms for most of my life, as well. 

I asked the doc to check for celiac. He ordered the tTG-IgA and nothing else. It finally came back and my results for 3.48 (which according to the <20 range for my test, is obviously a very strong negative). I’ve read that ttg could give a false negative of you are IgA deficient. 

I don’t want to annoy the doc and make him think I’m the queen of the internet, lol, but should I push for a full celiac panel and remind him that the ttg alone could give a false negative? 

Did any of you get a negative tTG-IgA, but actually still have celiac? Also, I should mention on my blood work, my hemoglobin is fine and not showing anemia (not sure if that’s what causes the immunoglobulin A deficiency or not.. I don’t know enough about that deficiency.)


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ravenwoodglass Mentor

Yes you should get the full panel done. Maybe ask for a referral to a GI doctor since this has been going on for over 2 weeks. It might also be a good idea to get a stool sample tested for food borne illness if they haven't done it already.  I had salmonella for over 2 weeks once before the doctor tested. Doc kept insisting it was just IBS. Got an apology and some antibiotics.

cyclinglady Grand Master

Yes, I tested negative to the TTG IgA.  My only positive on the celiac panel was the DGP IgA.  At the time of my diagnosis, I was very anemic.   But the Immunoglobulin A (IgA) test should have been run with the TTG IgA.  In celiac disease testing, it confirms if the celiac IgA tests actually work.  Without it, who knows if the TTG IgA test results are valid as some celiacs are Immunoglobulin A deficient?  

Do you have any of the risk factors?  It might make it easier to get the rest of the panel ordered.

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Ravenwoodglass gave some excellent advice too.  In any case, keep persisting as the IgA deficiency y test should have been run.  

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    • trents
      If this applies geographically, in the U.K., physicians will often declare a diagnosis of celiac disease based on the TTG-IGA antibody blood test alone if the score is 10x normal or greater, which your score is. There is very little chance the endoscopy/biopsy will contradict the antibody blood test. 
    • JoJo0611
      TTG IgA reference range 0.0 to 14.9 KU/L
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      What was the reference range for that test? Each lab uses different reference ranges so a raw score like that makes it difficult to comment on. But it looks like a rather large number.
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