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  • Recent Activity

    1. - trents replied to lizzie42's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Confusion about my son's results

    2. - lizzie42 replied to lizzie42's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Confusion about my son's results

    3. - lizzie42 replied to lizzie42's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Confusion about my son's results

    4. - trents replied to lizzie42's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Confusion about my son's results

    5. - lizzie42 replied to lizzie42's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Confusion about my son's results


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    • trents
      Most doctors don't even order anything besides the tTG-IGA and maybe total IGA when doing blood testing for celiac disease. The EMA is the very first celiac blood antibody test that was developed and has largely been replaced by the tTG-IGA which is less expensive to run in the lab. My understanding is they both pretty much check for the same thing. The IGG tests are second tier tools that are less specific for celiac disease. It is not at all uncommon for the EMA and the tTG-IGA to disagree with one another. We frequently see this on the forum. I do not know why. Please realize that doctors typically run a number of tests when diagnosing a medical condition. If there was one test that was foolproof, there would not be a need for other tests and other testing modalities. It works that way with many or most diseases. 
    • lizzie42
      But yes seeing all those negatives does give me a bit of doubt! I feel confident but those results give me a seed of doubt. Especially since it's a lifelong diet for him! 
    • lizzie42
      When I originally posted I hadn't talked to the pediatrician yet and didn't realize about the budosinide. Now I feel pretty confident. I was concerned that all of the tests didn't come back positive - that seemed kind of ambiguous to me. I didn't realize that was common. Do a lot of people on here have a positive tTG but negative other tests? I thought the EMA was pretty "gold standard."  And yes I do now wonder about the asthma! I hope being gluten free will improve that! 
    • trents
      @lizzie42, So, I'm confused with what you are uncertain about. Do you really have any doubt that your 5 year-old son has celiac disease? Is it because he isn't exhibiting anemia and the rash as did your daughter? The genes are certainly there and the antibody testing certainly indicates celiac. And given the fact that he was on a reduced gluten diet and on a steroidal medication (which would likely suppress immune responses) do you really have any doubt? If you can't afford the GI consult with endoscopy/biopsy, why would you consider a gluten challenge after removing the remainder of the gluten from his diet? Have you considered that his asthma and "sickness" may be tied to celiac disease?
    • lizzie42
      These are my sons results. My daughter was high positive on everything and maxed out the tests in addition to being anemic, bad rash, etc.  Yes, he has been eating mostly gluten free (not completely). He was also on a high dose of budosinide at the time of testing due to some asthma and sickness. I didn't realize that affects the results.  This test along with my daughter being so sick with it prompted the pediatrician to diagnose him. We can always do a gluten challenge in the future. We will do that with our 1 year old. We will have her eat school lunch when she goes to prek and then test after a couple months. 
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