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Positve Yet Inconclusive?

peetred

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peetred Rookie
peetred
Posted

My doc ran the first bit of celiac testing for antibodies on my 2 year old son...

one of the antibodies came back elevated but the lab tells my doc that it is inconclusive (because the other three were normal). So, my doc admits he is confused about he results. He ran another full celiac panel and the nurse called this morning and told my husband that it was negative. I have heard a lot on here that the tests are not really reliable for children his age.

So, I am very confused. My son has gastrointeritus right now, but the doc told us to keep a food diary especially when he's feeling better. We have been doing lactose free for 2 weeks with no improvement (i think it's worse) in his bowel movements. I am just ready to try gluten-free to see what happens. What do you all think? At least then, I could take in the food diary and show the doc whether he was improving or not. <_<

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Ursa Major Collaborator
Ursa Major
Posted

Celiac testing is notoriously unreliable in children under six (and not a whole lot more reliable after that). There is no way that a doctor should say that it can't be celiac disease because the blood test was negative.

At your son's age trying the gluten-free diet is the ONLY reliable test for celiac disease. So, my advice is to start the gluten-free diet immediately. The food diary is an excellent idea, as it will help you determine if the diet is working or not, plus it will be good evidence to show your doctor if your son shows improvement on the diet.

mom2lucas Rookie
mom2lucas
Posted
My doc ran the first bit of celiac testing for antibodies on my 2 year old son...

one of the antibodies came back elevated but the lab tells my doc that it is inconclusive (because the other three were normal). So, my doc admits he is confused about he results. He ran another full celiac panel and the nurse called this morning and told my husband that it was negative. I have heard a lot on here that the tests are not really reliable for children his age.

So, I am very confused. My son has gastrointeritus right now, but the doc told us to keep a food diary especially when he's feeling better. We have been doing lactose free for 2 weeks with no improvement (i think it's worse) in his bowel movements. I am just ready to try gluten-free to see what happens. What do you all think? At least then, I could take in the food diary and show the doc whether he was improving or not. <_<

Hi! My son is 2 years old as well. When he first started having his sintoms (huge belly, throwing up all the time) it took awhile before we convinced his doctor to ran the celiac panel on him, but when he did, with the exception of the Igg, everything else came back negative, so she dismissed him as not being celiac. But I took him to a Gastro Pedi and it only took her a second to look at him, and say he was very probably a celiac, and did the biopsy which came back positive. So, yes, blood tests are highly unreliable.

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  • Posts

    • Jy11
      Conflicting results

      By Jy11 · Posted

      Would you also agree that being so close to the IgA deficient cut off is significant? We just have been told he’s not as just over into the not deficient category…   thank you so much for all the help so far, it’s been so helpful!
    • Scott Adams
      Conflicting results

      By Scott Adams · Posted

      One study showed that up to 44% of first degree relatives also have celiac disease, so his odds of having it are quite high. Also, if he were not IgA deficient his celiac disease test scores would likely have been much higher because they were based on the IgA antibodies.
    • trents
      Conflicting results

      By trents · Posted

      Statistically, the incidence of IBS and other bowel disorders is higher in the celiac population than it is in the general population. Still, I would take one thing at a time. There is significant reason to believe your son does have celiac disease and there is no nasty prep needed for that endoscopic procedure. Assuming that he does have either celiac disease or NCGS, it is likely that a gluten-free diet corrects his symptoms and there would be no need to pursue a lower GI and it's nasty prep.  I would also add that the immune system of a child his age is not mature. It's in flux. Because of this, celiac disease testing can yield erratic results. And I would also add that some experts believe that NCGS can be a precursor to the development of celiac disease. If this is true, there would seem to be transition phases. I hope you will keep us posted.
    • Jy11
      Conflicting results

      By Jy11 · Posted

      Thank you, I do feel the likelihood is high which is why I am reluctant to do a colonoscopy as I feel we will find the answer. Whatever the endoscopy says though and even if it were to be negative he will be going gluten free as the positive EMA has to mean something with symptoms and one parent coeliac.  But there is a niggling doubt as I try and make the right choice… I just want him to get better and be happy again! 
    • Scott Adams
      Conflicting results

      By Scott Adams · Posted

      As the article mentions: EMA-IgA (endomysial antibodies IgA) Blood Test for Celiac Disease: tTG-IgA (tissue transglutaminase IgA) Blood Test for Celiac Disease: So the likelihood is very high he has celiac disease, and even if the biopsy results turn out negative, I would still consider a gluten-free diet.
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