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Hello all,

My 4 year old son has been having stomach pain on a daily basis. Some diarrhea, some constipation. His grandmother has celiacs. He was tested and was negative for everything except for a positive EMA. He sees a GI in a couple weeks.

What are your thoughts on a possible diagnosis for him? From what I've read, a positive EMA is a sure celiac sign. But he was negative for the other antibodies? Do you think he will still need an endoscopy done? Thank you all in advance!

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I think it can be hard to get those other levels elevated enough, sometimes in a child.

 
  • "Anti-endomysial antibody test (EMA-IgA)—test specific for celiac disease. It is estimated that a person with an elevated level of EMA has an almost 100% chance of having celiac disease. However, this test is not as sensitive as the tTG-IgA test—about 5% to 10% of people with celiac disease in fact do not have a positive EMA test
  • HLA-DQ2 and HLA-DQ8—gene tests for celiac disease"

http://www.cureceliacdisease.org/screening/

 

 

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I am an oddball when it comes to celiac testing.  I tested positive to only the DGP IgA (even in follow-up testing).  Weird, but true.  That's why there a several celiac tests.  None are perfect.  People are not perfect.  That is why doctors still want to order an endoscopy (my biopsies revealed a Marsh Stage IIIB and my sympyoms was anemia, just anemia!) I would consider the endoscopy.  It sounds horrible, but he will be fine.   The genetic test will rule out celiac disease for life since you have to have the genes in order to possibly develop celiac disease, so that is an option.  It will not diagnose celiac disease though. 

Again, one positive is all it takes to go forward with an endoscopy.  

Edited by cyclinglady

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Thanks! I followed up with the pediatrician today and he is also anemic. Still have some tests pending after 3 weeks!! I feel like a jerk making him eat gluten when I know it is hurting him. But I know he has to keep eating it until all the testing is over!

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Hang in there mom! It will soon be over. Just stay strong. The anemia fits right in.

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