2 Testing Questions

[1974girl]

Ok...my girls go back to the GI on the 17th. This will be the 6th month mark. I have a few questions.

1) Celiac child (12 this month) had the EMA antibody. Will that go away or once positive always positive. I don't know if I should ask for that to be retested or not.

2) 9 year old sister tested negative in biopsy (only 1 though) and in blood a year and a half ago. 9th months later (Dec), at the diagnosis of her sister, they ran the blood tests again. She was weak positive in TTg but negative on EMA and negative on everything else. They told me she was not celiac but to retest her later. Research shows that if you don't have the EMA then there is a 10% chance you really do have celiac but 90% chance you don't. Just read a big study on that one! So, we are 90% sure that she doesn't have it. She also had vitamin tests run and all were in the normal range. Do I need to test her AGAIN at the 6th month mark or wait a year or two? I don't know how often to retest a sibling or how often my insurance would pay for it!

What say you?

[Skylark]

1) EMA should go away on the gluten-free diet. You should ask for retesting to see how she's doing. We've had people on the board with antibodies still at the 6-month mark so don't panic if it's still positive. In fact, you might want to wait a year.

2) You need to read more studies. TTG is considerably more sensitive than EMA in little kids. Positive TTG in a kid is typically >90% specific for celiac disease. Your daughter needs retesting, and also deamidated gliadin IgG.

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