Anti-endomysial Test

[dmchr4]

My 8 yo daughter had a blood test for celiacs two months ago (but no biopsy), then we went gluten free and she felt better, though she has ups and downs. Well, she was positive on the anti-gliadin, but not the antiendomysial blood test, and the doctor said she probably had celiacs. As I've done more research, I've found that the anti-endomysial blood test is over 99% specific to celiac disease. I thought that meant that if you are negative on that test then you don't have celiacs. Is that true? We actually had the ttG blood test done instead of the antiendomysial, which I guess is about the same thing, just a different viewpoint. When the dr. was first explaining the results, he said that a negative ttG only meant that she didn't have damage to her intestines. But then, when I was talking him to him at the followup appointment last week, I asked him about testing the other family members who didn't have any symptoms. He said not to bother because you can't have celiacs with out symptoms. He said that if you have damage to your intestines then you will have symptoms. So this is very confusing because first he basically says she has no damage to her insides and but she has celiacs, and then he says you can't have celiacs w/o damage and symptoms!

As I posted on the other thread, I think I read somewhere that you can have gluten intolerance w/o being celiacs. I asked the doctor about that, and he said yes, you can there are a myriad of reasons you could be gluten intolerant. And then he left it that.

Kind of frustrating to be getting all these different answers! I just have this sneaking suspicion that she doesn't actually have celiacs and that she has some other problem. I wish it were celiacs, because that would be an answer! I guess now I just need a definitive answer, because what this other doctor told me isn't making me feel too settled!

Molly