I always doubt myself when up against what a doctor tells you (yet, I'm not sure why because in my experience they've been wrong many times...still you like to think they should know), but I really don't think its true that you need TWO copies of the gene.

Two blood tests...sounds like they probably didn't include the antigliadin antibodies. Do you have copies of the lab? If not, request that much so you know exactly what they ran and exactly what the results were. They probably ran the anti-tTG and Total IgA. Some of the literature still recommends antigliadin antibodies for young children because the anti-tTG may not be positive; other literature says the anti-tTG is reliable in young children. Bottom line...none of the antibody tests are 100% accurate. Some studies show that as many as 20% of biopsy proven celiacs may be seronegative.

If you haven't yet, check out The Gluten File and read through the Diagnostic pages, including some of what is out there on antibody testing.

I understand your not wanting to put your daughter through an endoscopy unnecessarily. You would not be the first to skip a biopsy, and move directly to the diet. I did that with my young daughter (5 at the time), while we did the biopsy on my twelve year old because she wanted it. Just don't drop the ball altogether... and assume she can't have celiac disease because she only has one gene. That would not be a good reason to skip the biopsy, if you'd otherwise have it.

One way or another keep going down this path. You might want to request the antigliadin antibody tests assuming they were not run. That might give you a little more information before making the decision of whether to proceed to biopsy, or whether or not to move forward on the diet no matter what the biospy results might be. Some people just don't want to put there little ones through a biopsy, period. If you don't have those sort of reservations, then I'd say go through with the biopsy. She COULD show celiac disease despite negative blood tests.

She could also be negative for celiac disease, but still respond well to the diet. Happens all the time. You could skip the biopsy and let the diet speak to you. If she didn't improve, then you might still be faced with a biopsy in the future to look for other things. I talked this over with our pediatrician..my daughter had the weakest of the markers (positive antigliadin IgG). He actually supported my decision to try the diet. The GI would have preferred we did the biopsy, even though she thought celiac was a weak possibility.

Cara