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Dr Hill just called. He has looked at the slides, with his trusted
pathologist. He said he saw nothing there to indicate CD. "does not show
obvious CD" He said that since Ben's lactose response was very abnormal,
we should go LF but also stay GF for the time being. He asked how Ben is
doing and I had to say that he is still having symptoms almost every day,
after about a week and a half GF. He said that if lactose is the problem,
Ben should resolve within 3 or 4 days and I should call him next week, one
way or the other. He knows that Ben reacted well to the GF diet before, as
well as the LF diet, but that he didn't do them at the same time.

He said he "can't call him celiac," and mentioned that this is what
can happen after being GF and then doing the challenge. Sorta makes me
feel that we did the biopsy too soon, but he is the one who made that
decision so I'll have to drop it. It was after about 6 weeks of the gluten
challenge, and two of those weeks included daily diarrhea.

If Ben improves on the LF diet, we have to stay LF and perhaps in a few
weeks, after he has had a chance to recover, Dr Hill might allow him to
eat gluten again, to see what happens. He also said that perhaps he should
be tested again, when he is a teen, after eating gluten for a few years
and if he develops symptoms.

He was really at a loss, and admitted it. Can Ben be simply "allergic" or
sensitive to gluten without being celiac? I believe so. I told Dr Hill
that this time Ben is being "rebellious" about the gluten...he won't eat
it without permission, but I think the reality of it is sinking in. I
think he would rather be without dairy than without gluten foods! The fact
that we and his teachers saw such a dramatic difference during the spring,
though, leads me to believe that he should not eat gluten, regardless of
whether he is celiac or not. At least if he isn't celiac, and he has an
accident, it won't be dangerous.

I think we have done all we can but it still feels wishy-washy!

Anne Washburn
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Co-owner, APH - Association of Personal Historians List