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I am hoping to get some good suggestions on what to do next with our ten-year-old son, Zach.  I guess I have to (sigh) give the whole story in order to get a good response.

About three or four years ago, based upon a conversation I had with another mom about her daughter, I asked our pediatrician if my son might have Celiac Sprue.  He said no, not if no one in our family had had it (I now know that is a quite uninformed answer).  I did not ask for testing at the time.  I did know at that time that Zach was sensitive to, if not allergic to, wheat.  When I asked about allergy testing, the pediatrician said that if I thought he was allergic, just not to give it to him (I know you are all wanting to wring his neck, as well as mine for not pushing the issue).

Anyway, fast forward to this year.  Zach's rash came back full blown, on the insides of both elbows this time.  We've moved and so have a new doc.  I did some more reading, and started wondering about Celiac again, and asked the new doctor.  He asked why I suspected it, and I replied that Zach has always gotten an excema-like skin rash when eating whole wheat, and he recently was fed some WW spaghetti at a friend's house (without being aware that it was WW) and the rash was terrible.  He also has the worse teeth in spite of the fact that his dental hygiene is the same as his siblings---he has had like 8 cavities while the other 4 children have had zero (five and ten-year-olds) to three (oldest, who is 18).  He is also small in weight and in the 25th percentile for height even though we both are tall and three of the other sibs are in the 95th percentile for height.  I know recessive traits can come into play, but three of the four grandparents are tall as well).  Also, my husband's sister was diagnosed with Crohn's a year or so ago, and I know that is aften a misdiagnosis for Celiac.

Anyway, this new doc ran some blood test, and he tested negative on the IgA and high positive on the IgG.  The pediatrician has admitted that he is not extremely well-versed on the subject, but suggested a colon biopsy.  This is where I am wondering exactly what to do.  We have had him on a gluten-free diet for the past six weeks.  The rash is still bothering him (it is possible that he either made a mistake or filched some forbidden foods at school).  I have read that blood tests may not show antibodies if there has not been significant colon damage; Zach is quite young and as a rule, we did not eat tons of wheat-based prducts anyway, so perhaps his villi are okay.

My husband and I, as well as the other kids, are are going to do the blood tests in January.  My questions are as follows:

1)  Should we subject Zach to the biopsy, when one of us could very well test positive and so we could do it instead?
2)  If Zach ends up being the one to have the biopsy done, does he need to begin consuming gluten again?
3)  Are there other, less-intrusive tests that could be done?
4)  Slightly unrelated, but are hard, large bellies in adults a symptom?  My husband's abdomen protrudes a LOT, but it is not fat---feels like a pregnant woman's.
5)  Are there sources to which I could refer our physician?  I read that perhaps 1 in 133 people are celiacs; in that case, he probably has more patients that could benefit from his knowledge, and he seems interested in learning more.

Thank you very much.  I have already learned a lot.

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