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Hi everyone,

I have some questions on genetic testing for celiac disease/gluten 
intolerance. As a brief intro to our story, our whole family has been 
gluten free for many months now after realizing that this was the cause 
of my daughter's intestinal problems (among many other symptoms). My 
middle daughter (12) and I both had a long list of applicable symptoms 
which cleared dramatically upon going gluten-free, and we both get quite 
sick now whenever we get "gluttened" accidentally. There's little doubt 
in our minds about the two of us having an intolerance if not full blown 
CD. My other two children have milder symptoms -- the symptoms of my son 
(10) generally correlate to what my middle daughter experienced at his 
age, though. (Her GI symptoms kicked into high gear at puberty.) My 
other daughter (14) used to have regular stomach problems and canker 
sores, which have diminished both in her teens (which I understand is 
normal) and in going GF. My husband's main complaint was a heavy 
fatigue, which lifted with going GF. My husband and I both have parents 
with type 1 diabetes, and my mother is also a poster child of CD symptoms.

In terms of our personal diagnosis, we've decided to start with the 
genetic testing and see where that takes us. We feel that at least two 
of us can't go the biopsy route because we'd become too ill trying to 
"re-gluten" ourselves enough to see any result. Since we're hoping to be 
self-employed in the near future and thus dependent upon private health 
insurance, we would also greatly prefer to privately diagnose this as 
much as possible to avoid the higher insurance premiums.

My first question -- with five of us, testing would be quite expensive. 
Do we need to test all five of us, or is there some way to backtrack, 
for example, from testing the children to know whether only one or both 
parents carry the genes? Is there any subset of us for which testing 
would be sufficient?

Second, am I correct in thinking that, as a second step, for those which 
carry the gene, a blood antibody test or stool test would help to 
determine whether the intolerance is active?

I realize that this isn't the conventional route per se, but we're 
thinking this is the best route for our family at this point. I also 
realize it's not ultra-conclusive, but it seems that it would give us a 
fairly certain probability which would either justify our staying on the 
diet or looking for other causes. Is that correct?

Thanks for the help, and I'd be happy to summarize the responses.

Cheers,
Deb

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