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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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