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Wed, 7 Aug 2002 23:57:18 -0400 |
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<<Disclaimer: Verify this information before applying it to your situation.>>
Summary Part two:
----------------------------
I had the test by Fine -- have 2 identical HLA-DQ2,2 genes but he =
pointed
out that only 1 gene is necessary to be celiac and there are other genes
which predispose to celiac also. With 2 genes, celiac is MORE likely to
occur with gluten ingestion and it means that all of my children will =
have
at least 1 gene (from me) for celiac. But with only 1 gene, there still =
is
possibility of active celiac.
RE: questionnaire --
This is still a fairly new field: celiac and genetics and the many ways
celiac can present -- I just figured he is correlating symptoms w. =
genetic
results and tabulating some kind of summary - just research purposes, he
does do research in the field - there's still so much to learn.
If you've ever seen his lecture tapes, he speaks at length about his
research and his findings -- buy the tape if you see it being sold
anywhere - was about $15 - 1 1/2 hour long tape - I showed it to my =
support
group in 3 parts - very technical but really fascinating about his work.
Last year Dr. Catassi (with Dr. Faisano) spoke to our group. Last year
I also heard a talk on autoimmune diseases which included celiac at a
conference. All they mentioned was the association with HLA-DQ2 or DQ8
and that 90-95% percent of celiacs have one or the other. I also read
every journal article that I come across. There has been no mention of
needing two genes. If it were required, the frequency would be much
lower. Your doctor is mistaken.
---------------------------
I too ordered Dr. Fine's test for my daughter - and was told she was=20
gluten intolerant. I have since taken her to a very well respected GI =
(who's=20
speciality is Celiac), who told me there is NO conclusive medical =
research=20
to back Dr. Fine's tests. These tests have been found to not be a=20
determinant for Celiac. In so many words it sounds as though Dr. Fine =
has=20
found a good way to increase his income through the internet! I would =
be=20
very leary of what he has to say.
----------------------------continued--------------
I have one gene and am biopsy diagnosed celiac. Cynthia Rudert is my=20
gastro and she's on the medical advisory board for every major celiac in =
the US and some of the minor ones as well.
Your doc is misinformed about needing one gene or two. Also, my=20
daughter was tested per Rudert's recommendation and has one gene but was =
producing antibodies....alot of them. We got her off of gluten before=20
any damage developed though. With two genes your chances are something=20
like 90% of devloping celiac, with one gene it's 70% I think. Can't=20
remeber off hand.
Dr. Fine doesn't need the questionaire answered "in order to do the=20
test", he's just collecting info in order to ger a better picture of=20
what's happenign to who with one gene or two....on other words, what's=20
happening with people who have one gene, what's happening with people=20
who have two....similarities/differences in the two groups.
---------------------
I eagerly await your summary as I have been putting off the mouth swab =
gene test for some time now because I do sort of wonder if Dr. Fine is =
really legit (I believe he is sincere, but I suspect he may be =
considered a "quack"). I recall one of our gastroenterologists telling =
me that the gene test (bloodtests they can order, not the Dr. Fine swab) =
is a waste of time and money because you can have the gene and not =
develop Celiac - and I think that is true, since they say it takes an =
illness or stress to bring it on and so many are not diagnosed until =
much older, and did not suffer years before diagnosis...
I have better things to spend $149 on if it does not really help to rule =
it in or out (we know one son is exquisitely gluten intolerant, but =
husband's biopsy was neg, though I am still suspicious...).
* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *
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