<<Disclaimer: Verify this information before applying it to your situation.>>
Original Message:
I had Dr. Fine's gene test done and got the results back via email which =
stated that I had the main gene that predisposes you to Celiac Disease. =
When I told my ENT about this, he said that he thought that you had to =
have two genes in order to develop CD. Anyway, my question is, of the =
people on the list who were tested, how many were told they had two =
genes or one gene? The email that I got said nothing about needing two =
genes to develop CD, but I have read about needing two genes in a couple =
of other places in the past. Can anyone out there explain this? Also, =
why did he need a questionnaire filled out about symptoms in order to =
test DNA? It made me feel a bit like I was giving the answer to the =
question before the test was done. =20
8-7-02
Sorry about the length of this, but since I had so many interesting and =
varied responses, I felt it would be best to post the majority of the =
responses and let you guys decide for yourselves. My doctor said he =
"thought" you had to have two genes, but was not sure. He is an ENT and =
he is not treating me for CD. As far as the test goes, after reading =
the responses, I feel that Dr. Fine would have answered my questions =
since he did this for anyone else who asked. The reason I did not ask =
was because the email that was sent to me told me to call and set up an =
appointment for a consultation, which I felt would mean even more money. =
I now know (from reading the responses) that I could have either =
emailed him or called and he would have answered my questions, and =
hopefully, without further charges. =20
It would have been better to have both an email and a mailed paper =
copy of my gene test with a more thorough explanation of the test =
results. I now personally feel that he sent the questionnaire for =
research only and he is sincere. I do not know how I feel about the =
accuracy of the test since we know so little about it. In my case, I =
can say "yes, it seems to be right", but for others, that may not be the =
case. Nobody else in my family has ever been diagnosed with CD but I =
have some suspicious family members with lots of symptoms. We all have =
some of those, I am sure.
---------------------------------
RESPONSES:
I believe if both of your parents have one gene, you will have two genes =
and definitely develop celiac disease. If only one parent has the gene, =
you will have one gene and may still develop celiac disease. Your =
chances would be diminished though.=20
---------------------------
I work for a genecist and in order for the insurance company to pay for =
the testing, reasons need to be given to validate suspicions. I will =
find out what I can re: the need for one gene or two in celiac disease.. =
In most diseases we see (not Celiac), both parents need to donate an =
affected gene to create a child with the disease. =20
----------------------
It only takes one gene to develop celiac disease. Maybe there is more =
of a
likelihood of CD of there are two genes?
I believe the questions are just for statistical purposes.
I tested positive for one gene. I had the test because of our children =
with
CD, but have not had them genetically tested yet. I had no symptoms (I
thought) until I went off gluten and realized it made my stomach bloat =
when
I ate gluten. I have always had a bit of a 'tummy' even though I have
always been thin. Wish I had known about the gluten connection 20 years
ago. :) I have bad teeth, even though I take care of them, and am a =
little
under average height.
-------------------------------
I believe two genes makes it much more likely that the celiac tendency =
will be triggered.
----------------------------
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.
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* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *
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