<<Disclaimer: Verify this information before applying it to your situation.>>
Summary, part three...
I was told I have one gene. My mother later discovered that she has =
celiac
disease........she is 79 and was having terrible diarrhea problems for a
long time before being tested. We are both doing great now that we are =
gf,
so I have no doubt that I inherited the disease from her.=20
-----------------
We had the whole family tested for gluten and casein
antibodies, as well as the genetic testing, through
Dr. Fine's lab.
I also have the "main gene" that predisposes one to CD
(HLA DQ2, I think it was). My husband and daughter
had a gene that was also linked with CD. Our son had
a gene that predisposes him to "gluten intolerance".
I thought that the questionnaire was probably for the
sake of their statistics and research, studying
genetics and noted ailments and symptoms.
I feel that the results of our lab tests are
corroborated by our experience.
---------------------
From what I've been reading in the research, you DO NOT have to have =
both genes (your physician is incorrect). If you have both genes, it is =
certain you have it (celiac diease). If you have only one gene, then you =
have the "propensity" for celiac (you may have it or you may not) -- =
that's where the antibody test comes in. If you have the antibodies, =
then you have celiac. Having one gene then validates the antibody =
findings.
The questionaire: Dr. Fine is conducting research (he does not have an =
practice, as such), so I'm sure he is collecting data. He is well =
published in many international journals: The Journal of Clinical =
Nutrition, Gastroenterology, and The Journal of Gastroenterology (just a =
few I can remember).=20
I have one gene (scientists have found two genes that predisposes one to =
celiac) -- one of the genes is actually more "prone to cause celiac" =
than the other. Any combination: either gene or both genes can cause the =
diease.
--------------------------
One of the numerous pieces of misinformation often promulgated on this =
listserv is
the notion that there is "a celiac gene". Celiac disease is a multi-gene =
disease
which also requires a non-genetic "trigger" to develop. There are two =
known genes
which, together, seem to account for about 50% of the cases of CD. No =
one yet
knows what the other genes are or how many of them there are.
This is why mainstream medicine does not accept genetic testing as =
appropriate for
CD.
-----------
The simplest way to get an answer to your questions is to e-mail back to =
Dr. Fine's office. I have done this before, and he continues with me=20
until it is clear
------------------
The two genes means both parents have celiac,whether with symptoms or =
silent celiac without symptoms.=20
when a person has one gene then you must go gluten free because sooner =
or later that person will develop it and or already has
---------------------
i had dr. fine's test and was told i had two genes. my daughter also =
has two=20
genes for cd. we both have had the same symptoms, altho she has been =
more=20
seriously affected than i. i've been diagnosed only recently.=20
after being on the gf diet i've noticed that i've felt so much better. =
don't=20
know if this answers your question, but the two genes have definitely =
been=20
true for us.
------------------------------------
I had the test & it reported two genes. I don't know if that matters or =
if
you only need one. It seems like that's something Dr. Fine should answer =
for
you. I had some questions after I got my results & he answered every =
email I
sent.
---------------------------
You have a good point. He should be able to do blind test if he is so=20
confidant. For some reason I don't believe those tests. When GF diet=20
improved jour health condition, just stick with it, because that is the =
most=20
relible test so far and is more economical, but there is no money for=20
doctors to be made.=20
---------------------------
If you have one gene, it means that you MAY develop CD sometime later in =
life. My granddaughter has one gene, may get it later in life. Her =
father has the same gene and already has CD with symptoms. So if you =
have 2 genes, just my opinion, I think you definitely will get or have =
CD now.=20
-----------------------
I don't think dr.s are anywhere close to having a definitive answer =
about
the genes. Someone very knowledgeable told me she had read there might =
be
as many as 20 genes involved. Our doctor said even after all the =
correct
genes are identified, there is still about 80% of genetic material that =
they
know very little about, that sort of controls or influences whether the
genes become activated (sorry, at this moment I cannot recall the =
correct
term he used for this material). I think you now have more information
about yourself and your genes than you had before, but it may be a long
while before any of us have the whole picture. =20
---------------------------
Susan, my daughter has one gene for CD. She has the one that is most =
commonly found in those with CD, the DQ2 marker. 95% of all celiacs =
have this marker. As for DQ8, only 5-10% of those with celiac have this =
marker. You need only one to have the disease, your ENT is mistaken. =
As for the questionnaire, that is customary. It is used for research =
purposes.
---------------------------
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
* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *
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