<<Disclaimer: Verify this information before applying it to your situation.>>

Thanks for the great responses. Hope this information is helpful to the
group.


I have just read that there are genetic markers for CD. And that they can be
>used, in conjunction with other tests to rule OUT CD but not to confirm
>that one has CD. More than 90 percent to Celiacs have these markers
>according the article I just read.
>
>My question: Has anyone on this list done the genetic testing? What
>were the results and were the costs prohibitive?


Remember though: Almost ten percent of celiacs do not have the markers.


I neglected to answer the second part of your question - test results.
My results stated that I carry both the HLA DQ2 and HLA DQ8, and
therefore each of my parents and each of my children has at least one
copy of one of those markers.

I don't understand what was meant if the article you read if it stated
that the genetic tests can be used to rule out CD.  My understanding is
that although MOST celiacs will have at least one of these two markers,
a small percentage has neither.  Therefore the absence of either of the
genetic markers can not rule out CD, nor can the presence of one or both
markers be a diagnosis for CD.


I had genetic testing done last summer with Dr. Fine.  He has a web site
and explains the different tests (Finerhealth.com then click on
Entrolab) His testing is somewhat controversial but as far as I know
genetic testing is pretty clear cut.  With shipping costs it was $168.
The swabbing for DNA is simple and easy (inside the cheek).  It didn't
really answer my question, if I was celiac or not. Dr. Murray has said
(at an LA conf. last Nov).  95 - 99% of celiacs have either DQ HLA 2 or
8 and 99% certain you can't be celiac if you don't have one of the two.
I didn't have either one but did have 2 copies of another gene that some
other researchers believe may predispose you to gluten sensitivity. I
definitely am gluten sensitive and am very glad I had the testing done.
I just think there is a lot they don't know yet and the next few years
should be interesting. Hope you do a summary if the info you get warrants it.


My daughter's tests just came back last Thursday.  Her DQ2 was positive, her
DQ8 was negative.  The DQ2 marker is found in 95% of all Celiacs, the DQ8 is
found in a very low percentage.  You are correct, positive test results
don't mean that an individual has the disease but rather they are
predisposed to the disease, at some point a trigger will most probably bring
on the disease.  In my daughter's case she had symptoms but her biopsies
were negative.  I am very happy that I specifically requested that the HLA
typing be done, for I have an absolute definitive diagnosis.


I had genetic testing done 11 years ago on myself and my two daughters, 4
and 9. I tested positive, which made sense because I was diagnosed 20
years ago. My 9-year-old was negative, so she's in the clear, but my
4-year-old was positive, which made sense because she already had a
history of extreme celiac reactions to gluten. The value of this was the
all-clear for the older daughter, and the confirmation for the younger.
I'm glad we had the test.

Even if I could remember how much it cost, I'm sure that has changed in
the last 11 years.


Have not had genetic testing, but was told when first child diagnosed, that
child I was carrying 1 in 4 chance be Celiac, 2 in 4 of being carrier, and 1
in 4 of beeing free.

Both children Celiac, I am adult onset Celiac.

You can have the gene test by logging on to www.enterolab.com. They have
complete testing for Celiac disease including gene testing.  Good luck.


My grandson's allergist did this testing on my grandson.  He was 7.  It
came out that he had two genetic markers for CD, one from each parent.
My daughter, after years of pleading, finally got him tested.  He has
serious CD and malabsorption.  He has been GF for about 3 weeks.  He
told his mother he feels  "GREAT".


We went thru Dr. Fine - www.enterolab.com and got my daughter tested for
Celiac by stool and also did the gene testing in December, 2000.  I
believe it was between $200-$300 - the best money I ever spent.  We
spent 11 years years going to every single specialist, Children's
Hospital, psychiatrists, pediatricians, hospitals, etc. - thousands and
thousands of dollars in medical bills.  My daughter has 2 sets of the
HLA-DQ2 gene marker that predisposes you for Celiac (one from each
parent - one Italian, one Irish - the kid didn't stand a chance :-).  I
had myself and my brother tested for Celiac in November, 2001 by the
stool test - we both have Celiact also.  After testing my daughter's
genes, I didn't feel it necessary to test mine or my brother's.


We had the genetic testing run on our three celiacs -- husband and
two kids. All have the genetic marker.

Our insurance covered the test 100%, I don't know what the cost
would be without.


I had tests done by Enterlab (Dr. Fine) and the complete set for CD was
about 350.00. I was shown to have both markers. This was not a blood
test but tissue from inside the mouth.


I went gluten-free before I could get an antibody
test, so I decided to take a gene test.  I had it done
at Enterolab for $149 dollars.  They are on the web at
http://www.enterolab.com.  It turned out that I had
two of the genes that predispose me to celiac disease.

 The actual test results are attached to this e-mail.


I have had CD for 5 or 6 years. I had the genetic testing and found that
I had two copies of the gene that most often predisposes one to CD,
which means that each of my children will get one copy.  So then my
husband had the test done, the idea being that if he didn't have the
gene, our children would know they had exactly one copy. We didn't think
he was a celiac, but he showed up with one copy and has begun eating
what I eat. His results arrived after Christmas. I think I see some
improvement, but it's a little early to tell.  It's a lot better to have
just one copy of the gene than two. We did our testing with Dr. Fine's
website.  I didn't really want to charge it to Medicare, and don't know
that they would have paid anyhow. Dr. Fine doesn't file for insurance,
and I don't have any way of know whether regular insurance would pay. We
got the whole panel of tests at once, but could have opted for the gene
test alone.

There was recently a summary on insurance for people who have celiac
disease, and it sounded like if you were not part of a group, you might
have trouble getting coverage if you didn't already have it. Apparently
insurance companies aren't too familiar with celiac disease. I believe
all that will change in a few years. Thankfully, things are changing rapidly.


I am curious with what information you get -- especially what tests
people recommend.  Currently, my son is the only one in my family that
has active CD.  We are trying to determine if my other son or daughter
are at a risk of developing it especially since I have kept my daughter
GF since she was born (she is now 2).  I am with an HMO so requesting
tests are somewhat a challenge.  The regular celiac panel isn't a
problem for me.  We recently did some very bottom line genetic testing
to determine what DR genes each of us has.  Now I am pushing to go one
step further and determine if there is a DQ2 disequilibrium involved
there.  If there should be something else that needs to be tested, I
would like to know so I can try to get these tests also scheduled.
Basically it has been taking me close to 6 months to convince the doctor
that this is needed.  If you have any documentation, that would make it
easier for me to prove my point, that would be great.  They have already
turned down Dr. Fine's tests.


Yes, I have had genetic testing done through enterolab.com.  That is Dr.
Finer's lab in Texas and it has been used by many of us on the listserve.
My genetic markers were HLA DQ8.  I had 2 out of 2 possible genes, meaning I
got one gene from each parent - luck of the draw.  It also means I passed
one of those identical genes on to our son.  He doesn't seem to have any
obvious problems, and never has, and he's now 30 yrs.

Anyway, it is a very simple test - just take swabs of cells from the insides
of the cheeks with a q-tip and send it back to the lab within a specific
amount of time.

I had mine done one year ago and it cost $149.00 + $20.00 overnite express
delivery.

For me, it was what I needed to know to confirm that I needed to follow a
gluten-free diet.  My mother's father died of colon cancer at age 62, after
being ill most of his life.  The remedy then was to eat bread and milk,
which was the worst thing he could have done.   My father had horrible
digestive problems all his adult life and was 5'10" and weighed 130 at his
heaviest.

I had already taken myself off grains and dairy products by the time I was
49, so the blood screen tests showed nothing.   But I'm definitely
gluten-intolerant, if not celiac.   The smallest amount just blows me out of
the water.

I'd recommend the test, if there's any question about what you inherited
from your parents/grandparents.