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Subject:
From:
Valerie Wells <[log in to unmask]>
Date:
Mon, 16 Apr 2001 23:13:41 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

Friends, I've been asked a series of questions by several list members
regarding the EnteroLab test for the genes that predispose a person for
gluten sensitivity.  I'm not a doctor or a lab technician, but I'll give
you my best guess as I try to answer these Q's. :o) This is how I
understand it:

Q: Wow!  I had not heard of this test!  Any other details I need to know?

A: It's bloodless, painless & quick to take the sample from the inside of
your cheeks!  Then you just mail it off.  The results will tell you if
you have the genetic predisposition for celiac disease, microscopic
colitis, & other autoimmune diseases.  For me, it's a godsend.  I have
all the symptoms of celiac & the genotype so that's all I need to know
that I should be GF for life.  You will find information about this test
here:  http://www.enterolab.com

Q: Where did you find out about this test?

A:  I found it by searching the web, but Dr. Fine is well respected in
the medical community.  I got a recommendation for his tests from the
secretary of a doctor at the University of Utah school of medicine where
Dr. Fine once served on the faculty (if I remember correctly).  There may
be other labs that perform the same test, but I have no experience with
them.

Q:Why are blood tests hit or miss?

A: Because the antigliadin antibodies (AGA) react to gluten in the gut,
not in the blood stream.  You may have AGA in the gut long before there
is sufficient concentration of AGA in the blood stream for an elevated
serum level.  [Enterolab tests for AGA in the stool where they are most
concentrated.]

Q: Why can biopsy's be inconclusive?

A: Because celiac disease causes lesions or damaged spots in the
intestines that can only be detected with a microscope.  The endoscope
used to take biopsies can easily miss the lesions so the biopsy results
are often false negative while the person continues to suffer with the
disease.  Some very clever person must have thought, "there's got to be a
better way," and has found it.

Q: Now explain again, which genes you have. Obviously the one for Celiac?
But what is the other one?  Are you sure your kids will get them or is
sort of like a random thing?

A: I have two similar but different genes that are both predispose me to
celiac disease -- HLA-DQ1 and HLA-DQ2.  The lab report states "EACH of
your parents, and ALL of your children will possess at least one copy of
the gene as well." (Capitals added for emphasis!)

Q: Is this something new?  It was my understanding that the only sure way
to diagnose celiac disease was through an endoscopy & blood test.

A: I don't know how new it is & I don't even know if other labs perform
the same test. It is not a diagnosis for celiac disease.  It is a test
that will tell you if you are predisposed to celiac.  My lab report says,
"two copies of this gene [as I have] is an even stronger predisposition
than having one gene, and the resultant immunologic gluten sensitivity
and disease may be more severe."  The biopsy is still proof positive that
you DO have CD, but it's not 100% that you DON'T have CD.  For me, it was
my only choice.  Since I can't tolerate the gluten challenge that is
necessary for a positive blood test and follow up biopsy, I'm very happy
to have a non-invasive gene test.

Q: I am biopsy diagnosed celiac.  Should I have the gene test?  What
about my kids?

A: You don't need it to know that you are predisposed to CD because you
already have it.  But, testing could save your children & family members
quite a bit of grief & money in the long run if they knew that they were
or were not predisposed to gluten sensitivity.  I plan to have other
members of my family tested as I can afford it.  My hubby will be next.

        ~Valerie in Tacoma,WA [I know I sound like a planted advertisement for
EnteroLab.  But, I assure you I have no connection with EnteroLab other
than being a happy onetime recipient of they services.]

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