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From:
Timia R Conjurske <[log in to unmask]>
Date:
Mon, 30 Apr 2001 19:58:32 EDT
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<<Disclaimer: Verify this information before applying it to your situation.>>

Thanks so much to all who responded to my question concerning Dr. Fine's
stool test for gluten sensitivity.  Some of you also asked for a summary
so I'll give it even though I know there just was one a few days ago.  My
friend has sent to Dr. Fine to get the test and will do it as soon as
possible.  I'm so thankful for all the helpfulness there is here!  I'll
post the replies:

All I can tell you is that Dr. Fine's stool tests are supposed to be much
more sensitive than any of the serum tests.  Dr. Fine claims that the
markers for gluten sensitivity will show up in a stool test years before
they will show up in a blood test.

I believe this test is very sensitive and accurate.  I recently had the
whole panel of tests offered by Entero Labs for gluten intolerance.  I
chose this because they were including the test for yeast sensitivity at
no charge.  It indicates a possibility of Crohn's Disease, which my
mother has, so I wanted to see if I might have the gene for that.  )I
didn't test positive for this.  Yea!)  I had been on the GF diet for 18
months as I was/am nursing our baby who is gluten intolerant.  We do eat
out occasionally and I am not radical about reading labels for myself,
so the test results for the stool test came back slightly elevated,
showing a gluten sensitivity.  When I received the genetic testing
results a few weeks later it also showed the genetic probability of my
having gluten intolerance, though not celiac disease yet, as the
malabsorption test came back with good results.

For 11 years my daughter has been very, very sick.  After 3 endoscopies
(and many other tests that I won't even mention because I would have to
go on for days) and the blood test for Celiac coming back negative, I
had my daughter do the gene test, gluten stool test and malabsorption
test.  The gene test showed she had 2 sets of the genes that predispose
you to have Celiac.  The gluten stool showed she was 10, below 10 is
normal.  The malabsorption test said she was fine.  If I was trying to
find the quickest, easiest, least expensive and least invasive, I would
definitely do the gluten stool test.

He is by far the best and most accurate. He is our medical advisor for
our support group in Dallas. I believe you will be happy with him. He
diagnosed my daughter several years go when he still had a small
practice in Baylor.

His research has advanced much since then.

CD runs in my family. I began to have intestinal problems a few years
ago , which got steadily more uncomfortable. Finally I ordered a stool
test and some blood tests- Ttg, Anti Enomysial antibodies, IgG, IgA. I
was positive for gluten sensitivity on Dr. Fine's stool test. The blood
tests (done elsewhere) were negative.  I had a biopsy / endoscopy which
was negative ( and done by Dr.Ciaran  Kelly in Boston who has a
reputation of knowing about CD, so I feel confident he searched as well
as anyone could). I had a horrible rash I thought might be DH, which was
biopsied, and that was negative.  I asked three docs what their opinion
was of Dr. Fine's tests.  They said biopsy is still the "gold standard";
his work is interesting, but has not been coorborated enough yet by
other researchers, so they cannot accept the stool test as a definitive
diagnosis. But, I still felt lousy, so the day after the biopsy I
decided to try an experiment for a year, and  I went GF. In only a few
days I noticed a definate decline in intestinal symptoms. I was
surprised to feel better so quickly- it did not take a year at all!
Within a few weeks I felt like a new person. Nearly 5 months later, I
still feel great, and have had only three episodes of reactions which I
have been able to track down to hidden gluten. The odd thing is that my
extreme migraines are almost completely gone. I have had three in the
last 5 months, each when we had big weather fronts coming through.
Before, I had at least two per week, and spent alot of money of migraine
drugs. So, in summary, the stool test results were supported by my own
experience going GF. (Note that If you were not eating gluten near the
time of the test, your results would be negative even if you have CD.)
I cannot vouch for it's accuracy in all cases, and the "medical
establishment"  does not accept it as of yet for definative diagnosis.
Evidently I do not have celiac disease, as Dr. Kelly found no intestinal
damage, but I am gluten intolerant. Dr. Fine's  stool test was accurate
for me, and going GF has improved my daily life considerably.

Very good responses on stool test.  He can even do the gene test.  I
helped a little girl with osteopenia and juvenile dermatomyositis get
tested for celiac.  She is now on the gluten free diet and improving
steadily.  Her two sisters are also celiac tested through Dr. Fine.

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