<<Disclaimer: Verify this information before applying it to your situation.>>
Thanks to all you who wrote so fully and helpfully - and over Easter at
that. You are such a great group.
The majority came out in favour of Enterolab (these are some):
My husband's sister and I both have CD. His blood test was inconclusive,
his biopsy was negative. But he definitely had symptoms, so we did the
Enterolab testing and he was positive. He's very sensitive to gluten and
feels soooooo much better since going GF.
My daughter was diagnosed by Dr. Fine. You can trust his results. He also
diagnosed several people in our Dallas support group. My husband had many
tests run by Dr. Fine and he was the one that did the genetic test on him
and we discovered he has two genes has passed his CD along to our children.
My son tested out as a 10 on the Enterolab testing and has been off gluten
ever since with amazing improvement in his health. The Enterolab testing is
very helpful in picking out those people who are gluten intolerant. With low
number like this (I think the borderline positive starts at 10?), it's
probable that he doesn't have enough gut damage to test as CD.
The stool test is extremely accurate. And if you are conclusively diagnosed,
I would recommend all close relatives get tested as well.
The blood tests can be negative with active "sensitivity" or disease going
on. Our daughter's blood tests were positive, but my husband's were totally
negative. We tested the whole family with Enterolab, genes and stool, just
to see if it was any different. My husband was having symptoms, so it was
reassuring actually when Enterolab came back VERY positive to know that it
WAS his food making him sick and not something worse.
My husband was diagnosed mid 2006 - no stomach symptoms - major muscle and
nerve issues. The doctors suggested that he may have MS and even went as
far as almost getting him tested for Lou Gehrig's Disease! We had him
tested through enterolabs - and he was positive. He went on the gluten free
diet and after 8 months of excruciating pain (he couldn't even lift his arms
anymore) - it took about one month for him to notice SIGNIFICANT
IMPROVEMENT! It has now been 1 1/2 years for him and he is 100%!
I have used Enterolab for myself and my adult sons. We all tested positive
and we all have had improvements in health. One son's level was 14 - he had
terrible GI symptoms and they completely resolved on a GF diet. My test was
52 and my most severe symptom was peripheral neuropathy that has improved
with the GF diet.
but all my family members have used it, and gotten different results. The
inteersting thing is that we all married someone with DQ2, DQ8, or both.
Since I was diagnosed via biopsy and we know I have the gene, everyone else
in the family has used Enterolab. My daughter (who was positive on
Enterolab) suspected her husband had gluten sensitivity (not celiac) and had
him tested. His genetics came back as gluten sensitive (not celiac) but his
results were negative (under 10), so he was not required to go gluten free.
Someone asked if everyone tested positive with enterolab, but apparently
not.
Others were very skeptical:
One quoted a posting from American Celiac Disease Alliance: The tests being
conducted at Enterolab are not 'definitive' for celiac disease. In
reviewing information on the Enterolab website, it states they are testing
for 'gluten sensitivity' and not celiac disease. There are well accepted
criteria for the detection and diagnosis of celiac disease. The tests used
to fulfill these criteria have been subjected to scientific scrutiny and
validation. To our knowledge tests of antibodies in stool or saliva have not
been validated as a robust test for the diagnosis of celiac disease. Many
insurance companies base their decision to cover the costs of testing on the
scientific evidence that supports the testing of that individual
(indication) and the actual test used (validation).
One reported very contradictory results: ... my husband and I had the
genetic test and the stool test done there to see who had passed along the
genes to our daughter (dx by endoscopy and also blood test in 2003). It
turned out that my husband had 2 celiac disease genes and I had none- only
gluten sensitivity genes. Our entire household has been GF both in and
outside of our home since our daughter was dx, but according to the stool
test, I had celiac disease with a low reading not unlike your husband's. My
husband, with the two celiac disease genes, did not show positive, nor did
our daughter.
One pointed out: the IgA antibody can be elevated for a reasons other than
celiac, including false positives. And you may also know that the celiac
medical experts, like Peter Green at Columbia Presbyterian, do not consider
there to be any valid scientific basis for EnteroLab assessments.
One said: He and his lab may be perfectly legitimate, but he refuses to
submit his tests to the medical community at large for evaluation and
duplication. Personally, I would repeat the blood tests through a certified
lab - preferably one that is up to date on the celiac panel of tests.
Those who commented on our grandchildren, strongly recommended the whole
family was tested.
One suggested that if he had the blood tests at the doctor's office it would
likely be negative because with "Gluten Sensitivity" as opposed to "Celiac"
Disease the small intestine is usually not damaged enough to pick up
evidences of blood in the blood tests, which don't test for gluten
sensitivity.
I was also given a number of links:
www.theglutensyndrome.net
http://jccglutenfree.googlepages.com/glutensensitivityvsceliacdisease will
give you some information about gluten sensitivity.
http://jccglutenfre
<http://jccglutenfre%20e.googlepages.com/thegreyzoneandstooltesting>
e.googlepages.com/thegreyzoneandstooltesting and here is information about
stool testing.
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