<<Disclaimer: Verify this information before applying it to your situation.>>
I want to thank the people who wrote me to relate experiences they had that
were similar to the one I described. Here is a summary of their answers.
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THREE members of my family, myself included, tested negative on biopsy (all
done at different places, different states) but tested positive on blood
tests. Ironically, all three of us had severe symptoms.
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Your friend may be interested in knowing that two of my children are
diagnosed celiac IN SPITE of negative biopsies (and both were biopsied and
diagnosed by doctors at CNMC). First of all, I believe that not all
endoscopies involve biopsy...sometimes they just go in and look around, but
of course the celiac damage cannot be diagnosed without a biopsy. Secondly,
sometimes the biopsy "misses" the damaged areas of the gut, particularly if
the disease is in an early stage or the person didn't eat a lot of gluten.
Two of my kids are diagnosed based upon: serology, clinical presentation,
family history, genetic testing, and a pattern of symptomotolgy that occurs
while on a gluten-containing diet, and resolves while on a gluten-free diet.
I would be glad to be in touch with your friend directly, or you may forward
my e-mail to her, if you believe it would be helpful.
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I would ask how many samples were taken for biopsy during the endoscopy.
Many gastros only take 3 and that is not enough. There should be at least
12 taken and I personally would make sure the doc doing the endo and the doc
reading the samples have dxed celiac many times before and are not biased
against the disease. (I have heard now alot of chatter about celiac disease
being "a fad disease".
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She should ask for a copy of the lab report, so she can both confirm they
did a biopsy (preferably with more than one or two samples) and see EXACTLY
what the lab technician wrote -- they will almost never "diagnose" celiac
disease on the lab report, as the lab tech/doc is not the treating physician
and won't commit to a diagnosis. Instead, it may talk about marsh criteria
or "suggestive of" and "gluten enteropathy" or even mention lymphocytes. All
are indicators of CD. And she may find that the doc blew her off and didn't
do any biopsy at all (making the entire test a waste of money and time --
seeing redness does not a diagnosis make).
And of course, as you are telling her, the blood test should be done as
well.
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When our daughter's endoscopy was done the doctor never read them, he just
got a pathology report and it was a hospital that doesn't do a lot of
celiac. Call the celiac groups in your area. Ask them for a gastro who
does a lot of celiac. Tell the parent to get the biopsy slides from the
doctor or hospital and take them to a gastro who will read the slides
himself (not a tech or a nurse or somebody else).
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If they took the sample a few inches off it might not be accurate. Of
course the blood test has a 25% chance of being wrong so that would not
help.
I had a friend"s son who was having the same symptoms. His tests showed
that he did not have CD. After a year of being gluten-free he has gained
weight and no longer has diarrhea. I thought they were wrong and I was
wrong.
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I know of several people just like the one you describe - neg. biopsy, and
even neg. blood work, but WONDERFUL results with the GF diet. No, they don't
have celiac (actual damage to the small intestine) but they ARE Gluten
Sensitive - which can and does lead to many autoimmune disorders. Also, the
ones I know tested positive through stool & gene testing at Enterolab with
either single or double copies of the genes which predispose to celiac
and/or the gluten sensitivity.
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If it were me, I would suggest that she contact the doctor to ensure that
the correct diagnostic biopsies were taken and checked. It is sometimes
possible to see celiac damage when carrying out an endoscopy but I believe
this is rare.
I was diagnosed from a biopsy while they were investigating anaemia. At the
time of the biopsy they said that everything looked perfectly healthy.
Luckily they automatically carry out the biopsies when they do an endoscopy
for any reason. I did suggest Celiac as a possibility when I first visited
the doctor because of our family history of type 1 diabetes but she didn't
bother with a blood test at that point. They did carry out a blood test
after the biopsy result to confirm the diagnosis.
* Please remember some posters may be WHEAT-FREE, but not GLUTEN-FREE *
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