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Date: | Sun, 5 Mar 2000 23:18:38 -0500 |
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<<Disclaimer: Verify this information before applying it to your situation.>>
My original post contained two questions. The first was about the tTG
test--whether it by itself was adequate. Because this test is so new, I
didn't get a lot of information on it--and the opinions were varied. In
fact, someone posted to the list today that the tTG contains EMA, IGG and
IGA test, which was not my understanding. Someone else suggested that the
tTG is used with EMA, IGG and IGA tests. Another person said that the tTG
test is the "best so far"--close to 100% in sensitivy AND specificity.
Another gave the following link:
article at http://www.ginet.com/papers/701to800/mpape744.htm
The responses to my second question were overwhelming against doing a
second biopsy, but of course the protocol that different doctors followed
are quite varied. A few said that if Kevin is doing well (growing, etc.),
there's no need to do another biopsy. And if he reacts to gluten (which he
doesn't), there would be no reason to do a biopsy. Here's a quick summary
of what others have done:
no bloodwork or biopsy--watch for growth
biopsy after 6 months, but no bloodwork
blood tests at 1 year check and none since--no biopsy because visible
results sufficient--BUT mom biopsied because results not visible
doctor presented biopsy as possibility (10 years ago)--family declined --
"standard" bloodwork yearly
family decided against biopsy--against dr. recommendation--weight gain,
general health improved so dramatically--blood tests back to normal
3 biopsies--1 at diagnosis, 1 after GF, 1 after gluten challenge (standard
protocol 10 years ago)--skipped 4th (after GF diet again) [I'm really
glad that is not longer standard protocol!!]
bloodwork after 6 months then bloodwork yearly--dr. does not believe in
redoing biopsy
Others suggested other bloodwork that should be done. These include:
CBC
nutrients
iron
eloctrolytes
liver
heart
kidney
thyroid
serum albumin
I think we got the doctor to order IGG and IGA antibody test (since that's
what our original baseline is). After we get blood results, we'll sit down
with the doctor to discuss face-to-face the need for a second biopsy.
Thanks for all the input!
Tracey Wolfskill
mom of Kevin 3yo w/Celiac and Brian 7yo no Celiac
Fort Worth, TX, USA
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