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Dear List,

My humble apologies for taking so very long to summarize the e-mails
I received. Thank you, each one, for having taken the time to respond
and share your experiences.

My original post back in March had to do with what our pediatric
gastro doctor here in Israel said - ie. that only 1 biopsy is done
these days to confirm celiac disease and that challenges are no
longer done at all.

The overwhelming response I received from list members who wrote me
was that this is the prevailing school in the US these days as well.
Following an initial biopsy to determine villi damage (and not all
respondents did even this), yearly (or even every 2 years) blood
tests are done to measure compliance, as well as follow-up exams with
the celiac specialist/gasto/ped. Several commented that the proof is
in how you feel on the gf diet.  If you feel better why bother with
the challenge or the additional biopsy? Why feel that sick again?

On the other hand, although blood tests are pretty conclusive, if you
say that you were originally "biopsy diagnosed", no one will argue
with the diagnosis since that is the "gold standard". (Though my
question actually dealt with biopsies subsequent the original
diagnosis.)

One person added that she was sent for testing at enterolab
(http://www.enterolab.com) and is to go back after a year.
Apparently, enterolab checks stool samples as well to see if there
are antibodies still in your system, and how much of a problem you
have with malabsorption. This form of testing is supposed to be more
accurate than the standard biopsies and blood tests as CD can damage
more than just your intestines.

Someone from Oregon stated: The only other follow-up suggestions are
from a GI specialist who said it's worthwhile to have an endoscope
every five years with biopsy to confirm there are not any cancer type
cells or other changes noticeable. The health risks are too great to
do a challenge after going GF and it was not necessary.

However, 2 patients at Celiac Center at Columbia Hospital in New York
City said that her doctor recommended a repeat biopsy after 2 years
on the diet to ensure that the villi had actually healed. But this
was definitely the minority opinion.

Someone else responded: The majority of doctors in the US are about
10 years behind the European community which has found that gluten
challenges tend to increase one's risk of additional autoimmune
disorders. An additional factor is that many in the US are told by
their doctors to try the g.f. without adequate testing or diagnosis
themselves and begin the diet again without diagnostic testing.
Trying to diagnosis celiac once gluten has been removed is a very
difficult process.

That sums up about 25 responses. Hope this has been helpful.

Be well y'all,
Sharon Marcus
Israel

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