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From:
Eleanor Symonds <[log in to unmask]>
Date:
Wed, 3 Dec 1997 10:58:40 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

Thanks to everyone who's replied to my post about the gluten challenge,
which is now half over. :)   I'm OK, but crave everything *except*
gluten products.  (Some people remarked that after being GF, ordinary
bread tastes doughy and has no flavour.  I agree 100%; you are not
missing anything, folks.)  Suggestions were: sips of coke for nausea,
smoking either tobacco or marijuana(!), or just taking it easy.
However, a few people have written to warn me that two weeks isn't long
enough.  This isn't necessarily true.  For many people, two weeks *is*
enough - in fact, damage often shows up within hours.  And I've received
mail from people who had positive biopsies after shorter challenges than
mine.  Of course, it could take a lot longer - even *years* before
damage shows up.  So, even if I went on a 6 month gluten challenge
(which there's no chance I would do!), I *still* wouldn't be sure.  You
have to draw the line somewhere.

Also, my GI recommends 2 weeks, and she sees a lot of celiac patients.
If the biopsy is negative, she'll support my staying GF, but would like
me to try eating small amounts of gluten to see if I tolerate it.  This
seems prudent on her part - nobody really knows whether or not there's
such a thing as transient, mild, or other non-celiac gluten sensitivity,
but it's a possibility.  Of course, if I did go back on gluten in any
amount, I'd want to have a biopsy in a year or two to make sure there's
no damage.

I also received the usual "you shouldn't have gone on a GF diet before
getting a biopsy".  But nobody's explained how I could have got to the
biopsy stage, without trying the GF diet!!!   Not only to convince the
doctor, but also to find out myself whether or not it might work.
There are many, many people with symptoms that could be CD-related, but
only a small minority of them actually have CD, even by the most extreme
statistics.  The biopsy is a sufficiently big deal (cost,
unpleasantness, risk) that it's unrealistic to expect everyone who feels
tired, or depressed, or has other atypical symptoms, to go to their
doctor and *insist* on having one.  (I realize I'm going against
"established opinion" on the list here.)

It seems that for the moment anyway, for those of us with vague or
atypical symptoms, no family history of CD, and no great interest in it
on the part of our doctors, a *short* trial of the GF diet - just long
enough to be sure it helps - is pretty much the only way to go.  (I
guess in countries where the blood test is more popular, it's another
option, but you still have the problem of false negatives, which is why
Canadian doctors don't tend to use it.)

Of course this isn't a medically recommended course of action, but then
I don't think there *is* one.... :(

By the way, as an interesting counterpoint to the "you need a longer
challenge" arguments, I received this note:

> in Sweden f.ex. at the first obvious symptoms the challenge is interrupted
> and the biopsy might even not be done.
> If I were you I'd stop immediately. Not because of eventual damage, but
> why provoke needless moodiness and illl-bieng?

Thanks again for your help and (GF) food for thought :)

Eleanor

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