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Subject:
From:
Mike Sherman <[log in to unmask]>
Reply To:
Mike Sherman <[log in to unmask]>
Date:
Mon, 29 Dec 2003 15:14:35 -0500
Content-Type:
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<<Disclaimer: Verify this information before applying it to your situation.>>

Wow, this is almost impossible to summarize, but I'll try.  I am thinking
about putting together a word file where I cut and paste all responses
(except the people who begged me to keep their replies anonymous), if there
is any demand for it, so please e-mail me asking for a copy of that word
file if you want it.

1.  I received about 70 responses so far, and they're still rolling in.
Some kind of record?
2.  Many people told me they do the diet much in the same way as I
described -- but the consensus was that most didn't go so far as to eat
pizza or bread, just crossed their fingers on salad dressing, french fries
and the like.  That was helpful to me and I think I'll hold off on the
pizza for another day.  Many, however, drink beer and some have reactions
and some don't.
3.  Many praised me for being "brave" enough to make such a post, were
relieved that they are not alone, and warned me to be prepared for the
vitriol that was sure to come.  It is clear that many people are afraid to
post to this board for fear of what several called the "gluten police"
(those people asked me to keep their replies anonymous).  Many said my use
of the word "paranoia" struck a chord.  Several said my post motivated them
to unsubscribe, as they can't take any more e-mails about whether "turtle
breath" is GF.  I wonder whether useful information isn't posted, and
people with contributions have left, for these reasons.  I've decided,
especially after the response to my post, to stick around and simply delete
the posts that don't apply.
4.  About 10 were negative and quite nasty -- not quite wishing cancer on
me, but close.  Several clearly believe that anything less than 100% GF is
100% guaranteed to cause cancer and other problems.  I was called stupid
several times, I was compared to an alcoholic who thinks he can have one
drink, I was accused of being in denial, I was accused of being an enabler,
causing celiacs all over America to head to Gluten Hut, and I was accused
of being too young and naive to understand what I was saying and doing.
Negative or not, thank you for the responses.  The only responses I have to
these e-mails are: (1) I believe that I can keep a 97% GF diet without
regressing further, but I am sure many do not have that type of discipline,
so point taken; (2) I am not providing medical advice and I assume anyone
reading my post can decicde for himself or herself how or if to do the
diet.
5.  Several reprimanded me for being cavalier about hip fractures.  I
deserve this criticism and apologize; there's nothing mundane about a hip
fracture.  My point wasn't that a hip fracture is an OK thing to have, it
was to ask how far should one go simply to decrease the risk.  If you told
me to go 100% GF (as opposed to 97) or get a hip fracture at age 70 if I
live that long, and that was all that was at risk, I am not sure what I'd
say, and many agreed.
6.  Many people told me that their symptoms didn't allow them to be casual
in any way.  Understood.  This post wasn't really for you, but I got some
responses from some very nice people so thanks.
7.  Several warned me -- some in a nice way, others not -- that there is
evidence that asymptomatic celiacs nevertheless are causing long term
damage.  This is where the rubber meets the road, I guess.  Most people
seemed to analyze as if it were all or nothing -- GF or not GF -- which I
don't think is the same Q about the harm that may come from being mostly
GF.  And I know you can't draw medical conclusions from anecdotal evidence,
but as I said, a lot of people seem to be taking some chances and hoping
that their gut (pun intended) and blood tests guide them.  One of my
favorites pointed out that sitting in the sun, using cell phones and
breathing second hand smoke or all known health risks but we do them, at
least to some extent.
8.  Several used the comparison to rat poison, and several compared being
celiac to being preganant -- you are or you aren't.
9.  Many people seemed like kindred spirits to me -- identified with my
question, wrote funny and friendly replies, etc.  When I can sort through
them, I'll reply, since there are many of you who I'd like to keep in touch
with.  If there's anyone in the Philly area, let me know.
10.  One very thoughtful person recommended that I consider the possibility
that IF I have serious health problems some day, whether I will accept that
as a consequence of my actions (or write it off as having been inevitable),
or beat myself up later for having been so cavalier).  Good question.  I do
want to say, that the term "casual celiac" that I coined (and the cavalier
attitude of which I've been accused) is in my view overstated for someone
who "cheats" with soy sauce, barbecue sauce and salad dressing as opposed
to simply cutting down on glutem (which many do).
11.   One person suggested that my attitude would set research back -- the
theory being that no one will take our ailment seriously if we can sneak in
some gluten now and then.  Interesting, but I happen to disagree.  Lots of
people can't cheat at all; if small amounts of gluten cause long term
health effects, then I guess we'll start finding out when we have more
data, amking it even more compelling to find a "cure"; and if small amounts
of gluten turns out not to be harmful for some, then it isn't!

Good luck to all.  If anything new is posted I'll post another summary.

*Support summarization of posts, reply to the SENDER not the Celiac List*

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