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Subject:
From:
Jim Lyles <[log in to unmask]>
Date:
Fri, 3 Mar 1995 11:11:27 EST
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<<Disclaimer:  Verify this information before applying it to your situation.>>

In response to Don Kasarda's reply to my statement about villi damage:

> May we have your references to the medical literature for this
> statement?  I have posted a reference to the contrary on the list.

and in response to another posting suggesting moderation regarding
gluten:

First of all, I should make it clear that I am not a medical
professional.  I should have made that clear in my previous posting.
When I reviewed it, I decided that I may have come across as too much of
an authority on celiac disease.  What I know about celiac disease is only
what I've learned from being the parent of two celiac children, an active
member of a local support group, from last year's American Celiac Society
and CSA/USA conferences, and from a good deal of reading.

I made the statement that ANY amount of gluten would cause some damage.
That statement is a conclusion I reached after hearing some of the
speakers at last year's American Celiacy Society conference.  Dr. Joseph
Murray, who subscribes to this list and frequently posts messages to it,
was one of the speakers.  In answer to the question, "How much gluten is
too much?", he stated that the goal should always be NO gluten, that
celiacs should treat gluten the way everyone else treats rat poison.  Dr.
Alessio Fasano, a pediatric gastroenterologist based in Baltimore, was
another speaker at this conference and voiced similar sentiments.  I've
also heard our group's physician advisor, Dr. Thomas Alexander, make
similar statements.  I've also read about strict adherence to the diet in
various articles.  After hearing from so many sources about strict
adherence to a completely gluten-free diet, I made the assumption that
any amount of gluten would cause some sort of damage, however slight, in
the small intestine.  I think my reasoning is fairly sound, however it is
only an assumption and could be wrong.

At this same conference, celiac disease was described as an autoimmune
disease, and not an allergy.  This may be the reason for such strict
adherence to a gluten free diet.  My understanding is that with some
allergies if you are able to stay below a certain threshold of the
allergic substance you can be fine.  Also, for some allergies the problem
is one of discomfort, not actual physical damage.  However, there are
also allergies in which even a small amount of the allergic substance can
have catastrophic effects.  People allergic to bee stings can die from a
single sting.  I read in the local paper last year of an eight year old
girl that died from SMELLING garbonzo beans because she was allergic to
them.  (Fortunately, celiacs don't have to worry about immediate, deadly
reactions to gluten.)  So even if celiac disease is an allergy, I am not
willing to accept the idea that a small amount of gluten is okay as long
as it stays below a certain threshold.

As for grain-based alcohol:  I do have an article which suggests that it
should be safe for celiacs.  The article stresses that no gluten could
transfer through the distillation process.  This may be correct, and if
incorrect, the amount of gluten would be very small.  However, my wife
and I have chosen to play it safe and simply avoid grain-based alcohol.
We take the same approach to malt flavoring, wheat starch, and any other
substances derived from gluten sources.  Our motto has been "better safe
than sorry", especially since the "sorry" part may not come to light
until decades have passed.

There appears to be a long-term risk of lymphoma or carcinoma in the
small intestine associated with untreated celiacs.  It may take decades
to develop.  I don't know if a small amount of gluten increases that risk
or not.  Since we don't know, my wife and I have chosen to have our two
celiac children on a very strict gluten-free diet.

I'm sure that some celiacs won't agree with our rather strict approach to
this diet.  We each must make our own choices regarding the diet, and I
would not presume to pass judgement on anyone that makes a different
choice than I make.

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