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WARNING:  This is fairly long!

I, too, think that Bonnie raises an interesting issue however, I resent
the suggestion that celiacs who try to maintain a 100% GF diet are
"fanatics."  I think the various postings make it clear that this is a
very personal determination and I agree with that position.

Having said that, I would simply like to say that by avoiding "unknowns"
(i.e.  products that I haven't verified that "appear" to be GF according
to the ingr. listed, food that has been prepared by others and I am unable
to learn all the ingr. prior to ingestion, etc.) has really cut down on
the number of mysterious set-backs that plagued me when I first embarked
on this GF life 9 years ago.  Yet, I can see where someone could get the
idea of "hypervigilance" from reading some of the postings on the list.
For example, I agree with the idea that a shampoo containing wheat germ
oil (I happen to use one containing oat extract) should not cause any
problems for an adult celiac (who can be counted on not to swallow their
rinse water!) however it *does* present a very real problem for someone
with DH -- a fair number of subscribers to this list.  We need to keep in
mind that we don't all have the exact same health issues and to respect
others' particular concerns.  We need to be clear in our postings because
it *can* be confusing -- and not just for the recently diagnosed.

On the other hand, I am not as concerned with keeping to the GF diet
because of the possibility of lymphoma as I am with the possibility of
refractory sprue -- which was raised as a distinct possibility about a
year and a half ago when I was getting gluten from some unknown source
(and I was being a hypervigilant paranoid!).  The frustration I felt and
the limitations the chronic symptoms placed on me were horrible.  That is
why I will not knowingly eat gluten, even the trace amounts in Rice Dream.
The amount that can be ingested unknowingly can really add up and make a
difference.  Fortunately, I am *not* asymptomatic.

The fact that I could be that ill in spite of adhering to the diet may
have made me, in some people's eyes, "hypervigilant" and "paranoid" but I
don't think it is a fair assessment for one outside the celiac community
to make.  The comparison to one who goes into anaphalactic shock and, yes,
a comparison to diabetes is perfectly appropriate.  These are health
issues that are better understood and accepted. We need to continue to be
vocal and perhaps bear in mind that as we call and write to manufacturers
that we are "ambassadors" for our community.

Sorry this turned out to be so lengthy.

Jane (in VA, USA)
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