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I seem to have a tiger by the tail, and I don't know what to do next, so I
am writing to ask advice from the LIST.  HELP, please.

A number of people have responded to my suggestion that perhaps The
President is a celiac and that we could all benefit from contacting him
about celiac disease. If Mr. Clinton is really sensitive to gluten and does
not just have a wheat allergy - I still don't completely understand the
difference - does he know that he should not drink beer nor most hard
liquor?  Do he and his chef (and the doctor involved) know about soy sauce
and vanilla?  Is he aware that there is wheat in most meat coatings and in
catsup?  And does he know that wheat/gluten sensitivities can make one
fuzzy headed or slow in mental reactions, or irrationally angry? Is he
aware that failure to avoid wheat containing foods might lead to lymphoma?

A number of people have written to suggest that we start a letter (e-mail)
campaign, giving Mr. Clinton the benefit of the aggregate knowledge of this
LIST. The question is whether we could possibly get through all the
secretaries and actually reach The President, or whether it would be better
to address our letters to his chef - or even his doctor?? Perhaps all
three...address messages to Pres. Clinton with a copies to the others.

>Next point - what to write about.  A list of products containing wheat
>should surely be on the list.   How about hydrolized vegetable protein or
>vanilla? What about a copy of the Frequently Asked Question list with
>answers.  He also should know the different kinds of symptoms that can be
>caused by wheat. He might be interested in learning how hard it is for an
>average American to get a diagnosis.
>
>It may be important to know whether he is sensitive only to wheat, or is
>he also, perhaps without knowing it, sensitive to rye, barley, and oats?
>The medical professionals seem to draw a distinct line between allergy and
>celiac...I find that line fuzzy and confusing and more like a continuum,
>but the MDs say it has something to do with histamine reactions. Perhaps
>some professional can help him with that point.
>
>I see this as an enormous chance to help The President with a health
>problem.  More than that, I think it could affect the way he runs the
>country. (WOW!, have I got a nerve, suggesting something as big as THAT!!)
>As I am one who is mentally bothered when I ingest wheat, I see the
>latter as a real possibility. I also develop laryngitis and a generally
>tired voice when I eat gluten, so I have paid attention to his raspy voice
>and wondered if there was a connection.

If we sent lots and lots of letters about celiac and SOMEONE at the White
House really read them and paid attention, we might draw a whole lot of
attention to the problems of wheat sensitivity and/or celiac disease.
Months ago I wrote a post saying we needed a celebrity with the disease to
give us some real publicity, and I can't think of anyone more in the public
eye than The President.  In that earlier post I had suggested that Audrey
Hepburn might have been suffering from undiagnosed celiac disease, and also
Jacqueline Kennedy. A couple of people agreed with me, especially about
Miss Hepburn, but the issue was dropped. Perhaps a letter to All Things
Considered on National Public Radio, or to the Jim Leher News Hour...

>There are almost 2000 people on this list.  If we could get the e-mail
>address of the White House (and it is publicly available, I just don't
>know where, but I'll call my Congressman's office tomorrow and find out)
>and get even one quarter of our membership to send messages at the same
>time, or at least on the same day, it should have some sort of impact.  We
>celiacs need public awareness to get funding for research.  We need
>national laws about truth in labeling that is a bit more precise than the
>existing laws. We need help with food in hospitals, schools, and nursing
>homes. The White House might be helpful if they realized that so many
>people have celiac disease and how little is known about how to deal with
>it medically.
>
>Well, I'm meandering thru this idea, and thinking on the screen.  We seem
>to have a possible breakthrough, and what I intended as a slightly
>whimsical suggestion seems to have taken off and almost has a life of its
>own. We can let the whole thing drop right here, or we can all band
>together and perhaps make something happen.
>
>If you have any suggestions or ideas on what to do or not do, I would
>really like to see some discussion about this. It might just be helpful
>for all of us.

 Gayle Kennedy [log in to unmask]