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  In the past couple of days, I have seen a portion on a TV show about
a chap with tourette syndrome who managed to cover his symptoms for
years by doing some silly, dance-like thing to cover the tick, or
making up a cough to cover his strange noises. If my memory is correct,
he was a musician, and he married a woman who eventually wrote a movie
script about his disease.  Then there was a program about someone who
was schizophrenic - not the pathetic man who took a gun into the
capitol in DC, but someone else - and there was a segment about a child
with autism.

It may be that a gluten-free diet would NOT have helped any of these
people.  It is equally possible that it would have helped one, two, or
even all three of them.  How are we going to get that word out?  Are
the medical schools teaching this information?  Are the media doing an
adequate job in reporting possible connections? I think the answer is,
"No."

It is my opinion that only a nationally known figure who has celiac
disease, or some other disease that is controlled by a gluten-free
diet, will bring all this information to the public and to the majority
of physicians.  I further think that only someone with MD, or PhD after
his name will have the clout necessary to reach the public.  Wonderful,
heart-wrenching personal stories like "What's Wrong With My Baby?,"
which was in Time magazine some years ago, are impressive to many of
us, but obviously have not been enough to reach the public in a lasting
manner.

The reason for public awareness is at least two fold.  First, there are
many people who are undiagnosed who might recognize themselves and move
ahead to a healthier, happier life.  In addition we might have food
manufacturers, culinary arts schools, restaurant chefs, schools for
professional dietitians and nutritionists, pharmacists , drug
manufacturers ,  people who edit food magazines, an even those who
write menus, who might begin to take seriously the need for proper
labeling, careful analysis, and identification of gluten-containing
ingredients and possible cross contamination.

Just imagine going to a restaurant and seeing the little crossed out
wheat head symbol next to anything that was gluten-free. Imagine a copy
of Gourmet Magazine with that symbol next to recipes that are safe for
celiacs. Even imagine a hospital menu that points out gluten-free
foods. [Even a hospital kitchen that knows how to provide gluten-free
food would be a step forward, in most cases.]

I've been editing my celiac files this morning, and am filled with
frustrations.  There are a couple of wonderful doctors who are on this
list who take the time to answer our technical questions and show a
real human and professional concern for our daily medical, emotional,
and scientific needs.  There is no adequate way to thank those doctors.

But there are many other doctors who are communicating with one
another who are leaving us out of the loop.  <underline>Is it possible
that there could be a summary of their discussions once a month, or
every fortnight, or on some other schedule, that would let us know what
they are saying and what issues they are discussing?</underline> It
will be those doctors who will need to write the articles and do the TV
interviews and make this cause known to the public.  Please don't
misunderstand me. Those doctors have a right to priviledged discussion
that would NOT be available to all celiacs on this list.  Their free,
private discussions may eventually result in medical break-throughs
that will be helpful to all of us.  But surely much of what they say is
not in that category.

Many of us are self-diagnosed.  Many doctors have completely missed
recognizing our symptoms. Probably those doctors are not on the
PROFESSIONAL CELIAC LIST. More's the pity!  Those who are on the MD
CELIAC LIST are probably the ones with the more open minds, anyway.  It
seems to me that we might occasionally add some useful, first-hand
information. I am not suggesting that the two lists be combined, and I
am not suggesting that we, willy-nilly, read or contribute to the
medical celiac LIST.  But I am saying that having some of that
information might be useful to us. And having some of our questions or
information available to the doctors might be useful to them.
Furthermore, as long as that information is completely out of our
reach, it continues to create a we-they thought pattern that is not
helpful for most of us patients, and may not even be too helpful for
the doctors.

It is possible that our list owners pass on some important messages
from this LIST to the MD LIST.  I hope that is the case.  I surely pass
on pages and pages from this LIST to my doctor.  He is most
appreciative.  I also take pages to my dentist and dental technician.
If our doctors are not on the professional list, perhaps if we had a
summary of the professinal discussion we could take that to our
personal MD/s and encourage them to become more involved.

Sorry to be so long winded. Maybe tomorrow's Oprah show and letters to
Ann Landers are our last, best hope...  Just musing...  Gayle K