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More thoughts on unification of US Celiac groups.  This is thought provoking
and posted almost in its entirety.  My comments are added in brackets { }.

From: Gayle Kennedy <[log in to unmask]>

I'm behind you 100%.  We need a national organization that works.  We need a
medical advisory board that cares.  We need a food list, a prescription
medicine list, an over the counter drug list, a cosmetic list, etc. etc.  It
is possible, and with all these people on the LISTSERV, there has to be a
way of harnessing all that knowledge and energy.  There has to be a way of
having addenda lists for people with additional sensitivities like milk and
soy, or at least an advisory notice that says where to go to get help for
related sensitivities.

Perhaps we are wrong to think that this organization needs face to face
meetings.  Perhaps just communicating on this medium of computer wizardry is
the better answer. Getting information that is acurate to the
gastroenterologists would be a good place to start.  Would they be
receptive?  Not unless we have an MD who puts his stamp of approval on
whatever we do - and I think that is mandatory anyway.

I live in Ithaca, NY, and although there are a number of celiacs in Ithaca
who know one another, each case is unique and we have managed only two or
three meetings in three and a half years.  The need for meetings is to reach
those who are not on the internet and who are newly diagnosed.

Another need is to present a united front in dealing with hospital
dietitians and dentists and doctors and pharmacists and medical schools.  I
think Dr. Fasano's current research is going to be very helpful, assuming
that it turns out the way we all expect it will.  The international meeting
in August of 1999  should have some impact on celiac care in general, and
diagnosis, in particular.

I have saved your message from December 2nd, intending to respond at length,
but of course it is time to write Christmas cards and wrap packages and go
to luncheons and.....  Just the time it takes to read the celiac LIST mail
and respond to it  is almost more time than I have, and that is without any
intensive project.

When messages come in, like one this morning, asking about quinoa and
millet, I feel we are back at square one and spinning our wheels.  How do we
get new list members to read the FAQ, so we don't have to go over the same
information so many times.  And I don't know about you, but I rather wish
the recipes were on a separate list, as I have more recipes than I can
possibly use.  {I agree.}

Dr. Murray has been wonderful about responding to serious questions, but one
cannot blame him if he doesn't want to wade thru the usual repetitive drivel
and recipe stuff that is on this LIST.  It would be a pity if we
lost his help because we take up too much time with repetitions and
inconsequential pap.

I have no concrete plans.  What you are suggesting is very important, and
surely the existing celiac organizations are not filling the bill.  CSA/USA
is going to fight anything like this tooth and nail, as they think they
already have an umbrella organization that is nation wide, yet their vision
is very limited and they do the same thing again and again.  GIG in Seattle
seems to be the most heads up, if their publications are any indication.
Have you heard from any of them?

Cynthia Kupper, director of GIG called me.  GIG is cooperating with CDF out
of California in co-producing literature and Cynthia will be attending the
meeting that Ann Whelan is chairing for all the groups as a first step
toward unification.}  {It appears that leaders of CSA are still dragging
their feet...}

With doctors making so many mis- or missed diagnoses, and with each of us
having slightly different symptoms and different sensitivities, it is hard
to envision how we can form one unified body, but it should be possible.
Please keep us (The LIST) informed about whatever suggestions you receive.
And if you need help, I'll be happy to put some time in after January 1st.
Gayle Kennedy
{Thanks, Gayle.}