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>To all the members of the CELIAC LIST:

I've been tossing this idea around for a couple of months, and it is time
to send it to all of you.

There is increasing conversation about a super-organization for celiacs.
It seemed to me that we ALREADY have that organization  - it is this great
CELIAC LIST.  It doesn't cost anything, as long as one is on line and has
an e-mail address.  It is global, not just limited to one country or one
hemisphere.  Perhaps what we should work for is a little additional
organization and perhaps an action wing for this LIST.

Here we are, sharing information about tests, doctors, symptoms,
medications, complications, labeling, food ingredients, and related
diseases.  No hotel bills for conferences, no travel expenses...there are
only two things that are missing.  One is face-to-face conversations. At
conferences, one usually interacts with just a limited number of people,
and not with all 200 or 400 or however many happen to be at the conference.
My experience with celiac conferences is that the talks were repetitive,
the new information very limited or almost non-existent, and there was
wasted time dealing with organizatinal details (there were ALWAYS new
by-laws to be voted on by people who knew nothing and cared less about
them) and election of officers. Most important, there was never a way for
atendees to ask important questions and have input in the meetings. Very
few of those who attended the conferences knew the officers,  so new
leaders seem to come from the same little group as the past officers.

The other thing we don't have on the LIST is a newsletter.  That means we
don't have to hunt up sponsors and advertisers and keep mailing lists up to
date, and remember who has paid dues until when. We don't need to do lay
outs and check spelling and all keep up with the cost of postage, etc.

As I see it, the only thing we really need to make this LIST a viable
celiac organziation (WHICH I THINK IT ALREADY IS) is a medical advisory
board who will read the medically related mail - and ignore the recipes and
travel information and meeting notices - and give us the benefit of their
expertise.  That would give us some political and intellectual validity.
How do we find these doctors?

I suggest that local celiac groups can recommend their favorite
gastroenterologists who seem to be knowledgeable, and that those doctors be
asked only to answer whatever questions come up ONE DAY OUT OF EVERY MONTH.
That means we need, at most, 31 doctors.  Surely there are 31 local
organizations who can supply us with a doctor.  The idea would be that the
local group would read the day's mail on the list, for that doctor's day,
and send on to the doctor only one or two messages that seem to need
medical responses.  Many days there would be NO questions for the doctors.
Then, when there are questions, the medical advice could be sent back to
the LIST.  This has a double advantage.  It tells the medical professionals
what is on our minds, and medical concerns that we celiacs  may have, and
it gets the doctors interested in what the other physicians may be saying
about the disease.  I have a feeling that very few MD's really want to read
what we lay people are saying about having celiac disease, but they WILL be
interested in other professional opinions. The doctors have their own
Professional LIST, but they do not have any input from us.

Perhaps what we might use is some recently retired physicians  who are
ALREADY interested and knowledgeable re: celiac disease, and put them to
the task of being our advisory board.  There might even be a way to pay
them for their help, altho it would be primarily a labor of love. I haven't
worked out the details of that possibility.

As I see a great need to educate those who are already doctors and those
who are in medical school, this seems one way to move in that direction.

We would also need groups of people who are especially interested in
labeling to work together (on line) putting out messages to send to
political and other responsible bodies about labeling.  And people who are
concerned about gluten containing, or non-gluten containing medicines to
make lists of those medicines.  It seems to me we are already doing this in
a small way, but it could be a bit more efficient.  I have, for example,
recently answered questions that wanted the names of gastroenterologists
who seem to understand celiac disease.  Others must have done the same
thing. There's another list to be put together and put on file.

No need to belabor the point, as you must see what I'm driving at.

One outstanding question is, how do we reach people who are not on line? I
don't think there is a positive answer to that.  There are always people
who are not members of any celiac organization.  There are always people
who don't go to conferences because they have no time or no extra cash.
Thinking we will reach everyone is an impossible goal. But if we reach more
people with professional advice, we will be moving ahead for the WHOLE
celiac community.

Surely many of you have additional suggestions of things that will, in
effect, make the LISTSERV into a GREAT supra-celiac organization. No
by-laws necessary, no book-keeping.

I don't understand the financial basis of this LIST - how it manages to
keep going, etc.  Perhaps (would it be possible?) there are no costs
involved, but I don't see how that would be the way it works. That is a big
mystery to me. But I do not see how this could be any financial burden to
the list owners.

I do NOT want to make any more work for the owners of this list.  I just
want those of us on the LIST to have a little more professional advice, as
well as a little more clout in lobbying for help on important issues.

What are your reactions?

Gayle Kennedy