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This post is in response to mine about uniting the US celiac groups.  I
thought it so brilliant that I am passing it on in its entirety.  Please
give us your comments.
Diane

From: Helen Aqua <[log in to unmask]>
Date: Wednesday, December 02, 1998 9:09 PM
Subject: Canadian & US Celiac Associations

Diane,
I'm unclear about the unification of the celiac groups in the U.S.  If we're
going to get anywhere about having the manufacturers on side about producing
products we can eat, we obviously have to be very clear about
what we can or can't have. It is alarming to read your comments re the
celiac groups not working together. It is exactly what is happening in
Canada. Here we have this incredibly wonderful new technology that allows
us to "talk" to people around the world and none of the official celiac
associations has a web site anything like Scott's. In Canada, I can't locate
a way to e-mail our national office.
The Vancouver chapter sends out a newsletter bi-monthly. That means that it
might be over two months until the Vancouver members find out about
something you and I know about as soon as someone on the list puts it out.
I'm infuriated that our new Canadian Blood Service organization is so
paranoid that it might make another "tainted blood" mistake that they have
stopped allowing celiacs to donate. Since when is malabsorption a reason to
disallow blood donation. Do they know something about us that all the rest
of the doctors doing research haven't yet discovered? Should we also not be
allowed to be organ donors?
I guess my point is that if we can't all find a way to agree about celiac
and present as a united body, how on earth can we negotiate guidelines with
Canadian, American, English, European etc etc agencies that govern what can
go into food, what labelling is mandatory, how explicit ingredients lists
must be. How can we have universal pictorial allergy labelling? Sure we're
celiac. But we're sometimes also lactose intolerant, corn intolerant, maybe
we're monitoring our sodium or sugar.
If we can't be one united group as celiacs, how can we join with other
groups like diabetics and heart & stroke victims, vegetarians, those who
want to know about natural ingredients vs pesticide free etc etc.
I don't know where to start, who to lobby.  I really feel power and strength
through the listserve. How can this be
tapped to move the various groups past "me think" to "us think"?
Any thoughts?
Helen in Vancouver