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Forwarding a response to a previous post re Canadian group:  It's long...

From: joan tuckey <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>

>The Canadian Celiac Assoc. can be contacted at 1-800-363-7296
>They now have a web site but not an email address. I expect that will
>come sometime in the future.
>
>Meanwhile, Canadian concerns do get posted on the Celiac List. It is
>just that there are so many more Americans on the list that our concerns
>sometimes get lost.
>
>If you would like to visit a Canadian Celiac web site try Edmonton's at
>http://www.edm.shaw.wave.ca/~jtuckey/celiac.html
>or you can also reach it at
>http://come.to/joansplace
>
>My email address is [log in to unmask]
>
>> 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.
>
>Our Canadian Celiac assoc. does work together. We are all chapters of the
>national organization. Each chapter has their own newsletter, but we
>also have a National newsletter.
>
>> 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.
>
>Most chapters do have meetings on a fairly regular basis where local
>concerns can be talked about and new information given 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?
>
>Please address this concern to the Canadian Blood Service organization.
>
>> 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.
>
>Canada has quite a good labeling system in place, and from information
>given at the recent National Convention (in Kitchener, Ontario) I
>understand that labeling is going to get better in the near future.
>
>> 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.
>
>As I said before Canada already has one national organization as do the
>diabetics. We also have local affiliate organizations as do the
>diabetics. It is the USA that has several national organizations and
>they each seem to have different guide lines for Celiacs. That is what
>is so confusing.
>
>> I don't know where to start, who to lobby.
>
>Are you a member of the C.C.A.? That is where you start. Are you an
>active member of your local Celiac chapter? That is another place where
>you can make a difference. You must work through the organizations that
>are in place. We must speak with one voice. Canada has an excellent
>system in place - use it!
>>
>Joan Tuckey, Edmonton, AB
>mailto:[log in to unmask]
>http://come.to/joansplace