<<Disclaimer: Verify this information before applying it to your situation.>> 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