<<Disclaimer: Verify this information before applying it to your situation.>>
I think Kemp and Rosalie are right. Besides the political, another area
to cover is to establish a co-operative relationship with support groups
of other auto-immunities so that if a person has gluten intolerance &
another auto-immune condition, he/she has support from both groups. For
example, I took information from this list to a local diabetes support
office. The woman had never heard of celiac disease. But a significant
percentage of diabetics have CD, and vice versa. We need to educate,
dialogue and serve the needs of these people. (If I am wrong, and there
are people on this list with two auto-immunities, and you feel you are
getting adequate support from both sides, please let me know.)
Becky Markle
Erie, PA
P. S. Another experience. I have a friend who is a sysop in the
Compuserve autism/Add/Pdd forum. Now, one of their FAQs states that
gluten sensitivity is an unproven treatment for autism. I forwarded
postings from the "I've been flamed" sequence of a couple weeks ago. It
showed our side of the issue...it's not a cure, it's a management
strategy, may not work all the time, but when appropriate, it's golden.
She was very happen to get this info & hear our side. I think we need
to do more of this friendly information sharing.
On Thu, 13 Apr 1995, J. Kemp Randolph wrote:
> On April 8, Rosalie Jalbert said,
>
> >>Since the new FDA ruling, we have noticed difficulty in getting
> information from manufacturers..... serves to prove that we need one large
> CELIAC GROUP.<<
>
> There's clearly a need for such a group, but now we have several
> complementary groups, each with distinctive strengths. How do we get there?
>
> Perhaps an umbrella organization specifically dedicated to political
> matters, such as Rosilie mentions, would be a way to go. Hopefully there'd
> be more grounds for agreement in this way?
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