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From:
George & Gayle Kennedy <[log in to unmask]>
Date:
Mon, 9 Oct 2000 17:16:58 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

This one broke my heart.  Perhaps someone will have a way to be helpful.

[log in to unmask]
>They die. Another scenerio is, what about the people with permanent
>damage ,that if they have a good dr will put them on total
>parenteral nutrition instead of letting them die, like me.


>[log in to unmask]
> I looked into this matter about 6 months ago.  I called at least 20
> nursing homes in the St. Louis area with a fictitious aunt with celiac
> disease who needs nursing home care.  Only 2 had a clue what I was
> talking about and unfortunately, one of them could be named the Ritz-
> Carleton nursing home.  Tres expensive.  I then wrote CSA/USA  and
> Celiac Disease Foundation in CA suggesting they might wish to explore
> this matter as I thought it would be of interest to many.  I have
> searched and searched for Mr. Rottman's reply from CSA/USA, but I
> obviously threw it away as it was a bunch of gibberish.  But at least
> he replied.   Never heard from CDF in California.  I was and still am
> discouraged.  Any suggestions, anyone?  Hopefully, we can get more
> publicity or I can start saving big time for the Cadillac of nursing
> homes in this area.

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