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Subject:
From:
Lindsay Amadeo <[log in to unmask]>
Date:
Wed, 28 Jul 1999 12:41:48 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

Yesterday Vance suggested all newly diagnosed celiacs purchase the
Celiac Sprue Association's product guide.  While the guide is certainly
a place for new celiacs to start, I am very disappointed in the outdated
information contained in that publication.  Many of the products in this
year's guide have a gf status date that is 4-5 years old.

All of us who keep up to date on celiac information know products need
to be verified every year.  The TCSSG guide list product information
that is no more than 2 years old and most is more current.  There are on-
line lists that are even more up to date.

I realize that staff and budget issues are significant for a non-profit
group.  However, the information gathering and production process has
changed dramatically in the past few years.  I have written to CSA and
suggested they revise their process to be more current.  Not doing so
seems highly irresponsible to me.  In the spirit of being part of the
solution and not the problem, I also voluteered to help.

When I first called to suggest a change, I was quickly and rudely told
by the receptionist that we all need to call the manufacturer and verify
gf status ourselves.  Now, that would eliminate the need for a guide
wouldn't it?  However, the Director was extremely accomodating and
refunded my payment.  However, the inaccuracy of the information remains
and I have chosen to not rejoin this group until they revise their
process.

So, while I concur with Vance's suggestion to purchase a guide for newly
diagnosed celiacs, I want to point out the outdated information
contained in that particular guide and suggest any other CSA members
that are also concerned make their thoughts known to CSA.

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