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From:
Deni Hansen-Gray Weber <[log in to unmask]>
Date:
Sat, 19 Sep 1998 00:59:20 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

Well,  18 people responded to my frustration.  An extremely valuable
suggestion was on having a medic alert bracelet and info card.  In my case
it was suggested that an anaphalactic response to gluten should be the
pertinent information.

A few of the responders had suggestions about advocating changes in the
system.  Joining with others who have this problem with medications, ie
lactose or corn allergies.  That would grant more numbers to make noise.

Some suggested contacting our legislatures.

Some, contacting pharmaceutical houses that will say they are gluten free
and passing that info  along.

Asking those same houses to voluntarily put the info on the label.

Having one main Celiac organization instead of smaller splinter groups
sounds like a good idea, too.

I did get a response from my comment to the FDA.  I got a very nice note
giving me a lot of information on Celiac, such as organizations to contact
and how to find other information.  They also informed me that private
citizens can petition the FDA for regulation changes and pointed me in the
direction of the necessary forms.

As I was reading the Food, Drug, and Cosmetic Act on the FDA page, I saw
something that could potentially work in our favor.  There was a blurb
about the necessity of warning labels on medications.  I sm not at all sure
that I translated this correctly but their statement seems to say That
there must be adequate warnings against use in those pathological
conditions which are necessary for the protection of users and is necessary
for the protection of public health.  I did a bit of editing with this but
I think this is the ground work for the labels that you see that are for
phenyketonurics  about the presence of phenol.  Seems to me that  "Warning:
This  product contains gluten"  would fit in nicely here.

So there are several roads to try.

I was somewhat dishearted by the rather resounding lack of response I
received.  Guess I wanted to see the whole USA portion of the list
motivated.  I guess most of you don't have the same medication problems, or
don't mind contacting manufacturers and doing  your own leg work.

But I am tired of it.

For those that ssid that this could be a long, hard and possibly frutiless
venture, I have to say that Change has to start somewhere.

I'm not willing to give up on this, but I won't clutter the list with a lot
of information until there is something substantial to report.

peace

deni
(who is niave enough to think that she can make a difference)

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It is seldom wise to leave a live dragon out of your calculations if you
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