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From:
"Jackie R." <[log in to unmask]>
Reply To:
Jackie R.
Date:
Thu, 30 Jun 2005 13:12:49 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

Hi all -
We are planning a trip to the D.C. area in July and thought it would be
great if our 14-year old celiac daughter could meet with her
Congressman and/or Senator to tell them about living with celiac.  In
particular, she would like to let them know how difficult it is for
celiacs to safely use medicines (prescription and OTC) and other
non-food products (such as cosmetics and supplements) when
manufacturers are not required to divulge whether they contain gluten
(or other allergens) and many companies claim they have no idea what
their products contain.  Every time she is sick enough to need
medicine, it is a crap shoot whether the medicine she is prescribed (or
buys OTC) will make her better or sicker.  This is  wrong.

Do any of you have emails you have kept from correspondences with drug
or cosmetic companies in which they weren't helpful (i.e. we don't know
if it contains gluten, ask your doctor) and also emails from companies
that were helpful.  I would like to use this information in two ways:
(1) to document  that labeling for gluten sources and allergens is
possible (not cost prohibitive) but that some companies can't be
bothered and so Congress should intervene, and
(2)  to develop a list of the drug, supplement, and cosmetic companies
that voluntarily and consistently label ingredients from allergens and
gluten sources.  I have  a list of the food companies who willingly
label gluten containing ingredients and/or the major allergens and it
has been immensely helpful to me in making purchasing decisions.  (I
will email it to you if you want a copy.)

Also would appreciate any suggestions about talking to legislators and
the D.C. area.

Thanks.  I will summarize.

Jackie in AZ

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