<<Disclaimer: Verify this information before applying it to your situation.>>
Apologies for the delay in summarizing my replies. I went away unexpectedly,
and just got around to putting it all together
Several people referred me to Stokes Pharmacy in Medford, N.J.,
1-800-754-5222. I spoke to a pharmacist there who said that they often reach
different individuals when checking with pharmaceutical companies, therefore
receive different responses. As far as Pharmacia & Upjohn (the co. employee
who told me he didn't consider any drugs GF) is concerned, the Stokes
pharmacist said that they were given a list of several of Upjohn's drugs that
are considered GF. Stokes Pharmacy publishes an excellent guide on
prescription and non presc. drugs, available at $18 plus shipping (call 800
no. above). However, they caution that the composition of meds can change at
any time, and advise checking with the different manufacturers yourself. They
have included a list of phone nos. of drug manufacturers at the end of their
guide. They are thinking of producing a publication, available by
subscription so many times a year, listing the updated changes in
pharmaceutical products.
The following are replies from individuals that I will try to condense as much
as possible.I will refer to a list server as LS.
One LS stated that her pharmacist told her all drugs are GF. She still calls
for every prescription.
Lilly (re drug raloxifene), considers all of their drugs GF, after a phone
call by an LS.
One pharmacist suggested we use liquid medications. He said the chance of
contamination and/or using wheat as a filler is significantly reduced.
One LS asked her pharmacist if a med. contained gluten. He wanted to know
what gluten was and why she wanted to know. He said he didn't know how to
find out, and obviously didn't care.
One LS's thought was that a drug could well be gluten free, but not guaranteed
as such. Thinking of how most clothing now bears a label that says 'dry clean
only' for purely defensive legal reasons, even though the clothing doesn't
really need to be dry cleaned. "This aspect aside, we clearly need to address
this area of regulation and lobby for change. I am thinking of establishing a
correspondence with our congressional rep., as this can be a way of making
progress, so I understand."
One LS ran into the same situation with Triaminic manufacturers. Says the
pharmaceutical cos. are just trying to cover themselves. How about a home
gluten test kit? "Actually, pharmaceutical cos. can require their suppliers
to guarantee that their products are GF. This would be one more small hoop to
jump through for the FDA, and pharmaceutical companies already jump through
lots of hoops in order to market their products. So it wouldn't add much of
an administrative burden or overhead to the pharm. manufacturers........ but,
the message would really have to come from the FDA itself. That's where
political pressure comes in handy. You need to have all of the disparate CD
groups come together to put pressure on the FDA."
One LS suggests telling the manufacturers consumer rep about the life
threatening potential of the situation, that finding out the ingredients of
the product is essential. " Ask for a list of suppliers for the product, so
you can check the ingredients yourself. If he will not provide such a list,
ask him to contact the resource companies for you and check the likelihood and
frequency of his company changing suppliers. For any company that provides an
answer, send a fax to the individual, care of the company, recapitulating the
information they have provided, asking them to fax back any corrections, if
necessary. Be sure to get a record from the fax machine confirming the
document you sent, date and to whom. Sometimes in writing in this situation,
the company rep gets more meticulous about what they have said, if it is
necessary, since this is a legal document." If all else fails, refer back to
your doctor, and have him check, or prescribe another product!
One LS refers to the irony of CD. " The people and products that we rely on to
help us and keep us well, are poisoning us" .. all prescription meds and over
the counter as well. "We need vitamins, cold meds, pain relievers, laxatives,
etc. along with prescription meds that have never been near any product that
was produced with grain or any grain-derived product. If the wheat hybidizers
and the biotect sproducers continue to increase the % of gluten in wheat, then
CD will become a plague in the 45 million US citizens of Irish ancestry. In
the next 10-20 years, the 15% of blood samples of Irish citizens that showed
gluten intolerance could easily balloon into well over 6 million US CD
sufferers. Add to that the people of German and Scandinavian ancestry and we
have a first class medical disaster in the making.
Perhaps the LS's should start to spend a lot less time looking for GF
chocolate cake recipes and a little more time trying to get the medical
community to take notice and bring their considerable resources to bear on
this problem."
Sorry for the length of the above, but I think we have a lot to think about as
far as where we're going with the various organizations that are our there to
help us. Obviously we have to make a concerted effort to let them know that
there are alot of us out there, and that our problem is a valid one. Cherry
Marshall, N.J.
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