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Hi,

Thanks for the superb responses.

I'll start with my original email, followed by the responses.  My main
motivation in talking to my pharmacist friend about celiac was to encourage
people to turn first to their pharmacists rather than their physicians.  I know
from first-hand experience (5 years as a pharmacy tech) that doctors turn to
pharmacists for drug info far more than most people would ever expect.  So I
asked an old friend of mine what he thought.  Apparently, he hasn't gotten
questions from celiacs and answered the best he could.  I trust him completely,
and would use him as my pharmacist if I lived near enough.  But, my opinion was
swayed, and I would have to suggest calling manufacturers for yourself.  But
the message is still there:  that there are issues with manufacturers that we
need to be knowledgable about....issues with generic drugs that can be quite
complicated.  I have known for years that this is a complicated disease to
handle, but my eyes were opened yet again.  I hope this helps more than it
confuses.  I have to conclude that we need to share information about drugs as
much as possible.

From the pharmacist:  "I agree with you that it is best to check with the
pharmacist whether a med is gluten free.  Since generics may have different
inactive ingredients then the brand product; only the pharmacist will know for
sure.  The physician could look in the PDR [Physician's Desk Reference] and see
the ingredients, but the pharmacist might dispense a generic because of
insurance regs or on the patients request; and the inactive ingredients could
be different.  The best thing to do is ask for the package insert and check the
ingredients yourself.  Ingredients can also vary from one generic to another.
Products can also be reformulated or a contract mfr [manufacturer] might be
used so the "branded generic" still may be from the same distributor but the
manufacturer could be different.  The safest thing to do is always ask for the
package insert with the bottle and look at the list of ingredients.

I usually get ingredient questions about dyes, if the liquids contains sugar or
alcohol,  or type of flavoring (in children's liquid dosage forms).  I have
found the dyes differ from brand to generic and among generics."

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Responses:

This is interesting.  In the conversations I have had with pharmacists they say
that the only way they will know is to contact the manufacturer.  I talked to
one at Medco (mail order) yesterday and he said that if it says must be gluten
free on the script (and we can write it on ourselves and initial it) then they
would check ahead of time.  For existing RX's I could call to get the
manufacturer's phone #.  He said manufactures change suppliers and their
ingredients could change.  My Walgreen's said it if says must be GF on the
script they will call manufacturer.  I was trying to find out if one of my meds
was GF and they couldn't tell from the ingredients.  When I talked to Barr
Labs, they said that their suppliers and ingredients could change and the
pharmacist would not know from the label.

I do think we need to rely on the pharmacist versus doctors who would not know
from the information they have whether a drug is GF or not.  I had sent a
suggestion to Walgreen's website that they have gluten as a "drug allergy" and
that it would be great if they had a better way of tracking which ones were GF
so their pharmacist don't have to check all the time.

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I know the one time I was on the phone with the pharmacist and he was looking at
the insert.  I don't know what the labeling laws are for meds and whether they
would have to list gluten.  I do know when I talked to Barr labs they told me
that the only way was to call them regularly.  The pharmacist at Medco said
they had somewhat of a database that they use to keep track of GF meds.

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I go to CVS and they have it on my records that I have celiac disease and they
call the manufacturer if there is any question with a prescription.

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In Canada, only 4 meds have gluten into them.  All the thousands of other ones
are GF.  All we have to know are the list of these four ones.

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My pharmacist also tells me if the medicine causes diarrhea in some people, and
then I do not blame it on gluten if I am one of the people who react that way.
He also tells me if something is going around so I do not blame it on something
I have eaten if I catch whatever is causing the diarrhea.

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Better yet, Diane, I get the manufacturer information from the pharmacist, and
call the manufacturer (I have the CD-ROM of the PDR - available on eBay - and
if the pharmacist doesn't have the phone number, I look it up in the PDR).

The pharmacist can't always tell if the fillers are gluten-free. There can be
cellulose-related products from various sources, pharmaceutical glaze, etc.

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