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From:
Sharon Spencer <[log in to unmask]>
Reply To:
Sharon Spencer <[log in to unmask]>
Date:
Sat, 17 Sep 2005 15:09:46 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

Thanks so much for all replies.
First, I would like to explain that when I say my reaction to gluten is hepatitis, I mean it in the literal sense, inflammation of the liver.  One writer told me that "No one gets hepatitis from ingesting gluten- hepatitis is from microbes.  It's like getting AIDS from gluten".  I was referring, not to viral or bacterial hepatitis, but to autoimmune hepatitis secondary to Celiac disease--a well-documented reaction which, after many years of illness and worry, was diagnosed (finally!) at the Mayo Clinic in Rochester.

Four people wrote to say that they had the experience of getting gluten in meds.,

Two people wrote that it is not an issue.  One said he had yet to find a med with confirmed gluten.  The other said "just tell them and you will get gf meds".

I had hoped for more info on ER and hospital experiences.  One wrote that she had a bad reaction after an ER visit which included 2 doses of a generic form of Maalox.  Upon investigation, the mixture had flavoring which was derived from barley.  The ER staff had told her that they "thought" all the meds were GF.
One respondent said her cardiologist "huffed" when told that she did not want any oral meds unless the gluten status was known. The dr. then ordered everything by IV until she had a very bad reaction to the IV Potassium.  A nurse apparently intervened and convinced the dr. of the wisdom of having a pharmacist determine the gluten status of an oral potassium med.  I totally agree with this writer that gf lists can be misleading, and that doctor's office staff, and often pharmacists, can be clueless in getting the correct info.She also says that"Seems to me that making sure a new prescription does not react with other meds or allergies the patient has is the pharmacist's job!".
One writer said she brings all her own meds with her to the hospital, ones that she is sure of.  This would definitely cut down on the amount of research the pharmacist would have to do.

So, with this as with so much relating to this disease, it comes down to how much risk is perceived and how much one is willing to take.  For me personally, the hellish reactions of generalized itching, nausea, weakness, fatigue and general malaise which are the result of ingested gluten plus residual liver damage and which can last for weeks until the liver heals again, well--just too awful to take a chance that may be avoided with a little extra effort on my part.  As one writer quoted above said,"I think drug labelling for gluten and other allergens is the next goal.".  And as another writer said, if this was a legal issue, they would make darn sure there was no contamination.

In the 5 yrs. since my diagnosis, I have noticed greater awareness among drs., pharmacists and pharm. cos.  I would even say that most meds are GF.  But it's those exceptions that'll getya.

Sharon

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