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I must confess I am completely confounded at this point.  There seem  
to be two camps regarding gluten in meds.

1:  We have nothing to worry about as far as gluten content in meds as  
meds no longer contain gluten.

2.  We do have cause for concern, but the pharm houses will no longer  
give out information about GF meds.

To be honest I am fairly furious at this point.  I am an extreme  
reactor to gluten (I have more than celiac to deal with) and I NEED to  
know if there is gluten in a med.  The stock reply I have gotten all  
day today while calling pharm houses (even those who used to say their  
meds were GF) is:

We do not test for gluten, therefore we cannot guarantee any of our  
secondary supplier components to be gluten free.

I received many comments regarding my post of the med doxyl whose  
ingredient list online (manufacturer's insert) clearly states that  
wheat starch was an inactive ingredient and it contained gluten.

It appears there is also much dissension on the safety of wheat starch  
in foods and meds.

I received many different responses from "get over it" to "I can't  
believe they expect us to take something potentially damaging into our  
bodies."

I have been researching wheat starch and evidently "highly refined"  
wheat starch can be considered GF if it tests less than 20 ppm.   
However, that cannot be translated into all wheat starch being GF, as  
I understand it.  The following was found online in a discussion group.

"Also not all wheat starch is made equal. The wheat starch that is  
used in SOME gluten-free products here in Europe is specifically made  
to contain gluten only under a certain norm. NOT all european products  
containing wheat starch are in this category, just the ones that use  
the wheat starch that is "pure" enough. Even so, not all european  
celiacs (including me) eat wheat starch, and if people don't improve  
on a gluten-free diet containing wheat starch they are adviced not to  
eat it anymore. Oh, and people are usually warned not to eat "too  
many" wheat starch containing products in one day. Where you draw the  
line though is what I always wonder...

Personally I think it's a bit crazy to try and continue eating wheat  
in any shape or form but apparently lots of people over here do keep  
eating wheat starch products, and I assume at least some of them are  
being monitored by a doctor, too, to see that their antibodies don't  
go up"


Also, there is some questionability as to the protocol for some of the  
research done substantiating no damage from wheat starch.  Being a  
psychologist, I am aware of how research can be structured to provide  
the desired results.  As a highly reactive celiac with other problems,  
I won't touch wheat starch in any form.  I personally don't agree with  
the "less than" criteria.  If it's not gluten free, it's not going  
into my body (or on it) if I can help it.

In a perfect world, processing would always yield the proper results.   
However, this is NOT a perfect world and things are not always  
manufactured up to standards.  Have you  subscribed to the Allergy  
Networks alerts list and seen how many times foods are recalled for  
being mislabeled?

As someone who has found a barbecue flavored bacon rind in a batch of  
plain ones (I can't do MSG so the Barbecue flavor affects me), and a  
non gluten free corn chip in a bag of gluten free chips, manufactured  
in the same plant, but by a completely different company (I had no  
idea until then that companies shared lines and facilities).  I have  
my doubts as to how diligent folks are.  The company was reluctant to  
tell me that they shared lines, would not say with who (I knew who it  
was by the chip I found) and had told me previously that they only  
manufactured GF products.  I would think we'd have a right to know  
this information, and I wonder how much of this goes on.

Personally, I'd simply rather not take any chances.

As for meds, I wish someone would explain to me, in very simple  
language, WHY if there is no gluten in medications, if manufacturers  
add no gluten to a med, if they use "safe" starches - do they have to  
have a disclaimer saying they don't test?  (After all it doesn't exist  
in the meds, right?)  If there is no gluten, there is no possibility  
of cross contamination - so no need for a CYA disclaimer.

If there were truly nothing to worry about, I can't see the houses  
having to go to the trouble of adding the disclaimer at all.  It would  
be a simple thing to say it is gluten-free.

And as for the disclaimer being simply a CYA thing - I have had severe  
reactions to meds that have had their secondary supplies outsourced.

For the folks who are comfortable with this disclaimer - I am truly  
happy you feel safe about your meds.

For the folks I have heard from who, like I, react - sometimes  
profoundly - to small amounts of gluten ... God help us, cuz it's not  
gonna get any better.  Every house I contacted today had the same  
disclaimer.  My pharmacist says that is all he hears now too.

Why can we have gluten free foods - yet not gluten-free batch tested  
meds?

Thanks for all your  comments,

deni weber, Psy.D
Licensed Clinical Psychologist
GF since 1991

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