Help...dr. Says Wheat Starch In Pills Is Safe

[gabby]

Hi,

I take an anti-convulsant medication in pill-form for a disorder that's unrelated to celiac. The medication only comes in pill form, and one of the binding ingredients is Wheat Starch. The doctor tells me the wheat starch is safe....and that in Europe wheat starch has been declared gluten-free and is allowed in all sorts of gluten-free products (eek!)

I only need the medication during an attack, and for 2 weeks thereafter, which happens about 2-3 times a year.

I can't handle wheat starch in food products, so I don't know why the doctor says it is okay in medication. Note: this doctor is the gastroenterologist who performed the endoscopy and finally diagnosed the celiac disease.

Has anyone been through this ordeal already and come up with a solution/alternative?

Thanks

[lovegrov]

From what I understand, at least some wheat starch in very low in gliaden and when it meets a certain level, it is allowed in gluten-free food in Europe. But even this low level still makes some people sick. If your aim is zero gluten then you don't want it.

It sounds like this medication is important for you to at least be able to function, and possibly life-saving. If so, is this the only medication that will work? If so, is there a pharmacy that can compound it for you without the wheat starch? If not, then you have a tough decision.. But if this medication is the only option to treat your condition, you might have no choice.

richard

[Canadian Karen]

Hi Gabby!

Check with your pharmacist if there is a generic brand of the same medication that does not contain wheat starch. It is my understanding that there are only 4 medications on the market in Canada that still contain gluten, and the one you have must be one of them.......

The pharmacist has a book that lists the four medications (I forget the names of the ones that are still not safe.....)

If there is no gluten-free alternative, then yes, you have to make the decision as to whether this medication is more important than getting glutened. Sounds to me that this medication is important to you though...... probably would be more important to take the medication and deal with the "unfortunate glutening....".

By the way, I would like to know the name of the gastro who told you this. Want to make sure I don't go to this guy...... Doesn't sound up to snuff on celiac disease and gluten stuff......

E-mail me at ksmagill@rogers.com

Thanks!

Karen

[tarnalberry]

Your doctor is making a dangerous assumption - that because something is safe somewhere, it's the same, and also safe, somewhere else. Wheat starch is not the same everywhere. Wheat starch in the US is NOT as highly processed as the food-grade wheat starch in Europe used for 'gluten-free' foods. There's a pretty big debate on how refined medical grade wheat starch in the US is. The fact that your doctor is making these assumptions is problematic, but it's probably an instance of him over- and indiscriminately-using a skill that is actually helpful in his job.

I would encourage you to first look for alternative manufacturers - call them individiaully if you have to and ask if they produce a version of the medication you need. If that fails, locate a compounding pharmacy near you (I recently posted a link with a compounding pharmacy directory) and the chances are good that they can compound it with safe ingredients for you.

[KaitiUSA]

I do not consider it safe and would not even attempt to try..that is very very risky.

[gabby]

Thanks for all your input. I never thought about a compounding pharmacy! But I've checked into it, and it looks like they can get me a safe and effective alternative. Whew.

As for the doctor who said the wheat starch was ok....he is located in Zurich, Switzerland (where I lived for a little while until I came back to Canada a while back). Apparently the wheat starch they use in meciations over there is not reactive to celiacs and people with wheat sensitivities (or maybe it is just not reactive on Swiss citizens

thanks again