For the gluten sensitive, how do you avoid gluten in prescription medicines?

[pnwmom]

I have to avoid gluten because I react, with pain and intestinal bleeding, to even very small amounts. (I get other symptoms, too, but that's the worst.) Once I had bleeding for three months before they figured out that a generic med had been changed and now included gluten. I switched back to the brand name and the bleeding disappeared.

So I try to get the brand name prescription, which is almost always made without gluten. But every time I get a new prescription, I have to go through a new fight with the insurer, with my doctor writing letters about why I need the brand name, gluten-free med.

The first thing I do is call the generic manufacturers. (They won't put information like this in emails or on their websites.) And they usually say that gluten isn't one of their ingredients, but it could be added by the manufacturer as a filler. They pretend they don't have any control over that. And they say that every batch can be different -- some with gluten, some without.

So now I have a new prescription. It's not a new med -- there are generics out there -- but the brand name price is about $450 for a month. So I'll be calling the generic manufacturers tomorrow, and they'll be telling me the same weasly, useless things.

But I really can't take a pill with gluten. So is there any better way than several months battles with insurers, waiting and hoping to be approved?

[NCarolinawoman]

1. I didn't know they put that in drugs.

I know they use a lot of talc which I'm not too crazy about.

[pnwmom]

2. They can use it as a filler and they don't have to label it. And they can change

the filler any time they want without notifying anybody, including customers who call or write to see what the product contains.

Also, sometimes it's not one of the official ingredients, but they allow it to be processed on a manufacturing line where it can be contaminated by gluten from another product. And that's legal, too.

[potone]

3. That shouldn't be allowed.

While some people who are gluten sensitive simply feel better if they avoid it, others, obviously including yourself, have a serious reaction to it. You should not have to be in the position of having to guess what is making you ill because the ingredients aren't labelled.

[pnwmom]

6. Ted Kennedy originally included gluten as one of the food items that would

have to be labeled, but he couldn't get it past the food processors and through negotiations with Congress till he agreed to remove gluten from the list.

He had fought for 20 years so he finally made that compromise.

[PennyK]

4. If it has to be listed as an ingredient in food

I don't get why there isn't the same requirement in medicine, which you obviously ingest.

[pnwmom]

5. No, gluten isn't required to be listed anywhere, including food.

Some manufacturers do, some don't. And they have different standards for doing so. So they might claim "NO GLUTEN INGREDIENTS," for example, leaving open the possibility that the food was processed in a machine dusted with gluten-containing flour. This can be okay for some gluten-intolerant people but not for people who have an anaphylactoid reaction to gluten.

Labeling wheat isn't enough because gluten is in other grains, too (barley and rye).

There's a reason gluten isn't listed. Ted Kennedy worked for twenty years to finally get the labeling bill through, so the "top allergens" would have to be labeled. But the only way he could get the food processors to stop fighting it was by taking gluten off the list. So even though more people have a problem with gluten than with several of the other ingredients, gluten was removed from the list.