Celiac Disease Support Group

The lists were made by a clinical pharmacist. Great resource--it was just updated too--thanks for finding it.

This starts out claiming that the "sugars" in medicines which "mimic" celiac symptoms are really safe for celiac's and that consuming them "in large quanities" is what causes celiac type symptoms.

I got sick from a medication that I take once a day. There is no way that can be considered "large quanity".

There is gluten in drugs? Why would they do that?
This disease just keeps getting worse by the minute! I feel like I am going to explode from doing research all day long.

Suesdoggie, Hold on dear!! Things WILL get better - As for the drugs, take your list of meds to your pharmacist and ask them to determine if there is gluten in any of them. Hubby had one med that did have gluten in it, so the pharmacist notified the Doc and suggested an alternate med, and all is well, now. The gluten is used for a binder, etc.

Gluten can be found in soaps, cosmetics (lipstick), lotions & creams, and nearly anything else. Be sure to keep a list of which companies you call and which ingredients are OK and which are not. After a period of time of calling, I found it easy to forget something, so I had to refer back to my notes.

Again, let me reassure you - learn all you can about CD and what products are safe, and faithfully AVOID the glulten, and eventually, life will get better. You are the one in charge of your healing !!!

My best to you!!

Thank you for the voice of reason. I hate hospital, don't want to go back no way, no how!!!

I use same pharm all the time. Will take meds today. I don't feel so all alone anymore.

It is so much easy to read internet research than look in closet and figure out what to do.

Pharmcist tells no gluten in my medication. Thank you all for help. Have much to decide. This is one less.

SueDoggie,
Yep, one step at a time.

There are many of us who cannot tolorate the lactose (sugar) in milk and then there are those of us who cannot tolorate the casien (protien) in milk. Some of us must be completely dairy free.

Hold on!
There are SATISFYING answers.
I could not use milk after I tried to hold onto it like a bull cuz I love milk. Well, of course the diareah is not worth it.
I knew I could not tolorate regular soy milk either and it didn't taste anything like MILK.

SILK soymilk tastes good and it's creamy too!

HSTAR and AnimalHeadButts,

You both give excellent answers.

I am still confused about the "sugars" explanation for the celiac symptoms from some medications. I was recently FORCED to try a generic that I take once a day (one pill each day!). Is that what they would consider "large quantity"? I know there can be large amounts of fillers and binders in medications in order to give each one its own unique "look and feel". Supposedly, the pharmacist is supposed to be able to tell what medication is in their hand just by holding it in hand. Of course, we know they never actually touch the medication. Still if I get sick from one pill per day, can it be from "sugars"?

By the way, I went to the FDA to report this new generic as having serious side effects for celics. Yesterday, I received a form to fill out from the company to report the negative event.

I think every medication on the market should be safe for every person. The last thing someone who is sick needs is to receive medication that makes them sick.

I had to see my doctor to make sure that it was not a stomach virus before I could get the challege document rilled out. Then I had to wait two weeks while insurance "considered" my appeal. I went three days without any medication. I had a migraine so nad that I lost 10 lbs.

I don't think insurance companies, drug companies should be able to do this to people. We have enough problems without some darn exec in a three piece suit with multiple vacation homes telling me I have to save him some money.

Sorry for the rant!!!!! This really angers me. I have the financial ability to get what I need. What happens to people who can't afford these appeals and paying for a medication twice. Plus, they still get to charge me more than twice what it used to cost. What happens to others? I am not going to live just for me! I am filling out the form and demanding safety for every person who takes a medication.

Thanks for reading
C

catlovesdi,
Please don't call this a rant and please don't appologize.

I'm GRATEFUL you tell me about this issues.
I'm Grateful you TEACH me how to manage these problems and who to go to with my concerns.

You are teaching the process and that's wonderful.

You post is fabulous!

AnimalHeadButts,

I think you found the reason why i could not tolerate the generic medication. I am sorry I did not realize it when I read your post the first time. I am lactose intolerant SERIOUSLY. Even a bite of chesse without a "Lactaid" pill makes me severly ill for several days with "celiac" symptoms.

I am not saying this is OK. Many people and nationalities are prone to lactose intolerance. I guess all we can do is report the problems and let the "higher ups" sort out the rest.
C

PS. I really do know that not every high level executive in this country has more than one vacation home or preys on people to make hundreds of thousands of dollars on the backs of the ill. Just wanted to clear that up! :-) :-)