Mystery Med Ingredients?! Grr...

[relepvd]

Hello, folks. Newbie here. I'm guessing this has appeared b4, but (as opposed to my usual practice elsewhere) I'm gonna throw it out again b4 I blow a gasket. I'm still relatively new at the ins 'N' outs of this whole gluten-free thing. Wheat & rice cause, (among other things) hideous arthritis-like pain, for which has been prescribed painkillers. It belatedly occurred to me to inquire about wheat prods in the drug. Ha.

I just spoke with a cuss service rep at a major pharmaceuticals company; he assured me there's no way at all for them to say whether anything they produce is gluten-free, b/c they get all these ingredients from all over the place and really have no way of knowing what any of them are.

WHAT THE FRANKENFURTER?!?!

The FDA is so toothless that the pharm companies can just toss in any old ingredient some random supplier happens to send them, they don't know what it is, don't hafta care?!

So what was all that hoo-ha about "we can't let people buy meds from Canada, heaven only knows what they might contain"?! We don't even know what stuff contains that's made in the good ole US of A!

Who do I write? Where do I scream? Is there any point, or do the pharm lobbyists have de guvmint so tied up I'm wasting my time? There are some medications that I HAVE to take daily; do I just cross my fingers (unless wheat in a med has made them immobile)? It is beyond outrageous!

[happygirl]

relepvd,

Welcome to the board! We are happy to have you here!

It can be frustrating...and you might get a different answer if you ask tomorrow, or talk to someone different. Some companies are better than others to talk to. The other things is---and I bet this is a big part----many companies have started saying that about perfectly safe things, as a "CYA" type statement.

How bout you let us know which drugs you are taking...we can help with the ingredients and let you know which ones should be safe!!!

Laura

[relepvd]

Hi Happygirl... I must say, your ID gives me hope that someday I won't feel like life is just one loooonnng, aggravating, pain-in-the-neck dodging of food ingredients; the more I learn about the Lurking Wheat/Rice Monster, the less happy I get. Thank you for the warm welcome!

I'm all too familiar w/the whole CYA thing...it's pervasive!

At any rate, the gluten/rice thing is sorta complicated, I guess, by large chronic pain issues. I've recently switched over to a fentanyl transdermal patch for long-acting relief, so that cuts out one potential problem. I still take hydrocodone/tylenol or oxycodone/tylenol for break-thru pain, desipramine (generic f/Norpramin), dyazide, Sudafed....Plus OTC stuff I can read ingreds on, and usually dodge the baddies.

I take thyroid replacement but recently switched to a compounded formula that I have confirmed is safe. If my stupid insurance covered them, I'd all the Rxs cmpounded, but can't afford that!

Do I need to ditch the generics? Can name brands be better pinned down? What in the world about people with life-threatening problems (unlike my merely unpleasant ones)?! Can Pfeizer & Watson etc just say, "Hey sorry, tough luck, you can't touch us, neener, neener!"?

As you may be able to tell, this has me a wee bit crazed.

[ravenwoodglass]

Go with name brand not generics. The name brand will be able to tell you what the binders are. I always get the insert from the pharmacey and recheck to make sure they are safe by calling the company. I think it is disgusting that drugs are not regulated as well as food is. The people to write to and complain would be the pharma companies themselves and the NIH and a letter to the FDA wouldn't hurt either.

I don't know how long you have been gluten-free but I am hoping you have the same result I did, within a couple months taking daily meds for pain were a thing of the past.

[grantschoep]

Brand name will always help, as they know their stuff. Though, myself, I just can't afford it. I do have many prescriptions...

GREATLY depending on the pharmacist, they can be a good help to determine the ingrediants of the generics. Fortunatly, I have a great phamacist, or a few at my location. They help out, even check out the ingredients before they start my refill, if the generic brand changed.

[jerseyangel]

I've had good luck with both the name brand and generic drug companies that I've contacted. I've either been connected to a nurse or pharmacist at the companies, and they have checked on the medicine that I have asked them about.

I take 2 meds on a daily basis--one generic and one name brand. Recently, the CVS pharmacy that I go to changed suppliers of the generic drug that I use. It was no problem when I called to check on the new pills. I never ask the pharmacist about the gluten status--just the name of the manufacturer. I'd rather call myself and speak to them directly.

Sorry you are having such difficulties.

[happygirl]

I use both generic and brand name...varies for what I need. I either research the ingredients myself, contact the company, or ask my pharmacist. The pharmacist will always call and double check, and have been very helpful!

That is the best advice I have, is to have a sit down meeting with your pharmacist, and bring your drugs with you. I have yet to be glutened from my drugs (and, at one point, was reacting to multiple food ingredients, and as long as I asked, I received a satisfactory answer).

Yes, there really is hope, and I KNOW it is a pain. I was right there where you are now....I think we all really were, I swear. But, you learn what is safe, and move on. The learning curve is steep, but once you "get it", its just maintenance after that. But I swore I would never get it...I wanted to physically harm people who knew nothing about it who said it got easier . But those who really understood Celiac and lived a normal life---those people were inspiration to me and I realized I could be like that too! So, now I am. (well, some would say I was never normal, but that would come from those who love me )

Anyways, hang in there. We know its tough...but that is why we are here to help. You'll find a routine that works for you....until then, it might seem like the world is spinning. Keep reading, keep posting, read some more, be careful about ingredients, learn to read ingredients (that is the single best thing a Celiac/gluten intolerant person can do), and let us know what we can do to help! Feel free to PM me at any time.

To give you an idea of the normal life I live now....we celebrated Christmas at my house with my parents last night....ham and potato casserole, salad with feta cheese, sundried tomatoes, vinagerette dressing, champagne, and Christmas cookies for dessert! And I'm the only Celiac out of the four of us... (parents and husband) and it was all 100% normal!

Take care,

Laura

[Budew]

Welcome to the board. I get great info here. Even great questions. You all have created one what are CYA statements.

I never used over the counter. I have just requested my thyroid meds compounded. I did not ask the price, and feel lucky it is not a concern for me.

I have suspected meds to be contributing to my problems for aout a year. I quit the anxiety and anti depressants cold turkey a year ago. 5 weeks of awful withdrawl. I suggest that other back out slowly as they recommend. After that I quit birth control, I had been on depo privera for 10 years. Far too long. Since quitting the BC I have had migraines. I wonder if they are from hormone changes or food reactions. Now it is looking more hormonal. I wonder if there is a way to know if the trigger is hormonal.

I insisted on a change from hydrocodone to the fentanyl patch. It has made a difference.

The patch and the thyroid meds are all I use now.

I am pursuing dietary changes and been warned about alkaline diets contributing to candida.

I checked vitamin and mineral uptake and am doing fine there. I am still in pain. I assume it is toxins.

Pain in the hands and feet, especially in the morning. Pain radiating from the spine. And now migraines with increasing frequency.

I am getting meticulious about corn exposure. Tampon fibers are made from corn cellulouse. I will use sea sponges from now on.

Any advice would be appreciated. I am feeling a bit lost again. Hoping what I do ill not create a problem.