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Celiac.com Celiac Disease & Gluten-Free Diet Forum: The Fda - Celiac.com Celiac Disease & Gluten-Free Diet Forum

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The Fda How can we influence drug labelling? Rate Topic: -----

#1 User is offline   mushroom 

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Posted 11 October 2009 - 12:50 AM

Sitting here recovering from my third pharma glutening (the only glutenings I have had as I recall) and wonder if anyone has any ideas how we can break through the hold that pharma companies have over congress, and get somebody to kick the FDA into gear about labelling laws.

Briefly, I need a low dose of thyroid medication because I am subclinically hypothyroid. Synthroid is the only brand that makes a low dose medication which is imported by our drug company here (PHARMAC), and, the old story, would neither confirm nor deny that it is gluten free. Because I am tired of shivering in summer I decided it was worth finding out for them whether or not it contained gluten: Abbott, or whoever made it for you, it DOES!!! Spent last night with racing heart and belching for five hours where I could not lie down because I could not breath, and am an unhappy camper. Sure, it was a calculated risk, but one I should not have to take. HOW LONG ARE WE GOING TO ALLOW OUR PHARMA COMPANIES TO POISON US??? Surely, anything we ingest should come under the food labelling laws!

I know this is an old story, but maybe the time has come where we should try and do something about it. The New Zealand drug buying agency (PHARMAC) does not consider gluten when it is making its drug decisions, only cost, even though one in ten persons here is considered by Rodney Ford to be gluten intolerant. That is 10% of the population they are poisoning!!! And Pharmac mostly does not know whether or not they contain gluten because the American drug companies will not tell them because they do not know, because they are not required by congress and the FDA to know. If it is important to know what is in our food, it is equally important to know what is in our medications. This is where the alternative medicine field shines, when I would estimate 90% of the time their products are labelled as to whether or not they contain gluten. And the doctors wonder why we prefer alternative medicine????

I would appreciate hearing any thoughts as to how we can influence this process, apart from writing our senators and congressmen (in my case, Harry Reid) to let our thoughts be known. There must be something that can be done!!
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#2 User is offline   jststric 

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Posted 11 October 2009 - 03:48 AM

I sure wish I had a great idea for us, but I don't. If we could unite, there's alot of us. But, unfortunately, the statistics say that 90% of the probable Celiacs haven't been diagnosed or even realize that's their problem. I, myself, am not a diagnosed Celiac but I believe "only" gluten-intolerant. And what adds to my concern is that a majority of us seemingly are intolerant of other things besides just the glutens also. I know when I stopped taking vitamins and such because I discovered most had something in them I couldn't deal with. I did find a company, Kirkman Labs that makes a nice selection of allergen-free vitamins and supplements, but I don't believe they deal with prescription stuff. You might contact them and ask what they may know about that realm or companies that you may not be aware of. They are very nice people and easy to deal with. Their website is www.kirkmanlabs.com. Good luck! And if you find out anything useful, please let us know!!
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#3 User is offline   ravenwoodglass 

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Posted 11 October 2009 - 08:30 AM

Something that would help a great deal is if we report every time we are adversely affected by gluten in a script or OTC drug. Below is a link to the website to do so. Most of us don't report the reactions we get and if we report the reaction to our doctors since the reaction is to a binder and not the drug these reactions slip through the cracks. We need to get loud and do this as often as the issue arises.


http://www.fda.gov/S...t/ucm053074.htm
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
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#4 User is offline   luvthelake21 

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Posted 12 October 2009 - 07:39 PM

I agree something should be done about labeling medicine. I have more problems trying to find out if medicines are gluten-free than I do with food.
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