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Sign New Online Petition To Mandate Gluten-Free Labeling On All Pharmaceutical Products


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31 replies to this topic

#1 Leah's Mom

 
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Posted 16 October 2010 - 01:36 PM

Hi everybody! I was hoping you'd take a second to go to the link below and sign the online petition I created to mandate pharmaceutical companies to label their products as "gluten-free" or "containing gluten". For those of you who are new to the world of Celiac Disease, believe it or not, there are no current laws regulating this labeling on medications. The doctors, nurses and pharmacists we dealt with this week for Leah's minor surgery/anesthesia could not determine whether or not the drugs they were giving her were gluten-free. They just "guessed" they were (we found out later). This whole week she has been suffering from pretty severe Celiac symptoms. A week of frustrating phone calls and e-mails to the surgicenter we used, Walgreens Corporate, and medicine manufacturers have prompted me to start this petition. I'm hoping to get thousands of signatures and will send it to the FDA. Considering 1 in 133 people have this allergy, it's amazing to me that there is currently no legislation mandating drug labeling already. (Especially considering so many food companies are voluntarily doing it). Leave it to a ticked-off parent to get something rolling. Mom claws don't retract easily.

Thanks and feel free to forward this to as many people as you can think of:

http://www.gopetitio...tion/39858.html



Much Appreciation,
Marcie Taylor
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#2 jackay

 
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Posted 16 October 2010 - 03:00 PM

Come on everyone! I was only #16 signing this. :angry:
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#3 kareng

 
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Posted 16 October 2010 - 03:13 PM

I just signed! I also noted that many companies do not know if there is gluten in the product. Target does not know on the target brand OTC medications. I have called the number on the box and of different items. I get the same response that they "don't have that information". If I want, they can call the manufacturor and get back to me. Its nuts!
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LTES

 
"We've waited 29 years for this and not even a Giant can stand in our way." - Mayor Sly James
 
 
 
 
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#4 ravenwoodglass

 
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Posted 17 October 2010 - 05:13 AM

Up to 54 now. Let others know about this as it is very important.
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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)

#5 sa1937

 
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Posted 17 October 2010 - 05:23 AM

I signed it last night when it was only up to 24. I am going to send it to my daughter (newly diagnosed) and I know she has no time to read this forum as she's in grad school and up to her ears in homework. Hopefully lots of people sign and I do wish the FDA would get their act together to come up with official labeling for food products. Wasn't that due in 2008?
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Sylvia
Positive Celiac Blood Panel - Dec., 2009
Endoscopy with Positive Biopsy - April 9, 2010
Gluten Free - April 9, 2010

#6 cassP

 
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Posted 17 October 2010 - 04:07 PM

#73 :)
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#7 txplowgirl

 
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Posted 17 October 2010 - 05:02 PM

I'm #74, you'd think with over 30,000 people on this site we'd have a lot more signatures than this. Kinda disapointing. :(
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Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free


#8 psawyer

 
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Posted 17 October 2010 - 05:45 PM

I'm #74, you'd think with over 30,000 people on this site we'd have a lot more signatures than this. Kinda disappointing. :(

I am in Canada, so I doubt that my signing would mean anything (no vote-no clout).

The board has been running almost seven years. Over that time, people have come seeking help, and after having found that help, have moved on. I began reading in July of 2004, and signed up in December. In my time, I have seen that pattern so many times. The number of active members is far, far less than 30,000.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#9 GFinDC

 
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Posted 17 October 2010 - 08:02 PM

Signed, and posted to my Facebook page. They have a little Facebook line to share the petition on the site. Can't hurt to try.

83 signatures when I signed. Pretty weak showing so far.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#10 wheeleezdryver

 
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Posted 18 October 2010 - 08:42 AM

just signed it & posted to my FB page... 92 signatures so far...
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Becky (me)-35yo; hypothyroid 8yrs (symptoms at least 1 yr prior); Plantar Fasciitis (PF) (tendonitis in foot) 4 yrs; ovary & softball size cyst removed Feb 2008; Sleep Apnea 3yrs; Dec 2008- realized wheat affects hormones-- went semi- gluten-free (aka, gluten lite!). Interstitial Cystitis (IC, aka painful bladder syndrome) (self dx. controlled by diet- can't have acidic foods/ drinks). July 2010-- realized there was more going on, was going to do the sensitivity/ Celiac testing, decided it wasn't worth it! Am now truely learning to live the gluten- free lifestyle!
My DH-38 yo; born w/ Spastic cerebral palsy. legally blind, uses wheelchair. back surgery Aug 2007, has continued back troubles.

#11 Leah's Mom

 
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Posted 18 October 2010 - 08:59 AM

I am in Canada, so I doubt that my signing would mean anything (no vote-no clout).

The board has been running almost seven years. Over that time, people have come seeking help, and after having found that help, have moved on. I began reading in July of 2004, and signed up in December. In my time, I have seen that pattern so many times. The number of active members is far, far less than 30,000.





Since the US is the leading manufacturer for pharmaceuticals, legislation mandating labeling would help people with gluten allergies in every country:)
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#12 MelindaLee

 
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Posted 18 October 2010 - 07:00 PM

I was #126! :D
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#13 Rowena

 
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Posted 19 October 2010 - 08:29 AM

#155... Woot... I like that number... Though unless we get more people, I dont know if it will happen. *pout* *goes to facebook to recruit.*


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Gluten Free since Oct. 1, 2010
Fish/Seafood Free since 1997
Chocolate Free (with a few taste tests to see if I'm just crazy) since 2001.
Officially Dairy free 8/5/2013 (mostly dairy free before that, but I like my cheese and things) (dx'd officially with lactose intolerance, suspect casein too though)
Esophagitis dx'd 8/5/2013 thus doing a diet devoid of acidic foods and stuff


#14 kareng

 
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Posted 19 October 2010 - 08:39 AM

My oldest just signed # 158.
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LTES

 
"We've waited 29 years for this and not even a Giant can stand in our way." - Mayor Sly James
 
 
 
 
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#15 Rowena

 
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Posted 19 October 2010 - 09:15 AM

I got people from the Netherlands signing!!! Man I love my friends...

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Gluten Free since Oct. 1, 2010
Fish/Seafood Free since 1997
Chocolate Free (with a few taste tests to see if I'm just crazy) since 2001.
Officially Dairy free 8/5/2013 (mostly dairy free before that, but I like my cheese and things) (dx'd officially with lactose intolerance, suspect casein too though)
Esophagitis dx'd 8/5/2013 thus doing a diet devoid of acidic foods and stuff





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