• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Sign New Online Petition To Mandate Gluten-Free Labeling On All Pharmaceutical Products
0

32 posts in this topic

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.gopetition.com/petition/39858.html

Much Appreciation,

Marcie Taylor

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites
Ads by Google:


#73 :)

0

Share this post


Link to post
Share on other sites

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. :(

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

just signed it & posted to my FB page... 92 signatures so far...

0

Share this post


Link to post
Share on other sites




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:)

0

Share this post


Link to post
Share on other sites

I was #126! :D

0

Share this post


Link to post
Share on other sites

#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.*

0

Share this post


Link to post
Share on other sites

My oldest just signed # 158.

0

Share this post


Link to post
Share on other sites

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

1

Share this post


Link to post
Share on other sites

On Tuesday, the gluten-free labeling petition was the #1 most active petition in the U.S. Now we are down to #10 most active and have only 195 signatures :unsure: . I've got to say I'm surprised and disappointed. I contacted every Celiac organization in the United States(including universities with medical depts. studying Celiacs) on the Internet, and gave them the petition information to pass along. It's obviously not happening. This is a great way to grab the public's attention and show the FDA we are serious about this labeling issue. Unless we have a much larger number of signatures (tens of thousands) they won't bother giving it a second thought. The FDA has never responded back to me regarding what percentage of U.S. drugs contains gluten vs. those that are gluten- free. Why? Because they don't know the answer. If they were to contact a pharmaceutical representative, the representative wouldn't be able to come up with a number either. How do I know? I've called at least 10 manufacturers of pharmaceutical products and none of them have been able to give me a solid answer. Half of those companies couldn't even tell me if the majority or minority of their products contained gluten. Scared? You should be. Tell your friends and other people on this site and forums on other sites that they need to sign the petition so a collective group will hold these companies accountable for what they put in their products! Thanks to all of you who have already signed :D

-Marcie

0

Share this post


Link to post
Share on other sites

I was #219. I'll forward this link to my local support group and post on FB. Thanks for taking action!

0

Share this post


Link to post
Share on other sites

No. 221 here . . . I was expecting to see hundreds of signatures. :( It's on my Facebook page now. Hope it helps!

0

Share this post


Link to post
Share on other sites

I posted links to the Delphi celiac board today.

Deplhi celiac board

0

Share this post


Link to post
Share on other sites

I sent it to a local support group. Maybe it will get around.

0

Share this post


Link to post
Share on other sites

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

Hve you talked to Steve Plogsted who does glutenfreedrugs.com? He's a pharmacist and has been telling the FDA about this for years.

0

Share this post


Link to post
Share on other sites

The major problem with making drugs gluten free seems to be that the ingredients are sourced worldwide, so while the actual drug may be put together in the USA, e.g., its components are sourced from many different countries and you would have to make them all comply with us labeling laws. And then, again, a prescription I had filled at Walmart was actually totally manufactured in Mumbai :o

0

Share this post


Link to post
Share on other sites

If they were putting peanuts in drugs willy nilly and randomly there would be heck to pay, but put wheat in and it's so what, it didn't kill you. :angry:

And this is eventually going to lead to another massive poisoning like the melamine in the pet foods, and then in the Chinese baby formula, because if they can't track the gluten they can't really track any of the other ingredients, either.

All people are asking is that it be called on the label if it's there. What a concept! They seem to be able to tell if the active ingredient is there or not.

3

Share this post


Link to post
Share on other sites

I was only #476. You've worked hard on this Marcee. I would have expected that more people would have participated.

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,350
    • Total Posts
      935,647
  • Member Statistics

    • Total Members
      65,034
    • Most Online
      3,093

    Newest Member
    angelaemely
    Joined
  • Popular Now

  • Topics

  • Posts

    • Is your concern the social aspects of eating on the job, or not always feeling well enough to get out the door? I'm in health care, and just happened to be in home care when I was diagnosed.  It actually works well, as I make my own hours, and can reschedule visits as need be. I would think you could complete your MBA easily, maybe part time if necessary.  It's not clear what your career path might be ....counseling?   Industrial psych? Research? Once you are established (and you can do that part time if need be, to start), you will have more options for flexed or reduced hours.  If the social aspects of eating are an issue, you can always excuse yourself at meals, drive to a pleasant location, and eat in your car. Or go for a walk and find a place to eat. For work luncheons,  I just have a beverage or pick up a piece of fruit, so I give the appearance of participating. 
    • Can you tolerate nut milks? I find macadamia milk the gentlest on my stomach. The only brand I've seen here in the US is Milkadamia, and it comes sweetened or not, and fortified with some vitamins. I think this brand is from Australia. Or you could make your own. As for time, it can take awhile, and that seems to be more the norm. A recent new dairy intolerance that peaked May 3 has made me sicker than celiac ever did. Almost 3 months later and I am just starting to get better and my fatigue is improving. I had the usual ups and downs, inadvertent exposures, and trial and error.  I had only mild symptoms (comparitively speaking) at my celiac diagnosis 4 years ago, yet it took 6 months to a year for them to fully resolve after going gluten-free. It's hard to be patient when your GI tract is off, as it makes you feel ill all over.  Just keep doing the right things, introduce new foods one at a time. I would also suggest more protein for weight issues ... can you tolerate tuna? Tuna and some version of mayo? Salmon, vitamin D supplements, and bone broth seemed to have helped me recently with gut healing. Wishing you well...  
    • Thank you for your response! Again I am pretty sure my doctor did all these checks however I will definitely check to make sure and take the necessary actions if not. It just feels like a never ending run of doctor appointments and blood tests at the moment and the whole thing really did come as a surprise to me. I think I have really tried to eat healthy as I believe its so important especially being diagnosed with this disease. I feel as though its not just about eliminating gluten but also having a really healthy and balanced lifestyle. Also, I find that at the moment it is not just gluten that upsets my stomach, fruit for some reason also does. Unfortunately, people do not realize this and dismiss it which can also be annoying on top of the diagnosis. I will definitely be avoiding processed foods and have been for the last few months. Thank you for your response and I will listen to my body as you have said, it is without doubt very important.
    • Is aroy d milk gluten free?I couldnt find an information on its package,it says it doesn't have any additives.It's full fat and sold in a bpa free carton box.Anyone tried it?
    • Thank you so much for your reply, it has really helped! Your feedback on the grieving side has really comforted me to know I am not the only one and that it will get better. I am not always upset and sometimes I feel optimistic but occasionally it really just does get overwhelming especially at the moment if I am eating in a restaurant for the first few times or out with friends and have to be concerned with what I can eat and not just concerned with having fun.  In relation to my diet I have seen a dietitian and got very positive feedback. I love cooking so this has been helpful with changing diet. But, I just find that I run out of recipes and am sometimes eating the same thing on repeat which is agitating. Unfortunately, I currently cannot eat lots of fruit as my stomach responds poorly to it so my dietitian has said to eat only one or two servings a day and build up. I definitely am going to research more recipes and snacks over the next month and really try to get my diet sorted so I can feel more relaxed and better. Thank you again your response it has helped massively just to know there are people out there who understand! Thank you.
  • Upcoming Events