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Petition for Gluten-Free Labeling on White House Website - Celiac.com


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#16 plumbago

 
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Posted 10 October 2012 - 03:59 AM

Takala,

At the risk of getting in way over my head, I wanted to acknowledge your comment and response. And also state that this is kind of what I was looking for in some of my original comments when I asked for an explanation about why this was (in my opinion) not getting more publicity on this site. Meaning, perhaps there was some very very good reason for it.

I did sign the petition. And I encouraged others to sign as well. There is a saying, "don't let the perfect be the enemy of the good." Now, I don't want to antagonize you by saying that, but IMO some labeling is better than none, supplemented with understanding and background knowledge. On the other hand, you are also correct in that the best thing for the US to be is the worldwide leader on the labeling issue. But how long must we wait for that? We must wait till all the stars align, and there is a savvy and sophisticated head of FDA, USDA, and all the middle managers underneath. That will be a long wait.

I will be getting in over my head in attempting to respond to your individual points, but still there are many I did not understand, like tying in the whole Farm Bill. I just don't get it. I would encourage you to be a little clearer and blunter if need be.

If you think it is naive to desire labeling such as this, then say so, but can you also say why, exactly? I don't mind blunt language as long as it is clear and fair. I just don't see the negativity behind this current effort like you do, but again, maybe I am not getting it.

Plumbago

ADDED: Yes, I understand about the PPM issue. That part I do get. It's more about the sponsoring organization, farm bill, and in general why some labeling is worse than what we have now.
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#17 GFinDC

 
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Posted 10 October 2012 - 08:36 AM

I think it is worth a try to sign the petition. Numbers are what politics is all about, and so 25,000 signatures is at least a start at showing there is an active voter body interested in the issue.

I think the labeling law proposal is an improvement over what we have in the USA now, which is nothing. Many companies voluntarily label foods gluten-free now, and the ones that do a good job of making sure their foods are gluten-free get good business. Ones that don't get bashed pretty quickly on here. Heck,we even bash companies that don't label their foods gluten-free. I expect companies who build their reputation on serving the celiac / gluten-free community will take just as much care after the law as they do now. Maybe more, since there will actually be a possible legal repercussion in place then.

The USA has been dawdling on this issue for years, courtesy of the FDA, and a leadership position is not likely to happen. We should take the current opportunity and not let it slip by IMHO. Signing now doesn't mean a change can not be made later. The European Codex limits were changed after all, after they were initially instituted. They were lowered to 20 PPM from 200 PPM. So change is not impossible in Europe, maybe it is possible here too? Kidding kind of.

Waiting for a perfect rule is just that. Waiting. We have waited long enough IMHO, we should take what we can get. It is definitely better than nothing.
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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

#18 Takala

 
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Posted 10 October 2012 - 11:05 AM

Not trying to antagonize anyone back, however, just signing a petition is NOT going to get you better labeling rules. There is simply not a large enough demographic, according to the people counting the votes in the swing states, to be worth antagonizing the manufacturers in the food industry with another labeling rule at this late date in a political campaign, coupled with that Farm Bill sitting there unfinished. (that means that all the different food growers are competing for the different Agricultural subsidies, plus disaster funding because of the drought, think of it as a big competition for Federal Bank Loans, depending on what Congress thinks they want to do) I have not met anyone in person or heard of them online, campaigning on better gluten free labeling standards for food. Instead, it is "don't antagonize those lobbyists who may be making donations," and "let the free market take care of things."

Right now is the shake down phase for the new school lunch program rules that there has to be whole grains and lower fat food served, along with a fruit and/or a vegetable, and many of the kids don't like it, so the conservative political faction is going to be eyeballing yet more food labeling rules or more potential changes to the school lunch program as just more stuff they can campaign against. Remember, the purpose of the school lunch program is not to feed kids, altho that is how it is marketed, but to support the Ag Surplus Commodities and take up the slack on food produced that would otherwise be sold at below cost, so it's a sort of Schools Price Support For Farmers program, that has as a beneficial side effect, actually feeding some hungry children.

And those hungry children are still balking at being fed more wheat and low fat foods because they don't feel well on them. I ran this argument last week in front of somebody I trust, and was told I sounded like ( :huh: :o :ph34r: a crank ), to which I countered with, why can't these policy wonks figure out that if some children aren't eating wheat and are drinking soda, perhaps it is because the lunches are literally making them feel ill, but they have no idea that they are self- selecting for foods that they can eat which have less gluten. I read this article in a newspaper (Chicago Tribune) where a school was banning brown bag lunches because kids brought corn chips and then drank sodas, the horrors. The school wanted the Federal tax dollars they get for serving each school lunch. It would never occur to these school administrators that many minority children can develop lactose intolerance at a much earlier age than the other demographics.... this is medically proven, and they don't then like to drink milk, and they're craving sugars and fats, because they need proteins. Why can't they then let them have an alternative drink, like water or juice ?! Why must they eat wheat and not corn ?! :blink: "One size fits all" does NOT FIT all children or all adults when it comes to food. However, children will eat cheese because it is lower in lactose. But CHEESE has become a "bad" food because it is higher in fat, so there is less cheese being used in some of these lower fat school meals.

This is just one example of how the insane war on chubby children is going in the lunchroom.

Locally, the rocket - scientists charged with implementing this new low fat school lunch program got rid of the salad bar in the high school to comply with the new rules to prevent the high schoolers from "eating too much of the wrong thing." You can't fix stupid. You can only point it out and hope somebody notices, eventually.

Good thing you put the disclaimer, as I can't stand that phrase "don't let the perfect be the enemy of the good" as it is used and abused to foist really bad results on everyone under the guise of "progress."

If you want results, you have to elect to Congress and the Senate some sympathetic ears that recognize that 30% of the population is at risk of becoming celiac or gluten intolerant at any time, and that untreated celiac and gluten intolerance could be affecting up to 25 million Americans, causing expensive health problems which drive up health care costs, and that better gluten free labeling standards is a thrifty and beneficial endeavor to save money. Also, these people have to be told about how lactose intolerance goes along with celiac/gluten intolerance. And "fat free milk" does nothing for lactose intolerance. The FDA can issue (or not) all the "rules" it wants to, but until you have some comprehension at the top about WHY children and adults are avoiding certain foods, because they make them literally sick, you just aren't going to get through to these types, and you won't get Congressional funding for the follow up enforcement for mis- labeling.

In the meantime, a new voluntary FDA rule, which lets oats go unlabeled and lets wheat starch pass a gluten free, isn't going to help me or a lot of others.
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#19 ncdave

 
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Posted 19 October 2012 - 05:00 AM

Thank you psawyer since that is exactly what I was looking for. I wanted to know what "rule" it was exactly I would be signing up for if I were to sign the petition. For many of us 20 ppm is frankly not safe and would leave us reeling for weeks. I know they have to aim lower but it leaves a lot of room for the higher batches as well and leaves us simply not knowing. I personally am safer today than I would be with a 20 ppm label law, many others here are as well. The standard can and should be made much safer for us. No gluten is safe for us, why the hell are we on a bandwagon to sign a petition saying that a little is fine?

I agree with this, we don"t need a 20ppm law. What most of us needs is a zero tolerance law. I also agree with GFINDC that we have to start somewhere.
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#20 plumbago

 
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Posted 29 October 2012 - 08:05 AM

I don't get it. Right now, we have no idea if barley and rye are in a product ("flavorings"), as it is not the law that gluten be acknowledged, only wheat. With the new proposal, we would know that 20ppm or less is in the product. What is wrong with that?

We are approaching the deadline. Apparently about 16,000 people have signed, and 25,000 are needed. It looks like we won't make it.

Plumbago
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#21 GottaSki

 
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Posted 29 October 2012 - 04:13 PM

Celiac Disease Foundation just sent out an email blast and it seems that people are signing -- at time of this post 17,129 have signed - take the time to sign - it can't hurt and may help move things along.

It only takes a couple minutes --

https://petitions.wh...mpaign=shorturl
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#22 GottaSki

 
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Posted 29 October 2012 - 05:11 PM

I just read the fine print....teenagers of all ages can participate :)

"You must be 13 or older in order to create an account and participate in We the People."
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#23 GottaSki

 
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Posted 31 October 2012 - 07:21 PM

Down to the wire - your participation will count -- let's make this happen -- only need 624
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#24 GottaSki

 
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Posted 31 October 2012 - 08:10 PM

25,051
one small step :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#25 kareng

 
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Posted 31 October 2012 - 08:18 PM

Just going to saythat my 16 yr old just signed it and he was over 25,000.


I think having a law gives us a place to start. This petition does not guarantee we will get a law but it is better than doing nothing.
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#26 GottaSki

 
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Posted 31 October 2012 - 08:23 PM

I agree...just find it crazy that the law hasn't been finalized after four years. Like I said...this was one very small step forward....I also felt strongly as a community we shouldn't let this thing fall short of the target.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#27 kareng

 
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Posted 31 October 2012 - 08:36 PM

I agree...just find it crazy that the law hasn't been finalized after four years. Like I said...this was one very small step forward....I also felt strongly as a community we shouldn't let this thing fall short of the target.


From my experience trying to write what became HIPAA, it takes a long time getting these "fringe" things passed. Even when you can get legislators excited about a bill, it gets re-worked and, 15 years later, becomes a law that resembles, but is not really, what you wanted. In the case of HIPAA, I wanted more restrictive laws like Kansas had at the time. anyway...that is off-topic. The point being, on this gluten-free legislation, we are ahead of a lot of health related laws. Not sure about food safety laws. This is a bit of a mess because - is it health care or is it food safety/FDA?

We will see...
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
dancing-turkey.gif
 
 
 
 

 


#28 GFinDC

 
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Posted 01 November 2012 - 07:18 AM

That's great that we got the full 25K signatures! :D Maybe they will get it done finally.
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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

#29 ncdave

 
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Posted 01 November 2012 - 08:05 AM

Here"s a good video, if you have time, that explanes the 20ppm http://www.celiaccenter.org/
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