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

[Scott Adams]

Celiac.com

Petition for Gluten-Free Labeling on White House Website Celiac.com Celiac.com 10/08/2012 - Since 2004 when Congress passed the Food Allergen Labeling and Consumer Protection Act, sufferers of celiac disease have awaited some sort of finalized action from the FDA to set a rule for gluten-free labeling. The FDA proposed ... Open Original Shared Link

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[Adalaide]

It would have been lovely if the article mentioned what the proposed standards by the FDA are. Neither the article nor the petition mention what standard it is the petition is trying to get finalized. Frankly there are some things that could do more harm than good which is sad but true and I just wish I knew what was being proposed so I knew if I would be comfortable signing or not. Any info on that or no?

[plumbago]

Adalaide,

The person who started this petition posted on our local celiac group.

This is what she said (I have more comments at the end):

_______________________________

We've had a great start to our goal of 25,000 by November 1st, the threshold for a White House response. Please send the link to family and friends and explain why it's important to sign. Anyone age 13 and up can sign.

Make your voice heard by signing the petition today!

We created the petition on behalf of the national celiac and gluten intolerance community, in collaboration with the American Celiac Disease Alliance, which is leading the effort to finalize gluten-free labeling standards.

Go to the White House We the People website to sign. Open Original Shared Link

Last year, Food and Drug Administration (FDA) officials made a commitment to the celiac community that the gluten-free labeling rule would be completed by the end of the third quarter of 2012 (September 30).

That date has come and gone. The FDA has already heard from us. It's time for higher officials to know the celiac community needs gluten-free labeling standards, NOW!

The White House has provided us the opportunity to express our concerns through an open petition. Make sure your voice is heard.

What does the petition say?

"We petition the Obama administration to: Finalize Standards for GLUTEN-FREE Labeling

The Food Allergen Labeling and Consumer Protection Act required Health and Human Services to set a gluten-free labeling rule by 2008 to aid people with celiac disease, a life-threatening autoimmune condition. The only known treatment is a strict gluten-free diet.

An estimated 3 million Americans have celiac and even more may have non-celiac gluten sensitivity. Without adequate labeling, those on a medically prescribed gluten-free diet struggle to make safe food choices and stay well.

Children with celiac cannot participate in the National School Lunch Program when food service staff cannot determine if products are gluten-free.

Congress did its part by passing the law. It is up to the White House to protect the health of millions of adults and children by finalizing the rule NOW."

Why is it needed?

In 2004, the Food Allergen Labeling and Consumer Protection Act required the Department of Health and Human Services to set standards for gluten-free labeling by 2008. The rule is now over four years late. The FDA is working hard to get the rules done, but the White House also must know that the health of millions of Americans is at risk because they don't have access to basic information about product ingredients.

Will this petition make a difference?

According to the White House, if enough people sign the petition, it will be reviewed and administration officials will respond to the signers of the petition. In other words, we'll have their attention.

Who can sign it?

Anyone age 13 and over can sign the petition. In order to sign, users must create an account at WhiteHouse.gov and verify their email address. It's quick and easy.

How many signatures are needed?

We need at least 25,000 signatures by November 1st. So don't dawdle! Get your family, friends, neighbors, teachers, anyone you can, to a computer to sign the petition.

Please forward, post, tweet, and use all distribution channels to get the word out. We need as many signatures as possible, and quick!

For further information, please contact Andrea Levario, executive director of the American Celiac Disease Alliance, at aslevario@....

Sincerely,

Jennifer

Jennifer Iscol

President

Celiac Community Foundation of Northern California

_______________________________

Personally, I am astounded that this site does not make front and center its position on this petition and encourage everyone to sign it with banner ads everyday throughout this month of October. I am absolutely astounded. I feel the need for some kind of explanation. Or, if they themselves are ambivalent, how about an explanation for that?

Plumbago

[kittty]

If it was as easy as signing a petition in the street this would be successful...but there are a lot of hoops to jump through to sign this one.

[1974girl]

I jumped through all the hoops to sign it. If it is to label gluten in medicine, I am all for it. I am hoping nothing crazy was thrown in there. : ) I had to wait so long to hear back from a manufacterer of allergy medicine for my dd that allergy season was almost over!

[Scott Adams]

Hello Plumbago,

You are commenting negatively here on an article that we just published on this topic which now appears one the front of Celiac.com's home page, so I'm a bit confused about your negative comments. You are welcome to your opinion, of course, but I don't think it is necessary to bash this site just because you obviously have a strong opinion about this particular issue (one that Celiac.com has been writing about and supporting for over a decade now). This article will also go out in our next email update to over 100K people, so we support pressuring the FDA on this.

Personally, I am astounded that this site does not make front and center its position on this petition and encourage everyone to sign it with banner ads everyday throughout this month of October. I am absolutely astounded. I feel the need for some kind of explanation. Or, if they themselves are ambivalent, how about an explanation for that?

Take care,

Scott

[plumbago]

Scott,

Gosh, do you really think I am "bashing this site?" because I don't. I obviously use it a lot.

I was expressing my extreme surprise that the petition had not been featured more prominently. Yes, I saw the article. But why aren't there banner ads and the like, for example on every page? This seems to be one of the main reasons this site was started (pressure on government to label), what you hang around for. I don't know, it just seems that for the time being, much of your efforts should be going into this petition. Kind of like - it's now or never. I don't know, maybe I'm wrong. I do have a strong opinion, I'm sorry if you mistake that for bashing the site. It's most definitely not.

Plumbago

[Scott Adams]

Ok, maybe you should re-read what you wrote, and ask yourself if you would have said that to me in person....

Scott

[Scott Adams]

Oh, and again, you are apparently complaining here about an article that is on the home page of the site...no, the banners are not for this, they are paid advertisers who support this site.

Take care,

Scott

[psawyer]

It would have been lovely if the article mentioned what the proposed standards by the FDA are. Neither the article nor the petition mention what standard it is the petition is trying to get finalized. Frankly there are some things that could do more harm than good which is sad but true and I just wish I knew what was being proposed so I knew if I would be comfortable signing or not. Any info on that or no?

Open Original Shared Link

Reader's Digest version: Products which [consistently] test below 20 ppm gluten content may be labeled gluten-free.

My comment: To be sure you consistently test below 20, allowing for batch variances and test accuracy, the manufacturer must aim much, much lower. It is not reasonable to expect that they will aim at 19.9 ppm. They will miss many times, and the test is just not that accurate. Also, remember that zero is less than twenty.

[plumbago]

It's a great site Scott, and hopefully the blast email will make a big difference.

Plumbago

[Adalaide]

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?

[Macbre]

I'm not sure if this has become a topic on here or not, but I would encourage everyone to read the e-mail below and sign the petiton to get our foods labeled.

This is the e-mail I have recieved from the Univ. of Chicago.....

Last year, U.S. Food and Drug Administration (FDA) officials made a commitment to the celiac community that the gluten-free labeling rule would be completed by the end of the third quarter of 2012 (September 30).

That date has come and gone.

The FDA has already heard from us. It's time for higher officials to know the celiac community needs gluten-free labeling standards now.

The White House has provided us the opportunity to express our concerns through an open petition. Make sure your voice is heard!

Visit the WhiteHouse.gov "We the People" website to sign the petition.

According to the White House, if enough people sign the petition, it will be reviewed and administration officials will respond to the signers of the petition. In other words, we'll have their attention. We need at least 25,000 signatures by November 2nd.

Anyone age 13 and over can sign the petition. In order to sign, users must create an account at WhiteHouse.gov and verify their email address. It's quick and easy.

Please sign the petition today!

Sincerely,

Carol Shilson

Executive Director

The University of Chicago Celiac Disease Center

THIS IS SO IMPORTANT.....PLEASE GO TO THE WEBSITE & REGISTER SO YOU CAN SIGN THE PETITON!!!!

[Takala]

Plumbago,

The current administration is notorious for ignoring petitions, or changing the criteria of what they consider critical mass, but very good at collecting data on who's noticing that they haven't addressed a certain issue or topic.

From Peter's link, (here: Open Original Shared Link ) the problem with this proposed FDA rule is that it was written Five Years Ago, in 2007, much has changed since then, and it claims that only 40,000 people have been officially diagnosed with celiac (!) although they concede that a much larger percentage of the population probably has it and is undiagnosed.

A few things to consider:

this is the summary from the beginning of the link:

SUMMARY: The Food and Drug Administration (FDA) is proposing to define

the term ``gluten-free'' for voluntary use in the labeling of foods, to

mean that the food does not contain any of the following: An ingredient

that is any species of the grains wheat, rye, barley, or a crossbred

hybrid of these grains (all noted grains are collectively referred to

as ``prohibited grains''); an ingredient that is derived from a

prohibited grain and that has not been processed to remove gluten

(e.g., wheat flour); an ingredient that is derived from a prohibited

grain and that has been processed to remove gluten (e.g., wheat

starch), if the use of that ingredient results in the presence of 20

parts per million (ppm) or more gluten in the food; or 20 ppm or more

gluten. A food that bears the claim ``gluten-free'' or similar claim in

its labeling and fails to meet the conditions specified in the proposed

definition of ``gluten-free'' would be deemed misbranded. FDA also is

proposing to deem misbranded a food bearing a gluten-free claim in its

labeling if the food is inherently free of gluten and if the claim does

not refer to all foods of that same type (e.g., ``milk, a gluten-free

food'' or ``all milk is gluten-free''). In addition, a food made from

oats that bears a gluten-free claim in its labeling would be deemed

misbranded if the claim suggests that all such foods are gluten-free or

if 20 ppm or more gluten is present in the food. Establishing a

definition of the term ``gluten-free'' and uniform conditions for its

use in the labeling of foods is needed to ensure that individuals with

celiac disease are not misled and are provided with truthful and

accurate information with respect to foods so labeled. This proposed

action is in response to the Food Allergen Labeling and Consumer

Protection Act of 2004 (FALCPA).

DATES: Submit written or electronic comments by April 23, 2007.

So they would have no problem with foods labeled gluten free using processed starch made from wheat, as long as the processed starch was alleged to be processed down to a level of xx parts per million of gluten. This presumably would be making it easier for the importation of alleged gluten free manufactured products from Europe, where some do use this wheat starch garbage and call it "gluten free." I consider this not an improvement in labeling, but a serious setback. (you're free to disagree, but, remember, the officials writing these rules, and the researchers providing studies, usually don't have celiac or gluten intolerance, and they're more worried about the impact of Codex rules. It would never occur to them that this country could attempt to be a leader in food safety standards, instead of a laggard trying to adopt the worst world wide standards. )

Then there is a long discussion on what to do about the "oats" problem- when in doubt, "punt."

Section D, FDA's prior statements on Gluten Free food labeling

....As discussed elsewhere in this preamble, FDA proposes to define

prohibited grain to include all species of wheat, rye, barley, and

their crossbred hybrids. FDA's proposed definition of prohibited grain

would exclude all other grains, including oats and millet.

bolding mine, again.

Nobody is asking or demanding that "oats" be banned from gluten free foods or foods that are labeled gluten free, however, since the rule discussion does admit that a subset of celiacs do react to "oats," and that most regular oats are cross contaminated with the triticale family of wheat, rye, or barley because of field rotation and storage practices, it would be nice if gluten free foods labeled as such under the rule, be required to at least admit the presence of said oats on the label, if any form of oats are used, whether certified as special gluten free ones, or not. But the FDA rule might just ignore oats. Again.... this isn't progress. Sigh.

Now let's take a look at who's pushing this petition.

Jennefer Iscol - head of this 'Celiac Community Foundation' - Open Original Shared Link

Mission statement of foundation - Open Original Shared Link

New name this year (old name was Celiac Sprue Research Foundation, CSRF) for old non- profit public charity associated with Stanford Univ. "in an effort to find a drug therapy for celiac disease." Also associated with Taylor Family Foundation and their summer camps for children with special needs (with the East Bay YMCA).

Jennifer Iscol is also listed as on the board of directors of "North Bay Celiacs.org" link: Open Original Shared Link

Community partners (hey, I've eaten at some of these places...) Open Original Shared Link

but their homepage says that they are now part of and please see the "Celiac Community Foundation - please visit our new website...." and that goes back to the Celiac Community Foundation, again.

The "American Celiac Disease Alliance" aka ACDA was also mentioned in the petition solicitation, their website is here: Open Original Shared Link under "news" they have a letter to Secretary Vilsack at the US Dept of Agriculture, and his response to the ACDA regarding the FDA's progress on the gluten free labeling standard.

the letter is a pdf here: Open Original Shared Link

"Dear Secretary Vilsack, Today begins National Celiac Awareness Month, .... "

But look at this - THE LETTER IS DATED FROM LAST MAY 2012- talk about "recycled news!"

text of letter -

May 1, 2012

Dear Secretary Vilsack,

Today begins National Celiac Disease Awareness Month. In recognition of the estimated 3 million Americans with this inherited condition, the American Celiac Disease Alliance (ACDA) urges the USDA to address the need for gluten free labeling on foods regulated by your agency. The ACDA serves as the advocacy organization for celiac disease in the United States representing patients, physicians, food manufacturers, pharmaceutical companies, and others. On their behalf, I hope you will commit this month to adopt the gluten free labeling standard mandated by the Food Allergen Labeling and Consumer Protection (FALCPA), and expedite its implementation once finalized.

The only treatment for celiac disease is strict adherence to the medically prescribed gluten free diet. To comply with the diet, patients must carefully read all food labels to determine the presence of the forbidden grains wheat, rye, and barley. Thanks to FALCPA food allergic and celiac consumers are able to identify potentially harmful ingredients. Once completed, the gluten free labeling standard required by the law will provide further information to help individuals with celiac disease make informed and safe food choices. While that regulatory effort represents a significant step forward, it is not enough.

As you know, USDA regulated foods fall outside the scope of FALCPA. In order for individuals with celiac disease to be completely protected there must be a single gluten free standard applied uniformly by both the USDA and FDA. Not knowing USDA

[kareng]

I added Macbre's thread to this one. I didn't see any reason to have 2 going at the same time.

[plumbago]

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.

[GFinDC]

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.

[Takala]

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 ( 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 ?! "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.

[ncdave]

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.

[plumbago]

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

[GottaSki]

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 --

Open Original Shared Link

[GottaSki]

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."

[GottaSki]

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

[GottaSki]

25,051

one small step

[kareng]

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.