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[admin]

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 ...

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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. http://wh.gov/Be7R

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!

[admin]

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

[admin]

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

[admin]

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?

Wordy, but the 2007 proposed rule is here. Click.

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: http://www.fda.gov/F...n/ucm077926.htm ) 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' - http://www.linkedin....n/jenniferiscol

Mission statement of foundation - http://www.celiaccom...out-us/history/

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: http://www.northbayc...rg/aboutus.html
Community partners (hey, I've eaten at some of these places...) http://www.northbayc...g/sponsors.html
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: http://americancelia...celiac-disease/ 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: http://americancelia...-1-May-2012.pdf

"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’s position with regard to labeling, whether it will adopt the final FALCPA standard, or undertake separate rulemaking, is creating concern and anxiety within our community. Multiple standards, or worse, no standard at all for foods regulated by USDA would be problematic for celiac consumers. In addition, it would be confusing for individuals responsible for carrying out federal meal programs, like the National School Lunch Program, which requires accommodation of the gluten free diet for students with celiac disease.

It is our sincere hope that the USDA will provide a positive statement during May about its future plans pertaining to gluten free labeling. By doing this, you too, will be raising awareness about one of the world's most common chronic and life-threatening conditions.

*ping!* Uh, it mentions the School Lunch Program.....
Oh, wait, we do have that Farm Bill that was never completed and left hanging by the U.S. House of Representatives this fall, and will have to be completed in the Lame Duck or a special session. As in, it has to be completed, no hyperbole, or the nation does not farm this coming year. Could this be what this is really all about ?

Secretary Vilsack's response, to Levario of ACDA, dated a month later, on June 6, 2012 (big priority there) (pdf download) http://americancelia...Sec-Vilsack.pdf

The letter claims that FSIS requires all sources of protein, including grains, to be identified by their common and usual name. It also says that FSIS has established policies to allow processors to voluntarily add allergen statements to their products, and that adding allergen statements is voluntary, but the FSIS "supports and encourages it."

Get a load of this. "FSIS permits 'gluten free' labels and requires that establishments using this claim maintain processing controls to ensure its accuracy. " quote from the letter. Permits as in they allow this to happen, not that they issue permits.

The letter does not address the request of the petition, instead, it lines out what is already being done on a voluntary basis to comply with what rules exist, using the evasion that FSIS is for labeling meat, egg, and poultry products.

..... While much work remains to be done, these steps appropriately use our regulatory authority to protect the public health, specifically for allergen- sensitive citizens. I appreciate receiving your continued input into this important issue. For more information about FSIS' labeling policies, please visit the Agency's Web site at http://www.fsis.usda...ance/index.asp.

Thank you again for your letter and your concern for food safety. Sincerely, Thomas J. Vilsack, Secretary

This comment was written to show that these organizations need to at least come up with some original content when soliciting, also, that the Secretary of the USDA doesn't seem to "get it," and feels that voluntary standards are adequate.

[kareng]

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