22710 Petitions and World's Largest Gluten-free Wedding Cake Move FDA Toward Gluten-free Labeling Standards - Celiac.com
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Petitions and World's Largest Gluten-free Wedding Cake Move FDA Toward Gluten-free Labeling Standards

Celiac.com 10/28/2011 - The world's largest gluten-free cake, weighing nearly a ton, debuted in Washington, DC. Gluten-free labeling advocate John Forberger presented the 9-layer gluten-free behemoth as part of his efforts to push the FDA to deliver long-promised gluten-free labeling standards.

Photo: 1 in133.The cake debuted as part of an effort to promote the Gluten Free Food Labeling Summit in Washington DC. The event included a representative of the FDA and Congresswoman Nita Lowey, who sponsored the original Food Allergen Labeling and Consumer Protection Act, as well as the world’s largest gluten-free cake, all nine layers of it.

In addition to raising general awareness of gluten-free issues, the giant cake was a reaction to failure on the part of the FDA to issue labeling standard for gluten-free foods and products.

Under the Food Allergen Labeling and Consumer Protection Act the FDA was charged with creating standards for gluten-free labeling. FDA officials were ordered to make their recommendations to Congress in 2008. As of 2011, the FDA had made no recommendations on gluten-free labeling standards.

Labeling is important, Forberger says, because buying gluten-free food is, for many people "a medical necessity, and until there’s a cure for celiac disease, eating foods free of gluten is the only treatment."

Forberger has what is diagnosed as “an extreme gluten intolerance,” where ingesting gluten, a protein found in wheat, barley, and rye, triggers chronic pancreatitis so severe that gluten reactions have hospitalized Forberger more than a dozen times.

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Even though there are many good, reliable manufacturers, "providing delicious gluten-free options, the industry is a self-regulating one . . . anyone can slap the words ‘gluten-free’ on a product and charge a premium, " he says.

Prompted in part by this perceived failure by the FDA, Forberger teamed with author and celiac expert Jules Shepard to form 1in133, a nonprofit that aims to push the FDA to comply with the Food Allergen Labeling and Consumer Protection Act. The group’s name comes from the statistic from the Celiac Disease Foundation that 1 in every 133 people has the disease. Together, they crafted the idea that became the world's largest gluten-free cake.

To promote their effort, Forberger and Shepard teamed with the American Celiac Disease Alliance to send 5,000 letters to the FDA calling for prompt establishment of standardized gluten-free labeling. They also initiated an online petition with the same message that has gathered more than 10,000 supporters.

Gluten Free Food Labeling Summitt in Washington DC. The event included a representative of the FDA and Congresswoman Nita Lowey, who sponsored the original Food Allergen Labeling and Consumer Protection Act, as well as the world’s largest gluten-free cake, all nine layers of it.

The summit and petition campaign appear to have worked. In August, the FDA announced that it would again invite public comments on gluten-free labeling with the goal of creating a uniform and enforceable definition by summer or fall of 2012.


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3 Responses:

 
Reggie Corpus
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said this on
28 Oct 2011 11:33:04 AM PDT
The summit and petition campaign appear to have worked. In August, the FDA announced that it would again invite public comments on gluten-free labeling with the goal of creating a uniform and enforceable definition by summer or fall of 2012.

Registrar Corp Registrar Corp helps companies comply with U.S. FDA's extensive food labeling requirements by cross referencing your food labeling against thousands of pages within the Code of Federal Regulations as well as the Federal Register, EAFUS Database, GRAS Notices, Guidance Documents, Labeling Guides, and Warning Letters issued by U.S. FDA.

 
kristin monday
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said this on
31 Oct 2011 6:56:23 PM PDT
Thank you for this very informative article.

 
Nikki
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said this on
10 Nov 2011 8:04:47 AM PDT
Oh this gives some high hopes for my household. My husband was diagnosed with what his doctor calls an extreme case of celiac disease. We are in the Seattle area which seems to be very GF friendly and I am so thankful for that as it has really made this life change somewhat easier. My step son has also recently been diagnosed.
This is a great article, and I hope the FDA comes through for us. This is not a fad....it's a mandatory way of life.




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Wish I could give you a hug. Unfortunately I know how that feels with Neurologists, Internists, Endocrinologists, Rheumatologists, GIs..... I got so tired of crying my drive home after refusing yet another script for Prozac. I do hope your GI can give you some answers even if it is just to rule out other possible issues. Keep on the gluten and we are here for you.

It is too bad that so often a full panel isn't done. Glad your appointment got moved up and hopefully you will get a clearer answer from the GI. Do keep eating gluten until the celiac testing is done. Once the testing is done do give the diet a good strict try. Hang in there.

That makes sense...I cried with relief when I got my diagnosis just because there was finally an answer. Please know that you are not weak or crazy. Keep pushing for testing. It could still be celiac, it could be Crohns. Push your Dr's to figure this out. Best wishes.

Thank you all very much. I actually cried when I got the answer. I wanted an explanation that I could "fix." Now I'm back to thinking I'm just weak and possibly crazy. I know I'm not crazy, but you know.

From what I have read online there is about a 1-3% chance of getting a false positive for celiac disease from a blood test. Was it a blood test that you got done? It may be worth your while to get a biopsy or more testing just to confirm it. I know being gluten free is a pain but it is better than getting cancer or other auto immune disorders.