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Updated November 26, 2009

Advocacy in Action

 


Gluten-free Labeling and the FDA
(Continued from homepage)

According to the FDA:

    "The purpose of the study is to gauge perceptions of characteristics related to claims of gluten-free and allowed variants (e.g., free of gluten, without gluten, no gluten), in addition to other types of statements (e.g., made in a gluten-free facility or not made in a facility that processes gluten containing foods) on the food label. The study will also assess consumer understanding of gluten-free claims on foods that are naturally free of gluten, and gauge consumer reaction to a product carrying a gluten claim concurrently with a statement about the amount of gluten the product contains."

You may recall that in March, the agency published a notice announcing its intent to conduct a study of significant interest to those with celiac disease.  The notice, which is required when the federal government wants to collect information for research purposes, stated that the FDA is "planning to conduct an experimental study about gluten-free labeling of food products."
http://edocket.access.gpo.gov/2009/pdf/E9-4766.pdf

Based on the comments received in March the FDA revised how it would gather the data for the experimental study.  The new approach will ensure that a much larger and more diverse group of individuals with and without celiac disease will have the opportunity to share their views about gluten-free labeling on food products.

Without question this information will be helpful to the FDA.
However, with the final GF labeling rule now over a year past due, let's hope this does not cause even further delay.


GIG and ACDA comment on FDA proposed GF Labeling

As part of the Food Allergy Labeling and Consumer Protection Act, the FDA was mandated to create guidelines for labeling products gluten-free. The comment period has closed. Now the FDA will review the hundreds of comments and consider their next course of action in developing final rules, laws, and guidelines related to GF labeling.

You can see here the comments provided to the FDA on the proposed rule by GIG (GIG comments) and the American Celiac Disease Alliance (ACDA comments).

The original law requires the FDA to have this section of FALCPA ready for implementation by 2008.

See FDA Draft Ruling for GF Labeling.


NIH Launches Celiac Disease Website

The National Institutes of Health (NIH) recently launched a campaign to heighten awareness of celiac disease among health care professionals and the public. The Gluten Intolerance Group of North America has been collaborating with the NIH on this campaign, which is the result of recommendations from an independent consensus panel convened by the NIH in 2004.

The consensus panel concluded that as many as 1 percent of the U.S. population have celiac disease, but the vast majority remains undiagnosed. To address this disparity, the panel recommended that NIH spearhead efforts to educate health care providers and the public about the disease.

Initially, the campaign will focus on increasing awareness among health care professionals about the prevalence of celiac disease, its disparate symptoms, and the blood test to detect it. Other campaign messages will address the array of health consequences related to celiac disease with the goal of dispelling the common misperception that it is only a gastrointestinal problem.

The campaign website at www.celiac.nih.gov provides access to

  • educational materials and services
  • current NIH research about celiac disease
  • additional campaign information and resources, including an e-newsletter

The Celiac Disease Awareness Campaign is an initiative of the National Digestive Diseases Information Clearinghouse of the National Institute of Diabetes and Digestive and Kidney Disease, NIH.


ACDA Survey

The American Celiac Disease Alliance is currently working to improve insurance coverage for nutritional counseling. Since the only treatment for celiac disease is strict adherence to the gluten-free diet, it is very important that individuals receive nutritional counseling to ensure they understand the diet, and how to make the necessary changes to ensure it is followed properly.Your responses to the ACDA survey will help them argue for improved insurance coverage. Click here to download the survey (Acrobat pdf file). Then send your responses by email or regular mail to the address listed on the survey.


GIG actively advocates for health reform measures beneficial to persons with gluten intolerance diseases, including labeling reform, increased funding for NIH, patient-rights issues, etc. Part of GIG's advocacy work is through membership in a number of Coalitions, including The American Celiac Disease Alliance, Digestive Disease National Coalition, and the Skin Diseases Coalition.

 


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