National Foundation for Celiac Awareness


FDA Advisory Committee held hearings on food labeling.

Recently, the Food Advisory Committee of the FDA held hearings to evaluate the Center for Food Safety and Applied Nutrition Threshold Working Group draft report "Approaches to Establish Thresholds for Major Food Allergens and Gluten.'' 

Alice Bast, Founder and Executive Director of the National Foundation for Celiac Awareness, made a statement at these hearings based on her own experience and on the results of a survey posted to the NFCA website.

The NFCA statement as presented to the FDA on Friday, August 19th, is shown below.  A summary of the survey responses is included in this statement.   

Thanks to everyone who took our survey on gluten-free labeling!  Because of your participation, NFCA was able to present a credible case for clear and unambiguous labeling of food. Together, we can make things happen!

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August 19, 2005

Docket Number 2005N - 0279
US FDA
Food Labeling; Gluten-Free Labeling of Foods
Public Meeting of August 19, 2005

Submitted by:
Alice Bast
Executive Director
National Foundation for Celiac Awareness
124 South Maple Street
Ambler, PA  19002

www.celiacawareness.org
abast@celiacawareness.org

215-325-1306 (main)
267-625-5505 (cell)
215-283-2325 (fax)

My name is Alice Bast, and I am the Founder and Executive Director of the National Foundation for Celiac Awareness.  On behalf of all Americans who suffer with celiac disease, I appreciate the opportunity to provide information on consumer understanding of the term “gluten free” and the purchasing practices of celiac patients and their caregivers for today’s public meeting on gluten-free labeling.

The National Foundation for Celiac Awareness prepared a short survey which was posted on our website, www.celiacawareness.org, and was e-mailed to support group members around the country.  We received informative and heartfelt responses to a set of 7 questions that were developed based on Questions 8, 9 and 10 in the notice for today’s public meeting.  We will submit their full responses as part of our written comments and I will summarize them here for you today.

The respondents are educated consumers and spend considerable time and effort educating themselves and researching the contents of the food they buy in stores and eat in restaurants.  They rely on the “gluten-free” label and express trust in food manufacturers who have policies not to hide food allergens and gluten. When given a choice, they buy products that are labeled “gluten-free” over those that are not.  They are thrilled that food labeling will be soon be improved because it will save time, reduce frustration, and provide a measure of confidence that they and their families are eating foods that are safe.

Following are the questions we asked and a summary of the responses we received.

1. What does the term “gluten-free” mean to you?
The overwhelming response was that “gluten-free” means “gluten-free”, that is, that the product contains no gluten from wheat, barley or rye, and related grains.  A few mentioned ‘above a safe threshold’, but in general respondents expressed an understanding that no gluten is present in the food product, either directly or as a result of cross-contamination.

2. How do you identify foods that do not contain gluten?
The primary response was “read the label”, followed by:  calling and e-mailing manufacturers, food lists from celiac support groups, references provided from medical providers, and the internet.  Often people read labels and call manufacturers to confirm, having learned about cross-contamination potential and changing manufacturing practices as hidden sources of gluten. Many mentioned calling the manufacturer while in the grocery store in order to be able to make a safe purchase.

Respondents expressed the need to look for ingredients other than wheat, barley and rye, for example, maltodextrin, modified food starch and other ingredients that contain gluten in reality but not in their names.

Many mentioned the difficulty in eating out safely, because restaurants don’t always know whether gluten is contained in the bulk ingredients they buy.

3. How much time do you spend identifying gluten-free foods?
The responses to this question varied. Some folks indicated that now that they are educated and have their lists it does not require much time, others spend 30 minutes or more extra each week reading labels and researching ingredients. Several people said that grocery shopping takes twice as long or more now.  It was frequently expressed that they would prefer not to use their cell phone minutes calling manufacturers to confirm ingredients while in the grocery store.

Many have come to rely on the current “gluten-free” label as a time saver, and seek out brands from companies such as Kraft and McCormick who have voluntarily made allergen and gluten information available on their packaging. Many expressed the need for a uniform label so it would be faster and easier to find the information.

4.  When you purchase packaged foods, do you purchase foods that are primarily or exclusively labeled “gluten-free”?
Many respondents indicated that they do purchase products that are labeled “gluten-free” if available.  They also indicated that they must purchase products that are not labeled, and in order to do so, they must read the ingredient list.  Many mentioned the added expense of products that are labeled “gluten-free”.

5. If so, what types of packaged foods that are labeled “gluten-free” do you  purchase? For example, breads, dairy foods, canned vegetables?
Respondents listed items such as: cereals, pancake and baking mixes, breads, deserts, crackers, sauces, frozen meals, hot dogs, sausage, sliced meats, candy, protein bards, muffins, pasta, spices and seasonings, soy sauce, cookies, brownies, waffles, flours, prepared meals, soups, pizza, rice and pasta mixes, corn tortillas, cheeses, margarine spreads, pretzels, beer, gravy mix, pepperoni, chicken and beef stock, donuts, snack foods, dinner mixes, vitamins, pudding, packaged vegetables, gum, mints, toothpaste, nuts, drinks and drink mixes, condiments, salad dressing, and dairy products.

6. Does a “gluten-free” label influence your purchasing decision when you have a choice among products having identical ingredient lists?
The overwhelming response was “yes”. People indicated that they felt confident that the food was safe for them to eat if it had a “gluten-free” label.

7. Would you like to share any other thoughts about the need for accurate, understandable food labeling, or your experience with food labeling?
The overwhelming response was that people were looking forward to having clear, unambiguous food labeling so that they could be sure a food they were planning to eat was in fact gluten-free and therefore safe. Many expressed the challenge of complying with a gluten-free diet when food labels do not clearly indicate whether gluten is present.

Several people mentioned that food labeling was more understandable in other countries, and one person described a recent trip to Brazil where all foods were labeled either “contains gluten” or “does not contain gluten”. Many suggested just that as the solution – a clear label of either “contains gluten” or does not contain gluten” on all food products, including food prepared in restaurants.

Although not the subject of today’s meeting, several respondents mentioned threshold levels of gluten in food. As covered in our previous statement, based on our review of currently published research, NFCA strongly recommends that more research be done in order to determine whether a safe threshold level for gluten exists, and what that level is, taking into account the people who are most at risk.  So while some respondents recognized in their comments that there may eventually be a threshold level set, the majority believes that “gluten-free” means “gluten-free”.

In conclusion, as NFCA analyzed the responses to our survey we reinforced our own belief that clear, unambiguous labeling of food is a win-win for everyone – celiac disease patients and food providers throughout the food chain.  People with celiac disease will save time and will greatly improve their ability to select foods that are safe to eat.  Food providers, by clearly indicating whether gluten is present in the foods they produce or serve, will engender the trust of celiac sufferers and therefore create loyal consumers for their brands.

Thank you for the opportunity to speak with you today.

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Note:  The FDA contact person for this event is Contact Person: Marcia L. Moore, 301-436-2397, Marcia.Moore@fda.hhs.gov or FDA Advisory Committee Information Line, 1-800-741-8138 (301-443-0572 in the Washington, DC area), code 3014510564.