We need to figure that out...then work to get it.
The first three phrases new celiacs learn are: 1. Don't eat wheat, rye, barley or oats; 2. Follow the gluten-free diet for the rest of your life; 3.We need better labeling! All three phrases are, of course, absolutely true. But of the three, the hardest to fulfill may be the third. Numbers one and two require a personal commitment to health and a willingness to learn. Number three requires that -- and a whole lot more.
This reality was made perfectly clear in August at a day-long labeling workshop held by the Food and Drug Administration (FDA). Members of the public were permitted to attend and speak at this landmark meeting.
Officials from the FDA attended in a "listening mode," meaning they would not discuss anything. Representatives from consumer and industry groups were given time to speak, then to answer questions from the FDA officials and the audience. Three aspects of labeling were discussed, one at a time (see sidebars).
Food labeling is a touchy topic. The needs of food sensitive consumers are pitted against the needs of the food industry. In this respect, the controversy is over mandatory Vs voluntary guidelines. The food industry already has voluntary allergen labeling guidelines in place, and it wants to keep them voluntary. Not surprisingly, consumers want to see mandatory guidelines.
What We Learned
The main lesson learned at the meeting is that labeling is a lot more complex than it appears. There are accuracy, regulatory, legal, and space considerations, among others. What seems so simple to celiacs -- just tell us about any gluten in a product -- is not so simple in practice. For every celiac seeking information about gluten, there are others who want to know different information for different reasons. For every category there are placement, style, content and other considerations. For every need, there is a reason why it cannot or should not be fulfilled.
Another lesson is that we have a lot to thank the Food Allergy & Anaphylaxis Network (FAAN) for. This group has been in the forefront of campaigns to get better labeling for those who are allergic to an ingredient, especially those who are deathly allergic. Since wheat is a common food allergen, the FAAN has worked for better labeling of products that contain wheat. While wheat does not account for all gluten, it is the gluten-containing grain that is most problematic.
A third lesson is that actually achieving better labeling is a much more than simply asking for it. For the FDA to act, it needs solid scientific information, not anecdotal evidence of celiac reactions. While wheat is now working its way through the system toward better disclosure, we desperately need a single gluten-free diet in this country so we are in agreement about what we want next from the FDA.
As noted previously in this publication, we have that diet in the revised guidelines for a basic gluten-free diet from the American Dietetic Association. Questioning those guidelines for non-scientific reasons prolongs the time before we can make a solid case at the FDA.
The agency will never tell us the source of vinegar, for example, simply because some celiacs say they react to vinegars based on gluten-containing grains This is anecdotal evidence. In addition, every scientist who has been asked has testified to the safety of distilled vinegar for celiacs.
Further, unless these celiacs are reacting to malt vinegar, which might contain barley hordeins (the toxic protein), they are not reacting to gluten. Beyond the barley used in malt vinegar, no gluten-containing grains are used to make vinegar in this country.
The FDA will never be able to tell us everything we want to know about contamination. It will work on advisory statements and help assure that good manufacturing processes are followed. But before we talk to the FDA about contamination, we need to get our facts straight. For example, you will read in celiac literature that buckwheat and quinoa are very likely to be contaminated. But a little investigation shows that these ingredients are no more likely to be contaminated than any grain is likely to be contaminated.
The FDA will never listen to us if we have not bothered to do our ingredient homework. The best case example is labeling of hydrolyzed vegetable protein and hydrolyzed plant protein. Regulations that mandate source labeling of these ingredients have been on the books for years. Asking for a regulation that already exists could compromise our requests for other information.
The celiac community also needs to come to some conclusions about rye and barley. While mandated disclosure of wheat on food labels in all circumstances is being worked on by the FAAN and others, rye and barley are our problems. We celiacs need to work toward better labeling of these grains, which are not common food allergens but do contain gluten.
FDA background
At the meeting, Kenneth Falci, Ph.D., FDA Director, Office of Scientific Analysis and Support, provided some background. He said the FDA "first thought about becoming more active with food allergens in 1999. ...At that time recalls of foods that contained undeclared food allergens were at high levels." In 2000, the FDA went out to industry and to consumers to gather data, seek advice, and raise public awareness about food allergens. The results, which include a Compliance Policy Guide, are described at the FDA website (www.fda.gov). Christine Lewis, Ph.D., Director, Office of Nutritional Products, Labeling and Dietary Supplements, explained that "...our current regulatory framework is such that the labels of food made from two or more ingredients list each ingredient by its common or usual name in descending order of predominance by weight in the ingredient statement." There are two exceptions to this regulatory framework:
However, Dr. Lewis stressed that "FDA's policy is that an allergenic ingredient is not insignificant and therefore is not exempt from labeling." This means wheat, in particular, should be labeled under any conditions. Still it is clear that the FDA interpretation of the two exemptions is not totally understood nor followed by all food companies. Dr. Lewis added that the FDA is currently looking at two petitions. One is from the Attorneys General from nine states that requests FDA "require a variety of activities including allergen information on the label, an insignia (signifying an allergen present in the food), toll-free numbers, good manufacturing practices, and labeling of flavors and incidental additives." A second consumer petition addresses similar issues. She noted that the FDA has received a "Code of Practice on Managing Food Allergens," which are voluntary guidelines adopted by members of the National Food Processing Association (NFPA). It has also received guidelines from the Food Allergy Issues Alliance, a "private group comprised of industry and trade group representatives and a consumer group (FAAN) as well as a scientific advisor representing academia. When the FDA officials were finished, the focus turned to panelists who represented consumer groups and the food industry. The hours of discussion that followed were instructive and complex. They centered around three aspects of labeling that had been determined by the FDA. They are:
In our next issue, you will read about one or more of these topics in detail. In this issue, you can read some of the comments made by celiacs present at the meeting.
Ann Whelan is editor/publisher of Gluten-Free Living.
Celiac Testimony at the FDA
There is one area where I think my experience as a businessman makes me an expert and that's the talk about voluntary compliance rather than mandatory compliance. I think the voluntary efforts that have been spoken about today should be applauded, but they cannot really eliminate potential problems.
Some companies will be more proactive than others. There will always be companies that will drag their feet and not comply. It's the nature of industry to resist regulation and to minimize costs. What we have here is a balance between cost and public health, and it's the FDA's mandate to decide in favor of public health.
Cliff Blaker
Celiac parent
I've been taking notes here and these are some of the statements I've heard today: "Is looking into..."starting baseline surveys.." suggesting guidelines..." encouraging members to declare..." devoting energy to..." 'Needs to look into further..." contemplating issue," "looking at practices.." area that needs attention," struggling for decades. My main point..is that I think it's time now for mandatory food labeling. I think the opportunity for voluntary labeling has been there and there has been some effort. But as you've heard from so many people, it's just not there. And I think the time to act is now.
Dan du Bravec
Chair, Northern Virginia CSA
This is just an idea and a suggestion of taking the different food allergens (and use pictorials) that are understandable by children..The sympols can have checks through them, next to them, whatever would make the most sense and be least confusing to those who looked at a label.
Carol Rogers
celiac
Whether it comes down to voluntry compliance by manufacturers or FDA codification, I would agree with many who say that the manufacturers are trying, but we're still not there yet. It's been excuriatingly slow, and we'd like to see done whatever is needed to speed up the process. We would hope that the regulations would not slow it down. We just want it to be done.
Mary Thorpe
Center for Celiac Research
Helpful though these phrases (supplemental labeling) may be, they should not substitute for disclosure. Celiacs have long hoped for source declarations of the contents of flavoring, spice or color. They're three of the ingredients that make us uneasy I know with flavorings that the problem of trade secrets is sticky. Processors should be able to keep their secrets secret. That's what celiacs hear when they call a food processor. At the same time, we should be able to know what's in our foods and to feel comfortable about the foods we eat.
AnnWhelan
Editor, Gluten-Free Living
Feedback to the Listowners