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Living With Food Allergies: Not As Easy As You Might Think

By Anne Muñoz-Furlong

Imagine that your doctor just gave you the following diagnosis: "You are allergic to milk. Go home and avoid milk." Sounds easy? It is, until you go home and actually try to avoid milk products.

Currently, there is no cure for food allergies. Strict avoidance of the allergy-causing food is the only way to prevent a reaction. And some reactions can land you in the hospital or even cost you your life.

So, how do you "go home and avoid milk"? By reading every ingredient statement for all foods, every time you shop. You'll have to allow several hours at the grocery store. As one woman put it, "It can be like having a part-time job." If you find ingredients you don't understand, you have a couple of choices: not purchase the product, or call the manufacturer and ask, "Does this product contain milk?" You may be surprised to find that manufacturers can't always give you an answer.

According to current labeling laws, ingredients in flavors or spices don't have to be listed on the label. Some manufacturers consider this proprietary information and will not answer your question; others can't get their flavor suppliers to provide the information so that they can pass it along to the consumer. As a result, an already scant number of choices becomes even fewer.

In the milk example, you'll also have to avoid being fooled by "nondairy" on the front of the package. Every year milk-allergic children have a reaction because their parents, babysitters, grandparents, or friend's parents believe the "nondairy" description on the front of the package actually means the product does not contain milk proteins or derivatives. Only after a reaction do these caregivers learn that even if a product contains casein, a milk protein, it can currently be legally advertised as "nondairy."

These days, food ingredient labels are written for food scientists, not consumers. Words such as potassium caseinate, albumin, and semolina all appear on labels. Good for scientists, but for consumers it takes detective work--or the experience of a reaction--before we learn that these words indicate the presence of milk, eggs, and wheat, respectively.

Scientists estimate that food allergies affect close to 7 million Americans, including 3 million who are allergic to peanuts and tree nuts. Allergic reactions to food account for up to 30,000 emergency room visits, 2,500 hospitalizations and between 150 to 200 deaths each year. Every one of these deaths could have been prevented by awareness and education.

In a recent informal survey, 550 members of the Food Allergy and Anaphylaxis Network (FAAN) were polled about their experiences with food labeling. Of these, 80 percent said they have called food manufacturers for more information, 88 percent believed labels are not easy to read, and 98 percent reported that labels don't give them enough information. FAAN has been working with the FDA and the food industry to write better food labels aimed at consumers.

Specifically, we should see labels written with plain English words, simple enough for a 7-year-old to read. Some companies are already using simple English terms. You'll see notices such as "Allergy Information: contains milk and wheat products." To food-allergic consumers, this is a welcome signal that their needs are being recognized and acted upon.

If a product contains milk or milk derivatives, it shouldn't advertise itself as "nondairy." If a major allergy-causing food appears in a flavor or spice mix, the label should accurately reflect this.

Additionally, too many "May contain (a food allergen)…" statements are appearing on food products. These types of statements are vague from the perspective of food-allergic consumers, leaving them wondering, "does it or doesn't it contain the allergen?" Some ask, "How can we determine if the allergen is in there or not?" FAAN's labeling study showed that 92 percent of food-allergic consumers do not eat a food when it contains this statement. Many believe food companies are using this general statement unnecessarily. (See "Food Allergies: When Food Becomes the Enemy.")

The results are mixed. Some consumers are playing it safe and avoiding the foods, although they are unhappy with the limited choices. Others are simply ignoring it. This can be like playing Russian roulette, and that concerns all of us.

We hope that the food industry and the FDA take a look at ingredient label information with an eye toward that 7-year-old who has been told to avoid milk and who is trying to determine if a piece of candy will be safe to eat. If the label reads: casein, whey, curds, caseinate, ammonium caseinate, potassium caseinate, lactalbumin, and lactoglobulin, that will not be easy. Indeed, the child may need to become a food scientist before he or she learns that these are all milk-containing ingredients. The candy is bound to be stale by then.

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