A common food allergen not required to be clearly labeled in the United States has doctors and families of those allergic to the ingredient calling for change.
The Kilsdonk family is trained to see the signs.
“All of a sudden, he starts wheezing, and he says ‘Mommy, itchy. I can’t breathe,’” said Lindsey Kilsdonk. “You see him just turn pale and then his lips started to turn blue.”
Kilsdonk’s 3-year-old son Michael suffers from severe allergic reactions. The Glenview toddler is allergic to tree nuts, peanuts and sesame. His parents know to avoid those foods, but they said it’s not always simple.
“Grocery shopping for kids with food allergies is like driving blindfolded,” said Kilsdonk.
That’s because certain food allergens are not required to be clearly labeled in the United States.
The Food Allergen Labeling and Consumer Protection Act of 2004 (FALCPA) requires food labels to identify products containing eight major food allergens – milk, eggs, fish, Crustacean shellfish, tree nuts, wheat, peanuts and soybeans. Sesame is not included.
“Feeding your children with a sesame allergy is playing Russian roulette, and you hope that you win each time,” said Kilsdonk.
An estimated 300,000 to 500,000 Americans have a sesame allergy, according to the Asthma and Allergy Foundation of America. Doctors said they expect more people to be affected by sesame as the ingredient becomes more prevalent in the American diet. Sesame seeds and oils are commonly found in hummus, breads, salad dressings, even candy corn.
“The laws haven’t caught up with (the sesame allergy), and it’s a problem because sesame is not clearly labeled,” said Dr. Anna Fishbein, a pediatric allergist at Lurie Children’s Hospital.
Sesame is usually labeled if it is a main ingredient, but trace amounts can be difficult to detect. Dr. Fishbein said manufacturers often reveal foods “may contain” or are “made in a facility” with the top eight allergens, but sesame doesn’t meet the same standard.
Sesame can also hide under generic names, such as “natural flavors” and “spices” or other obscure titles, including benne, gomasio and tahini, which makes identifying the ingredient tricky, according to Dr. Fishbein.
“I’m just baffled because we’re an industrialized nation, and we can’t label our foods correctly,” said Kilsdonk. “How can I make an informed decision about what I feed my child if I don’t have all of the information?”
Kilsdonk said she often must call manufacturers directly to ask whether certain products contain sesame. NBC 5 Investigates contacted some companies and most were willing to disclose information.
For example, Conagra stated sesame, when used, is clearly stated in the ingredient list. It is not, however, identified as an allergen in a “contains” statement in branded foods
“This statement will use plain language to disclose any of the top eight food allergens (as identified by FALCPA) contained in the food,” a Conagra spokesperson said. “Because sesame is not considered one of the top eight food allergens in the US, we encourage those individuals with sesame sensitivity to always check the ingredient list.”
A Kellogg’s spokesperson said when it comes to labeling sesame in products, the company follows existing regulations set by the Food and Drug Administration “to provide consumers with clear and accurate information on-pack.” Kellogg’s also added that it was available to answer consumer questions about their foods.
The Grocery Manufacturers Association, a trade group for the food industry, said its members are committed to ensuring food allergic consumers have all the information they need to make informed choices, adding “we look forward to continuing our work with regulators and other stakeholders on the safe production and labeling of products that contain food allergens.”
Many in the medical community and private citizens affected by the sesame allergy have petitioned for years to update food labeling laws to include sesame as a priority allergen. A bill was introduced in 2015 but has since stalled.
Under FALCPA, the Food and Drug Administration does not have the authority to alter the major food allergen list, but it does not restrict the FDA’s authority to require labeling of other food allergens as warranted.
An FDA spokeswoman said it is currently reviewing a citizen petition to require sesame-based ingredients to be listed specifically by name in the ingredient list.