Food Allergy Awareness Week: Not Just Peanuts!
Earlier this year, new legislation made serious waves in the food allergy community: through the FASTER Act, sesame was officially recognized as a top allergen and by 2023, food manufacturers will need to disclose sesame in ingredient labels the same way they do for peanuts, eggs, milk, tree nuts, wheat, fish, shellfish, and soy (formerly known as the Top 8). This was life-changing legislation for many people with food allergies —more than 1 million Americans have a sesame allergy, but ingredient labels could hide sesame under the guise of “natural flavors,” making the possibility of an accidental reaction very high.
This is excellent news, and a long time coming. But in addition to the now-Top 9 allergens in the US, more than 170 foods can cause allergic reactions. These foods are not included in any food labeling laws, so they can hide in common foods without any repercussion to the manufacturer. That’s always been the case, but last year’s temporary guidelines by the FDA to allow food manufacturers to substitute ingredients without disclosure or changing the label made things monumentally worse for people with uncommon allergens, since they were not included in the safety exceptions of the guidelines.
I’m allergic to a ton of foods. I often say “35+” because it’s too difficult to count every tree nut, every leafy green, every type of fish, every type of mushroom, and there are so many exotic fruits and vegetables I’ve never tried but have been warned against trying without a doctor present because of my history. My “common” allergens are tree nuts and fish, and I have a low threshold of sesame tolerance (I can eat about 2 teaspoons of sesame, not more than once a week; I consider that a lot of sesame for an American diet, but would be pretty debilitating in a Middle Eastern culture).
Because my allergies are so rare, it’s hard to communicate about them. Restaurants aren’t used to answering a laundry list of questions about their ingredients, down to the oil they use. Cross-contamination risks are greater when I eat out or consume processed foods, both because of the sheer number of allergens and the lack of transparency — there are certain products I react to even though the labels indicate they are safe, something I learned the hard way. One of my most severe allergens, horseradish/wasabi, is particularly difficult to parse out, as it’s considered a “spice” or “flavoring” in certain sauces; rather than risk death, I avoid most bottled sauces and mustards in case of hidden wasabi.
Rare food allergies are also more difficult to diagnose in advance than common ones. Allergy tests are limited to a certain number of foods — my biggest panel tested for about 75. Any other food needs to be diagnosed through a food challenge or trial and error, where you see if a reaction occurs after contact or ingestion. My childhood was filled with at-home food challenges, and my 20s was largely spent doing weekly challenges at my doctor’s office. It’s harrowing to prepare yourself to knowingly ingest something to assess whether or not it can kill you; sort of like Fear Factor, but without the hoopla that comes with being on TV.
When products or recipes claim to be “Allergy-Free,” it’s an illusion — a better description is “Allergy Friendly” or better yet, “Top 9 Free.” Some common “allergy-friendly” products — like one of my favorites, sunflower seed butter — can be just as deathly to a person with a fairly-common sunflower seed allergy as peanut butter can be to someone with a peanut allergy. I remember eating peanut butter sandwiches in sleep-away camp whenever the meals that were served contained one of my allergens, as it was the safest food the kitchen could provide at the time. My special allergy dinner would have killed the kids with common allergies like peanuts and wheat, and yet, for me, it was the safest choice.
Food allergy advocates, food manufacturers, chefs, legislators, and the general public should avoid thinking about allergies as exclusively the Top 9. For one thing, until a month ago, it was Top 8 — a clear indication of the arbitrariness of the number. In fact, other countries have different lists, some going all the way up to 14!
I like to imagine a world where there’s full transparency about what’s in our food, where we care more about people’s lives than the proprietary recipes of processed foods. Where my very reality isn’t minimized or erased because I’m in the minority. Maybe by 2033, we’ll get Congress to pass even greater legislation, acknowledging the full scope of allergic possibility. Here’s hoping.