The FDA just made life harder for the 32 million Americans suffering from food allergies

The FDA’s new “temporary” guidance for food labeling fails to protect against food allergies, despite assurances otherwise

Cindy Kaplan
5 min readMay 25, 2020
Photo by Bernard Hermant on Unsplash

The Food and Drug Administration recently released new food labeling guidelines for food manufacturers to address supply chain issues due to COVID-19. In brief, they allow for food manufacturers to make some ingredient substitutions without changing the product’s label. The guidelines are made with the best of intentions, I’m sure, to ensure that there’s no shortage of packaged foods available for most of America.

Many of the guidelines seem reasonable and protective of the consumer. For instance, you can’t make a marketing claim on the label that a tomato sauce is made with portobello mushrooms and substitute the mushrooms, but a tomato sauce with portobello mushrooms as simply one of the ingredients can sub in button mushrooms. On the surface, and to many consumers, this seems logical and fine.

However, these guidelines, released without public comment or participation, don’t take into consideration people with food allergies, despite claims to the contrary. Though Section B indicates that “ the ingredient being substituted for the labeled ingredient does not cause any adverse health effect (including food allergens…),” the FDA’s definition of food allergens is limited to the Top 8 allergens (peanuts, tree nuts, milk, shellfish, fish, eggs, wheat, soy). Those 8 allergens account for 90% of all food allergies — which is a lot, but not when you consider that more than 170 foods have been known to trigger allergic reactions. About 40% of children with food allergies are allergic to more than one food (and that percentage doesn’t include the allergic children who become adults or the adults who develop food allergies later in life). In the EU, Canada, and Japan, the list of top allergens is longer and can include sesame, buckwheat, mollusks, celery, mustard, and lupin; sesame allergies have been estimated at 0.7 million in the US, compared to 1.9 million soy allergies — a small delta, when you consider that soy is Top 8 at 1.9 million and shellfish leads the Top 8 pack with 8.2 million. The very notion of the Top 8 is arbitrary.

The FDA’s guidelines purport to cover this additional risk and indicate in section C2A that these additional popular allergens “should” be avoided. The word “should” is key here, as the document’s introduction expresses that “The use of the word should in our guidance means that something is suggested or recommend, but not required.” For someone with a life-threatening food allergy, “should” is not good enough. “Should” means you could die.

Let’s dig a little deeper, shall we? Of the 170 foods known to trigger allergic reactions, 162 are not unequivocally covered by the new labeling requirements. Of the 170, 156 are not covered AT ALL. That means those foods being used as substitutes without notifying the consumer is totally fine, according to the FDA.

Another issue at hand? The FDA doesn’t consider highly refined oils and their derivatives, like peanut oil or soy lecithin, to be considered allergens. And while most people with peanut and soy allergies can tolerate those ingredients, others cannot. Add those allergy sufferers back into the group that’s now affected by these guidelines.

What does this all mean practically? As a person with 35+ food allergies (only 2 of which are Top 8 and 3 are Top 14), I’ll have to avoid most packaged foods until the guidelines are reversed AND the old products are all off the shelves — an unknown amount of time. I already check ingredient labels religiously (and not just for the kosher symbol!) to make sure nothing’s changed — once in the store before purchasing and once before eating, in case I misread while shopping.

If I don’t, the consequences can be dire. My allergic reactions range from hives to swelling to anaphylaxis, which could lead to death if not treated correctly. And no, contrary to pop culture representations, a stab of an Epipen is not always enough and certainly doesn’t spring you back to normal in a flash. After the initial Epipen injection, a person experiencing anaphylaxis needs to go to an ER immediately, as the effects of an Epipen may only last 10–20 minutes. Allergic reactions can recur, so a hospital can provide additional life saving treatment. It’s been my experience that once my life is saved, it’s not all immediately rosy, but rather, I feel sick for days and continue a course of treatment with Benedryl and steroids.

In other words, food allergies are a serious disease. They are a life-threatening condition that affects millions of Americans.

The pandemic has already made life with food allergies more challenging; early hoarding meant that some of the goods I rely on for my diet, like canned beans and corn, pasta, rice, and tomato sauce, were either totally out of stock or the remaining products weren’t the ones that contain safe ingredients. Utilizing grocery delivery services or curbside pickup is difficult, because I can’t read the ingredient labels myself, and instead have to pick products that list their ingredients on the various apps (that’s not as many as you’d think!) and limit substitutions. It’s not like shopping in a store is a great solution either — it’s harder to linger in an aisle and carefully read a label when you’re supposed to keep moving and maintain distance. Even getting fresh foods delivered is a challenge. Recently, our Instacart shopper accidentally included three boxes of strawberries in our order; luckily my allergy to strawberries is not contact or airborne, but there’s always the risk that the next surprise inclusion will be horseradish, avocados, or kale.

All that said, my experience is one of privilege. I can afford fresh produce. I can afford a variety of meats and cheeses. I have time to cook and prepare meals. People who rely on cheaper, packaged foods may go hungry or may risk their lives to eat a formerly safe product. I’m also an adult and have experienced many ups and downs with my food allergies over the years. But children with food allergies will need to be extra vigilant as the world reopens and avoid accepting snacks from friends and communicate with their teachers about why a previously safe item is no longer safe despite what’s on the label. That’s a big burden for children already coping with a confusing new world. I also don’t have asthma, though many people with food allergies have both conditions, placing them in a high risk category for COVID-19.

I’ve written about how life with food allergies has made coping with the pandemic easier, how I’m an expert as being social while maintaining social distance and how I’ve lived my whole life assessing life or death risk. That’s all still true. And I’ll cope with this, alongside millions of others, by changing my diet and practicing extra vigilance. But it shouldn’t be this way. We should be able to rely on our government agencies to think policies through and protect the vulnerable. The word “should” is key here.

Maybe if we speak loudly enough, they’ll hear our voices. Take action now by signing this petition calling on the FDA to revise its guidelines.

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Cindy Kaplan

Writer, entrepreneur, animal lover. Navigates life with optimism, humor, and 35+ food allergies. Now writing at cindykaplan.substack.com