When I was first diagnosed with celiac disease over 10 years ago, the options I found for gluten-free products were minimal; when they did exist, they were often tasteless and incredibly expensive. In the decade since, gluten-free sections have become the norm in many grocery stores, providing a wide range of options for the one in 100 people worldwide with celiac disease like me. I felt confident that there would always be convenient options readily available to me. Then the coronavirus came.
As word of a potential shut down spread in early March, I, like many others, went to the grocery store to stock up on my essentials—but I was too late. The shelves I had relied on for years were barren except for an occasional misplaced item, discarded without care as people stockpiled on supplies. In the months since, the gluten-free products I need have occasionally appeared, often with just one or two left, about to be cleared out again thanks to systemic supply chain issues. In many ways, it’s felt like I’m starting over again, desperately checking each label, hoping there is something I can substitute into my diet without fear of getting sick.
Sadly, I’m far from alone in this, as people with allergies and intolerances across the country cope with a lack of known products to shop. Joelle Speranza, 39, who lives in New Jersey, is allergic to soy, among other foods. “COVID-19 food hoarding and shortages were terrifying at the beginning. I stockpiled as much as I could because there are only certain brands from certain stores that I can eat,” she says. (Soy is a common ingredient in many packaged foods besides just tofu and edamame.) “Oatmeal is one of the few things I can eat, and since it’s a shelf-stable food, people stocked up on it. I literally put messages out on social media to see if anyone had backups just in case.”
Shortages are more than just an inconvenience for the estimated 32 million Americans with a food allergy, and the many others with conditions like celiac disease that force them to be on specific diets. They can severely impact people’s ability to eat, period. “Food shortages are devastating for everyone, but it is especially harmful for people with food allergies since they have more limited food choices and need to make sure they get an adequate variety of nutrients in order to maintain good health,” says Gabrielle Kahn, RD.
The impact of food shortages on people with allergies
While other people might easily be able to swap brands or products on the fly, that flexibility isn’t always possible for people with food allergies and sensitivities. For example, gluten appears in everything from soy sauce to Twizzlers—no item is a guarantee for those with an allergy. “People who have severe allergies can only eat certain foods that are safe for them and can only choose packaged foods that are made in an allergy-safe facility. The food label cannot read, ‘may contain’ due to the severity of the allergy,” says Kahn.
“When your body is used to certain foods, and you’re forced to substitute them with lower quality items, it can wreak havoc on the health of your digestive tract,” adds Kathy Gregory, a health coach and diabetes prevention program coach at First Mile Care. “Additionally, the health of your immune system is tied very closely with your digestive health. When both are compromised, it becomes difficult for your body to fight disease, putting you at greater risk—a big problem during a health crisis like the current COVID-19 pandemic.”
Thus, many people with food allergies are forced to spend lots more time (and money) than they normally would buying food that’s safe to consume. Karen Johanson, 57, who lives in Washington state, is allergic to dairy and soy; exposure to either triggers her asthma. “COVID-19 has made things a bit more challenging: Some online grocers show nutritional information right on their product page, but with a couple, I’ve had to research companies elsewhere,” says Johanson. “The other impact has been that my usual go-to grocery store doesn’t have delivery. So, instead of popping in there and buying tried-and-true products where I already know the ingredients, I have had to find new stores and products. Overall, grocery shopping is requiring a lot more time and expense than usual.”
While some people can go from store to store in hopes of finding their products, others can’t risk that exposure during a pandemic. Take Robin, 55, (choosing to be identified by only her first name) who is allergic to corn. “It’s processed into everything, and it’s not a top eight allergen, so it isn’t labeled,” she says—referring to FDA requirements that the most common eight allergens are clearly marked on products that contain them. (Corn is not on the list.) She says that her “already limited diet became more limited,” thanks to shortages. Plus, despite there being a variety of grocery stores near her home on Long Island, the risk of exposure to COVID-19 is too high to visit more than one. “Not only do I have food allergies, but I am also immunosuppressed, so driving from store to store like I normally did is out of the question.”
Dealing with this as an adult is tough enough, but parents of the 5.6 million children with food allergies in America are also grappling with how to feed their families safely. Suzanne Sibilla’s son is severely allergic to 16 different foods, such as gluten and eggs. “The stores are empty with the products we usually buy,” says Sibilla, who is in her 50’s and lives in the San Francisco bay area. “He doesn’t want to try new brands or new food items because of his fear around getting anaphylactic reactions. We’ve had to create a positive food environment for him during this pandemic.” She has attempted to recreate certain products at home and scours the internet to find trusted brands.
On top of everything else is the added fear many have around going to the hospital if they have an allergic reaction. Katie Klein, 23, and her sister are quarantining together at their family home near Detroit; between the two of them, they are allergic to tree nuts, apples, peanuts, sesame, shellfish, kiwi, and peaches. “My family is being extra cautious with all food, whether it be from the grocery store or carry-out from a restaurant due to the heightened fear of having to go to the hospital amidst a pandemic,” says Klein.
Finding workarounds for shortages
While this is an incredibly taxing situation, there are a few ways people with food allergies can feel realigned when it comes to food. In the tech space, companies like Freshly deliver a predetermined number of meals each week that specifically define any allergens. Then there’s Savorfull, an online shop that filters products by a customer’s unique dietary and allergy needs, to help making searching for products easier.
Looking at reliable sites that tell you which brands are safe for your allergy is another great option—such as the Celiac Disease Foundation and Go Dairy Free. Or better yet, order directly from your trusted brands online when possible. “If you have an allergy friendly brand and like a few of their products, I would recommend going online and ordering in bulk since you know it is a safe food that you enjoy and can be directly delivered to your home,” says Kahn.
If you strike out at your go-to supermarket and online, Gregory recommends thinking small and seeing if any farmer’s markets or food co-ops are in your area. From experience, these tend to be very allergy-friendly.
As for maintaining a balanced diet even with these increased limitations, “try to get a wide array of fruits and vegetables,” suggests Kahn. “Find alternatives to your favorite foods so that you are not missing key food groups. For example, if you have celiac disease and cannot find any gluten free bread or pasta in the store, try to add in gluten free grains that are made in a wide abundance like rice and quinoa to include in your diet.”
If you regularly bought allergy-friendly products before the pandemic but don’t need to, seriously consider leaving these specialized products on the shelf. “Buying these products is okay, because maybe it increases popularity, and more people recommend that a story would carry it, so when things are somewhat back to ‘normal,’ there would be more in-stock,” says Eric Katzman, 41, who has children allergic to everything from peanuts and tree nuts to avocado and sesame. “But take into consideration that this may be the only safe option for some people, and maybe, leave the one last box on the shelf.”
Nothing is normal right now, and the world is full of fear, but, for people with severe food restrictions, navigating these shortages, staying safe, and maintaining a healthy diet is another hurdle that must be faced.