Profile Series: The Untold Endeavor of Eating
What life with over 40 food allergies has taught Cindy Kaplan about managing & accommodating them
This is part of a series of profiles focused on life with various illnesses and disabilities. If you’re interested in being profiled, feel free contact me at zoecunniffe@gmail.com or through Substack direct messages.
When Cindy Kaplan was in sixth grade, her teacher brought in five pounds of chocolate to share with the class. For the other kids, this was a special treat—but for Kaplan, who’s allergic to chocolate, being sealed into a confined space with such an extreme amount of the substance was a hazard. She became lightheaded, her vision going glassy, and as she explains, “I decided I wasn’t taking that anymore. And so… I just left.”
Crazily, no one intervened as eleven-year-old Kaplan left the building, walked home, and explained to her startled mother that she wasn’t going to tolerate an environment that made her sick. Looking back on this, Kaplan has mixed feelings. On the one hand, she’s proud of her younger self for taking charge to keep herself safe—and it’s through situations like this that she developed the “really strong grit” she now sees as one of her strengths. But at the same time, it’s angering to realize no one else was looking out for her. “Maybe I shouldn’t have just walked out of school,” Kaplan says. “Was that safe? Why was my teacher not aware that I had allergies?”
It’s actually possible that Kaplan’s teacher was aware—but that, without having food allergies herself, she assumed Kaplan would have to eat the chocolate herself to react to it. This misunderstanding of allergies is something Kaplan is far too used to. As she explains, people seem to view life with allergies as one of two extremes. Some think people like Kaplan must “live in a bubble” and never interact normally with others. Others, meanwhile, make the same faulty assumption Kaplan’s teacher likely did: that having food allergies is as simple as removing certain ingredients from your diet while eating everything else as normal.
“It’s really somewhere in between,” says Kaplan. Food allergies come with endless complications that remain invisible to most people, but this doesn’t mean someone like Kaplan can’t participate normally in society—there’s just more management required to do it.
(Kaplan does a brilliant job detailing her life with allergies on her Substack, Chocolate-Covered Lox):
“A lot of people want to accommodate,” says Kaplan—but even when people are well-meaning, they often have an overly simplistic view of food allergies.
“It’s not just about what I eat,” Kaplan explains. With her airborne allergies, just existing near a certain food can cause anything from dizziness to hives to full-on anaphylaxis. Kaplan used to have a whole host of airborne allergies, reacting to the presence of everything from cabbage to cauliflower to pomegranate, which limited her ability to even enter restaurants that served some of these. Luckily, since starting an allergy treatment called Xolair in 2014, her airborne allergies have dwindled to just horseradish and wasabi. Allergens also show up in everything from massage oils to medications. In fact, Kaplan hasn’t been able to get her hair dyed recently because her usual stylist, who actually has a dye she isn’t allergic to, has been traveling.
Kaplan even had one reaction recently because she breastfed her one-year-old daughter after her daughter ate fish. Her allergist had assured her this would likely cause no more than a mild rash, but while it’s true more severe reactions from breastfeeding are incredibly rare, Kaplan learned the hard way that they’re still a possibility. “I had internal swelling,” she recalls. “My vision started fading… I felt like I was going to pass out, that kind of doom moment.”
When it comes to food itself, people often assume that managing allergies is as straightforward as steering clear of certain items on the menu. This might be true for someone with a single allergy to something easily avoidable like apples or pecans, but for Kaplan, who has over 35 allergies, preventing reactions is much more complex. On top of this, Kaplan is Jewish and keeps kosher, which only adds another layer of complications.
“So much goes into eating that, if you don’t have trouble eating, you don’t think about,” says Kaplan. “The amount of work it takes to eat and just exist in society is a lot more than people think.” For her, it’s hard to make sense of the opposite scenario—she had her first allergic reaction at two days old, meaning she’s never known a world where she could just pick up food and eat it.
People who want to accommodate Kaplan’s allergies sometimes offer to make sure they eat in a restaurant that meets her needs, not realizing that going out to eat is usually more effort than it’s worth. For one, Kaplan has to pore over menus in advance to make sure restaurants won’t trigger her airborne allergies—which was especially laborious before she started Xolair. Sometimes, Kaplan is okay so long as her group sits outside, which is usually feasible because she lives in California, and no one orders the offending foods. Even so, it can be awkward to dictate what other people eat, even when they’re understanding.
Then, once she’s actually at the restaurant, Kaplan has to speak to the waiter to make sure her food is prepared safely, which can be an ordeal considering how many allergies she has, including many to foods restaurants aren’t used to customers being allergic to and may not have proper protocol in place to handle. And even once Kaplan has her food in front of her, it’s hard to feel present when she’s relying on the caution of strangers to avoid a potentially fatal medical emergency from cross-contamination. “I'll look at every single bite to make sure it's what I think it is,” says Kaplan. This distraction can be frustrating, especially at work events. “I don't want to have to be picking at my food while I'm supposed to be a professional,” Kaplan explains. “I want to focus.”
While it may go against what people expect, Kaplan actually prefers that people don’t try to accommodate her allergies at restaurants and events. Instead, she appreciates it when she can bring food she prepared herself, which she knows is safe to eat.
Then again, cooking all of your own food comes with its own “mental load,” as Kaplan puts it. For example, without the ability to just pick something up if she’s in a pinch, Kaplan has to keep her kitchen well-stocked at all times—but her food allergies can make grocery shopping a hassle.
The FDA mandates that food manufacturers clearly list allergens on food packaging, but this only applies to a designated set of foods known as the Top 9 allergens, which cause about 90% of food allergy reactions in the US. Since most of Kaplan’s allergies fall outside the Top 9, she has to carefully read through the full ingredient list—even for products she’s purchased in the past, which can swap out their ingredients at any time.
This also means that “even things that are allergy-friendly aren’t necessarily Cindy-friendly,” Kaplan adds. A number of brands boast “allergy friendly” products, while websites and social media accounts are available online with recommendations for allergen-free meals, but while these are useful for avoiding peanuts and gluten, “allergy friendly” only means so much when you’re allergic to buckwheat and xanthan gum.
Cooking all her own food also makes it hard for Kaplan to be spontaneous, and spending substantial amounts of time outside her home requires careful preparation, since she has to cook beforehand, making sure to choose meals that won’t go bad in the time she’s away. On vacation, she typically has to cook days of meals before she departs while leaving extra space for them in her luggage. Cooking during her trip is also an option, of course, but this comes with considerations: where she’ll cook, which grocery store will have products she can trust, whether she has all the cooking utensils she’ll need. “I have a drawer full of can openers from all the trips I forgot to pack the can opener,” she says—which can get expensive.
Still, as exhausting as this nonstop diligence can get, it’s not all bad. Kaplan’s years of attending to the minute details of her diet have given her keen attention to detail. Plus, because recipes are rarely written to suit her needs, she’s become adept at switching out foods and cooking without instructions. Compared to most people, Kaplan says, “I’m more intentional about what I eat… I have a lot more confidence in the kitchen.”
A recent New York Times article highlights the way GLP-1 drugs like Ozempic, which are now prescribed to more than 8% of Americans, are reshaping the landscape of social eating. Because these drugs tend to suppress users’ appetites, those taking them often find themselves unable to finish their meals at restaurants, prompting concerns about offending the chef or being lousy eating companions. The article shares insights from expert nutritionist David Wiss, explaining,
“Dr. Wiss said it’s important for patients who are new to GLP-1s to consider how they might handle social situations that can arise from eating less in public. ‘When people stop drinking alcohol, for example, it’s helpful for them to think through how they will respond when people offer them a drink or a waiter is disappointed they don’t order wine,’ he said. ‘We are seeing that recreated with food.’”
It’s intriguing to see this dilemma framed as something brand-new. After all, these social ramifications may be foreign to people who’ve never had to follow a restricted diet, but they’re all-too-familiar for the millions of people with food allergies and other dietary conditions. This is something else Kaplan’s sixth-grade teacher missed the day she brought in chocolate—even if Kaplan didn’t react to the mountains of chocolate around her, it’s still not fun to be the only kid in the class watching from the sidelines while everyone else has fun.
Research actually shows that eating the same food as other people builds closeness and trust, even between total strangers. Unfortunately, this also means not eating what others do has the power to divide us. In a 2020 study, researchers asked participants to eat together in pairs and assigned some of them dietary restrictions. Afterwards, those with restrictions reported experiencing more loneliness during the meal—a feeling Kaplan is no stranger to.
For example, she remembers sitting hungry at summer camp snack times, watching the other kids tear through the food provided by the camp, which offered no Cindy-safe alternative. Later, as an adult, she found herself sitting at work dinners where she was the only one unable to eat, even though she’d spent hours scrutinizing the menus beforehand to make sure she wouldn’t react just entering the restaurant.
Still, Kaplan has learned to minimize the impact allergies have on her social life. “I don’t view food as social,” she explains, and she’s lucky to have friends who are willing to socialize in ways that don’t involve food. “We'll meet for coffee, we'll meet for beer, we'll go for a walk,” Kaplan says. And when they do dine together, her friends know not to make a thing out of Kaplan bringing her own food.
Kaplan even finds perks to not being able to eat in social situations. While everyone else is eating, she focuses instead observing her dining companions, gaining insights in how people interact, which she believes actually enhances her relationships by making her more empathetic.
Knowing what she knows now, Kaplan realizes that some events she brushed off as the normal consequences of life with food allergies were actually mistreatment that she shouldn’t have accepted. In one early assistant job, her employer made her feel like she had to sacrifice her health to evade professional repercussions—offering free lunch Fridays that Kaplan couldn’t participate in but still had to risk her health picking up the food for, forcing her to work out in her car while they made green juices in the office, assuming she could simply pop a Benadryl if they decided to eat in front of her.
“If I could go back in time, I would’ve advocated better for myself,” says Kaplan. After all, she’s learned since then that food allergies are covered under the Americans with Disabilities Act (ADA)—meaning employers are actually required by law to accommodate her needs. But at the time, Kaplan, early in her career, assumed she had no choice but to accept what was happening.
“It felt really unmanageable,” she says. “There was no telling them, like, Hey, don’t do that. I didn’t have that kind of power structure.” Worse, Kaplan’s employer treated even the slightest accommodations as special treatment, making her feel like she had to scramble to keep from becoming a burden in the workplace. “It was made clear to me that I had to be better at my job than everyone else,” she says. “It was really damaging to have to outperform everyone while being told my sickness didn’t matter.”
Now, Kaplan excels at advocating for herself, but the problem is that having to constantly talk about her allergies invites conversations that she’d rather not have. Sometimes, people make comments that are obnoxious but harmless, such as when they share lengthy descriptions of whoever in their life has a food allergy and recount the gritty details of their allergic reactions as if this is all completely new to Kaplan. Similarly, people make misguided assumptions about what Kaplan can eat, shielding her from peanut butter unnecessarily while failing to understand why she can’t eat lettuce or arugula. This happens even when Kaplan is eating right in front of them. “People will be like, Oh, you have allergies, so you’re gluten-free,” she says. “And I’m like, I’m eating bread.”
Even when people’s questions are perfectly polite, it’s still uncomfortable having to divulge personal health information to everyone from coworkers to total strangers. For Kaplan and many others with food allergies, these situations lead to what researchers at Clarkson University dubbed disclosure fatigue, or “the tiring of being compelled to persistently communicate with others about one's otherwise invisible condition.”
“This is my medical history,” Kaplan says. “It’s very involved. I don’t want to get into it with everyone.” Unfortunately, eating around other people pretty much guarantees that she’ll have to mention her allergies, which people may falsely perceive as a desire to talk about them. “It makes me feel very other,” she says, and she wishes the conversations didn’t make allergies so central to her identity.
For example, she remembers a work trip where her company gave her a budget for meals, and the woman in charge of payroll was baffled to see that Kaplan’s receipt was for groceries rather than takeout, forcing Kaplan to disclose her allergies. “She was fascinated by my life experience,” Kaplan recalls. “She didn’t give me trouble, but she made me feel alien.”
It helps, then, when others make an effort to accommodate her allergies without drawing unnecessary attention to them. At one particularly memorable Shabbat meal, the host simply stated that, because some guests had food allergies, she was going to announce the meal’s ingredients to the whole group at once. This anonymized approach is helpful, Kaplan explains, because while she tries to brush off the topic of her allergies, she doesn’t want to “brush off the seriousness of it.”
Kaplan also prefers not to talk about what happens when she has a reaction—which is something people often ask about after finding out she has allergies. Not only do her reactions vary wildly depending on everything from the amount of food to the airflow in the room to whether her seasonal allergies are flaring up, but her worst reactions are something she’d rather not dwell on. “I don’t want to talk about all the times I’ve almost died,” Kaplan says. “Having food allergies that are potentially deadly makes my mortality a very present thing in my mind, and I do a lot of work to not have it be present.”
People may not realize the gravity of Kaplan’s allergies because, to them, she appears healthy. “If you say to someone, like, the worst thing that could happen is I die, they look at you a little bit like, Are you nuts?” she says. “Because you’re alive, obviously. You know, it can’t be that bad.”
Reactions like this make Kaplan feel like a hypochondriac because of the lengths she goes to in sidestepping her allergens. In truth, Kaplan is quite healthy—she hasn’t needed to use her EpiPen in over a decade, and even her milder reactions are scarce at this point. But this isn’t because nothing is wrong; rather, Kaplan is healthy because she’s so conscientious about managing her allergies. “I’m not sick,” she explains. “I don’t have severe health problems except for if you handed me wasabi, I’d be dead in thirty seconds.”
As adept as Kaplan is at managing her allergies, not every situation has a clear right answer. For example, deciding whether to eat something from the grocery store isn’t as simple as just making sure her allergies aren’t listed in the ingredients, since there’s always potential for cross-contamination. Food packaging in the US frequently includes a May Contain statement with any allergens the product could’ve unintentionally come in contact with during production—but as usual, this is limited to Top 9 allergens. “No one’s listing cross-contamination for horseradish,” notes Kaplan. Without knowing which products to watch out for, Kaplan is left with an impossible choice between needlessly limiting her diet and risking reactions by trying new things.
Meanwhile, there are no clear instructions for being a parent with food allergies. Research shows that early exposure to foods reduces the likelihood of becoming allergic to them later on, so Kaplan doesn’t want to restrict her daughter’s diet to only what she herself can eat. However, she’s still figuring out how to strike a balance between her own safety and her daughter’s diet. “I have this obligation to stay alive for her because I’m her mother,” Kaplan says, “and I also have this obligation to feed her and not instill fear in her about food.”
She recognizes that this will only get more challenging as her daughter gets older and starts wanting to go to restaurants or eat meals together that aren’t possible for Kaplan. “I don’t know how to navigate that,” Kaplan says. “If anyone has advice, I’m curious.”