What’s it like to navigate Charlotte’s food scene with severe allergies?
Handmade cupcakes for a party. Forgoing restaurants on trips. Many, many calls to manufacturers, companies, restaurant managers. Being scared, anxious, nervous — and grabbing an EpiPen and going out into the world anyway.
This is the life that Charlotteans dealing with food allergies live.
Food allergies in the United States have broadly increased in recent years, and the share of those under 18 with a food allergy has doubled since the late 1990s. North Carolina in particular has seen this growth in allergies: In 2016, North Carolina was the state with the highest percentage of insurance claims with food allergy diagnoses.
CharlotteFive spoke with Charlotteans who are navigating the allergy life to better understand the challenges they face and the lessons they’ve learned along the way.
Life with an allergy
Living a life with allergies is an exercise in anticipation. It’s always thinking five steps ahead, thinking about things people without allergies never think about. It’s a tight-rope walk, where the smallest misstep can end with an ambulance call.
“If we’re doing something we’ve never done before, I will wake up and worry,” said Shelby Helms, mother of 17-month-old Lucas, who has allergies to eggs, peanuts, tree nuts and bananas. “I tell my husband, ‘Hey, if I say anything bad or if I’m short, I’m sorry.’ It’s kind of sad but I’m always waiting for the next reaction.”
Food allergies occur when the immune system makes antibodies that identify an allergen as harmful even though it isn’t. Reactions range from hives to vomiting to life-threatening anaphylaxis and vary in intensity. Some people have mild reactions from direct contact; for others, merely being in the same room as the allergen can cause a severe reaction.
All of this means that anticipation and preparation are key to managing allergies. But even being as prepared as possible can’t fix a lack of response from businesses — nor can it allow for the freedom those who don’t have allergies have.
“Going outside is very difficult,” said Jenn Griffin, a mother of two kids whose allergies combine to include tree nuts, milk and eggs. “I personally don’t think there is a lot for us. ... Our opinion is that we just haven’t had luck.”
“Every time we vacation, we usually have to get a place with a kitchen,” Griffin said. “We’ll usually go to a local Wal-Mart and get what to eat. We don’t usually go out to dinner on trips. We just don’t have that luxury. Red Robin and Chick-fil-A are pretty much our only options when we travel. We usually keep a cooler in our car. We keep snacks. But that also starts to affect their health. ... It’s all a struggle.”
Anaphylactic reactions
“For me, it’s so much more of a challenge,” said Shietterick Melton, 31, who has mast cell activation syndrome, a severe condition that results in repeated anaphylactic reactions. “It’s essentially me asking everyone to accommodate someone’s life for me. Restaurants say, ‘Well, this doesn’t have nuts in it,” and then when you ask, ‘Well, is it from a facility that uses oil?” And then you get the attitude. It’s hard.”
Mast cell activation syndrome is a condition in which mast cells — which are responsible for allergic reactions — excessively release chemical mediators, resulting in anaphylactic and other severe reactions. So sensitive is Melton’s condition that she can have a life-threatening reaction anywhere without knowing where the trigger came from.
“I’ve been dealing with this for now seven years,” Melton said. “I get told this a lot: ‘Oh, you’re fine, just avoid your allergens, you’re fine.’ How do you avoid your allergens if the things you use aren’t properly labeled? People don’t think about that.”
Jeannette Intartaglio, a stay-at-home mom, has embraced her life managing her 5-year-old daughter Skyler’s tree nut and sesame seed allergies. She calls manufacturers, restaurants and other places to assure the products her daughter is consuming are safe. But even with the utmost diligence and attention, she still feels uncertain.
“Even if you’re away from home and you’ve checked all the boxes, there’s still doubt,” Intartaglio said. “If you’re out, you’re not in control. If you’re at someone’s house, you’re not in control. In your home, you’re in control. Out and about, you’re not in control. It can be a lot.”
Managing an allergy can be demanding and overwhelming. It’s enough to make the most determined person crack. But for a parent, the love for their child trumps all.
“How do you pull yourself out of the dark moments?” Helms said, “I guess it’s just being a parent. They need you. You just can’t be in a dark place — they need your energy. I need him to see that he’s OK and he’s going to live a normal life and be OK.”
The love Yolanda and Rob Gibson have for their 8-year-old daughter, Emma, comes through in their solidarity. The family faces a daunting challenge of navigating Emma’s eosinophilic esophagitis, an allergic inflammatory disease that swells the esophagus. Emma’s triggers are gluten, soy, peanuts, some tree nuts, milk and eggs.
The family can rarely eat out because of Emma’s sensitivities — but that doesn’t stop them. They glean safe recipes from cookbooks and cook meals together. They try to make sure Emma can eat every meal they make.
“Yolanda is a very good cook,” Rob said. “Everything she makes — we basically adhere to Emma’s diet. Yolanda has gotten really creative. She has learned a lot about how to combine foods and what ingredients to get. … I mean it’s become a family thing. It’s really the only way to do it and not have Emma feel ostracized or set apart from the rest of the family.”
“You just try to make sure you’re doing whatever is best for her,” Yolanda said. “Ultimately, it’s her who has to carry the burden. My sympathy lies with her, and it’s not really about me — it’s about how I can improve the quality of life for her. You do whatever you need to do to do that.”
Finding solace in the allergy community
Living life with an allergy can be lonely on top of being anxiety-ridden and stress-filled. Support groups like Parents of Allergic Kids Charlotte and allergists like Dr. Nikhila Deo Schroeder at Allergenuity have helped ease the minds and bodies of Charlotte families managing allergies.
“At first it was scary — I went through a rough patch,” Helms said. “I’m normally someone who keeps it pretty together, but when I was at PAK, I let it all out. They were open and helpful.”
Friends and family help alleviate the stress, too, several Charlotteans said. But for some, social gatherings can be more complicated than just having supportive friends.
“People still rise to the occasion — it’s just us not having the comfort,” said Betsy Leonardi, whose 5-year-old daughter is allergic to peanuts, dairy and eggs. “Sometimes people don’t know how to really avoid allergens. And then you have to think about, ‘If you make grilled chicken, is it made on the same grill as a cheeseburger? Did the cheese touch what they’re eating?’ That’s the type of thing we’re dealing with.”
Several Charlotteans dealing with allergies noted the patient, attentive and thoughtful support they’ve received from Schroeder, a welcome change from the chaos often encountered with other allergists.
“Improving a family’s standard of life is more than a treatment,” Schroeder said.
Navigating life with a food allergy
Kevin Stokes, 15, has peanut and tree nut allergies. (He also outgrew a milk allergy and is desensitized to an egg allergy.) Though his mother, Jodi, once held the reins in managing his allergy, Kevin is now stepping up.
“Going to eat out is much easier now,” Kevin said. “It’s easier throughout the years. I get to have my say and tell the waiter what I want, what I need. ... When you’re younger you let your mom take care of it. But you have to take control at a certain point.”
“One of the profound moments was once when Kevin was little, and I was freaking out to a nurse about taking him to the park,” Jodi said. “I was paralyzed with fear. She said, ‘You gotta live life and bring Epi.’ That’s stayed with me ever since.”
Being prepared is key to life with an allergy, Intartaglio said.
“I usually have cupcakes on hand,” Intartaglio said. “I make most things from scratch. And we travel for the holidays, so how do you handle that? My daughter loves Chef Boyardee ravioli. We brought a couple cans of that, and she had that for the holidays. And she loved it.”
And when it comes to interactions with other people, Helms recommends the simple act of being kind.
“You have to understand that they don’t eat sleep and breathe this like you do,” Helms said. “Don’t assume that everyone knows. Whenever you do find out they don’t know, find the time to educate and come from a good place.”
At Burtons, an allergy-friendly mission
At Burtons Grill in Park Road Shopping Center and in Blakeney, attention is allergens is a personal matter. Fifteen years ago, owner Kevin Harron — who has Celiac disease — decided to start his own gluten-free menu concept after finding it difficult to eat out and not get sick. Since then, Burtons has expanded its attention to other allergens in response to the rise in allergy diagnoses and specialized diets, and in 2019 it was voted AllergyEats’ most allergy-friendly restaurant.
Allergens are part and parcel of life at Burtons, from researching every source of the ingredients they use to serving allergy-friendly meals on special square plates.
“For anything that has a food allergy or an intolerance, it goes on a square plate as opposed to our circular or oval plates,” Park Road location General Manager Aaron Bevacqua said. “It’s a way to make them know, ‘Hey, we took extra care with this. It’s special. It was made just for you.’”
Bevacqua said he hasn’t seen many places in Charlotte — or anywhere, for that matter — offer the same level of attention to allergies, which is likely connected to the industry’s “no substitutions” mentality.
“Even just five years ago, there was definitely pushback [in the industry],” Bevacqua said. “Mainly from people who had been in the industry for a long time, because when they started in the industry, this might not have been something they did. And it definitely does make the job harder. … It can be seen as an annoyance.”
Even so, attention to allergies has grown, mainly out of necessity.
“More recently, and especially in Charlotte, a lot more people seem open to it,” Bevacqua said “Even the last few years everyone’s realizing that’s the way the industry is headed. … People are seeing it every day, and it’s becoming a fact of life with the industry.”
Where are allergy-friendly spots in Charlotte?
Families dealing with allergies said they’ve seen progress in restaurants becoming more allergy-friendly. They’ve noticed restaurants taking small steps more often, such as replacing gloves or using different utensils.
In addition to Burtons, several of the families we interviewed recommended Red Robin and Maggiano’s as allergy-friendly.
“We’ve noticed that most restaurants can handle [an allergy] now, but the best places take it to another level with having different plates and everything,” Stokes said.
Crepe Cellar has menu items for those following an autoimmune protocol (AIP) diet. Owner Jamie Brown herself follows the diet, which can help people who need to eliminate certain foods due to autoimmune-related symptoms.
Stokes mentioned The Cowfish Sushi Burger Bar on Sharon Road, Culvers on University City Boulevard and Artisen Old Fashioned Gelato in Matthews as good allergy-friendly options.
South of Charlotte, Viva Chicken on Waverley Center Drive is also a reliable allergy-friendly option, Griffin said.
North of town, Brooklyn South Pizzeria in Cornelius is very allergy-friendly, Intartaglio said. She also recommended Bad Daddy’s Burger Bar, up north a bit more in Mooresville.
For grocery stores, Leonardi recommends Harris Teeter for its flexibility in ordering allergy-friendly options and Aldi.
In addition to word-of-mouth recommendations, detailed allergen information can be found on AllergyEats, a website and app with a search function for allergy-friendly restaurants, and Spokin, which describes itself as “ultimate food allergy resource.”
Reader suggestions
After we originally published this story in February, reader suggestions for allergy-friendly spots started pouring in. Here are some of them:
- Bad Daddy’s Burger Bar
- Bang Bang Burgers
- Blaze Pizza
- Bulla Gastrobar
- Chipotle
- Crispy Crepe
- Fern, Flavors From The Garden
- Flower Child
- Rhino Market
- Roots Cafe
- Sunflour Baking Company
- Yafo Kitchen
Is your favorite allergy-friendly spot missing from this list? Email us at charlottefive@charlottefive.com and we’ll add it in.
This story was originally published March 6, 2020 at 1:03 PM.
