The cautious life: Living and dining with allergy-specific diets in WNC

There’s a pretty full house at Heiwa Shokudo by the time the server starts pouring the sake for our small two-top on a busy Friday night. The small sushi house is buzzing, but even so, the server manages to silently slip a bottle of tamari — a soy sauce substitute — onto the table as he passes by. There’s a big white sticker on the bottle that reads in black capital letters, Gluten Free.

“Another reason I love coming here is that they just know — I didn’t even have to ask for this,” says Annelise Kopp, gesturing toward the bottle. Diagnosed with celiac disease at the age of 3, the lifelong Asheville resident is unable to consume gluten in any form. Celiac is an autoimmune disorder that the Celiac Disease Foundation estimates affects one in 100 people worldwide.

“Basically what it does is allows gluten to attack your nutrient receptors,” she explains. “Because I am really good about what I eat, it isn’t often that I have a reaction. But when I do, I’ll have a headache and feel hungover the next day with nausea and extreme fatigue. But in more severe cases, I can get violently ill, but it really is different for everyone.”

Social challenges

She orders a green salad with avocado and a salmon-lemon roll with thinly sliced lemons gently draped across the top of each piece. Kopp has adapted to living with the disease without having to limit most of her social habits. She still eats out with friends pretty regularly, frequents bars and restaurants and even DJs, under the moniker Lil’ Meow-Meow.

The disability, however, tends to make her a regular at places she trusts — places that offer a menu that is less reliant on gluten-heavy foods. Pan-Asian cuisine, including Japanese, Thai and Korean, or even Indian and Mexican restaurants, often have more accessible menus. And while Asheville is fairly stress-free to navigate for someone with a diet-restricting disease or food allergies, that doesn’t mean it comes without a hitch.

“I was booked to DJ at One World Brewing, and I did go online to make sure that they served wine. Because, while I would be fine playing sober when free drinks are a part of your pay … it’s not a huge consideration, but it is one,” she says. That free-drink compensation can be tricky for a celiac DJ playing gigs at breweries in Beer City. “Sometimes that is where I feel the most isolation because I can go to a pizza place and get a salad, but I can’t go to the Wedge when they are out of cider and get anything to drink, even though that’s where all my friends are going.”

“How do you maintain friends when you can’t go to their potluck? You just don’t,” says Jennifer Ramsey, a former Montreat College student who often finds herself in a similar situation. Her case is considerably more complicated than Kopp’s, as she is not only diagnosed with celiac but also suffers from a condition known as mast cell activation disorder. In her condition, the mast cells in her body randomly overreact to things that she is not, in fact, allergic to, giving her anaphylactic reactions one day to something that she may easily be able to smell or eat the very next week.

“There are definitely things that cause it to happen more,” she says, such as strawberries or pineapple. But anything with a high histamine value is a major culprit, and the list is long, including most fermented and aged foods, alcohol, canned and ready-made products and more. Even leftover fresh foods develop histamines as they age in the fridge.

“I’m on a prescription that is three to four times stronger than Benadryl, and I take it four times a day, which is the only way I am able to eat or walk or be around people,” Ramsey explains. “People would be afraid to be around me because the shampoo in their hair would trigger me, or I couldn’t eat anything, and so after a while, you just stop being invited.”

Dietary danger

Ramsey didn’t always suffer from MCAD — in fact, her symptoms appeared out of nowhere. “Here I was, this foodie, having loved gourmet foods for years, and I love cooking, and then I eat a strawberry one day at my kid’s birthday party, and suddenly I can’t eat and I can’t breathe — and no one believed me,” she says.

A reaction of disbelief from fellow diners is a problem she has encountered in many venues, whether at a friend’s potluck party or a restaurant. “There are some situations that are superscary,” Ramsey says. “You are really putting your entire life in someone else’s hands every time you have an allergy and you order in a restaurant. And waitstaff rarely take that seriously. It took me a really long time to eat food comfortably.”

According to the Food Allergy Research & Education organization, there are over 15 million Americans who suffer from food allergies. And apparently the problem is becoming more widespread — the Centers for Disease Control and Prevention claims that the prevalence of food allergies in children increased by 50 percent between 1997 and 2011. People diagnosed with allergies are protected by the Americans with Disabilities Act, but the primary function of that legislation is to protect them in the workplace or at school. The law does little to provide for those endangered or sickened by a lackadaisical server or a chef who simply doesn’t care, and there is little legal recourse for such consumers.

“People with celiac disease have to advocate for themselves to eat safely unless they are eating at a restaurant like Posana that is 100 percent gluten-free,” says Sheila Horine, leader of the Gluten Intolerance Group of Asheville. “This feels awkward for many folks who don’t want to be pushy about where to eat or who don’t want to make a scene asking the necessary questions to make sure their food is safe.”

It can be especially challenging in Asheville where numerous restaurants feature menus for those who are gluten-sensitive. “These restaurants are not safe for folks with celiac disease because they do not have the protocols in place to prevent cross-contact in the kitchen,” says Horine. “It takes less than a crumb to cause damage to someone with celiac disease, whether they have outward symptoms or not.”

View from the kitchen

“Some of these food allergies can be superannoying for a chef,” says longtime Asheville chef and restaurateur Anthony Cerrato, owner of Strada Italiano. “And some chefs just say, ‘Screw that. They’re not allergic to it,’ because a few people just say they are allergic to something because they don’t like it.”

But Cerrato thinks that’s a poor attitude to take. “No matter what you are trying to get across, it’s still an opportunity to showcase what you do and cook for them,” he says. “You’ve always got to give them what they want when you’re a chef.” He often even makes the additional effort to send a chef to deliver the food personally to the allergy-specific customer, “just to show that we are taking an extra step to make sure they are taken care of,” he says.

Cerrato’s understanding of special dietary needs comes from personal experience. “I’m gluten-sensitive, so when I eat a lot of wheat, I start getting respiratory infections,” he explains, noting that he started cutting wheat out of his diet in 2004. As a result, both he and his staff take food allergies quite seriously. These days, everything at Strada is gluten-free or has a gluten-free substitute, except for the lasagna. Even the fried calamari is made with a potato panko breading.

Responsibility

“I went through a period of feeling really apologetic about it,” says Kopp. “Because I think there is a line as to how much I can be entitled when I go out to eat. If an establishment is going to say that something is for sure gluten-free, then it is their responsibility to uphold that. But knowing that I have celiac, it is no longer the restaurant’s responsibility to accommodate me. To a degree, yes, but it is my responsibility to keep up with it, to ask reasonable questions and to not assume that it is their responsibility to make something work for me.

“Just because I have celiac doesn’t mean that I shouldn’t follow the same rules as anyone else going to a restaurant,” she continues, acknowledging that for those with more severe allergies, the consequences of a mistake can be fatal. “It’s a fine line, but then again, I am not going to die if there is a little bit of soy sauce in my food.”

Ultimately, while living with food allergies or sensitivities is never easy, Asheville does offer a variety of safe dining options. “I will say, it is a treat and a pleasure to be able to go into a restaurant like Posana and just be able to order whatever you want off the menu,” says Kopp, noting another well-known downtown gluten-free eatery. And that enthusiasm extends to considerate friends as well.

“When I go to a potluck now, I assume that I’m going to be able to eat what I bring, but when someone else makes something that is gluten-free and says, ‘Oh, Annelise, you can eat that,’ I just get so happy, because someone remembered and cared enough to accommodate me. You stop feeling isolated, and it always feels kind of special.”