This article first appeared in the St. Louis Beacon, Dec. 30, 2010 - Marian Wisnev remembers well restaurant visits from a decade ago. Some servers understood but for most part she came to expect an inevitable blank stare when she'd ask the question.
"I'd say 'Could you recommend anything without gluten?' and they'd look at you like you had 12 ears and 19 eyes," recalled the Creve Coeur resident.
The 81-year-old Wisnev is one of millions of Americans who suffer from celiac disease, a disorder that leaves her body unable to process nutrients properly in the presence of gluten. A protein in cereals such as wheat, barley and rye, gluten is most commonly found in breads and baked goods, but its extensive use in processed foods, particularly as a stabilizing agent, has introduced its presence into products ranging from sausages to potato chips to instant coffee. Even some toothpastes and cosmetics may contain gluten. Its widespread use can make dining out an unwelcome challenge for celiac sufferers.
Common problems caused by the illness are diarrhea, abdominal pain, bloating or gas, but symptoms vary widely and can include anything from irritability to fatigue.
"We've diagnosed people as young as their preschool years all the way up through their 80s," said Dr. Michael Heavey, a local gastroenterologist with SSM Health Care. "It can affect any age group though we think that people who have had it mildly may have had it longer because the symptoms are so subtle."
Indeed, Wisnev wasn't diagnosed until her late 60s.
According to the National Foundation for Celiac Awareness, about 1 in every 133 Americans have the disorder, but the group estimates that 95 percent of celiac sufferers are undiagnosed or wrongly diagnosed.
"In 1950, no one knew what it was," said Wisnev. "It was just a wasting disease."
The challenges faced by Wisnev while dining out led her to become one of the founders of the Bi-State Celiac Support Group, a resource for those living with the illness locally. She eventually created St. Louis Alerts, which helps spread the word about celiac-friendly eateries in the area.
Wisnev said that since her diagnosis nearly a decade and a half ago, local restaurants have become much more familiar with the malady and a great deal more accommodating. Helen McLaughlin, 79, also said coping with the disorder has become much easier in recent years due to an expanded range of dining options.
"You can tell if the server either knows about it or has never heard of it," she said. "Sometimes the manager doesn't know about it, but that's becoming more and more rare. You develop a feel for which restaurants you might want to go to and which would be better to stay away from."
McLaughlin, who was diagnosed seven years ago, said that foods with soy sauce can be an issue for her.
"I know of two brands that don't have wheat in them, but they are more expensive and restaurants generally don't use them. So I don't like to go to Chinese restaurants," said McLaughlin, who lives in unincorporated St. Louis County. "But Thai restaurants are great because they use rice noodles, they don't use soy sauce, and almost everything there is gluten-free."
Cookies and breads and pot pies, oh my
Lemay resident Meredith Thiergart, 27, hasn't been diagnosed with celiac but said she feels flu-like symptoms after eating gluten. She gave it up even though it sometimes meant difficulties finding an acceptable place to eat out with friends.
But things are not as bad today as they were when she started.
"I've been gluten-free for the last five years and I've noticed a change in maybe the last two," she said. "A lot more restaurants are offering gluten-free on their menu. Plus places are popping up that are completely gluten-free, which is nice."
Linda Daniels is proof of that. She founded Ferguson-based Free Range Cookies, a gluten-free bakery, in 2008 after being told she had celiac, a diagnosis that initially caused her to cut back on baking.
"I was not only missing [making] a few baked goods here and there, but I really missed the process of baking," she said. "That's how I got started."
Today, Free Range products, which include breads and buns, are sold retail, wholesale and online. Free Range items can also be found at Kaldi's Coffee locations.
"When people are newly diagnosed, you go through a stage where you have sticker shock like you wouldn't believe because you are used to buying huge containers of all sorts of processed foods and it's all so cheap and readily available," she said. "When you are told you need to stick to gluten-free products, there's a pretty dramatic difference in price. As more people are diagnosed with celiac disease and demand continues to grow, I could see the price going down because the market is that much bigger."
Joy Kahlmeyer is owner of Beck's Gluten-Free in Ellisville. Opened in early 2009, the outlet provides non-gluten products from salads to prepared meals, such as chicken parmesan, lasagna, pot pies and meatloaf.
"The doctors are starting to diagnose it much quicker now," said Kahlmeyer, who was moved to found the operation after cooking for gluten-intolerant relatives. "They're looking for it more because there is increased awareness so we're seeing increased activity."
Often using flours made from rice, tapioca, potato, sorghum, bean or almond to create products that meet its clients' dietary needs, Beck's also offers a wide variety of products, including baked goods. Orders can be picked up at the facility or at any of 13 area Schnucks stores. Beck's has partnered with Straub's as well.
Beck's also carries gluten-free oats. While oats themselves don't contain wheat gluten, they are often avoided by celiac sufferers because of heavy cross-contamination with other cereals. Beck's gets its oats from a certified gluten-free provider. Like many dedicated gluten-free operations, Beck's is strict about preventing any cross-contamination. A sign on the door even prohibits outside foods from being brought into the establishment.
Kahlmeyer thinks that for Beck's, increased awareness and more accurate diagnoses have trumped the lagging economy. Despite launching in the midst of a recession, she said the business has grown steadily, much as she initially expected when looking at national trends. NFCA estimates that gluten-free sales will reach $2.8 billion by the end of the year.
"We started by looking at the numbers," she said. "Once we saw they were in the billions, we thought maybe we should give this a try."
Yes, Virginia, there is a gluten-free pizza
One big item Kahlmeyer carries is pizza. In fact, according to its website, Beck's products are found at a number of local pizza places including Cecil Whittaker's, Bono's Pizzeria and Pizza Pizza.
Other local pizza landmarks are taking the plunge into the gluten-free market as well. Notable for being a favorite of President Barack Obama, Pi Pizzeria, with locations in the Delmar Loop, Central West End, Kirkwood and Chesterfield, introduced non-gluten items to its menu not long after opening two-and-half-years ago.
"I had never seen it in St. Louis before we did it, but I can't fully claim that we were the first," said owner Chris Sommers. "We were definitely on the early side."
Sommers said Pi offers a gluten-free pizza crust and a sandwich cookie that is both gluten-free and vegan. It was just a matter of listening to customers, he said.
Today, he likes what he's hearing.
"I get messages all the time from people just saying 'Thank you, thank you, thank you, I haven't been able to go out for pizza in 20 years,'" he said. "The gluten-free crust allows them to join the group, eat out and enjoy things that they hadn't in a long time."
At the Scottish Arms, a restaurant on Sarah Street, specializing in European cuisine, gluten-free items are marked on the menu with an insignia consisting of a sprig of wheat with a circle and crossbar.
"We always had a few gluten-free dining options," said executive chef Carl Hazel, "but about three years ago when I started was when we started making a more conscious effort to make sure that we had something available for diners with gluten-free, vegetarian or vegan diets."
Dan Arnold, lead host at the Schlafly Bottleworks in Maplewood, said his establishment used to offer gluten-free noodles, but volume was too low and the spoilage rate caused the restaurant to drop the item. Still, it does work to accommodate customers. He said that dealing individually with the patron, a server can typically find something to the diner's satisfaction.
"Most of the items on our menu, we can figure out a way to make them gluten-free for you," he said.
Chain restaurants in the St. Louis area are also becoming more aware.
P.F. Chang's, an eatery featuring Asian fare, offers 29 different gluten-free items. Macaroni Grill's site shows patrons what to order to avoid gluten, recommending against such items as pasta, bleu cheese and croutons. The Pasta House Co. advertises gluten-free noodles for its signature dishes and recommends patrons call ahead to reduce preparation time.
Some fast food restaurants such as Burger King, Arby's, Wendy's, Hardee's and Dairy Queen have gluten-free or gluten-sensitive menus on their websites. Others, like McDonald's, list extensive disclosures of ingredients so consumers can decide for themselves.
The French Fry Dilemma
A particular issue of concern is an item like french fries, which some worry may contain glutens from the oil or can suffer cross-contamination in deep fryers with breaded items like chicken nuggets or onion rings.
McDonald's was even the target of a lawsuit several years ago over the alleged wheat and dairy content of the flavoring for its fry oil. An analysis by the Celiac Sprue Association later concluded that after frying, the potatoes' gluten content was "below the limits of detection (BLD) of the most sensitive commercial gluten test." Meanwhile, gluten-free dining blogs indicate that many celiac sufferers report they consume the fries without any difficulty. Nonetheless, the fast food giant now lists wheat and milk as potential allergens in the fries.
Because of the danger of cross-contamination, restaurants frequently have disclaimers on their non-gluten menus warning they cannot guarantee the total absence of the allergen.
Nathan Dunavant, culinary program chair at Le Cordon Bleu College of Culinary Arts in St. Peters, said his organization teaches students about food allergies in the very first class they take. He thinks the issue has greater visibility today.
"In the past it just wasn't public knowledge. Not a lot of people knew what a gluten-free diet would consist of," he said. "Most of the time, if someone came into a restaurant and the staff weren't educated, they would offer just bland, boring food. But there are a lot of things you can do in the absence of gluten and still have some pretty interesting foods.
"It's gone mainstream," he added. "You can get decent gluten-free foods in restaurants these days."
The market for non-gluten dining is even growing beyond celiac sufferers. Some families with autistic children have started using the dietary regimen as a way to mitigate behavioral problems. The website for Autism Speaks, an advocacy organization, lists a diet free of glutens and caseins, a dairy protein, as a potential treatment though it notes that no clinical studies have verified this method.
Whatever the reasons, Wisnev said she feels the change in restaurant dining options is market-based.
"At first, they weren't very receptive to us," she said. "Then all of the sudden they decided that people rarely eat out alone. If you have celiac disease, your friends will say, 'Where can you eat?' That's when they realized they were losing a lot of people who would not go to their restaurant if one person couldn't eat there."
David Baugher is a freelance writer in St. Louis.