Gluten-free diet raises the price for millions

Food economy adapts to consumers 

Columbia University Graduate School of Journalism, 2010

At Mozzarelli’s on the Lower East Side of Manhattan, it’s Gluten-Free Sunday. The autumn breeze gripped the air, but New Yorkers braved the weather to enjoy their favorite Italian foods. Even people from the outer boroughs decided to travel long distances to the restaurant known for its once-a-month devotion to an entirely gluten-free bill of fare.

SOCIAL MEDIA BRINGS PEOPLE TOGETHER  

While more customers usher through the doors pointing at the pizza slices under the glass display, Erin Smith sits at the countertop, picks up her slice covered with onion shreds, sticky cheese, and flattened pepperoni, and chows down. Diners gravitate toward Erin. They recognize her shoulder-length, dirty-blonde hair and friendly smile from her online profile on Meetup.com. As the main coordinator for the New York City Celiac Disease Meetup Group, she adjusts the dark sunglasses on her head and shakes hands with the new members.

“They’re looking for help,” Erin said. “And they’re also looking for people who understand their needs and not look at them funny when they order a burger with no bun.”

She heads the largest gluten-free social group in the country, boasting more than 1,000 members. She also maintains the blog Gluten-Free Fun about her adventures, along with some misadventures, searching for gluten-free items at grocery stores and dining at restaurants that may or may not be aware of the growing trend. Her Mozzarelli’s experience is a positive adventure, she says, since she could eat gluten-free pizza and bring gluten-free baked goods home.

Because of her restricted diet, Erin, 31, feels more comfortable eating at home, so she puts her trust in gluten-free products she finds at the grocery store. The long list of ingredients claim to lack gluten, but, after living on the diet practically her whole life, Erin has doubts at times. Even the slightest doubt about a gluten-free product makes Erin dial the numbers of manufacturers on her cell phone to ensure that the products do not contain a trace of gluten.

“If the packaging says gluten-free, you need to check if it was made in a gluten-free facility, that it’s not made on the same conveyor belt as the wheat-based products,” she said. “I was a little skeptical and still am.”


DIFFERENCE BETWEEN CELIAC DISEASE, FOOD ALLERGY, INTOLERANCE    

In 1981, at the tender age of three, Erin was diagnosed with Celiac disease, an autoimmune disorder in which the body cannot digest wheat, rye, or barley, as well as other grains having the same integral protein: gluten. It damages the small intestine to the point that nutrients cannot be absorbed.

Along with gastrointestinal discomfort, some symptoms of Celiac disease include anemia, fatigue, and headaches. Gluten destroys the villi, the fingerlike projections lining the intestines that help absorb nutrients and fluids. Because nutrients are not absorbed correctly, other bodily systems can be disrupted.

With food allergy, the immune system mistakenly attacks a food protein. Symptoms such as respiratory distress, loss of consciousness, and hives can occur immediately after ingestion. Some may experience anaphylactic shock, a potentially fatal allergic reaction that requires immediate medical attention.

Some people have sensitivities only to wheat while most have issues with all gluten-containing grains. Some people outgrow the allergy and intolerance, but this number is decreasing.

The Celiac Disease Center of Columbia University in New York reports that 1 in 100 people in the United States has Celiac disease, and 97 percent are undiagnosed.

Twelve million people in the U.S. have severe food allergies mainly to eight foods: eggs, soy, dairy, shellfish, fish, nuts, tree nuts, and wheat, according to the Food Allergy & Anaphylaxis Network, a Fairfax, Va.-based advocacy group.

The only cure is a lifelong gluten-free diet.


GLUTEN-FREE DIET COMES WITH HIGHER COSTS

“The gluten-free diet is very expensive,” said Dr. Christina Tennyson of the Celiac Disease Center at Columbia University in New York in an interview. “When you look at the products that are available, it’s several times the cost compared to regular products that contain gluten. So that’s another difficulty for people to stay on the diet because of the increased cost.” 

This means that millions of Americans—who either have Celiac disease, wheat and gluten allergy, or sensitivities—live life without bread, pasta, cookies, cakes, and the list goes on. But those afflicted with health issues involving gluten are finding ways to supply their favorite foods—at a cost. 

A few years ago, Erin started noticing pizzas and breads made without the key ingredient: wheat flour. Instead, alternative flours made from tapioca, amaranth, and buckwheat, a gluten-free misnomer, acted as substitutes.

Erin thought that if these new gluten-free products were appearing in stores, then more and more people like herself must be unable to eat gluten. In 2003, she turned toward the Internet for gluten-free advice where she found Meetup.com, a website that helps people maintain local social groups.

 “One thing I realize is that people come to this group really sick because they’ve been misdiagnosed for so long, and it’s very reassuring to them that they find people who understand what their illness is and understand that you can live gluten-free,” she said.

Eventually assuming the title of lead organizer of New York City’s Celiac Disease Meetup Group, Erin arranges dining opportunities at gluten-free friendly restaurants. Other events include fundraisers, cooking classes, and supermarket tours.

“You have to make sure you have your event at a place that is gluten-free and understands the needs of the gluten-free community and where you don’t run the risk of getting sick,” she said. “Where there’s no cross-contamination, no slip-up in the kitchen. Where the wait staff knows you can’t have a breadbasket at the table.”

The prevalence of gluten consumption problems continues to rise as do the prices marked on the products. On the shelves of the average supermarket, consumers can compare the prices of gluten products alongside their non-gluten counterparts. Pasta made with wheat flour might be $3.00, for example, while the alternative pasta made with rice flour may cost two dollars more.

Why do people still purchase gluten-free goods with the high price tag?

“I think it’s mentally hard sometimes for people to grapple with the fact that they can’t have something in their diet anymore that really [endangers] their health,” said Marissa Lippert, a nutritionist and dietician, in an interview. Lippert owns a clinic, Nourish NYC, in Lower Manhattan where she occasionally sees clients struggling with their newfound sensitivity to wheat or gluten.

People who have had these sensitivities for several years live on a naturally gluten-free diet consisting mainly of fruits, vegetables, cereals, dairy, and meats. But more and more adults are being diagnosed later in life. They are accustomed to eating bread and other foods that have gluten, so they seek out the gluten-free versions of those foods.

“Psychologically, how do you work around that?” Lippert says this question plagues clients coming to terms with the gluten-free lifestyle. “It’s removing something from your life that seems innocuous, but makes a really big health difference.”

Wheat is an ancient grain people around the world have cultivated and consumed for 12,000 years. The biological structure of the wheat grain is so complex that it contains more than 100 different proteins. Gluten is only one protein that has two subgroups called gliadin and glutenin. Gliadin is responsible for causing intestinal damage in Celiac disease patients. Barley and rye, two grains associated with wheat, contain similar proteins also known as gluten. On the other hand, doctors continue to try to pinpoint the exact cause for the allergy. Wheat accounts for 20 percent of all calories consumed in the Western diet.

 

RESTAURANTS OFFER GLUTEN-FREE ALTERNATIVES

Waiters juggle multiple plates along their arms. Cashiers accept crinkled dollar bills, swipe bank cards, and punch the next customer’s order into the register. Short-stemmed flowers in glass vases decorate the center of each table between the Heinz ketchup bottles while people laugh and converse in the dimly lit dining area. Located inside New York’s Chelsea Market, Friedman’s Lunch sets the atmosphere for another Tuesday lunch hour.      

     

Amid the hectic environment, one of the owners, Vanessa Phillips, dressed in a gray and navy striped shirt and jeans, checks in at the register to make sure things are running smoothly. 

 

She looks toward the diners who seem to be enjoying their meals, especially with today’s menu special: blackened catfish hero sandwich with collard greens, pickle chips, and rémoulade. After surveying the restaurant, Vanessa steps down a narrow, black spiral staircase to her office bordering the downstairs kitchen where she and her coworkers sort receipts and track payments before the tax filing period. During the afternoon, she updates photos and information on the Facebook page for the restaurant.

Last year, Vanessa with her fiancé, chef and co-owner Tryg Siverson, launched this classic diner with a twist. And the twist was that the menu also provides gluten-free versions of its sandwiches, wraps, and desserts.

“The restaurants I have been to in New York offer gluten-free menus, but I really wanted to have a place where people wouldn’t need a separate menu,” she said. 

The most popular gluten-free sandwich on the menu is the hamburger. While some restaurants prepare their gluten-free hamburgers sans the wheat bun, Friedman’s still adds the signature bun, but it’s made from non-gluten flours for their customers who still want all the ingredients even if slightly modified.

“If a regular sandwich comes on rye bread, then I found a gluten-free rye bread,” Vanessa said. “If the chicken sandwich comes on baguette, then I found gluten-free baguette. All the breads match the sandwich.” She says she and her staff taste samples of gluten-free goods to make sure it’s delicious enough to serve in their establishment.

While Vanessa was aware of the gluten-free phenomenon currently gaining momentum in the food industry, she wanted to bring this opportunity to her restaurant based on her own experiences.

“I remember as a kid always telling my parents that after every time I ate, I felt sick,” she said. Her parents took her to doctors who remained puzzled about her mysterious condition after numerous blood tests.

After spending years confused about why she often felt ill, Vanessa, now 29, was diagnosed with Celiac disease ten years ago. The average wait for a diagnosis is ten years, and Vanessa estimates she waited that long for doctors to recognize her situation.

Vanessa, a child of the restaurant business, followed her dream of opening Friedman’s. After her experiences of being a manager and customer at other restaurants, she realized ‘gluten’ was not a commonly used word. “When I did eat out, restaurants were very unaware of gluten allergies or what gluten was,” she said. 

She felt inspired to help others in her situation, and five years ago, while working at a restaurant, she met Siverson who later would help her create the ideal gluten-free menu.

“Together we started experimenting with gluten-free recipes in our home kitchen and finding ways to replicate wheat,” she said. “So from there, we had a handful of recipes we thought were terrific that we obviously wanted to share with other people in the community.”

Friedman’s gluten-free sandwiches cost $2.25 more than its other sandwiches. Vanessa says the gluten-free flours made from foods like beans and rice are expensive, and, unfortunately, the restaurant and customers pay the price, but it’s worth it. “There’s very little price resistance from customers. They don’t really care about how much it costs. They’re just so happy to have options,” she said.

Gluten-free dishes are hard to come by in many places, but restaurant chains like P.F. Chang’s and Olive Garden are providing these options to their customers. Smaller restaurants are also reconfiguring recipes to create gluten-free versions of their foods, but sometimes it can be difficult with the increased costs, especially in a recession where countless restaurants close every day.

“I think more restaurants will do this, but they see this as an accruing cost, and they have to charge more. They’re afraid it’s not going to be well-received because of the price factor,” she said. Vanessa says Friedman’s has seen a 10-12 percent increase in business since the restaurant introduced their gluten-free options last year.


DIET IMPROVES HEALTH FOR SOME

Dr. Christina Tennyson of Columbia University’s Celiac Disease Center advises people who don’t have gluten problems to not eliminate it from their diets. Some swear off gluten because of health reasons. Autism, attention deficit hypersensitivity disorder (ADHD), and such behavioral diseases have exponentially increased in children since the early 1990s. One remedy to ease symptoms is the gluten-free, casein-free diet. Casein is a protein in dairy. Some with gluten sensitivities may also have casein allergy or lactose intolerance because the human body was not designed to digest milk past infancy.

The theory is that children with behavioral disorders cannot properly digest gluten nor casein or other common food allergens, therefore their bodies create peptides—molecules that act as false opiate-like chemicals altering behaviors and perceptions.

Researchers have found abnormally high levels of peptides in people living with autism and similar disorders, but the gluten-free, casein-free diet has not been scientifically recognized as a form of treatment.

If you ask ten-year-old Henry Rosenberg what his favorite foods are, he’ll tell you this: “Bread, lamb chops, hotdogs, and Krabby patties.” Krabby patties—which he sometimes bakes with tapioca flour alongside his mother in the kitchen—are in honor of one of his favorite cartoons, SpongeBob SquarePants, but the other foods are not exactly favorites for the average third grader.

Henry had a language delay during infancy that placed him along the autism spectrum. He eats a gluten-free, casein-free, soy-free diet.

His mother, Kim Mack Rosenberg, has seen significant changes in her son after putting him on the diet more than five years ago.

“We had an unusual situation,” Kim said one afternoon at her apartment on the Upper East Side. “He literally had stopped eating.”

Henry was a toddler when doctors noticed he had severe gastrointestinal issues. Because of her involvement with the National Autism Association’s chapter in New York City, Kim attended events where specialists gave lectures about their research on the varying degrees of autism and forms of treatments that can spark positive changes in a child. After learning about the gluten-free, casein-free diet from a nutritionist at one of these events, Kim decided to take gluten and casein foods out of Henry’s diet.

 “He seemed to be speaking and thinking more clearly and processing things more quickly,” she said. There was one problem with the casein removal: Henry loved milk. So Kim replaced the dairy milk with soy milk. While Henry grew accustomed to a new type of milk, Kim then learned from Henry’s nutritionist that casein and soy proteins show similar results in children within the autism spectrum disorders. Henry then started drinking almond and rice milk.

That was 2004 when Henry was only four years old, and the gluten-free market was just starting to make an appearance in grocery stores and restaurants.

“I was really beating myself up about trying to find the perfect gluten-free, casein-free, soy-free substitute for pizza, for this and for that. And it was hard because the substitutes were clearly not the same,” Kim said. One of her favorite stores became Whole Foods and similar health grocery stores where she bought gluten-free, casein-free, soy-free foods.

Henry loves vegetables, so Kim’s shopping lists usually contain healthful, organic foods the whole family can eat. They try to stay away from too many prepackaged foods because of the potentially high sugar content. Though one prepackaged food heavily used in Kim’s household is gluten-free flour made from different grains such as quinoa or brown rice. She and Henry bakes different foods usually too expensive in the stores. Kim saves about 15-20 percent off her grocery bill by avoiding prepackaged foods and creating her own healthier versions.

Kathleen Reily, an alternative nutrition consultant and also an active member of the National Association of Autism local chapter, said in a telephone interview: “If the parents cut down their gluten intake or go gluten-free, there are positive results from that.” Reily suggests the diet to families even though some are not ready for it. Some believe their financial commitment to the gluten-free diet may increase if everyone in the household eats the same foods. Others believe they save money by providing a completely gluten-free environment. Each family chooses whichever decision is best for their home and economic situations.                  
Kim admits that she and her husband did not go completely gluten-free and casein-free for their son at first, but their consumption of those foods drastically decreased. She even recently dedicated herself to be a gluten-free vegan after researching the diet more and noticing the positive health effects for her.

But Kim says Henry has some weak moments. “He misses bread,” she said. “I’ll make nut breads for him. And there are some gluten-free breads that are not bad, so we’ll buy that. But if he’s somewhere and sees bread, he’ll say, 'Can I try a little taste of that?'”

In 2008, the Autism Research Institute had more than 2,500 families with autistic children rate the gluten-free, casein-free diet, and 66 percent noticed a positive response to the diet. Because some children might have another allergen like eggs taken from their diet, there are no sufficient reports illustrating the effects of the gluten-free, casein-free diet.


GLUTEN-FREE MARKET TRIPLES IN RECENT YEARS; COMPANIES ADJUST

The gluten-free market was worth $1.56 billion at the end of 2008 with an annual average growth rate of 28 percent, Packaging Facts, a Rockville, Md.-based market research group, reported last year. The gluten-free market is expected to reach $1.7 billion this year—up from $5.8 million in 2004.

Wheat is the third most harvested grain in the U.S., and 70 percent of it is used for food products. Corn and soybeans, both significant crops used for gluten-free flours, are the first and second grossing crops in the country. Even with a larger supply of corn and soybeans, wheat products are still cheaper.

But not all the gluten-free substitutes go toward food. In fact, 80 percent of the corn crop in the U.S., the largest corn producer in the world, is used for domestic and foreign livestock, poultry, and fish production. Only about 12 percent is used for food products including corn flour and high fructose corn syrup. The rest is used for industrial purposes such as ethanol production. Soybeans also find their way into animal feed and biodiesel fuels. On the other hand, the majority of the rice crop goes directly toward food consumption.

“Gluten-free products require more processing of the basic ingredients than products based on ordinary wheat flour, and therefore have higher production costs,” Steve Crutchfield, assistant administrator of the U.S. Department of Agriculture Economics Research Service, wrote in an emailed statement.

Despite the high prices, the gluten-free market has gained momentum in the past five years as companies recognize the increase in sensitivities. General Mills stamped gluten-free labels on products ranging from Chex cereals to Betty Crocker baking mixes. Anheuser-Busch brewed sorghum flour as a replacement for wheat flour in Redbridge, its gluten-free beer. These two major corporations helped spread the awareness of the diet and ignite a market that broke the $1 billion mark in 2008.

This motivated other companies to follow suit to increase profits, but there are still companies fearing this endeavor might overextend their budgets. 

“Demand for gluten-free products might rise if consumers without gluten allergies decide to choose gluten-free foods in the belief that they are better for them,” Crutchfield wrote.

Since 1947, MI-DEL, part of the Saddle Brook, N.J.-based PANOS Brands company, distributes its cookies to food stores throughout the country. Today, it is one of the companies compelled to serve the allergen-free community as well. Although MI-DEL could not comment on its pricing decisions or business growth, the company prices its gluten-free cookies the same as its wheat-floured counterparts. A 2007 Columbia University study found gluten-free foods, particularly snacks like cookies, were usually 240 percent more expensive than those made with wheat and other gluten-containing flours.

Due to the production costs of flours made from vegetables, legumes, and some grains, many companies exponentially raise the price of the gluten-free good. Food hypersensitivities can significantly affect a person’s life, so consumers who wish to replace wheat and gluten in their everyday foods have showed a willingness to pay these high prices.

Gluten-free products are available at grocery stores, health food stores, and online supermarkets. They tend to be more expensive at health food stores, according to the Columbia University study analyzing the economic patterns of the gluten-free diet.

The study shows that regular grocery stores in Atlanta and Chicago offered a limited supply of gluten-free products while New York City and Portland had a wide variety for the consumer to choose from. Though prices did not vary much throughout the country, availability did. As a result, more people now turn to the Internet where specialized gluten-free cyberstores sometimes carry even higher price tags as a result of shipping and preservation costs.

 

DINING AT HOME, APPLYING FOR PROGRAMS SAVES MONEY

Baking gluten-free recipes from scratch may be a major money-saving and time-consuming tactic, but many feel comfortable knowing the exact ingredients used in their foods. In some cases, gluten-free flour companies sell the product at about the same price as wheat flour, so consumers can bake and cook their own goods instead of buying expensive, pre-made foods that may have come in contact with gluten during production.

For people who must live on the diet or buy foods for a dependent in the household, the Internal Revenue Service deducts the prices of gluten-free products if the costs exceed 7.5 percent of the adjusted gross income. If the adjusted gross income is $40,000, for example, then gluten-free costs must exceed $3,000 to claim a deduction.

IRS categorizes this deduction as a medical expense. If regular wheat flour costs $3.00, and garbanzo bean flour costs $5.50, then the difference of $2.50 will be returned to the filer. Transportation costs to medical centers specializing in gluten intolerances and allergies and nutritional counseling not covered by insurance can also be deducted. All receipts, checks, and other records of relevant purchases must be kept to make a claim.

In beginning of this year, it was reported that 1 in 8 people use food stamps. Talk About Curing Autism, a Costa Mesa, Calif.-based advocacy organization, gives families advice on the gluten-free, casein-free, soy-free diet. Instead of the Department of Agriculture’s limit of $588 per month of food subsidy aid for a family of four, TACA spent $320 to design a menu diverse with meal options without any gluten, casein, or soy. More grocery stores, especially ones known for having an allergen-free inventory, are accepting food stamps.

School is the main place children spend their days, and for children with gluten-related health issues, this may pose a problem during lunchtime. The National School Lunch Program can prepare nutritional gluten-free meals in the cafeteria if necessary. The federally assisted program helps families in the required income bracket receive affordable or free lunches. If children arrive early or stay late, gluten-free breakfast and afterschool snacks can be made available.

Doctors worry about the increased prevalence of these illnesses where such a restricted diet will ease symptoms because the public, and more importantly, the food industry have yet to completely embrace the gluten-free lifestyle. More than three million people in the country have Celiac disease. Another 15 million have some level of gluten intolerance, and seven million have a wheat and/or gluten allergy. These numbers mean 8 percent of the population must live on a gluten-free diet, excluding people who choose to follow the diet for other health reasons or by choice.

Americans consumed 134 pounds of wheat per person in 2005, down from 146 pounds five years earlier. People’s interest in low-carbohydrate diets, including the rise of the gluten-free market, contributed to the decline.

As the gluten-free market grows, experts say high demand will decrease the prices, but it will decrease only to a certain extent with production costs still factored in the equation.

The gluten-free diet may be a wallet-pinching, time-consuming regiment, but many have found comfort in social and online communities where unique recipes, restaurant reviews, and baking catastrophes are shared. Knowing others experience the same situations takes one’s mind off the prices. 

“I would say gluten-free is such a part of my life, but it’s also a hobby of mine,” said Erin Smith, the organizer of the New York City Celiac Disease Group. “It’s the way I live my life. It’s who I am. And I want to make sure other people understand that, and they can live their lives normally.”