Tech + Health

05.06.14

The Gluten-Free Diet Has Two Faces

Nancy avoids gluten because she has to; Marlene because she chooses to. Both women are part of the booming gluten-free industry, but the stakes are much higher for one of them.

Nancy Caracciolo, 31, walks into a Key Food grocery store in Bensonhurst, Brooklyn, looking for food that won’t make her sick. She quickly moves down each aisle, filling her basket with produce. She stops and takes a long look at the frozen waffles. In her thick Brooklyn accent, she compares the options available to her. The five gluten-free options, among the dozen the store carries, are Nancy’s only hope of eating waffles, but she moves on. At a dollar more for almost half as many waffles, she decides they’re too expensive.

Nancy, a first-generation Italian-American, was diagnosed with celiac disease at 24 and forced to eliminate bread and wheat products from her diet. Despite the growing availability of gluten-free items, grocery shopping remains unnerving. “[The gluten-free one] is smaller and more money,” she laments, pointing to a box of pancake mix. The Betty Crocker Bisquick gluten-free mix is $5.49 for 16 ounces, while the brand’s regular equivalent is 40 ounces for $4.99. “I think if I did all the gluten-free stuff you’d see a crazy total. That’s why I live on fruits and vegetables,” says Nancy. At the checkout, her total for bananas, arugula, blackberries, kale, yogurt, rice noodles, and tofu comes to $34.21. “I think that’s like, the least I’ve ever spent,” she says, laughing.

A graduate student at New York University, Nancy is studying to become an occupational therapist. One afternoon, her classmates gather at a bar near campus. Nancy flits among them animatedly, warmly stroking their arms and smiling widely. One classmate says, “I was just over there eating French fries [but] this girl,” pointing at Nancy, “is the real deal.”

Like Nancy, New York resident Marlene Taylor, 34, avoids gluten. But unlike Nancy, Marlene’s efforts are not a life-or-death matter. She was inspired to try a gluten-free diet after hearing a lecture promoting elimination diets and later took a blood test to check for celiac disease. The test came back negative, but she still jumped on the bandwagon, becoming an avid fan of gluten-free eating. Marlene admits that she doesn’t experience extreme discomfort after eating gluten in the same way Nancy does, and it won’t make her sick, but she says that being gluten-free feels healthier. “My whole theory is that I have to listen to my body,” said Marlene, “and if I’m not feeling well the first thing I turn to is the diet.”

***

An estimated 3 million Americans have celiac disease, an autoimmune condition that can cause extreme stomach pain, diarrhea, and occasionally skin rashes after consuming foods that contain the protein gluten, found in barley, rye, and most commonly, wheat. Some people with celiac are believed to be asymptomatic, but even they can face internal damage and intestinal cancer after consuming bread, pasta, or beer. For people like Nancy Caracciolo, eating simple foods like toast or crackers is a serious health risk.

But celiac sufferers find themselves with lots of company these days. The popularity of a gluten-free lifestyle has risen so dramatically in recent years, researchers now estimate that there are more Americans who are voluntarily gluten-free than there are those with celiac disease. A 2012 study by the Mayo Clinic estimated that there were 1.8 million Americans with the diagnosis, while 2013 data released by international research firm NPD Group showed that up to one-third of Americans avoid gluten.

Market research group Mintel International tracks product trends across various industries and released data in 2013 showing that one in four respondents aged 18-24 eats gluten-free foods as some part of their diet. Additionally, 59 percent of women surveyed agreed that gluten-free products are worth a higher cost. The gluten-free label has become so common that in August 2013 the U.S. Food and Drug Administration passed the Food Allergen Labeling and Consumer Protection Act, requiring any manufacturer that labels a product as “gluten-free” to undergo rigorous testing; no product containing a higher content of 20 parts per million of gluten will be allowed to carry that label. Mintel data suggests consumers will welcome this change: 63 percent of those surveyed said they believe manufacturers should label a product as gluten-free, even if it never contained gluten in the first place.

Food manufactures are not blind to what’s going on. A 2012 Mintel study outlined for retailers how to maximize earning potential in the gluten-free marketplace, warning that without continued innovation in gluten-free products, the diet will exist as nothing more than a short-lived fad. “So few Americans have been diagnosed with celiac disease, and yet the market for products and the sharp rise in marketing claims is so sizeable,” notes the study. “This suggests that the vast majority of gluten-free food purchases are presently driven by desire and not by need. Category sales could suffer if gluten-free food became passé.”

Ken Seiter is the chief marketing officer at the Specialty Foods Association, a business nonprofit that holds annual trade shows for unusual or emerging food products. The SFA works closely with Mintel to design the latter’s studies on consumer behavior. Seiter notes that, as with any other diet, the charm of gluten-free will eventually wear off for some people. “Seeing your neighbor eating gluten-free products can certainly motivate you to try. There has been so much publicity about it. Now, do they stick? That’s another question.”  He says that part of understanding where the gluten-free diet fits in our nation’s epicurean history requires an understanding of the crucial difference between a fad and a trend. “A fad is truly in and out,” Seiter says. “It’s like a slash in the sky that kind of fades. A trend is something you see that ultimately may alter in some way but it permeates the consumed habits [and] behavior.” Gluten-free eating is not a fad, stresses Seiter. It’s a trend.

***

Standing over the stove in the Bensonhurst apartment complex that she owns and manages with her brothers, Nancy Caracciolo prepares a feast. Her friend is moving to Miami and requests the be-all and end-all of Italian last suppers: sauce and meatballs. “I can’t believe how stereotypical this is, but if you want it, we can have it,” says Nancy. She brings the prepared food upstairs to another mutual friend’s apartment. Ironically, Nancy notes, she hasn’t made anything she can eat; the breadcrumbs in the meatballs will contaminate the whole dish. But, she says, “I don’t want them to really miss out.”

When mealtime comes, her friends dine happily on ribs, meatballs in sauce, rice balls, and bread. Nancy retreats to her own kitchen briefly, quickly eating a meal of kale and eggs before getting back to her friends. At the end of the evening, her friends’ stomachs are full and Nancy’s happiness is a product of that of her guests. “They were actually really happy with it, and I was happy with it too because it came out pretty good,” she says. “But it was just so hard to not eat anything.”

***

Only a few months after she began her new diet, Marlene Taylor is having trouble being gluten-free. Despite her initial excitement, she finds the demands of graduate school too excruciating to add the additional task of sticking to a strict diet. Over a long holiday weekend, Marlene and her husband, David, who is not gluten-free, travel to Connecticut to spend the holiday with family friends. “It was like, a gluten-fest,” Marlene says afterwards. “But it was all delicious.” A week later, she says she intends to eventually get back on gluten-free full time. “I need to be doing it seven days a week to feel good.” 

***

Celiac disease is genetic, and those who are not predisposed to it will have a negative result to a blood test for the condition, as Marlene did. Still, many who test negative say that eating gluten upsets their stomachs, and the term “gluten sensitivity” has become an ambiguous gray area in the world of nutritional health. Medical experts stress that there is a significant difference between someone who has celiac disease and someone who claims sensitivity.

The latter, it turns out, lacks any sort of verified scientific evidence. “Next to nothing is known about the epidemiology about gluten intolerance, it’s just been insufficiently studied,” says Dr. Benjamin Lebwohl, who teaches medicine and epidemiology at the Celiac Disease Center at Columbia University. A national health screening in 2009 and 2010 by the Centers for Disease Control and Prevention, one of the first examinations of non-celiac disease gluten sensitivity, showed that an average of 1 in 200 people elected a gluten-free diet for reasons other than a diagnosed need. “It’s an entirely different phenomenon,” says Lebwohl of non-celiac intolerance.

Doctor Armin Alaedini, medical professor at the Department of Medicine and Institute of Human Nutrition at Columbia University, concurs with Lebwohl’s analysis. “We don’t even know if it’s gluten that’s causing sensitivity, that’s just the name that’s been given to it.” But both doctors note that by the time many of their patients come in to the center, they have already self-diagnosed as gluten-insensitive and adopted a gluten-free diet.

Experts are also quick to point out that adopting a gluten-free diet can actually be harmful. “Unlike gluten-containing products, gluten-free substitutes are not enriched with iron and could lead to the development of vitamin deficiencies,” says Lebwohl. “Folic acid is a type of B vitamin that wheat products are fortified with and, as a result, people who eat wheat and gluten typically have normal folic acid levels. Gluten-free substitutes are not fortified with folic acid.” Lebwohl says that folic deficiency can be particularly dangerous in women of childbearing age, as it leads to greater risk of an infant being born with neural tube defects such as spina bifida.

***

While those with celiac disease have no choice in the matter, experts agree that the gluten-free diet has been marketed in such a way to target young women, making them feel as if the diet is necessary. “They are the natural pioneers of diet fads,” says Karen Nathan, a certified health coach in private practice in Princeton, New Jersey. “Marketers are smart; they are following the tsunami of spending. A tiny sliver of the population has celiac disease or medically diagnosed gluten sensitivity. The vast majority of people do not need to diligently follow a gluten-free or low-gluten diet.” Women do so, experts say, because the diet has been made so accessible that it now seems like the popular thing to do. Going gluten-free has become the latest cultural answer to a problem caused by culture itself, a catch-22 to be faced at every meal.

Even with little medical knowledge about the science of gluten sensitivity, diet trends like gluten-free eating ultimately thrive because, according to experts, people buy into quick fixes, thinking that alienating one food will solve the challenges of everyday health. This represents what Dr. Nicole Avena, a neuroscience researcher at the New York Obesity Research Center, calls “an obesitic environment” in America. Avena says society has adapted a kind of thinking in which people allow themselves to over-consume and then try to remedy it later. This obsession with food choice often leads people to cut out the wrong ones, proliferating the continuation of new diets. “Most people think, ‘Well, what do I have to lose?’” Avena says of frequent diet switches.

***

As gluten-free has grown from a rare disease to a trendy diet, celiac suffers find it harder for their allergy to be taken seriously. “I’ve got a Brooklyn accent, I go to NYU, and I’m gluten-free,” says Nancy Caracciolo, laughing. “It’s almost, like, contradictory.” Never did the Italian girl from Brooklyn expect a food allergy would bring a stigma the way being gluten-free has. “You know how if you tell someone you’re vegan, people kind of roll their eyes? It’s kind of like gluten-free is taking that roll-your-eyes turn. And it’s like, ‘No! I get sick. I get really, really sick.’”

Nancy says that most of the time, people regard her either as what she terms the “girl in a bubble,” someone too sensitive to live a normal life, or as an elitist adopting the next big trend. It’s the latter that bothers her the most. “I feel like some people kind of form an opinion when they hear it sometimes, so I don’t really like that so much,” she says. “Some people think you’re doing it out of a diet choice, like it’s a fad. That’s when I get negative feelings about it.”

Because her loyalty to a gluten-free diet fluctuates, it is less difficult for Marlene to adapt to the rest of the gluten-eating world. The importance of being flexible with her diet was a lesson she learned early on: “I found myself being very annoying because I would ask, ‘Does this salad dressing have gluten in it?’ and like, it’s not going to kill me,” she admits. Because her gluten-free eating is voluntary, Marlene can make food choices without worrying what the social repercussions might be. She straddles the two worlds in a way Nancy Caracciolo can only dream of.

***

Though she knows the day will never come, Nancy sometimes fantasizes about life without celiac disease. Once she starts, it’s hard for her to stop: “I would probably have pizza. Or pancakes. I would go into a carb coma probably. I would have those Belgian waffles,” (she mentions a popular waffle truck that parks near the university). “I see that truck all the time, I smell that truck, I want what’s on that truck. I’ve never felt that way about anything before, but that truck I do feel that way about. I look at that—I would have some kind of crazy Belgian waffle. I would probably have some fries. Wings. Nuggets. And then I would get sick. I would probably get ridiculously sick because I would be so excited that maybe I would eat everything. And then that would be it—that would be one day and I’d get it out of my system and I’d be okay.”