For most of her childhood, Jenna (not her real name) spent dinnertime staring at a plate of food that she refused to touch. She often was sent to bed hungry, or her parents caved and let her eat the only thing she could get down: French fries. Dinnertime hasn’t changed much for the 30-year-old dance teacher, who estimates that fries still constitute 90 percent of her meals. In the last 15 years, the only addition to Jenna’s diet has been pancakes, which she says took more than a year to work up the courage to taste. When she tried an orange for the first time at age 18, she immediately threw up.
But Jenna doesn’t restrict her diet because she loves fried potatoes—in truth, she doesn’t enjoy them at all. Jenna suffers from an unusual eating sensitivity, which has compelled her to eat almost nothing but French fries, cheese pizza, and spaghetti ever since she graduated from Gerber baby food as a toddler.
Over the past few years, researchers have been struggling to explain the origins and causes of the condition, which is sometimes called extreme picky eating, food neophobia, or Selective Eating Disorder (SED). Some psychiatrists attribute it to anxiety around past traumatic experiences such as choking on a food with a particular texture. Others suggest it could stem from an ingrained phobia of trying unfamiliar things, or liken it to the extreme sensitivity to textures and smells that coincides with autism or Obsessive Compulsive Disorder.
Because the condition often straddles the line between mental and food-related syndromes, however, it’s difficult to define and, as a result, even harder to treat. Extreme selective eating falls so under the radar that many health professionals are unaware of its life-altering social and medical effects. Almost all the selective eaters interviewed by The Daily Beast mentioned that their doctors had never heard of picky eating or its treatments.
But health consequences of SED can pose serious dangers. Dr. Sondra Kronberg, a clinical nutrition therapist and the spokeswoman for the National Eating Disorders Association, says “nutritional effects of extreme selective eating would be dehydration, malnutrition, bone loss, hormonal imbalance.” The more extreme risks range from cardiac problems to stunted growth and a diminished immune system. While some picky eaters can get enough nutrients from their diets and supplements, it’s possible that a lifetime of greasy, fatty foods can have consequences. Lesa Thieroff, a retired accountant, recently was diagnosed with Type II Diabetes, which she was told was a direct result of the lack of nutrition in her limited diet. “In the past I might have remained adamant that my minimal eating selections were of no consequence to my health,” she says, admitting that her eating habits have actually caused dire issues as she has aged.
According to psychiatrist Angela Guarda, director of the Johns Hopkins Eating Disorder Program, while picky eating is commonly associated with children, a handful don’t outgrow it once they hit adolescence. French fries, PB&J sandwiches and other “kid” foods often make up their primary staples, while fruits and vegetables are almost always seen as inedible. As much as they might want to expand their diets, just the smell of a new food can trigger a gag reflex in extreme cases. Guarda thinks the restriction to comfort foods might be found in our evolutionary history, and for some reason those affected with SED don’t outgrow the preferences given at birth. “It’s possible that we have evolved to prefer high- calorie foods and to avoid bitter foods or sour foods in infancy because it’s protective to do so,” she says, explaining that high-calorie foods are used as a survival method, to prepare for times of famine. Bitter foods, like vegetables, are a taste that’s acquired later on to prevent babies from eating potentially poisonous things.
A few recent extreme cases in the news have shed a little light on selective eating: one British teen collapsed at work and was hospitalized for anemia after only eating chicken nuggets since she was 2 years old. A month later, a woman made headlines after a story about her cheese pizza-only diet appeared in a British tabloid.
While media exposure can help undiagnosed sufferers and unaware medical professionals, those with SED find they often are portrayed as weird or childish. In 2010, law student Amber Scott appeared on Freaky Eaters, the TLC show about Americans with strange eating habits (her staple food is French fries). What she thought would be a way to spread awareness turned into “fix the freak,” she says. “They were out for ratings and not for assisting me.” Ironically, her participation did assist someone: Jenna, who was watching the show from her living room in Toronto. Until Freaky Eaters, she had no idea there were others with her dietary problems; she cried when she realized she wasn’t alone. “It was so nice to know that there are other people with this same problem.”
And there are more people than anyone predicted. In 2010, psychologist Nancy Zucker and her team at the Duke Center for Eating Disorders launched the first large-scale study of adult selective eaters through an online survey. Zucker says she expected to get a couple hundred responses, but 18,000 people have since participated. She hopes the industry can use the center’s future findings to create a way of categorizing people with food restrictions that impair health and functionality, but don’t necessarily entail the goal of weight loss. “It may be that we have a broad selective eating umbrella and then we can describe people based on genetic or taste variations to try to get different tailored interventions,” Zucker says. “I wouldn’t say you could go so far as to snap them into food adventurer, but I would say that you can make a picky eater into someone who’s food-curious.”
Until extreme picky eating is listed in the Diagnostic and Statistical Manual of Mental Health Disorders, funding, awareness, and treatment are scarce. With possible upcoming additions to the DSM-V, along with the Duke study and recent media attention, the National Eating Disorders Association’s Dr. Kronberg says, change may not be far off. Widespread awareness could pave the way for acceptance and, most important, medical research—just as there is for those with hearing impairments or color blindness. “This is going to be the start of recognizing that just as people hear things differently and people see things differently, people also taste things differently,” Kronberg says.
Kristen (not her real name), a graduate student in Oregon, brought her extremely selective 8-year-old daughter to a variety of doctors, but was told it was a phase she’d grow out of. After a meltdown at a Thai restaurant, however, Kristen decided to take matters into her own hands. First she fed the child plain Asian noodles, then those plain noodles ordered from a Chinese restaurant. Then they went to the restaurant for the noodles, and finally, visited another Asian restaurant and got noodles with a few added spices. Kristen inadvertently experimented with the same tactic doctors are trying, and she thinks it might be working. (Potatoes are next.) Psychologist Peter Girolami, the clinical director of the Pediatric Feeding Disorders Program at the Kennedy Krieger Institute in Baltimore, uses similar “desensitization tactics” for the kids he sees—with an 87 percent success rate. “It may take some time, but if you can get [the new food] in, next time they’ll look at it a little differently,” he says.
For kids, not being able to eat cake at a birthday party means they might be too embarrassed to attend. But as they grow older, a limited diet can have life-altering consequences. They can’t “just try it,” as many say they’re pressured to do. (“That’s like telling an individual with Parkinson’s disease that they could stop shaking if they just tried to hold themselves still,” Amber Scott says.) In a culture that revolves around food, everyday activities such as dates, business dinners and weddings are stressful for picky eaters, who say they often make up excuses to refrain from eating and to avoid uncomfortable questions.
For Bob Krause, the consequences of picky eating came in the form of broken marriages, his decision to leave the Navy, and—in an attempt to avoid business dinners and potlucks—becoming self-employed. Until he was 53, Krause says, he truly believed he was the only person in the world with such unusual habits. In 2003, he launched an awareness-raising website called Picky Eating Adults, which quickly became a forum for thousands of selective eaters to swap advice, dietary habits and coping methods.
“Anyone tell their kids that they are ‘allergic to vegetables’ so they don’t ask questions when mommy isn’t eating them?” one woman asked on the Picky Eaters Association group on Facebook. With limited information available about the disorder, members, many of whom are only now discovering that they’re not alone in their inability to eat, turn to each other for advice. One woman posted a survey asking: “Does anyone else in your family have picky eating issues?” Until the medical world takes notice, people like her may only find answers from the hidden thousands who suffer privately with SED.