The independent news organization of Duke University

A Thin Spread

When Heather Hill was a child, the only foods she would eat were a few standard-order kid staples—mac and cheese, french fries, crackers and chocolate milk.

Now, more than three decades later, her menu is essentially the same. No meat. No spices. Exactly two vegetables. Give her a piece of plain, cooked chicken, she says, and it feels like she’s trying to chew her way through a habanero pepper.

“I want to eat new things, but whenever I try something it just shocks my mouth,” she said. “My senses are overwhelmed and my brain freezes and I just can’t do it.”

Call her picky, finicky, selective, whatever—Hill just wants to know why she reacts to food this way, and if there’s anything she can do to change it. And she’s not the only one. Since July, Nancy Zucker, director of the Duke Center for Eating Disorders, and her colleagues have been conducting research into the causes of so-called “extreme picky eating” in adults, a murky condition that causes otherwise well-adjusted people—Hill is a business owner and mother of 3—to eat only the same 10 to 20 foods, day in and day out, for their entire lives.

To say the condition is little known is a vast understatement. But Zucker says it may be more common than you think. This summer, researchers at the Center for Eating Disorders launched the world’s first registry of adult picky eaters, the Food F.A.D. Study (Finicky Eating in Adults), and so far, they say, more than 9,000 people, including Hill, have logged their eating habits and medical histories.

“I was thinking we’d get maybe 500 responses, but when the survey went up, it just immediately went crazy,” Zucker said.

The respondents are a diverse group, from the 30-year-old Ohio woman who eats fries for nearly every meal to the former sailor in the U.S. Navy who says that for him, most food “looks and smells like barf.” But they all have something important in common, Zucker says—their eating habits cause anxiety and interfere with their ability to function in social, professional and family situations, a hallmark of disordered eating. But unlike, say, anorexics or bulimics, extreme picky eaters don’t have a title to apply to their unusual symptoms.

“We just want it to have a name,” Hill said. “We want this to be recognized by the medical community as a real condition.”

The issue, many extremely picky eaters say, is that they’re crippled by a lack of knowledge about their own problem. How do you explain to someone why eating an apple feels to you like chewing on a dirty sponge, or why trying a new food can cause a panic attack? Many tell stories of being bounced from doctor to doctor looking for help. Family practitioners refer psychiatrists who refer nutritionists who send them back to their family doctor. And friends and family often raise an eyebrow at the idea that extremely picky eaters really cannot eat the foods they avoid. Part of the problem, Zucker says, is that although people know intellectually that there are variations in how well people are able to use their senses—eyesight, for instance—they simply cannot empathize with people who have trouble eating “normally.”

“Most of us just can’t imagine how food would taste different than it does,” she said. “It’s very hard to put yourself in their shoes.”

And as Hill points out, it’s kind of hard to explain your problem when you don’t even have something to call it. It’s even more difficult to get your insurance to cough up the cash for treatment. That’s why many picky eaters hope Zucker and her colleagues will be able to use their research to convince the American Psychiatric Association to officially label their condition a mental disorder when its latest diagnostic manual is released in 2013.

But even if that hurdle is cleared, the causes of extreme picky eating are still far from well understood, says Dr. Devdutta Sangvai, medical director of the Duke Center for Eating Disorders. Sometimes patients come in to his office with untreated allergies, swallowing problems or other medical issues that cause panic around food. Others have psychological aversions stemming from childhood trauma, such as a long illness that made eating difficult.

Extremely picky eaters often go out of their way to avoid restaurants, company lunches and holiday dinners, fearful of the minefield of unpalatable foods they might encounter. When Joyce Deer, a teacher from Mississippi, was invited to a state dinner in Washington honoring her teaching, she says that from the “five-course meal on gold rimmed plates,” she ate only rolls and butter. Like many picky eaters, she says this kind of experience has conditioned her to view her quirky eating habits with shame.

“I never asked to be this way and I would certainly change if I could,” said Bob Krause, the founder of the online support group PickyEatingAdults.com and a participant in the Duke registry. Well into his 50s, he says his narrow food repertoire—the standbys include peanut butter crackers, buttered toast and grilled cheese sandwiches—made him feel like a pariah. Work was a constant stress, romantic relationships were fraught with tension (where could they go for a date?) and worst of all, he says, he was sure he was the only person out there who got the creeps from looking at spaghetti.

That all changed in 2000, when he found another man who shared his symptoms through an eating disorders website. Okay, he thought, so there are at least two of us. Three years later, with that realization still rattling around in his brain, he decided to start a website for adult picky eaters. If there was anyone else out there, he figured, that would be the easiest way for them to find him.

And they did. Today the site has more than 1,900 active members who swap stories and exchange tips on navigating tense food situations. One woman recently posted to the group’s discussion board asking for advice on what she should do at an upcoming company lunch. Tell them you have allergies, one commenter suggested. Say you already ate, another offered. Or, chimed in a third, you could just take a bit of food and move it around your plate as you talk to people—that makes it hard for them to tell you haven’t eaten.

Since the site went live, Krause and his cohort have been featured on Dr. Phil, ABC’s Nightline and TLC’s “Freaky Eaters.” For Hill, who was part of the Dr. Phil segment, the publicity has been great, and it has even helped her find other picky eaters in the Triangle area (she lives in Raleigh). But the community is also looking for something more—treatment.

To that end, in addition to the picky eater registry, Zucker is working on a grant to study the taste thresholds of picky and non-picky eaters—in other words how well, or poorly, they detect the basic flavor types, and how they react to them. She hopes it will explain why many common foods taste to picky eaters like finely ground raw cow brain. The work could also shed light on why they share certain favorite foods, most of them bland, processed and laden with carbohydrates.

Most picky eaters, she says, also have sensory issues with food that extend beyond taste, to smell and texture. Even when Hill, for instance, is eating her french fries, she has to remove burned or overly crunchy tips, which make her gag if she chomps down on one unaware.

Although Zucker hopes her new research will account for why extremely picky eaters have such crotchety taste buds and such sensitive… senses, she says that for now treatment options remain very limited. The biggest thing she can hope to do for adult picky eaters, she says, is help them conquer their “food neophobia,” or extreme fear of trying new foods. But whether or not she could ever get them to actually like different foods is a whole different story.

“Whether treatment is a success really depends on how you choose to define success,” Sangvai said. Do you want to like new foods, he asks patients, or merely be able to go out to dinner at a restaurant and find something on the menu you can tolerate?

For her part, Hill says that at age 40 it’s probably too late to turn her diet around, even if the Duke doctors come up with a treatment plan. Despite her diet of french fries, she is relatively healthy—the long-term health effects of picky eating disorder remain a focus of research. Regardless, she has the life she wants, even if it features a few more grilled cheese sandwiches than your average autobiography. But she can’t help but worry for her 6-year-old daughter Sarah, who has eaten like her mother nearly since infancy.

Doctors at Duke have tried to train Sarah to eat new foods through therapy that rewards her each time she steps outside her food comfort zone. But Hill says that back at home, Sarah never seems to take the lesson to heart, and keeps eating as she always has.

“Given my own experiences, I don’t know how far to push it,” Hill said. “I just want her to be healthy and secure enough not to be embarrassed by this.”

Krause says that for now, that’s one of his biggest goals too—to make it so that picky eaters don’t feel they have to hide their habits. The first step?

“I ask people to imagine for a minute that you lived in a world where everyone ate raw liver for every meal,” he said. “You’d probably be really embarrassed to admit if you couldn’t do it too.”

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