When selective eating signals something more
Fact checked by Derick Wilder
For years, Julia Ramirez (not her real name), who lives in Chicago’s Hermosa neighborhood, suspected something was wrong with her daughter’s eating habits.
As a baby, her daughter struggled with food, eating only a few baby food flavors and refusing mixed varieties. The selectivity continued as she grew older.
Ramirez tried everything. She took classes on picky eating, read books, worked with a nutritionist, and joined online support groups. But nothing seemed to help. Her daughter was sensitive to smells, textures, and even the temperature of food.
“I spent so many years thinking it was just picky eating,” Ramirez says.
Amid these challenges, Ramirez’s daughter was diagnosed with global developmental delay, later accompanied by a learning disability. “I kept getting assured by the developmental delay doctor that this part of her brain sometimes takes a while to develop,” Ramirez says.
At the time, Ramirez had never heard of avoidant/restrictive food intake disorder (ARFID), an eating disorder in which a person regularly avoids or limits how much they eat. Unlike anorexia or bulimia, ARFID is not driven by body image concerns. Instead, it stems from sensory sensitivities to textures or flavors, low appetite, or fear after a traumatic eating event such as choking or anaphylaxis.
“Choking is a big one,” says Gregg Montalto, founding medical director of the Lurie Children’s Hospital Eating Disorder Program. “Sometimes vomiting triggers it, and sometimes it’s anaphylaxis. The fear of that happening again leads to weight loss and malnutrition.”
In diagnosing the disorder, physicians often look for an overreliance on nutritional supplements, frequently accompanied by extreme anxiety around food-related situations that can affect a person’s ability to socialize, Montalto says.
“They could have difficulty maintaining peer relationships, and may be afraid to go to a restaurant and be embarrassed because they can’t order anything,” Montalto says.
While ARFID is more common in children and adolescents, adults can develop it, too. Kim Anderson, regional clinical director at Eating Recovery Center, says, “With some patients, there could be intense feelings of disgust with certain foods, often related to taste, smell, and texture. It’s going to be a bigger reaction than ‘I just don’t like it,’ and can lead to avoidance and restrictive eating.”
Introduced as a diagnosis in 2013, ARFID remains widely misunderstood.
“You get judgment,” Ramirez says, recalling the people who told her to make her daughter eat what was served and not offer special meals. “I can set my daughter with the same plate of food for three or four hours, and she won’t eat it,” she says. “This isn’t a preference.”
Diagnosing ARFID
By the time her daughter was in second grade, Ramirez realized the eating habits seemed to go beyond sensory aversions. By third grade, the problem was undeniable.
Her daughter’s diet had narrowed to specific brands and types of food, including Little Caesars pepperoni pizza and plain McDonald’s cheeseburgers. Then she stopped eating meat.
“I classify myself as lucky. We got one of the few emergency room doctors who knew what this was.”
“There were probably 10 to 12 foods she would eat,” Ramirez says. “As third grade went on, it got less and less. And then she passed out at school.”
Ramirez rushed her daughter to Lurie Children’s Hospital. Initially, she says some medical staff presumed she was forcing her daughter to be a vegetarian.
“The original emergency room nurse walked out and was ready to call DCFS on me because she assumed the vegetarian practice was our family’s,” Ramirez says. “But there was a doctor who listened.”
She recalls pleading with the staff: “I said, ‘Look at me. I’m chubby, my husband’s chubby — we’re meat-eaters. We’re not forcing vegetarianism on her.’”
That’s when the doctor asked whether she’d heard of ARFID.
Instead of calling the Illinois Department of Children and Family Services, which has an “inadequate food” provision to protect children who have not received adequate nutrition, Ramirez began getting answers.
Her daughter joined group counseling through the Lurie Children’s Eating Disorder Program.
“A large portion of people just get misdiagnosed,” Ramirez says. “I classify myself as lucky. We got one of the few emergency room doctors who knew what this was.”
Finding solutions
If left untreated, ARFID can significantly affect a child’s nutrition, development, and emotional well-being. Treatment often requires specialized therapy, tailored treatment, peer support, and addressing co-occurring conditions such as ADHD or OCD, as well as medical conditions including allergies, gastroesophageal reflux disease, eosinophilic esophagitis, or mast cell activation syndrome.
The process usually involves a medical team, including a doctor, dietitian, and therapist specializing in feeding disorders. Eating Recovery Center, which has locations in Chicago, Northbrook, and Oakbrook, uses cognitive-behavioral therapy for ARFID through inpatient, outpatient, or virtual programs.
“When you’re treating ARFID, you’re going to use a combination of medical, psychotherapeutic, and nutritional kinds of interventions,” Anderson says.
Lurie’s program offers a six-week group therapy with a team that includes a psychiatric social worker, attending physician, psychologist, and clinical social worker. Ramirez, who attends therapy with her daughter, says the experience has helped.
The program focuses on micro-exposures to gradually build tolerance.
“If you have a fear of heights, you’re not going to start by standing at the edge of the Grand Canyon,” Ramirez says. “You’re going to start by standing on a chair.”
As a result, she says, “My daughter has made a bigger effort to try foods. Most of them she doesn’t like, but she’s giving it a chance.” A chance Ramirez is grateful to see.
