ARFID: An Often-Misunderstood Eating Disorder

A UHealth gastroenterologist and psychiatrist work together to help patients overcome a dietary health challenge.

Consider this scenario: A new restaurant opens in your neighborhood. Eager to try this new dining spot, you go there with your family. Everyone orders a different dish, and every single person wakes up later that night with food poisoning.

Would you ever go there again?

A similar scenario happens to some children and adults who experience unpleasant or traumatic events after eating certain foods. Maybe a child, teen, or adult has a gastrointestinal condition aggravated by particular foods or a swallowing disorder that makes eating a scary experience. Unlike the restaurant scenario, however, food avoidance becomes an ongoing health issue that can lead to Avoidant Restrictive Food Intake Disorder (ARFID). 

“People with ARFID associate their uncomfortable symptoms with food — either a particular experience that was traumatic, a medical condition, or a texture — they over-limit themselves by removing foods from their diet so they don’t repeat those symptoms,” says Morgan Allyn Sendzischew Shane, M.D., a gastroenterologist with the University of Miami Health System’s Comprehensive Women’s Health Alliance.  

“It’s different from typical eating disorders because it’s often motivated by a medical problem, which could be any number of diseases, including gastroparesis, IBS, or a swallowing disorder, rather than body image. In kids, it can be a texture issue – they’re afraid of choking on a chunky food, for example.” 

UHealth psychiatrist Felicia Giuseppina Gallucci, M.D., works closely with Dr. Shane to help patients overcome ARFID. She agrees that ARFID can develop for several reasons. “It can be trauma-based, and individuals with autism may be sensitive to textures and smells. It’s important to understand the behavior and how it influences function and daily routine.”

ARFID often goes undiagnosed. 

A relatively new disorder, ARFID appeared in the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 2013. 

“Food is essential; we get our micronutrients, minerals, and nutrition from food. Most people don’t recognize the seriousness of the situation, or they try to solve the problem themselves,” says Dr. Shane. She encourages her patients to be mindful of their eating habits and realize when something is not right. She and Dr. Gallucci work to raise awareness of this and other eating disorders so more physicians recognize the symptoms. As Dr. Gallucci says, “Eating disorders are misunderstood and underrepresented.”

ARFID manifests differently, depending on a person’s age and situation. Children are often dismissed as being picky eaters or going through a phase. “If a child is chronically nauseated, it’s easy to prescribe an antinausea medication and overlook ARFID as an underlying issue,” Dr. Gallucci says. In young women, ARFID is often disguised as chronic diarrhea. In adults, “It’s tricky to diagnose because it is so closely linked with other conditions,” Dr. Shane says. She recalls an elderly patient who was “terrified to eat anything” because she experienced constipation after surgery – a common side effect of post-surgical pain relief medication. 

The following symptoms may indicate ARFID:

• Significant weight loss or falling behind in height (in children)
• Mealtimes become stressful
• Disinterest in food
• Withdrawing from social gatherings due to an overly restrictive diet
• Malnutrition or nutritional deficiencies

It takes a multidisciplinary village

When the body and mind signal that eating is unsafe, it is important to see a doctor.

“There is no way to tackle this without a multidisciplinary approach. A patient may work with a gastroenterologist, psychiatrist, psychologist, and dietitian. The great thing about UHealth and the Women’s Health Alliance is that we have access to a multidisciplinary network of specialists,” Dr. Shane says.

Dr. Gallucci agrees. “It takes a village to raise a child; this is especially true with eating disorders; they require a holistic, collaborative approach.”

With the stigma that still surrounds mental health issues, she says, “Patients usually see a gastroenterologist first. Having a medically driven answer is more acceptable to most people. Also, we need to ensure that there are no underlying medical conditions or consequences from the eating disorder. Of all the psychological disorders, eating disorders tend to be more lethal.” 

If the patient is a child, they would be referred to Dr. Gallucci by a pediatrician. 

While a gastroenterologist treats and medically monitors underlying conditions that may contribute to ARFID, and occupational therapists help patients with swallowing disorders, psychologists and psychiatrists address the emotional factors. 

“I connect patients with specialists trained in eating-specific issues. Any Cognitive Behavior Therapy (CBT) must focus on eating disorders,” says Dr. Gallucci. Exposure to “fear foods” is another therapeutic tool. If the patient is afraid of choking, a therapist may gradually and safely expose the patient to that food to decrease the intensity of their fear. 

“Alleviating fears or anxiety could improve the physical symptoms and the person’s experience with food,” Dr. Gallucci says. “Family therapy is also important since eating disorders are often perpetuated by family disorders.”

Hope on the horizon

Overcoming ARFID requires effort on the patient’s part, but Dr. Gallucci believes they can succeed. She is currently developing an eating disorder program along with her colleagues. Both she and Dr. Shane are also working to make other physicians aware of ARFID, especially when patients experience significant weight loss.

It’s a valiant effort, for food not only nourishes our bodies, but when shared with family or friends, it nourishes our souls. 

Nancy Moreland is a regular contributor to the UHealth Collective. She has written for several major health care systems and the CDC. Her writing also appears in the Chicago Tribune and U.S. News & World Report.

UHealth’s Comprehensive Women’s Health Alliance provides specialized care for women’s health at all ages. Call 855-3-4-WOMEN (96636) or request an appointment online.

Tags: behavioral health, Dr. Felicia Gallucci, Dr. Morgan Sendzischew Shane, eating disorders, gastroenterology