SAN ANTONIO — Patients with avoidant, restrictive food intake disorder need special attention and referral, but many specialists don't understand the condition, new research shows.
These patients "are presenting to GI clinics and primary clinics. They're not presenting to a psychiatric clinic saying they have a fear of eating," said Kimberly Harer, MD, a gastroenterologist at the University of Michigan in Ann Arbor.
"That's why it's so critical for us to be able to identify the red flags," she said during the presidential plenary here at the American College of Gastroenterology (ACG) 2019 Annual Scientific Meeting.
The hallmark of avoidant, restrictive food intake disorder, commonly known as ARFID — which became an official diagnosis when the DSM-5 was published 6 years ago — is when food restrictions "spiral out of control," she told Medscape Medical News.
Many patients eat only five to 15 foods, and some describe "catastrophic" fears of choking, she pointed out.
Harer described one patient who explained that she could drink only raspberry Lipton iced tea because all other liquids, including water, brought on nausea, vomiting, and abdominal pain.
Another patient — a chef — eats only miso soup, oatmeal, and yogurt, and reports that other foods cause severe fear of negative consequences.
Most of the work on this eating disorder has been conducted in pediatric and adolescent populations. But for their study, Harer and her colleagues looked at the behavior health of adults who sought gastroenterology (GI) treatment at a tertiary care center from 2016 to 2018.
Food Trauma or PTSD
Emerging evidence indicates that 6% to 19% of GI patients have concurrent avoidant or restrictive eating, they report.
A gastroenterologist and GI psychologist conducted independent reviews of the charts of 223 patients and determined that 28 patients, or 12.6% of the study cohort, met the criteria for the disorder. Avoidant, restrictive food intake had not been raised as a concern for any of these patients.
"If it's not identified, it's not treated and patients suffer," Harer said. "Gastroenterologists need to refer to the appropriate specialist. At this time, treatment is more psychiatry-, psychology-, and nutrition-based."
There were no differences between patients who restricted foods and those who did not in the study cohort for age, sex, education, GI diagnosis, GI symptom severity, or mean body mass index.
However, patients with the disorder reported more severe food-avoidance concerns on the Irritable Bowel Syndrome Quality of Life (IBS-QOL) questionnaire than patients without restrictive food intake, were more frustrated that they couldn't eat what they wanted, and had fewer body image concerns (P < .5 for all).
One of the most frustrating things for patients with the disorder is that they are often told they have anorexia, Harer said. This can be very upsetting because of the negative stereotype associated with that eating disorder.
"The difference between avoidant, restrictive food intake and anorexia is that the driver of the restriction is not fear of weight gain or body dysmorphia. It is driven by a fear of GI symptoms and a fear of negative consequences. They want to eat and gain weight, but they are unable to overcome the disorder," she explained.
This study was highlighted in the presidential plenary because "people don't understand what it is and what it's not," said ACG President Sunanda Kane, MD, a gastroenterologist at the Mayo Clinic in Rochester, Minnesota.
It's far beyond the "picky eater" who won't eat mushrooms because of the texture or doesn't like foods on a plate touching each other or doesn't eat green things, she told Medscape Medical News.
"These are people who have food trauma or food PTSD," she explained. Food triggers a psychological reaction and it becomes a vicious cycle. Patients "are confused, they are lost, they are scared."
This is the first year that recognition is at the level that the subject warranted a 20-minute talk, she said. And it was popular; time ran out before the questions of all the people at the microphone could be answered.
One particularly insightful audience member raised the point that spouses or partners should be included in treatment discussions because they often unwittingly encourage restrictions by reminding patients that they shouldn't eat a food that previously made them sick.
Many patients with avoidant, restrictive eating are constipated, Kane pointed out, and providers might focus on that instead of the underlying information that the patient only eats three things, which could be causing the constipation.
"Gastroenterologists don't need to diagnose it, they don't need to treat it, but they need to be aware of it so they can refer the patient on for further evaluation and treatment if needed," said Harer.
But after referral, the gastroenterologist should continue to care for the patient simultaneously, she added.
Some physicians are not convinced the disorder is real, she acknowledged, but recognition is growing.
"I hear that all the time," she said. "A year ago I would hear, 'That isn't a thing. I don't have any of these patients.' Then a month or two later, the same physician would come back and say they had a patient with avoidant, restrictive food intake disorder."
American College of Gastroenterology (ACG) 2019 Annual Scientific Meeting. Presented October 28, 2019.
Medscape Medical News © 2019
Cite this: Avoidant, Restrictive Eating Often Confused With Anorexia - Medscape - Oct 29, 2019.