“It’s a natural thing, if you eat something and it hurts you, you avoid eating it again,” says Kimberly Harer, MD, a gastroenterologist, professor, and researcher at the University of Michigan Medical School. But what if the list gets too long? What if someone with IBD decides to eat only a handful of different kinds of foods or even just one? That could be a sign of avoidant/restrictive food-intake disorder, or ARFID, a serious eating disorder that can lead to unhealthy weight loss, malnutrition, and a worsening of IBD symptoms. Researchers like Dr. Harer believe that many IBD patients could be at risk for developing ARFID and, worse, that they might not be able to tell if they have it. The disorder can be hard to see, and it tends to slip under the clinical radar of most gastroenterologists. “Dietary restriction can be adaptive and healthy,” Harer says, “but ARFID takes it to an unhealthy extreme.” Here’s why experts believe IBD patients are so vulnerable to ARFID and what people should do if they’re concerned they might be developing this eating disorder. RELATED: 5 Things to Keep in Check if You Have IBD

What’s the ARFID-IBD Connection?

ARFID is rooted in psychological causes. To be diagnosed, patients must feel an intense aversion to certain foods, and their restriction must be so severe that it affects their nutritional intake, their social life, or both. IBD, on the other hand, is a broad category of chronic autoimmune disease that includes ulcerative colitis (UC) and Crohn’s disease (CD). People with IBD experience unpredictable bouts of painful inflammation in their digestive tracts. Harer’s work focuses on the link between these two conditions. “So far there has been very little research investigating ARFID, so we don’t have a lot of answers,” she says. “But preliminary evidence shows that it’s prevalent among GI patients and specifically among those with IBD.” In a study she conducted involving 317 adult patients at Michigan’s gastroenterology clinics, about 20 percent (not all of whom have IBD) presented with signs of ARFID, suggesting a significant overlap between IBD and ARFID. Harer explains that there are three types of ARFID. The first, which usually affects children, is a kind of picky eating, as when kids refuse foods with certain textures. The second type of ARFID is a lack of food drive: Patients lose their appetites and show no interest in food. It’s the third type of ARFID, brought on by a fear of negative consequences, that usually affects people with IBD. Harer likens it to what happens after a bout of food poisoning. “If you eat some bad shellfish and you throw up and have diarrhea and get stomach cramps, you’re not likely to have shellfish again any time soon,” she says. This phenomenon is called conditioned food aversion. People fear that eating a certain food will bring their symptoms back, so they avoid it. As one of the patients in Harer’s clinic put it, “It’s like PTSD for food.” Most of the time these aversions aren’t a serious problem, since they’re typically short-lived and affect only one or two foods. But for people with IBD, the chronic and unpredictable nature of their disease makes ARFID a real concern. Their stomach cramps and diarrhea can last for months, even years, so it’s hard to tell which foods are triggers. Every meal becomes fraught. And if IBD symptoms occur after every meal, patients might not feel safe eating anything anymore. It’s the “bad shellfish” effect but for their entire diet. That’s how normal, healthy food restrictions slip into ARFID. “One patient of mine was so fearful she restricted everything except iced tea,” Harer says. “She thought everything else led to pain.” RELATED: Best (and Worst) Foods for Ulcerative Colitis

How to Tell if It’s ARFID

Not every IBD patient’s ARFID is obvious. In fact, IBD patients with ARFID might have a hard time recognizing they have a mental health disorder, because restricting food intake is a routine part of IBD treatment. “We tell patients that if they have a flare-up they should restrict their diets,” says Sarah Kinsinger, PhD, the director of behavioral medicine for digestive health at Loyola University Medical Center in Chicago. “And if certain foods cause problems, avoid them.” Many IBD patients, for instance, have popcorn, cabbage, or brussels sprouts on their lists of trigger foods. Avoiding them is a reasonable, healthy thing to do. So when does restriction become unhealthy? How can patients and clinicians tell the difference between sensible restriction and ARFID? “I look at the motivation behind the restriction,” Kinsinger says. Patients practicing healthy restriction take an experimental approach; they test foods and pay attention to their symptoms afterward. If they notice a specific food tends to bother them, they avoid it. It’s logical and dispassionate, and doesn’t take over their life. ARFID, by contrast, “feels sort of like a phobia,” Kinsinger says. “Fear is a huge underlying motivator. They’re so worried that a new food is going to wreck their day, they just stick to what they think is ‘safe,’ which is usually a very short list.” Physiological changes can also indicate that ARFID is taking root. “These patients are presenting with weight loss, a lack of appetite, or malnutrition,” says Helen Burton-Murray, a psychology clinical fellow at Massachusetts General Hospital/Harvard Medical School. These physical markers are clear-cut signs of a problem. Less clear are ARFID’s social consequences. “Patients may avoid getting together with friends because they’re afraid to eat with them,” Burton-Murray says. “Or maybe families are going to extreme lengths to accommodate the patient’s ARFID, like they’re going to five different grocery stores to pick up special brands of food.” But how much social strain is too much? How can patients and their loved ones learn to spot ARFID? At the end of the day, according to Burton-Murray, the answer is subjective. “A lot of it comes down to: How much is this getting in the way of your life?” Burton-Murray and her colleagues are developing a questionnaire that they hope will simplify the matter, but it has yet to be clinically verified. Until it is, patients and clinicians will have to rely on their best judgment.

How ARFID Gets Treated

Patients aren’t the only ones struggling to identify their ARFID: Clinicians don’t have an easy time of it either, partly because ARFID is a relatively new and obscure diagnosis that made it into the Diagnostic Statistical Manual of Mental Disorders (DSM-V) only five years ago. And since the DSM-V is a manual for psychiatric care, many gastroenterologists haven’t even heard of ARFID, or else have trouble fitting it into their clinical understanding. “The main issue is a lack of awareness of ARFID among gastroenterologists,” Harer says. “The eyes can’t see what the mind doesn’t know. That’s what’s happening here.” Nor is there an agreed-upon best method for treatment. What seems to work for most patients, though, is a team-based approach, involving three different clinical specialists: a gastroenterologist, a psychologist, and a dietitian. The gastroenterologist’s role is to use medication (usually steroids or biologic agents) to treat underlying IBD symptoms. Once the painful inflammation dies down, patients can take a more constructive approach to their diet. Psychologists like Kinsinger will typically recommend a course of cognitive behavioral therapy, delivered in hour-long sessions, once per week, for a few months. “I teach relaxation exercises and other coping strategies, and help patients start to change their thinking around food,” Kinsinger says. Then, under the guidance of a dietitian, exposure therapy begins, involving the gradual reintroduction of foods into the patient’s routine. “We have to do it very slowly,” says Emily Haller, a dietitian in Harer’s clinic. “One food at a time, we try things that they’re comfortable with. A slice of apple or a glass of milk. Then patients see how the food sits with them, and we scratch things off the list as we go.” Dietitians will also help tailor the reintroduction plan to the patient’s nutritional deficiencies, if there are any. Usually after a few months, with support from the dietitian and the psychologist, a patient’s diet expands to encompass a broader variety of nutrients. This helps them build confidence in their ability to handle different foods again.

Advocacy and Awareness Are Part of the Puzzle

None of this treatment can happen if doctors aren’t able to diagnose ARFID in the first place. That’s what Harer wants to change. “ARFID among IBD patients is underdiagnosed and undertreated. Until we can identify and treat it, patients will continue to suffer,” she says. “But if we can make clinicians aware enough to identify these patients, or if patients know enough to see these patterns themselves, that’s a good first step toward getting them well again.”