Has IBD Made You Food-Phobic?

People with inflammatory bowel disease are vulnerable to avoidant restrictive food-intake disorder (ARFID), a kind of PTSD for food. Here’s how to recognize the signs.

young woman looking unhappily at food on her kitchen table
ARFID can lead to unhealthy weight loss, malnutrition, and worsening IBD symptoms.Adobe Stock

A lot of people with inflammatory bowel disease (IBD) keep a list: They’ve been burned before, and they don’t want to forget. What they’re trying to track are “trigger” foods, ingredients or dishes that, for one reason or another, lead to painful flare-ups of their IBD symptoms.

“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 in Ann Arbor.

But what if the list gets too long? What if someone with IBD decides to eat only a few different kinds of foods or even stick to 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 worsening?IBD symptoms.

Researchers like Dr. Harer believe that many IBD patients could be at risk for ARFID and, worse, that they might not be able to tell if they have it. The disorder can be hard to see, and can slip under the clinical radar of 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.

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 diseases that includes ulcerative colitis (UC) and Crohn’s disease (CD). People with IBD experience unpredictable bouts of painful inflammation in their digestive tract. Harer’s work focuses on the link between these two conditions. “Preliminary evidence shows that ARFID is prevalent among GI patients and specifically among those with IBD.”

In a study published in Clinical Gastroenterology and Hepatology, researchers found that 17 percent of 161 participants with IBD presented with a positive ARFID-risk score and were significantly more likely to be at risk for malnutrition than those who did not. In addition, 92 percent of the participants reported that they avoid one or more foods when they have active symptoms of IBD while 74 percent continued to avoid those foods even in the absence of symptoms.

The Different Types of 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 anytime soon,” she says.

This pattern of avoiding certain foods is called conditioned food aversion, also known as the Garcia effect. People fear that eating a certain food will bring their symptoms back, so they restrict 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.”

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, PhD, an assistant professor at Harvard Medical School and the director of the gastrointestinal behavioral health program at Massachusetts General Hospital in Boston.

These physical markers are clear-cut signs of a problem. But some of the signs of ARFID, such as weight loss, are also signs of an IBD flare, which can make the condition difficult to diagnose.

Less clear-cut signs of a problem are ARFID’s social consequences. “Patients may avoid getting together with friends because they’re afraid to eat with them,” Dr. 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?”

Testing for and Treating ARFID

Burton-Murray and her colleagues created a questionnaire called the Nine Item ARFID Screen, or NIAS, that clinicians are now using in clinical practice to determine patients’ risk factors for developing ARFID. “The idea is to provide a brief survey that patients can complete and then the gastroenterologists won’t diagnose ARFID themselves necessarily, but will see that if patients are scoring high on this, it might be worth referring the patient to a psychologist or nutritionist for evaluation.”

Because ARFID is a relatively new and obscure diagnosis, Burton-Murray says treatment options are still being actively researched.

While there is not an agreed-upon best method for treatment, what seems to work for most patients 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 hourlong 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, RDN, a registered dietitian-nutritionist with the University of Michigan’s Crohn’s and colitis program. “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.

Support and Awareness of ARFID Are Rising

Even though ARFID still flies under the radar of some clinicians, Burton-Murray says awareness is on the rise.

“There are certainly some folks I’ve talked to in the GI field that don’t know that much about ARFID,” she says. “But overall I’d say that there’s a lot more awareness about it and there’s been a lot more studies done on it.”

One of these studies was completed by Jennifer Thomas, PhD, and Kamryn Eddy, PhD, both psychologists and colleagues of Burton-Murray’s at Massachusetts General Hospital. The two have tested a cognitive behavioral therapy protocol that shows initial improvements in adult patients with ARFID, though the patients did not present with ARFID in the context of GI issues.

Thomas and Eddy, along with their fellow psychologist Kendra Becker, PhD, published a book titled The Picky Eater’s Recovery Book: Overcoming Avoidant/Restrictive Food Intake Disorder. The book is based on their research and provides practical tips and structured activities to help patients beat ARFID at home and unlock healthier relationships with food.

Burton-Murray says that while some of the book is not applicable to GI patients, it is still a great resource for patients who have ARFID symptoms.

Luckily, increased awareness brings more resources. People suffering from ARFID can find free support groups online and in-person that offer guidance and community among patients along with other helpful resources.

Additional reporting by Megan Mikaelian

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  • Yelencich E et al. Avoidant Restrictive Food Intake Disorder Prevalent Among Patients With Inflammatory Bowel Disease. Clinical Gastroenterology and Hepatology. June 20, 2022.
  • Zickgraf HF et al. Initial Validation of the Nine Item Avoidant/Restrictive Food Intake Disorder Screen (NIAS): A Measure of Three Restrictive Eating Patterns. Appetite. April 1, 2018.
  • Thomas JJ et al. Cognitive-Behavioral Treatment of Avoidant/Restrictive Food Intake Disorder. Current Opinion in Psychiatry. November 2018.
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