Crohn’s disease is an autoimmune condition affecting the digestive tract. It’s a type of inflammatory bowel disease (IBD).

Food doesn’t cause Crohn’s disease or start flare, but food choices may play a role in helping to manage the symptoms of a flare. The symptoms of Crohn’s disease can affect a person’s mental health and cause negative associations with food.

There are many risk factors for eating disorders. People with Crohn’s disease may be at a higher risk for developing an eating disorder. Many people with IBD become hyper-focused on what to eat and avoid as a way to try and manage symptoms.

People with Crohn’s disease may be more likely to develop an eating disorder called avoidant restrictive food intake disorder (ARFID). People with ARFID feel fear about eating certain foods or have a general lack of interest in eating.

Unlike other eating disorders, ARFID doesn’t typically affect body image. ARFID can, however, increase the risk of malnutrition, which is already a risk for people with Crohn’s disease. There’s a significant overlap in the symptoms of Crohn’s disease and ARFID.

Here’s what we know about the link between these two conditions, signs of ARFID, and how to get help.

Food may play a role in managing symptoms of Crohn’s during a flare. Even though food doesn’t cause a flare, many people start to associate certain foods with an increase in their symptoms.

A major risk factor for developing ARFID is having an adverse reaction to food. Many people with Crohn’s disease feel afraid of eating because they don’t want to make their symptoms worse.

Social isolation is common in people with Crohn’s disease and ARFID. Anxiety about food choices and symptoms can interfere with going out for a meal or eating with others.

Keren Reiser is a registered dietitian based in Ontario, Canada. She works with clients who have IBD and underlying eating disorders. She has also lived with ulcerative colitis for over 25 years.

“The fear of gastric pain or bowel movement urgency causes IBD patients to start eliminating foods when they suspect a pattern between food intake and their worsening symptoms,” says Reiser. “It is common for an IBD sufferer to exhibit characteristics of ARFID.”

Many people with Crohn’s disease skip meals, restrict certain foods, and eat smaller amounts as a way to try and manage symptoms.

A survey of people with active IBD symptoms showed that 92% avoided one or more foods. This number isn’t surprising. Many people find certain types of foods can worsen symptoms when they are in a flare.

It may be surprising that even in remission, 74% of people with IBD continued to avoid one or more foods. This is in spite of the fact that there’s no evidence to support food avoidance once symptoms have resolved.

Chelsea Cross is a registered dietitian and owner of MC Dietetics in Ontario, Canada. Cross has had Crohn’s disease for many years and developed an eating disorder as a teenager. She now supports clients with digestive disorders to improve their relationship with food.

Cross recognizes the links on both a professional and personal level. “I find there are huge connections,” she says. “The problem is that in remission, clients still struggle with PTSD-like fears around trying new things. They worry that they will ‘cause’ it to come back with one bite of a fear food.”

A 2021 study found that ARFID is more likely to develop in those who have IBD. The study emphasized the importance of educating clinicians. This is essential to appropriately screen and address ARFID in people who have IBD.

An older study from 2012 showed that only 8% to 16% of people felt they had enough education on the role of diet in IBD.

Cross sees this too often in practice. “When in a flare, clients are often told nothing and left to their own devices,” she says. “If navigating this alone and the client has any sort of symptom after or around the time of eating a certain food, they just stop eating it. Then the list of foods they do not feel safe eating just gets longer.”

“Stress is a major component of IBD,” adds Reiser. “It is very hard to determine if it’s food or stress that is causing the worsening symptoms. Many [people with IBD] will eliminate and avoid many foods and eat a very limited diet.”

Many of the signs and symptoms of ARFID are present in someone with Crohn’s disease. In one study, a group of over 160 people with IBD were screened for ARFID. Results showed that 17% of them met the criteria for ARFID.

ARFID is a newly recognized eating disorder, so many health professionals may not be aware of it. The other challenge is that so many of the symptoms of ARFID and IBD overlap.

Signs and symptoms of ARFID include:

  • fear of the consequences of eating
  • significant weight loss
  • low interest in food or eating
  • nutrient deficiencies
  • restrictive eating that interferes with normal social functioning
  • dizziness or lightheadedness
  • fatigue

Many of these symptoms are already present in a person living with Crohn’s disease. Symptoms become much worse with the development of ARFID.

“I do believe eating disorders can be well hidden in the IBD population,” says Reiser. “It is important for physicians and dietitians to get a good diet and nutritional history.”

Living with ARFID increases the risk of nutrient deficiencies. A limited diet with low food intake makes it almost impossible to meet the body’s needs.

ARFID can lead to:

  • anemia
  • weight loss
  • low levels of other nutrients
  • fatigue
  • changes in mood

Studies estimate that between 16% and 68% of people with IBD are malnourished. Living with IBD and ARFID increases this risk even more. Malnutrition is associated with longer hospital stays and worse outcomes.

Like other eating disorders, people with ARFID do best with a team approach to care.

The healthcare professionals involved in treating ARFID include:

  • primary care doctors
  • mental health counselors
  • speech-language pathologists
  • occupational therapists
  • dietitians

There are different treatment approaches, depending on a number of factors.

Cross uses a very gradual approach to reintroducing foods for both her clients and herself. “Try TINY amounts of new things for a bit before increasing,” says Cross. “For example, have your usual breakfast, but add a tablespoon of some new food with it.”

Cross also emphasizes the importance of getting support to manage the anxiety around food and digestion. “Working with a therapist [is important] to normalize body sensations so it does not cause such trauma. Symptoms like gurgling, fullness, and gas can terrify someone with IBD, as if those are first warning signs [of a flare].”

Many people with Crohn’s disease also live with anxiety and depression. It’s estimated that 21% of people living with IBD also have anxiety. The rate of depression among those with IBD is 16%. These mental health conditions increase the risk of developing an eating disorder.

Mental health support is essential, especially when a person also has anxiety or depression.

Eating disorders are hard to cope with but they can be treated. As more healthcare professionals become aware of ARFID, the hope is that more people will be given the help they need. Earlier intervention improves outcomes in eating disorder treatment.

A good start is talking with your doctor about your concerns. Your doctor can direct you to programs and other health professionals who can support you to heal your relationship with food.

The signs and symptoms of Crohn’s disease and ARFID can overlap. People living with Crohn’s disease may be at an increased risk of developing an eating disorder.

Many people with IBD restrict their diet as a way to manage symptoms. This can lead to a fear of eating.

People living with Crohn’s disease are at a greater risk of malnutrition. Developing ARFID further increases the risk of malnutrition. If your symptoms are affecting your relationship with food, reach out to a healthcare professional. There is help available.