From Food Fears to Food Freedom: How Do We Best Manage Restrictive Eating in Inflammatory Bowel Disease?

Abstract

Avoidant/restrictive food intake disorder (ARFID) is classified as a feeding and eating disorder in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5). People with ARFID present with avoidance or restrictive behaviors around eating, driven by fear of aversive consequences, sensory sensitivity, or lack of interest in food/eating, resulting in interference with psychosocial functioning, malnutrition, weight loss, or nutritional deficiency.¹Figure 1 provides a summary of ARFID diagnostic criteria, common treatments, and psychological and nutritional interventions. There has been increasing interest in the identification of ARFID among patients with gastrointestinal (GI) conditions including inflammatory bowel disease (IBD). This comes from good intention—patients with IBD frequently modify their diets to manage symptoms and many experience significant impairments in food-related quality of life (FRQoL) due to severe postprandial symptoms and/or the amount of time spent thinking about and planning around food and eating.² Existing studies have demonstrated those with active disease are at greatest risk of restrictive eating behaviors and worse FRQoL. It has been previously reported that 10%-54% of patients with IBD meet the criteria for ARFID based on a brief screening measure (the Nine Item ARFID Screen, NIAS).^2-6 However, another study suggests providers have a poor ability to differentiate problematic eating behaviors from what may be normal or adaptive.⁴ Recently, Yin et al demonstrated that a component of food literacy, “Planning and Management,” negatively predicted the likelihood of developing ARFID, meaning those with less ability to plan their meals had a higher likelihood of exhibiting restrictive eating behaviors.⁶

Figure 1.

Diagnostic criteria, treatments, and interventions for avoidant restrictive food intake disorder.

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Although not the focus of this review, it is worthwhile to distinguish ARFID from other eating disorders. For most eating disorders, dietary modification occurs in response to concern about body weight/shape; in ARFID, however, restriction is driven by a lack of interest in eating, aversion to the sensory characteristics of food, or fear of the aversive consequences of food.⁷ A recent article found that, although rates of ARFID may be low in patients with ulcerative colitis who are in remission (11%), a higher percentage (30%) screened positive for symptoms of other eating disorders characterized by weight and shape concerns.⁷ This is not atypical in clinical practice; patients with IBD frequently describe unintentional weight loss during periods of active disease due to reduced oral intake, poor dietary quality, and/or impaired absorption of nutrients with a return to baseline (or higher than baseline) weight during periods of remission.⁸ Unfortunately, societal response to unintentional weight gain or loss can perpetuate concerns about body weight/shape; patients with IBD commonly report friends or family members may comment on “how good they look” during these periods of unintentional weight loss and express dissatisfaction when they regain lost weight. Although the original weight loss and gain were outside of the patient’s control, dietary restriction to return to a lower weight as experienced during active disease is common, even if this represents a malnourished nutritional state. While we agree this is a topic of interest for patients and providers who treat IBD, the focus of this review is to describe the neurological processes involved in developing fear around eating due to the aversive consequences of eating.

The discourse around ARFID unfortunately lacks the context in which these eating behaviors develop. For this, it is important to come back to a neuroscientific perspective on threat detection and response in humans, which is primarily driven by the structure known as the amygdala. Fully intact at birth, the amygdala is essential for human survival; the human infant must detect potential threats in his/her environment. It is not until later in childhood that the prefrontal cortex begins to develop, which provides the brain with reasoning/logic tactics to help the amygdala properly identify sources of threat and self-regulate emotions. It is important to understand the amygdala to be entirely driven by experience and, therefore, not highly responsive to rational, logical thought processes when working in an environment it has deemed to be threatening.^9,10 This means the accumulation of negative experiences related to food/eating will enhance the sense of threat, whereas an accumulation of neutral or positive eating experiences will decrease the sense of threat.

When working toward food reintroduction with patients, it is essential we as providers understand how the brain processes threats with food and eating. The process of post-ingestive learning is well documented in animal models, where the gut-brain axis plays a pivotal role in driving appetitive versus aversive behaviors to food and eating.^11-13 A recent study in mice showed that mice tend to associate novel, but not familiar, flavors with delayed gastric distress and the level of distress is associated with the tendency to avoid or approach that food in the future.¹⁴ This suggests, at the basic level, that treatment of limited diets cannot and should not prioritize dietary liberalization before establishing safety and security in the food/eating process first. The introduction of novel flavors without appropriate symptom stabilization increases the likelihood of enhancing fear learning around food in the brain.

Except in the case of utilizing dietary therapy to try to achieve remission, we would not encourage work aimed specifically at increasing dietary flexibility while the patient is experiencing a high level of disease or symptom activity. It is important in the early stages of treatment to understand or rule out any physiologic factors that may be contributing to postprandial symptoms, including inflammatory processes, visceral hypersensitivity, or mechanical obstructions. A patient does not need to be entirely symptom-free to do dietary work; however, patients should express some degree of confidence they can manage their symptoms before engaging in this process. It is typically helpful to frame expectations with the patient their symptoms are likely to increase at some point in the process of dietary expansion; having a conversation with the patient about which symptoms they are most concerned about managing may be helpful in prescribing medications that increase the patient’s confidence to withstand symptoms should they appear (eg, additional anti-nausea medication, incorporating a neuromodulator to help with pain, etc.). If available, collaborating with a GI psychologist may be useful for addressing visceral hypersensitivity via gut-directed hypnotherapy or decreasing symptom-specific anxiety.

Based on our clinical experience, patients who have had more severe reactions to food or who have accumulated a higher quantity of food-based reactions are more likely to develop fear around food/eating which may impair FRQoL and lead to more avoidant eating behaviors. When a patient has experienced severe postprandial symptoms, the brain can start to develop a sense of mistrust for either its own body or the food itself and can reinforce food to be the source of danger. Future food exposures activate a hypervigilant nervous system, which can drive physiologic responses to food that mimic food allergy or food sensitivity, including hives, tachycardia, shortness of breath, and gastrointestinal distress. This cycle serves to confirm the patient’s fear of food/eating.

When sitting in the room with a patient who has developed a severe fear of eating, it is most important that the provider uses a compassionate, empathic, and curious approach to understand how and why the patient came to follow a highly restricted diet. It will at some point in the conversation become valuable to provide education on the diversity of factors that can cause postprandial symptoms besides specific nutrient properties themselves (Table 1). From here, the patient and provider work collaboratively together to develop an exposure hierarchy to begin establishing safety and security around food and eating. We should keep in mind the relationship between perceived dietary flexibility and the likelihood of exhibiting restrictive eating behaviors. Education may comprise an important aspect of the patient’s treatment plan to understand how to flexibly navigate dietary restrictions within their boundaries of safe/trusted foods. There are patients who can put together a comprehensive diet plan despite navigating complex restrictions and this may reflect a higher level of food literacy and/or psychological flexibility. When progressing to the creation of an exposure hierarchy, we then want to help patients understand the flexibility they have in creating the amount of risk to which they are willing to be exposed. During the exposure process, we recommend progressing no more than one area of risk at a time to ensure a patient can build confidence while still progressing outside of their comfort zone (Figures 2-3, and a case example in Table 2). Of note, exposures do not always involve introducing a new food item. Instead, exposures can involve consuming trusted foods (comfort factor) at a different time of day (risk), in a different consistency (risk), or in a different volume than previously consumed (risk). It would not be appropriate to add a new food item at a time of day the patient does not normally eat, as the person could feel symptomatic or uncomfortable by eating at this new time regardless of the foods consumed and we do not want the brain to associate these symptoms with the food itself. It is acceptable for exposure work to move slowly as long as these 2 factors remain true: The brain must repeatedly be encouraged to be uncomfortable AND it requires an accumulation of successes. If these 2 tasks can be accomplished, the magnitude of each progressive exposure is not relevant for producing long-term success.

Figure 2.

Building blocks of recovery.

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Figure 3.

Exposure hierarchy. Each factor that follows will have a high- and low-risk option that is individual to the patient. It is important to change the risk associated with just one factor at a time to increase the likelihood of successful exposure: how far they have to travel; who they are eating with; time of day; volume of meal; novel or familiar food; whether they drove themselves or rode with someone.

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The gastroenterologist plays a key role in cultivating a treatment team that effectively addresses concerns about fear of food/eating. In the most severe cases, a patient will benefit from collaborative treatment with a psychologist and dietitian who have specialized training in digestive disease. Currently, access to GI- and IBD-focused dietitians and psychologists is mostly limited to patients who receive their care at large academic medical centers, and to those who can afford the out-of-pocket cost to consult with these specialists.¹⁵ Advocacy efforts targeted at improving nutrition and mental health care equity and access are needed to help close this care gap.

The diagnosis of ARFID can lend to the assumption that the patient’s avoidance/restriction of food is unnecessary or exaggerated. We propose it is important to screen for a history of severe or persistent postprandial symptoms and the severity of a patient’s symptom anxiety, which may drive them to avoid potential symptom triggers. When these have been present, we can generously come alongside a patient to help them understand the processes that can unfold in their brain when presented with food in the future and guide them toward treatments that may be able to help.

Conflict of Interest

M.S. is a consultant for Ayble Health. K.I. is a consultant for Takeda Pharmaceuticals (relationship has ended). K.I. holds the position of Associate Editor of Diet & Nutrition Crohn’s & Colitis 360 and has been recused from reviewing or making decisions for the manuscript.

Data Availability

No new data was created or analyzed.

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