Psychological Considerations for Food Intolerances

INTRODUCTION

Food intolerances are a common discussion point in managing chronic digestive diseases. Most patients think certain foods can trigger their disease symptoms, which a diagnostic workup may or may not confirm. At the center of some disease management approaches are exclusionary diets, whether gluten for celiac disease (CeD), the six-food elimination diet (SFED) for eosinophilic esophagitis (EoE), or the low-fermentable oligosaccharides, disaccharides, monosaccharides and polyols (FODMAP) diet for irritable bowel syndrome. Academically, food elimination often yields excellent clinical results in the resolution of symptoms across diagnoses. However, the clinical implementation of dietary treatment is much more complicated. Moreover, real-world management of food intolerance lacks the controlled research setting and is often missing multidisciplinary supports, such as dietitians, usually present in a dietary study.

The psychological and social impacts of eliminating foods, especially those common in the Western diet, are becoming more apparent in pediatric and adult cohorts. Constructs such as food-related quality of life (FRQoL), which includes anxieties around navigating eating outside the home, finding acceptable foods to eat, and the impact on interpersonal relationships and disordered eating are garnering more attention in gastroenterology (GI) practice. A delicate balance of patient expectations and beliefs about the role of food in their disease/symptoms, translating research knowledge to the examination room, dietary treatment planning, and long-term management of secondary effects (eg, poorer FRQoL and Health-Related Quality of Life (HRQoL), mental health issues, disordered eating) is needed. Herein, we focus on GI conditions in which dietary exclusion is central to their management: CeD, non-celiac gluten sensitivity (NCGS), and EoE.

Diseases Characterized by Food Intolerance(s)

Celiac Disease

CeD is an autoimmune condition in which ingestion of gliadin protein in food causes intestinal damage and systemic inflammation.¹ Approximately 1 in 133 individuals has CeD.² It has a genetic component, and first-degree relatives are encouraged to be screened due to the increased risk for CeD.³ Symptoms are heterogeneous and not necessarily diagnostic. Until recent years, it was previously thought that the primary CeD symptoms were poor growth, malabsorption, and gastrointestinal symptoms such as diarrhea, constipation, gas, bloating, and nausea/vomiting.^4,5

However, with the increased awareness, population-based screening research, and diagnostic technology, it is now increasingly recognized that individuals diagnosed with CeD have extraintestinal manifestations in addition to classic gastrointestinal symptoms. These can include joint pain, headaches and other neurologic symptoms, and emotional and behavioral symptoms.⁶ In addition, there is an elevated risk for mental health disorders among individuals with CeD across the lifespan, including anxiety and depressive disorders as well as attention-deficit/hyperactivity disorder (ADHD).^7–10

The only current treatment for CeD is a strict gluten-free diet (GFD).¹ The GFD includes eliminating wheat, barley, and rye but also requires taking care to avoid cross-contact of even trace amounts of gluten. Thus, individuals with CeD must ask questions and check packaged products regarding the food preparation or manufacturing processes. There are also concerns about oats, which may have potential cross-contact with wheat in the growing and grinding stages,¹¹ and is the food most often contaminated with wheat.^12,13 The GFD becomes complicated by labeling laws in the United States, which omit some sources of gluten. For instance, labeling of major allergens includes wheat, but not necessarily barley or rye. In 2013, the Food and Drug Administration (FDA) established guidelines for voluntary labeling food as “gluten-free.”¹⁴ However, labeling food as gluten-free is not required and therefore not consistent. Some naturally gluten-free products do not necessarily include the label on the package (eg, some brands of tortilla chips). Nonfood products may also contain gluten and are not regulated by the FDA or other governing bodies. Many individuals are advised to contact manufacturers of products to verify sources of medications and cosmetic ingredients, such as vitamin E, which typically comes from wheat germ.¹⁵

Non-Celiac Gluten Sensitivity

NCGS is recently recognized as a condition distinct from CeD.¹⁶ It includes a heterogeneous group of individuals who experience reactivity to gluten, even in the absence of traditional diagnostic markers of CeD. Diagnosing NCGS requires thorough knowledge in the differences and overlap of clinical presentation among gluten-related disorders and other GI disorders. Unfortunately, NCGS is not well understood, leading to distress, frustration, and stigmatization among individuals living with this condition. Recent evidence suggest NCGS may have an autoimmune basis.¹⁶ NCGS remains an area of scientific debate leaving patients and broader society without a clear understanding of other forms of gluten sensitivity beyond CeD. NCGS also tends to have extraintestinal manifestations such as bone or joint pain, muscle cramps, and chronic fatigue, all contributing to the risk for decreased quality of life (QoL) and increased psychiatric complications.¹⁷ Prolonged diagnosis or misdiagnosis of the correct condition and lack of clarity surrounding disease process can lead to reduced quality of life of NCGS patients.¹⁸

Despite a debated and unknown cause, the treatment of NCGS is also dietary, such as the GFD and the low-FODMAP diet.¹⁶ As such, the complexities of health literacy regarding gluten in foods and other products apply to NCGS as well. At times, individuals with NCGS may be dismissed by family, friends, employers, and health-care providers. They may not be granted the same care in their food preparation or accommodations as others with a clearer diagnosis such as CeD, EoE, or food allergy. Given the uncertainty surrounding NCGS, not much is known about the impact these factors play in its management.

Eosinophilic Esophagitis

EoE is an immune-mediated non-IgE allergic reaction to exposure to certain foods, and sometimes nonfood environmental allergens.¹⁹ The estimated incidence and prevalence rates of EoE are 5.1 cases/100,000 persons/y and 19.1 cases/100,000 persons, respectively, with a bimodal peak of incidence that includes children and adults in their 30s; it is more common in White men. In patients undergoing esophagogastroduodenoscopy (EGD), 2% to 6.5% are diagnosed with EoE,¹⁹ and when difficulty swallowing is the reason for the EGD, EoE rates increase to 12% to 22%.

In EoE, the esophagus experiences an infiltration of eosinophils, which results in edema, longitudinal furrows, the development of esophageal rings, and narrowing or forming of strictures. Symptoms of EoE in adults include dysphagia (difficulty swallowing), chest pain, and heartburn. Patients report a sensation of food moving up and down their esophagus and of food getting stuck, necessitating regurgitation to relieve the intense discomfort. In children, symptoms tend to be nausea and vomiting, and failure to thrive. People with EoE frequently have comorbid asthma, eczema, rhinitis, or food allergies.

Treatments for EoE are limited to elimination diets and swallowed steroids. However, novel therapeutics show promise to treat EoE at the immunologic level versus present strategies.^20,21 Elimination diets for EoE include the SFED, which requires a person to remove dairy, wheat, soy, eggs, nuts/peanuts, and fish/shellfish from their diet. The SFED is an incredibly challenging diet to follow due to the regularity in which most of these food types seem in the Western diet for both pediatric²² and adult patient populations²³ and the aforementioned challenges with accurate food labeling in the United States.

More recently, abbreviated SFED approaches are being used to reduce the burden on patients of the full SFED approach.^23,24 These include Four-Food²⁵ and Two-Food trials, or a step-up approach whereby foods are added should the initial elimination trials (eg, dairy, wheat) neither relieve symptoms nor improve physiology. The most common food trigger seems to be dairy, followed by wheat and soy. Most patients do not have all 6 foods as triggers for EoE, but some may, whereas others may have additional triggers (eg, sesame, other grains). Logically, EoE patients with more identified food triggers are at a greater risk for negative impacts on mental health²⁶ and HRQoL.²⁷ These can include increased anxiety related to eating,²⁸ reduced FRQoL, and stigmatization.^29,30

Qualitative analysis of online discussion forums used by people with EoE found that patients were generally positive about dietary therapy while universally acknowledging how difficult it can be to follow. These results were in the context of deciding between identifying the actual triggers of their EoE versus taking corticosteroids indefinitely.³¹ In terms of cost–benefit analysis, patients thought the relief of symptoms was worth the challenges of EoE elimination diets.

Hypervigilance Regarding Food, Eating, and Symptoms

With conditions requiring special diets, it is necessary to adopt vigilance surrounding everything one eats, all day, every day. Vigilance is an adaptive and protective skill to check foods before eating them, determining whether they potentially contain any ingredients that are harmful to the individual. The ideal amount of vigilance can be identified through Yerkes and Dodson’s (1908) Inverted U Theory of Arousal,³² in which an optimal performance is achieved through a balance between low and high “pressure.” Too little pressure can result in complacency and exposure to offending foods, and too much pressure can lead to poorer HRQoL and high levels of anxiety (Fig. 1).

Fig. 1.

Too little pressure can result in complacency and exposure to offending foods, and too much pressure can lead to poorer HRQoL and high levels of anxiety.

Hypervigilance occurs when pressure is too high and is characterized by a high attentional bias toward potential threats, which can precipitate or maintain a forward feedback loop in which anxiety is increased. When a person is in a hypervigilant state, the limbic system is engaged, which, on its own, does not have logical thought. Instead, the person reacts based on stimuli, or sensory information before the prefrontal cortex (PFC; ie, the thinking brain) is engaged. As a result, there may be activation of the threat response in the 1/1000th of a second it takes for that message from the limbic system to arrive at the PFC, thereby influencing the interpretation of the original stimuli and symptom experience. For example, in EoE, hypervigilance to esophageal sensations is a greater predictor of increased dysphagia symptoms and poorer HRQoL than physiologic testing.³³ Patients with a history of traumatic experiences (eg, abuse, combat, crime victim) may be at particular risk for this threat response due to the impacts trauma has on the nervous system and response to threat. Trauma may have existed before a medical diagnosis or may evolve from disease experiences.^34,35 Hypervigilance to symptoms can translate to hypervigilance regarding food and eating,³⁶ causing even typical sensations from eating and digestion to be amplified and difficult to ignore.³³ A person with hypervigilance may check in regularly with their body, taking pauses during meals to assess how their digestive system is responding to the ingested food. Any sign of “trouble” may be met with the person abruptly stopping eating and assumptions the food is now permanently off limits without concrete evidence that a consistent, direct link to digestive symptoms exists.

By nature, the process of identifying allergens or trigger foods and actively avoiding them requires vigilance.^28,31,36 The emphasis on consistent attention to avoiding specific foods serves as a potential foundation for those at risk for hypervigilance. Individuals are told by their health-care team that there can be short-term and long-term health risks from food exposure³⁷ or continued inflammation.¹⁹ In many cases, even trace amounts of these ingredients may sicken a person. They may not experience symptoms at times but could still incur physiologic damage (eg, in asymptomatic CeD or EoE). In some cases, such as with gluten or other foods not on the major allergen list mandated under food labeling laws, individuals must be suspicious of any packaged food or food prepared outside of their home. There is often no definitive answer as to whether a product is safe unless explicitly labeled (eg, gluten-free, a voluntary label in the United States).¹⁴ Even so, contamination is often a concern. Vigilance is not only limited to foods. Individuals are instructed to be cautious of medications, lip balms, makeup, toothpaste, and many other products, yet the quality of data informing recommendations may be insufficient.³⁸ In young children,²² art supplies and other materials must be scrutinized because some of the material could be ingested (eg, Play-Doh).³⁹

An aspect of vigilance in conditions with food intolerance is the concern about a potential reaction to the offending food. When there are doubts about the safety of a food ingested, individuals may use high attentional bias toward bodily functions and sensations, leading to anxiety and increased symptoms.^33,36 These doubts can confuse individuals and obscure an already murky process of recognizing potential signs of reactions, leading to functional pain and other symptoms. Furthermore, these doubts and symptoms can cause individuals to avoid foods or situations unnecessarily as a protective strategy, which eventually may reduce quality of life,³⁶ and/or increase symptoms of depression or other mental distress.

Impact of Elimination Diets on Mental Health and Disordered Eating Behaviors

The mental health impact of food intolerance and associated dietary strategies can be pervasive and intertwined (Fig. 2). The initial adjustment to a chronic illness diagnosis and its dietary treatment can elicit feelings of grief and loss, which must be navigated by individuals, caregivers, and often the entire household. Changes to daily life, ranging from planning ingredients in recipes to navigating social activities, require significant adaptive coping and executive functioning skills. As mentioned, worrying about eating as a trigger of symptoms is common and can become severe, as in the case of Avoidant/Restrictive Food Intake Disorder (ARFID; Helen Burton Murray and Samantha Calabrese’s article, “Identification and Management of Eating Disorders (including ARFID) in GI Patient,” in this issue). People report losing enjoyment from eating, in part, due to stress related to planning activities around eating and anxiety about having symptoms in front of others or in public.²⁷ Embarrassment about having to advocate for dietary needs that may be heavily stigmatized, such as GFDs, which have become more popular among those without CeD, NCGS, or EoE, can lead to isolation, either self-inflicted or being intentionally or unintentially left out of social events or work functions.^8,28,29,40

Fig. 2.

Interrelated constructs when managing food intolerances.

Patients with food intolerances often must make quick decisions about whether to eat a particular food, especially in social situations or around others whom they do not know. These quick decisions can lead to regret in eating foods that make symptoms worse, with corresponding frustration about the degree of attention and focus they must pay to how food may affect their condition. Over time, a person may feel a loss of control surrounding what they can and cannot eat or feel that they do not have many options for dietary variety. In some patients, compensatory behaviors may arise, such as overly “clean” eating (ie, orthorexia), extreme emphasis on “safe” foods, or turning to dietary supplements to maintain nutritional status.

Celiac Disease

The symptoms and treatment of CeD can lay the groundwork for the development of disordered eating due to concerns about physical reactions to gluten and the nature of a strict GFD. Individuals may experience emotional distress and negative body image in response to weight gain that may occur once nutrient absorption improves, leading to anorexia nervosa or bulimia nervosa.⁴¹ Related, but distinct from body image concerns, fears of physical symptoms and other aversive experiences in CeD⁴² may lead to unnecessary additional restriction of the variety, quantity, or frequency of foods eaten, as in ARFID.⁴³ Alternatively, insecurities around reduced access to palatable gluten-free food options may lead to binge eating behaviors when safe or desirable foods become available.⁴¹ Disordered eating can have a major negative impact on achieving optimal physical health and overall quality of life in CeD.⁴⁰

Non-Celiac Gluten Sensitivity

The experiences of those with NCGS mirror those with CeD with the added burden of living with a somewhat controversial and poorly understood condition. Because of the lack of a definitive diagnosis, those with NCGS may feel even more stigmatized about the use of a GFD because “there’s nothing really wrong with them.” They may be more likely to be diagnosed with ARFID because their food restriction due to fear of GI symptoms may be deemed to be beyond what is “reasonable and expected” when compared with a person with a definitive disease such as CeD or EoE. The dearth of literature on NCGS and disordered eating makes it difficult to draw conclusions; however, clinicians should be aware of the added social and emotional complexities of NCGS when treating these individuals.

Eosinophilic Esophagitis

There is only a single study in pediatric patients with EoE on disordered eating, comprising 2 case studies, both of whom developed disordered eating behaviors to cope with their disease.⁴⁴ In adults, a small sample of EoE patients (N 5 53) as part of a more extensive study on ARFID found that 42.9% of participants met the diagnostic cutoff using the Nine Item ARFID scale (NIAS).⁴⁵ The authors caution interpreting this finding due to limitations in the NIAS in GI populations because half the variance in NIAS score was explained by fear of GI symptoms. Worry about unpleasant symptoms, such as food impactions (which are medical emergencies), and hyper-vigilance to esophageal sensations act as adaptive responses to a perceived threat. The limitations in the NIAS in GI populations, combined with the use of elimination diets as a primary treatment of EoE, makes understanding disordered eating in EoE quite complicated.

Stigma and Bullying

Limited research on stigma toward GI disease finds patients with EoE and CeD do report disease-related stigmatization,^29,30,46 and dietary treatment seems to be a contributing factor. The GFD has become highly popular in recent years, although most individuals choosing the GFD have done so by choice and not due to a medical condition. The popularity of the GFD by choice has led to more misinformation and stigma in the community for those requiring the GFD for medical reasons. However, the popularity of the GFD may have led to the availability of more GF foods, especially those offered by major food manufacturers, and have facilitated the more widely available GF options at restaurants.

Bullying is unfortunately common in children with food intolerances having to follow a strict diet. Similar to stigma, bullying makes the child feel different and excluded by peers. Others lack knowledge about the child’s health condition and its treatment such that children cannot necessarily go to any adult for help, adults may have judgments of parents and/or their children, and may harbor resentment in having to accommodate dietary restrictions. In a 2013 study of 251 children with food allergies and their parents, 31.5% of the children and 24.7% of the parents reported bullying or harassment specifically due to dietary restrictions, including threats with foods by classmates as a means of intimidation.⁴⁷ Similar proportions of children report bullying due to food allergy in additional studies^48,49 and children from racial minority groups may be more affected than White peers.⁵⁰ To date, no studies exist evaluating bullying specifically in children with CeD or EoE.

Psychological Interventions

Behavioral interventions adapted for chronic digestive diseases are available to reduce the psychological and social impacts of food intolerances and related treatments. These include cognitive behavioral therapy (CBT), acceptance and commitment therapy (ACT), and mindfulness-based stress reduction (MBSR).^51–54 Although research is limited in the application of these approaches to food intolerance, they are highly effective in reducing symptom-specific anxiety and hypervigilance, reducing disordered eating, and improving HRQoL across multiple GI conditions.

In CBT, patients are taught to identify counterproductive thinking about food intolerances and replace these thoughts with more adaptive responses to a chronic condition necessitating dietary changes (eg, “I will never figure out what I can and cannot eat” to “I know sometimes a food may disagree with my system but that does not mean I can never eat it again”). This thought reframing reduces catastrophizing (expecting the worst-case scenario) and introduces additional behavioral strategies to increase self-efficacy, which is often lost in catastrophic worry. Exposure therapies can also help patients who may have extreme food fears to reintroduce beyond their “safe food” list or reduce other avoidance behaviors that have become problematic.

In ACT and MBSR, which are theoretic extensions of CBT, patients are taught to focus more on the present moment versus predicting future events, engage in values-based activities, and defuse repetitive thinking or rumination about eating. In CBT, ACT, and MBSR, relaxation strategies (eg, diaphragmatic breathing, meditation) are combined with cognitive exercises to reduce autonomic nervous system arousal and corresponding hypervigilance. Clinicians working with pediatric or adult patients with food intolerances will benefit from partnering with a mental health practitioner skilled in GI behavioral therapies or, if unavailable, a practitioner with experience in chronic illness populations. The Rome Foundation Psychogastroenteorlogy Group has an online directory of GI behavioral health providers (https://romegipsych.org) for reference.

SUMMARY

Individuals with conditions requiring special diets may experience several psychosocial challenges due to the nature of their symptoms and the burden of treatment. Even with clear and effective treatments, psychological support is needed due to their inherently challenging and often stressful nature. Reactions to foods can invoke both physical and emotional distress, leading to vulnerability to developing comorbid psychological conditions (eg, anxiety, depression, and eating disorders). A special diet requires the affected individual (or caregivers) to remain constantly vigilant around food and other materials with which they make contact. In addition, significant social challenges can arise with food being a social activity in most cultures and settings. For these reasons, maintaining optimal adherence is difficult.

Psychosocial support can be an important resource to build effective coping strategies using frameworks such as CBT and ACT to address hypervigilance, anxiety, and disordered eating that may develop because of food intolerances. Psychological support also helps identify and address potential barriers and explore any ambivalence about adherence to a special diet. There has been a growing emphasis on psychological services as part of a multidisciplinary standard of care for conditions requiring special diets in recent years. Additional implementation and evaluation of these services will help advance efforts to develop and refine appropriate empirically supported interventions to optimize self-management and quality of life.

KEY POINTS.

• Digestive illness involving food intolerances bring unique challenges to clinical management due to their impacts on psychological and social functioning and reliance on elimination diets as primary treatment strategies.

• Both pediatric and adult patients with celiac disease, non-celiac gluten sensitivity, and eosinophilic esophagitis report increased anxiety-related and hypervigilance-related eating, social ramifications including stigma and isolation, and reduced quality of life directly related to food intolerances and dietary management.

• In some patients, hypervigilance regarding food and eating may become severe and lead to disordered eating behaviors including avoidant/restrictive food intake disorder and food phobia.

• Integrated approaches using properly trained registered dietitians and clinical psychologists should be a mainstay for patients requiring long-term elimination diet treatment to mitigate some of these negative impacts.

CLINICS CARE POINTS.

• When managing patients with food intolerances using dietary treatment, screen for baseline anxiety especially because it relates to food and its relationship to digestive symptoms.

• Discuss the potential psychological and social impacts that may occur with patients being prescribed or using self-directed dietary approaches and monitor at each follow-up.

• If possible, establish referral relationships with qualified registered dietitians and mental health clinicians with specific training in digestive disease and food intolerances in your area as resources for patients. Introduce these early in treatment to prevent poor outcomes.

• Learn nonstigmatizing language to discuss disordered eating to demonstrate to your patients that you understand the unique challenges of long-term dietary treatment.