Celiac Disease and Eating Disorders: Exploring the Complex Intersection
By Brooke Farrington, MSW, LCSW, CEDS-S
The relationship between eating disorders and celiac disease (CeD) is a complicated one. Symptoms can be similar while the treatment is vastly different. Eating disorders are serious physical and mental disorders that are not often visible to the eye. Here lies the first intersection between eating disorders and CeD. They are both serious and wreak havoc on the physical, social, and psychological well being of the individual if left untreated, while being challenging to detect.
Celiac Disease and Eating Disorders
Dieting is commonplace in our culture and medical circles. The concept of “healthy” eating has been hijacked by diet culture, taking on so many meanings it can be truly impossible to define. As an expert in eating disorders and body image, I propose that “healthy” eating is when all foods fit, there is flexible structure to eating, and the body is trusted to inform our decision not just how much to eat but what foods are chosen.
The number one risk factor for the development of an eating disorder is dieting. According to the Merriam-Webster dictionary, to diet is “to cause to eat and drink sparingly or according to prescribed rules”.(4) When we consider the strict gluten-free diet necessary for those diagnosed with CeD, it is no wonder that individuals with CeD are at least twice as likely as the general population to also develop an eating disorder.1 The diet that is required to heal and protect can also be a breeding ground for disordered eating.
The Gluten-Free Diet and Mental Health
The development of chronic illness is often connected with increased mental health concerns, most commonly depression and anxiety. An article in the British Journal of Health Psychology recently stated that “the gluten-free diet can lead to, or exacerbate underlying tendencies for anxiety, depression, and impaired quality of life.”(2) On top of the influence on the individual’s relationship with food and their body, social situations are also greatly impacted. The gluten-free diet can impede on the freedom to engage in social situations without having to proactively plan for what safe options might be available.
As a parent of a child with CeD, I have witnessed firsthand the emotional ramifications associated with the perceived loss of freedom around food as well as the experience of living in a body with CeD. In the prevention and treatment of eating disorders, label reading is often discouraged due to the obsessiveness and eating disorder behaviors it can perpetuate. Instead, teaching intuitive eating and trusting the wisdom of the body is the goal.
As an eating disorder specialist all too familiar with the risks of behaviors such as label reading, it has been a significant transition to witness and support my daughter in her need to purposefully check every label before choosing foods. While I remain vigilant in other prevention measures and concerns, I am also incredibly proud of my daughter’s conviction to mindful self-care. This essential dichotomy is one of many that leads to the increased risk of the coexistence of these disorders.
Food Anxiety
While conscious intuitive eating is still possible in those with CeD who are attuned with their bodies, labels must be read, as gluten is everywhere! Just the other day I was baffled by an organic broccoli steamer bag when looking for the microwave instructions. To my surprise, “MAY CONTAIN TRACES OF MILK, WHEAT, AND SOY” caught my eye. I never dreamed I would not be offering frozen broccoli based on the risk of it containing gluten. This can lead to extreme anxiety and dare I say rational paranoia. In our home, while we are re-learning how to maintain an intuitive and peaceful relationship with food, there will forever be a need for vigilance that, left unexamined, could lead to disordered eating.
Celiac and Disordered Eating
Disordered eating is a continuum of eating behaviors and beliefs that range from having minor to grave impacts on someone’s life.(5) The development of disordered eating is put in motion by what I call the “perfect recipe,” a recipe that is unique to each individual. Genetics, environment, temperament, life experiences, trauma, and personality are some of many ingredients of their own unique measurement that can create this life-altering dish.
In her book Meaning Full, Alli Spotts-De Lazzer says that for someone with significant disordered eating, “choices about food become ‘I have to’ or ‘I must.”(5) All the while, someone with CeD MUST follow a strict gluten-free diet to protect themselves from severe medical implications. There are truly unsafe foods and the vigilance to maintain safety can create anxiety and obsessive thinking around food. This can be quite the rabbit trail for someone with a predisposition for obsessiveness.
While there is limited research looking at the correlation between CeD and binge eating disorder, those with CeD may find themselves desiring or obsessing about gluten-containing foods in their gluten-free journey.(6) This represents the very natural restrict/binge cycle, a biological and psychological process. It is common for any restrictive eating to lead to an increased focus on food, particularly the food restricted.
Clinical Eating Disorders
The presentation of disordered eating and eating disorders can take on many faces, faces that can evolve over time. For the sake of this discussion, I will briefly explore restrictive patterns and ideations that are common across many eating disorders and represent the bidirectional relationship between CeD and restrictive eating.
First of all, symptoms can be similar including rigid rules around eating, weight loss, malnutrition, GI distress, lethargy, pain and discomfort associated with eating, among other symptoms.(1) These bodily experiences can lead to increased restriction. Restriction leads to increased anxiety and obsessiveness, and even minor restriction can set this vicious cycle in motion. Eating disorders can unknowingly “treat” CeD through elimination of gluten-containing foods, therefore reinforcing disordered eating behaviors that are providing true relief of CeD symptoms. Finally, each illness can mask the other, leading to delay in diagnosis.
Avoidant restrictive food intake disorder (ARFID) is characterized by restricted eating based on the avoidance of particular qualities of food, lack of interest in eating, or fear of the potential aversive results of eating. It is not uncommon for the list of safe foods to become less and less as the disorder progresses. Recent studies have found that individuals with CeD meet criteria for ARFID at a much higher rate than the general population.(3) Orthorexia nervosa is characterized by an obsession with eating only “pure” or “clean” foods in the name of health, often becoming very ritualized and increasingly rigid and restrictive. Similar to ARFID, there is evidence that symptoms of orthorexia are common in adults with CeD.(6)
Signs and Symptoms of Disordered Eating (5,6)
•Anxiety around food (the level of anxiety associated with food, if the anxiety has expanded beyond gluten-containing foods, and the impacts on the biopsychosocial status should be further assessed in someone with CeD)
• Dieting, skipping meals, limiting types or quantities of food
• Weight fluctuations
• Rigidity or rituals associated with eating and/or physical activity
• Guilt and shame associated with eating, activity, and/or body
• Preoccupation/obsessive thoughts of food, weight, body image
• Feeling out of control with eating
• Using compensatory strategies to “make up for” what is eaten
• Increasing fear of the risks associated with eating, even when risk is minimal or not present
• Eating the same foods with resistance towards eating more variety
• Eating patterns begin to impact other areas of life including relationships
Many warning signs are common and even necessary for someone with CeD. That is why it is essential for anyone who is concerned they may be developing an eating disorder to obtain a specialized assessment. This is key to take a closer look into the patterns and potential effects on functioning and quality of life.
Future Implications
Prevention first. I would argue it is essential for someone needing to follow a strict gluten-free diet to find as many alternatives as possible to foods that they enjoyed prior to diagnosis and to continue to try (or be exposed to as a child) various new foods. And yes, this includes the foods that many often deem as “unhealthy.” ALL types of foods have a place in healthy living.
If you notice any of the aforementioned signs, I urge you to seek help from a clinical team that specializes in eating disorders ASAP. Accurate assessment and diagnosis of disordered eating requires specialized training. These are complex disorders that can require a multidisciplinary team of specialists to treat effectively. And they can be treated. While we know that the sooner warning signs are identified and addressed, the less likelihood for a severe eating disorder to develop, it’s never too late to get help.
There is hope! Full recovery is possible. People with eating disorders can become fully recovered and live a life of peace and joy with food.
Further Resources:
Visit allianceforeatingdisorders.com to find a clinician who specializes in eating disorders in your area.
Visit nationalceliac.org/webinars to view Unbalanced Eating: the Spectrum of Eating Disorders with Gluten-Related Conditions webinar.
References:
1. Grave, R. D. (2021, July). The Coexistence of Eating Disorders and Celiac Disease: An Interacting and Problematic Relationship. Psychology Today. Retrieved from https://www.psychologytoday.com/us/blog/eating-disorders-the-facts/202107/the-coexistence-eating-disorders-and-celiac-disease
2. Satherley, R. M., Lerigo, F., Higgs, S., & Howard, R. (2022). An interpretative phenomenological analysis of the development and maintenance of gluten-related distress and unhelpful eating and lifestyle patterns in coeliac disease. British Journal of Health Psychology, 27(3), 1026–1042. https://doi.org/10.1111/bjhp.12588
3. Bennett, A., Bery, A., Esposito, P., Zickgraf, H., & Adams, D. W. (2022). Avoidant/restrictive food intake disorder characteristics and prevalence in adult celiac disease patients. Gastro Hep Advances, 1(3), 321–327. https://doi.org/10.1016/j.gastha.2022.01.002
4. Merriam-Webster dictionary. (n.d.). https://www.merriam-webster.com/dictionary/diet.
5. Spotts-De Lazzer, A. (2021). Meaning full: 23 life-changing stories of conquering dieting, weight, & body image issues. Unsolicited Press.
6. Kujawowicz, K., Mironczuk-Chodakowska, I., Witkowska, A. M. Dietary Behavior and Risk of Orthorexia in Women with Celiac Disease. Nutrients 2022, 13, 904. https://doi.org/10.3390/nu14040904
