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The relationship between eating disorders and celiac disease is strong. Celiac disease can cause eating disorders in a variety of ways.
In this post, we will talk about the prevalence of eating disorders with celiac disease, why there’s a higher risk, and what to do about it.
Before we talk about eating disorders with celiac disease, we need to first understand what eating disorders are. There are several eating disorders types each with its own criteria. Types of eating disorders include anorexia, bulimia, binge eating disorder, and avoidant/restrictive food intake disorder.
Eating disorders are conditions with definitions and characterizations that describe a strained relationship with food that is impacting someone’s everyday life. These disorders have clear criteria for diagnosis whereas disordered eating is used to describe eating behaviors that aren’t healthy and disrupt life but don’t fit any clinical eating disorder definitions.
Often with celiac disease, I see disordered eating as opposed to eating disorders because the diagnostic criteria for eating disorders have not yet caught up with the ways a medically restrictive diet impacts food behaviors, body image, and relationships. This does not lessen the significance nor severity of disordered eating showing up with celiac disease.
And often, disordered eating is a precursor for eating disorders. This is nothing to roll your eyes over.
We’ll dive deeper into the risks of celiac disease and eating disorder development below, but while we’re on the topic of defining eating disorders, let’s briefly discuss the relationship between celiac and anorexia and bulimia.
There are two types of anorexia nervosa, the binge/purge type and the restrict type. What’s key about anorexia nervosa is it is characterized by unhealthy body image disturbances, intense fear of gaining weight, with extreme measures taken to prevent it.
What is troubling is is anorexia nervosa is the deadliest form of eating disorders, and a 2021 meta analysis of eating disorder prevalence in celiacs found that people with celiac disease are at 2.35 times high risk of having anorexia nervosa than control groups.
Now, it’s not that celiac disease causes anorexia or other eating disorders like bulimia. However, as we’ll discuss below, the journey to diagnosis and required gluten-free lifestyle for celiac is likely what increases risk of eating disorder presence in celiac disease.
There is an increased risk for disordered eating and eating disorders with celiac disease. From the challenge to getting a diagnosis triggering disordered eating behaviors to the actual management of celiac influencing eating disorders. There’s a lot that goes into explaining the higher risk of disordered eating with celiac.
With risks of eating disorders in celiacs as high as 16% and disordered eating as high as 22%, it’s essential we understand the risks and address them. And the risks of both eating disorders and disordered eating may even be higher, taking into the fact that diagnostic criteria has not yet caught up to the ways eating disorders show up with medically restrictive diets.
In a 2017 study trying to explain the relationship between eating disorders and celiac disease they found that the fear of how eating gluten-free would impact their body image, and a binge-restrict cycle played into the development of disordered eating. More specifically, it was the distress in response to weight gain after diagnosis, overestimation of negative consequences of food, intolerance of uncertainty, and excessive fear around cross-contact with food that was reported to contributed greatly to disordered eating patterns.
Another study from earlier on in 2013 also described something similar. The idea is that it is how one manages celiac that factors into eating disorder development. Not the actual physiological condition or symptoms that increases the risk of eating disorders or disordered eating in celiacs.
Additionally, celiac disease is traumatic. And eating disorders and disordered eating are common trauma responses, thus increasing the prevalence. With celiacs trying to cope with grieving their life without celiac, feelings of loss of control, and more by distracting themselves with food.
There are as described by research (and as anecdotally observed in my own work with helping celiacs overcome disordered eating) some common themes in the risk of disordered eating and celiac.
Hypervigilance can increase the risk of eating disorders with celiac disease. In fact, in a lot of cases, hypervigilance can be a sign of disordered eating with celiac. But what is hypervigilance? At what point are you being too careful?
This is where it’s important to talk about the need to be vigilant but not hypervigilant. Vigilance with celiac disease is living your life and taking the right precautions. Hypervigilance with celiac disease is avoiding, acting out fear, and overall letting celiac hold you back.
Examples of vigilance include: screening restaurants for celiac safety before dining, reading food labels to look for gluten, and teaching loved ones how to cook and prevent cross-contact for you.
Examples of hypervigilance include: only eating at dedicated gluten-free restaurants, only buying certified gluten-free foods and distrusting all other food labels, not even trying to teach others how to cook for you, and completely shutting down when things don’t go according to plan. It can also look like being afraid of eating any food outside your home, being around other people who are eating gluten, and having a lack of balance in a gluten-free diet.
This hypervigilance has been researched to play a role in celiac disease. According to a 2018 study it has been identified as a key player in the development of disordered eating with celiac disease.
Diet culture can increase the risk of eating disorders with celiac disease. There are a lot of ways that diet culture does this but there are a few key ways. First, diet culture encourages the general public to make comments on body size and diet.
If someone’s body is responding to healing with celiac disease by gaining weight, this can throw people into the throes of weight stigma. This was documented in the 2017 study on disordered eating patterns with celiac disease. With the mental distress in response to weight gain fueling a strained relationship with food. Influencing them to begin restricting beyond the needs of a gluten-free diet and participating in the binge-restrict cycle.
Speaking of the binge restrict cycle, diet culture also feeds off of guilt and shame. These emotions overlap into celiac management, with celiac guilt and shame fueling the binge-restrict cycle and potentially worsening lingering symptoms like constant hunger with celiac disease or chronic fatigue.
And the harms and risks of eating disorders caused by diet culture in celiacs don’t stop there. I list 10+ more in my blog post “Diet Culture and Celiac”.
And if diet culture weren’t triggering enough, unaware providers can worsen disordered eating in celiac patients. From comments about weight, promoting 1200 calorie diets at diagnosis, perpetuating weight stigma around celiac disease by telling patients to lose weight to improve GI symptoms, and discrediting official celiac diagnoses based on patient body size, all of this can feed into eating disorders and disordered eating with celiac disease.
This is why it’s essential providers are screening celiac patients for eating disorders and disordered eating. And if needed, refer patients to providers who can help repair celiac relationships with food and body image.
Eating disorders and disordered eating with celiac disease can look different depending on the person. Below is a list of some common ways both show up with celiac disease:
These are just some of the many ways disordered eating and eating disorders can show up with celiac disease. If one or more of these statements resonated with you, I want you to know, there is a life for you where food and body image doesn’t take up so much space. It’s possible to feel better.
There’s a high prevalence of eating disorders and disordered eating with celiac disease, and understandably so. From hypervigilance running rampant in the echo chambers of social media and online forums, diet culture weaving its way into every aspect of celiac life, to celiac disease literally changing how we interact with food; it’s no wonder people with celiac disease have a rough relationship with food and their bodies. So what can we do about it?
Healthcare providers can help by unpacking their weight bias around celiac diagnosing and care. Additionally, they can start to screen celiac patients for eating disorders and disordered eating to make sure celiacs are getting the proper care.
Additionally, celiacs can learn to practice intuitive eating with celiac disease and promote these practices socially. This is a clinically proven way to heal eating disorders and disordered eating when done correctly. However, please note depending on your stage of disordered eating, you might have a few steps to take before pursuing it and working with a specialized provider can get you there.
Lastly, if you’re struggling with an eating disorder or disordered eating, you can get help from a specialist! As a dietitian specializing in celiac disease and disordered eating, below are some options for you to get help: