Based on data from the National Health and Nutrition Examination Survey, celiac disease affects an estimated 0.7% of the population in the United States.1 Findings have shown an increasing prevalence of the disease in both children and adults, which may be partly due to improvements in screening and diagnostic efforts. Studies have also demonstrated various extragastric conditions in this patient population, including dermatologic and neurologic disorders.2
Recognized Mental Health Disorders in Patients With Celiac Disease
Additionally, researchers have found elevated rates of comorbid mental health disorders among individuals with celiac disease compared with control individuals. In a systematic review and meta-analysis published in 2020 in Nutrients, Clappison et al examined 37 articles and reported significant increases in the risk of anxiety (odds ratio [OR], 6.03; 95% CI, 2.22-16.35; P <.0001), depression (OR, 2.17; 95% CI, 2.17-11.15; P <.0001), eating disorders (OR, 1.62; 95% CI, 1.37-1.91; P <.00001), autistic spectrum disorder (OR, 1.53; 95% CI, 1.24-1.88; P <.0001), and attention deficit/hyperactivity disorder (ADHD; OR, 1.39; 95% CI, 1.18-1.63; P <.0001).2
These results are consistent with earlier findings3 as well as those of more recent research. In a 2020 cross-sectional study of 73 children with celiac disease, the authors observed the presence of at least 1 mental health disorder in 34% of participants, including higher rates of anxiety disorders (16%; P <.001) and ADHD (16%, P =0.01) compared with the general population.4
A 2021 population-based cohort study linked childhood celiac disease with a 19% increase in the risk for any psychiatric disorder (95% CI, 1.14–1.23) and an elevated risk for mood and anxiety disorders, autism spectrum disorder, ADHD, and eating disorders.5 The results further showed that the increased risk for psychiatric disorders continued into adulthood (hazard ratio, 1.11; 95% CI, 1.04-1.17).
Managing the Effects of Mental Health Disorders in Celiac Disease
Although these common mental health conditions can occur in this patient group independently of celiac disease, they can interact with the disease in numerous ways, explained the lead author of the 2021 study, Benjamin Lebwohl, MD, MS, the Louis and Gloria Flanzer Scholar at Columbia University Irving Medical Center and director of clinical research at the Celiac Disease Center at Columbia.
“For example, people who are prone to anxiety may have more difficulty navigating the gluten-free diet when eating in restaurants, due to fear of gluten exposure or the difficult social interactions when communicating to peers or wait staff regarding the gluten-free status of an item,” he said. “Likewise, ongoing gastrointestinal symptoms due to gluten exposure or other causes can exacerbate depression and anxiety.”
Dr Lebwohl emphasized the importance of evaluation by an expert dietitian who can assess patient efforts to avoid gluten while discouraging excessive precautions that may result in the unnecessary exclusion of certain foods. He also notes that the burden of adhering to the gluten-free diet can be substantial in some cases and recommends that clinicians regularly assess patients’ quality of life.
Among the remaining gaps in this area, there is a need to expand access to the specialized treatment required for these patients, Dr Lebwohl explained. “Right now, the personalization of care for people with celiac disease is an art, dependent on experienced dietitians who incorporate the ‘big picture’ of the patient’s dietary patterns, social circumstances, symptoms, and objective data such as celiac antibody levels and biopsy results,” Dr Lebwohl stated. “We need to export this rare expertise and can do so via telemedicine, training, and the development of written and multimedia materials that will bring guidance to a wider audience.”
To learn more about the connection between celiac disease and psychiatric comorbidity, we interviewed Shayna Coburn, PhD, psychologist in the division of gastroenterology, hepatology, and nutrition at Children’s National Hospital and assistant professor of psychiatry and behavioral sciences at the George Washington University School of Medicine and Health Sciences in Washington, DC.
What are the most common mental health conditions observed in patients with celiac disease, and what are some of the proposed mechanisms involved?
Dr Coburn: Patients with celiac disease are at increased risk for general mental health conditions. In particular, the most common problems are anxiety, depression, and ADHD. There has also been more attention recently on disordered eating, which can include body image concerns or more general anxiety-based avoidance of eating, such as avoidant-restrictive food intake disorder.6,4
Although we do not understand the underlying nature of these associations, there are a few major hypothesized mechanisms. First, prior to beginning the gluten-free diet, chronic systemic inflammation and nutrient malabsorption that occurs due to gluten ingestion in the body may cause dysregulation of the gut-brain axis. Second, physical symptoms of celiac disease can be painful, distracting, and embarrassing, which can be another cause of emotional distress for an individual. In addition, after the diagnosis of celiac disease, the process of adjustment can be highly stressful.
Grief and sadness about having a chronic condition as well as stress and anxiety resulting from the transition to the gluten-free diet is normative. This is true across the lifespan. Family members, especially caregivers of individuals with celiac disease, experience significant burden as well.7 So, there are both biological and psychosocial risks involved with celiac disease, both before and after diagnosis.
What are the relevant recommendations for clinicians regarding screening and treatment of mental health comorbidities in these patients?
Dr Coburn: Given the data showing how common mental health disorders and emotional distress are for individuals with celiac disease, it is important for clinicians to be aware of these risks. Ideally, we recommend a multidisciplinary team approach to evaluating the overall well-being of people with celiac disease.8 This is still very rare, but it has been achieved in some institutions such as our Celiac Disease Clinic.
Another option that is more commonly employed is using a validated general mental health screener like the Symptom Checklist (SCL), the Patient Health Questionnaire-SADS (PHQ-SADS), or the Child Behavior Checklist (CBCL), and providing patients with a list of referrals if they report elevated symptoms.
Realistically, many clinicians may not have access or administrative help to administer questionnaires. Simply asking patients how they are coping with their symptoms, the diagnosis, and the gluten-free diet is a perfect starting point. Don’t be afraid of what the patient may tell you. Listening and showing your interest in their well-being can be therapeutic in its own right.
For those who need formal mental health treatment, it is challenging to identify the perfect referral process for every patient, clinician, and institution. That said, clinicians can provide brief guidance to patients on contacting their health insurance plan to find in-network therapists. Even better, clinicians can identify a few local therapists with whom they can collaborate on a regular basis. There are some good search engines such as PsychologyToday.com for therapists in general, and therapists with specific expertise in digestive conditions can be found here.
When should clinicians refer patients to mental health care specialists, and how can respective parties develop rapport?
Dr Coburn: Discussing the benefits of mental health support early and often is key to de-stigmatizing mental health treatment. A “warm hand-off” with a mental health care professional helps patients see that a collaborative and multi-disciplinary approach to treatment is encouraged and not a last resort. We often note that since the treatment for celiac disease requires major behavioral and lifestyle changes, it is reasonable that working with a behavioral clinician is often needed to support these changes.
Open communication between the medical provider and mental health care professional — with the patient’s permission — can go a long way. Therapists do not necessarily need to be experts on celiac disease or special diets; most are open to learning as needed for each client. Empirically supported treatments, like cognitive behavioral therapy (CBT) and CBT-related treatments, like acceptance and commitment therapy (ACT) and mindfulness-based stress reduction (MBSR), can be very effective for people dealing with challenges associated with celiac disease.
A group of psychologists and I have also created a free continuing education program to help give therapists more information and tools about treating people with celiac disease.
What are some of the most important ongoing needs in this area in general and regarding the mental health aspect?
Dr Coburn: The area of mental health and psychosocial challenges in celiac disease is often underrepresented in research and funding compared to other chronic conditions. There is quite a bit of misinformation and stigma, especially with the increase in popularity of the gluten-free diet in our society as a whole.
Unfortunately, it is not uncommon for someone diagnosed with celiac disease to be told not to eat wheat and sent on their way with minimal education or support. Access to experts in celiac disease can be difficult, if not impossible, depending on where a person lives. Thus, there are major needs for more attention to be brought to celiac disease in all regards.
We need clearer and updated standards of care that include considering the whole person, both in mind and body. We need better education about who should be screened for celiac disease and how to follow the necessary strict gluten-free diet. We need better information on social media to combat misinformation and be a resource for the public. We are working on this — check out the Celiac Disease Behavioral Science Consortium on Twitter.
Finally, we need better funding for important research projects that aim to support people living with celiac disease as well as bigger-picture studies working on medical treatment, prevention, and ultimately, a cure.
A few years ago, some colleagues and I proposed a number of clinical and research priorities for celiac disease in children.6 I recently received a National Institutes of Health (NIH) grant to refine and test a behavioral intervention for teens and their parents, which is an exciting development for the field of behavioral research in pediatric celiac disease.
Also, NIH recently published a notice of special interest about advancing research in celiac disease, which is a promising step in the right direction.9
1. Lebwohl B, Rubio-Tapia A. Epidemiology, presentation, and diagnosis of celiac disease. Gastroenterology. 2021;160(1):63-75. doi:10.1053/j.gastro.2020.06.098
2. Clappison E, Hadjivassiliou M, Zis P. Psychiatric manifestations of coeliac disease, a systematic review and meta-analysis. Nutrients. 2020;12(1):142. doi:10.3390/nu12010142
3. Slim M, Rico-Villademoros F, Calandre EP. Psychiatric comorbidity in children and adults with gluten-related disorders: A narrative review. Nutrients. 2018;10(7):875. doi:10.3390/nu10070875
4. Coburn S, Rose M, Sady M, et al. Mental health disorders and psychosocial distress in pediatric celiac disease. J Pediatr Gastroenterol Nutr. 2020;70(5):608-614. doi:10.1097/MPG.0000000000002605
5. Lebwohl B, Haggård L, Emilsson L, et al. Psychiatric disorders in patients with a diagnosis of celiac disease during childhood from 1973 to 2016. Clin Gastroenterol Hepatol. 2021;19(10):2093-2101.e13. doi:10.1016/j.cgh.2020.08.018
6. Coburn SS, Puppa EL, Blanchard S. Psychological comorbidities in childhood celiac disease: A systematic review. J Pediatr Gastroenterol Nutr. 2019;69(2):e25-e33. doi:10.1097/MPG.0000000000002407
7. Satherley RM, Coburn SS, Germone M. The impact of celiac disease on caregivers’ well-being: An integrative review. J Pediatr Gastroenterol Nutr. 2020;70(3):295-303. doi:10.1097/MPG.0000000000002572
8. Coburn S, Rose M, Streisand R, et al. Psychological needs and services in a pediatric multidisciplinary celiac disease clinic. J Clin Psychol Med Settings. 2020;27(3):433-443. doi:10.1007/s10880-019-09673-9
9. National Institutes of Health. Notice of Special Interest (NOSI): Accelerating progress in celiac disease research. Accessed online May 16, 2022.