Celiac Disease and Eating Disorders: Screening and Education

Sponsored by the ACOFP Foundation, with winners selected by the ACOFP Health & Wellness Committee, the Namey/Burnett Preventive Medicine Writing Award honors the memory of Joseph J. Namey, DO, FACOFP, and John H. Burnett, DO, FACOFP—dedicated advocates for osteopathic medicine—and recognizes the best preventive medicine blog posts submitted by osteopathic family medicine students and residents.

It is estimated that three million people in the United States have celiac disease, an inheritable autoimmune disorder in which the consumption of gluten triggers the body to launch an immune attack against the small intestine (1). Ninety-seven percent of these people do not have an official diagnosis (1). Lack of diagnosis and effective treatment can lead to serious adverse health outcomes including malnutrition, osteomalacia, osteoporosis, cancer, infertility, nervous system disorders, and lactose intolerance (2). Treatment for celiac disease is fairly simple: following a strict gluten-free diet (2). Adherence to this diet allows the body to heal itself from the previous immune attacks. Although celiac disease is technically a physical disorder, it can affect a person’s mental health by causing depression, anxiety, and eating disorders (3). As clinicians, it is important to recognize the signs and symptoms of both celiac disease and eating disorders to determine if screening for an eating disorder is needed. It is also important to educate patients with celiac disease on how to care for their condition to avoid some of the instances that may lead to the development of an eating disorder.

Background Information

A 2021 meta-analysis of eating disorders in patients with celiac disease found that 8.88% of patients with celiac disease also had an eating disorder and that the risk of anorexia nervosa, in particular, was significantly higher in patients with celiac disease than people without it (4). The development of an eating disorder in addition to celiac disease can compound long-term health risks in patients.

There are varying reports as to why eating disorders develop more prevalently in patients with celiac disease. Research has shown that psychological distress is a predominant risk factor for developing eating disorders (5). Psychological distress can be caused by being diagnosed with a chronic illness, dealing with the diagnosis process, and friends and family not being understanding or being dismissive of the patient's concerns. One particular concern that is at the forefront of many minds is food insecurity. 15.9% of Americans with celiac disease who were surveyed in a US National Health and Nutrition Examination Survey from 2009 to 2014 were considered to be food insecure, complicating treatment of the disease. In addition to psychological distress, the combination of having to follow a restrictive gluten-free diet and a fear of a food potentially leading to symptoms can lead to an increased wariness of the food that they consume, and thus may contribute to the development of an eating disorder (6). Another study highlighted the certain demographics that seem to be most affected by a combination of celiac and eating disorders. This study found that people aged 23-35 years old, engaged, and participating in a gluten-free diet for less than a year at the time of the survey reported a significantly lower quality of life (7).

What to Look for in Patients

Eating disorders such as anorexia nervosa have symptoms that can manifest similar to those of celiac disease, such as food avoidance/aversion and weight loss. Females who are older adolescents, have a higher BMI, and have a higher instance of depression are affected more than other groups (8).

Educating Patients

As previously stated, the combination of having to follow a restrictive gluten-free diet and a fear of food potentially leading to symptoms can inadvertently lead to an eating disorder. This is where clinicians can work to make a difference and ease the lifestyle changes patients with celiac disease will have to undertake. Properly educating patients on following a gluten-free diet, where to obtain gluten-free foods, deciphering food labels in a grocery store, identifying misinformation about celiac disease and a gluten-free diet, and the potential for cross-contamination may alleviate some of the stress of adhering to the diet and help avoid the development of an eating disorder.

A gluten-free diet consists of cutting out consumption of products derived from wheat, barley, and rye. There are many gluten-free options on the market to replace these products, but locating these can be difficult in some retailers. Having an informational list of local grocers that carry these gluten-free alternatives will help patients know where to shop confidently. Also, some patients may benefit from consulting with a dietician that is well-versed in the needs of celiac disease.

A trickier part of avoiding gluten is deciphering food labels. In the United States, gluten content is not required to be reported on food products, thus companies can decide if they want to label their products as gluten free. If a company does decide to label a product as gluten free, then the gluten content of that product has to be 20 ppm or lower (10). However, some food products are considered gluten free without the claim. Knowing which ingredients in food products are gluten free or not can help patients be able to eat a wider variety of foods that sticking to strictly gluten-free brands would (11).

Social media and the internet have allowed the spread of information about celiac disease and gluten. For example, TikTok has several registered dieticians that make informational videos on eating out gluten free and nutrition. Instagram is full of accounts that scour popular grocery store chains for new gluten-free products, try them, and post reviews. However, social media has also allowed misinformation to spread. Misinformation can cause patients to restrict their diets even more, avoid foods that are safe for them to eat, and increase fear and anxiety around food. Encourage patients to seek out information from evidence-based legitimate sources and educate patients on what those sources may look like.

Cross-contamination is a big concern in patients who have to share a kitchen with people who still consume gluten. When sharing a kitchen with others, label which foods are gluten free and keep those in a separate area than the regular gluten-containing foods. Also, clean off counter tops before food preparation to keep stray crumbs from getting into the gluten free food. It is okay to use most of the same kitchen appliances and cooking supplies as long as they are cleaned thoroughly between uses. Wooden supplies, however, are the exception to this, as they are porous and do tend to hold on to gluten (12).

References

Celiac disease facts and figures. https://www.cureceliacdisease.org/wp-content/uploads/341_CDCFactSheets8_FactsFigures.pdf. Accessed December 30, 2022.
Celiac disease. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220. Published August 10, 2021. Accessed December 30, 2022.
Psychological impacts of celiac disease. Beyond Celiac. https://www.beyondceliac.org/living-with-celiac-disease/psychological-impacts/. Published April 1, 2022. Accessed December 30, 2022.
A systematic review and meta‐analysis of the prevalence and odds of eating disorders in patients with celiac disease and vice-versa. Wiley online library. https://onlinelibrary.wiley.com/doi/10.1002/eat.23561. Accessed December 31, 2022.
Carley N. Frasera, Stephan P.Möllera, Simon R. Knowles. Understanding disease-specific and non-specific factors predicting disordered eating in adults with coeliac disease. Appetite. https://www.sciencedirect.com/science/article/abs/pii/S0195666321006516?via%3Dihub. Published October 8, 2021. Accessed December 30, 2022.
Quick VM, Byrd-Bredbenner C, Neumark-Sztainer D. Chronic illness and disordered eating: A discussion of the literature. Advances in nutrition (Bethesda, Md.). https://ncbi.nlm.nih.gov/pmc/articles/PMC3650496/#:~:text=Although%20it%20remains%20unclear%20whether,eating%20disorder%20and%20other%20health. Published May 1, 2013. Accessed December 30, 2022.
Lee AR, Lebwohl B, Lebovits J, Wolf RL, Ciaccio EJ, Green PHR. Factors associated with maladaptive eating behaviors, social anxiety, and quality of life in adults with celiac disease. Nutrients. https://ncbi.nlm.nih.gov/pmc/articles/PMC8708489/. Published December 15, 2021. Accessed December 30, 2022.
A publication of the University of Chicago Celiac Disease Center ... http://www.cureceliacdisease.org/wp-content/uploads/CdC_Newsletter_2017_Issue04_FINAL_R3.pdf. Accessed December 31, 2022.
https://mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/gluten-free-diet/a rt-20048530
Center for Food Safety and Applied Gluten and food labeling. U.S. Food and Drug Administration. https://www.fda.gov/food/nutrition-education-resources-materials/gluten-and-food-labeling. Accessed December 30, 2022.
Nutrition: Confusing gluten-free diet ingredients. National Celiac https://nationalceliac.org/celiac-disease-resources/confusing-gluten-free-diet-ingredients/. Accessed December 30, 2022.
Cross-contamination with gluten. Cross-Contamination with Gluten | BIDMC of Boston. https://bidmc.org/centers-and-departments/digestive-disease-center/services-and-programs/ celiac-center/celiacnow/nutrition-and-the-gluten-free-diet/cross-contamination. Accessed December 30, 2022.