Currently, the only effective treatment for celiac disease is a strict, gluten-free diet for life. Studies have shown that patients who take their diet very seriously not only reduce their risk of long-term health complications, including cancers and bone deterioration, but also tend to be free from stomach and intestinal discomfort.

We know that there are medical benefits to a gluten-free diet for people with celiac disease, but how are patients affected from a social and emotional standpoint? Researchers at the Celiac Disease Center of Columbia University in New York designed a study to find out more about how quality of life is affected when such a strict diet is required.

The study included 50 adults (age 18+) and 30 teenagers (age 13-17) with biopsy-confirmed celiac disease. Based on information received through an interview process, each patient was identified as either “extremely vigilant” or “less vigilant,” based on how strictly and thoroughly the gluten-free diet was followed. Each participant was also given a food label quiz to determine knowledge about gluten-containing ingredients, and was asked a specific question to assess for overall level of energy.

In both teenagers and adults, lower energy was associated with a lower quality of life, but also with greater knowledge. In adults, the “extremely vigilant” followers of the gluten-free diet had a lower quality of life than the “less vigilant;” there were no significant differences in the two groups of teenagers.

Overall, the study found that the majority of participants who follow a gluten-free diet experience social and emotional stress around eating out due to fear of cross-contact, embarrassment about having to ask a lot of questions, and frustration with the gluten-free diet being perceived as trendy. Many participants feel they are less able to be spontaneous because they are worried about food options in unfamiliar situations.

Patients with celiac disease often wonder how strict they have to be on the gluten-free diet. Although celiac disease centers offer advice regarding efforts that should be taken to avoid gluten exposure, “there are still varying degrees of vigilance that patients take, particularly regarding eating outside the home,” stated Dr. Benjamin Lebwohl, study co-author, Celiac Disease Foundation Research Committee member, and Director of Clinical Research of the Celiac Disease Center at Columbia University. “Our results suggest that being more vigilant comes at a potential cost in terms of quality of life. We should try to find the sweet spot consisting of a safe gluten-free diet that is practical and compatible with a full life.”

This study found that strict adherence to a gluten-free diet can actually lower quality of life for celiac disease patients, when social and emotional factors are considered. It is important that medical providers take this into consideration when encouraging their patients to follow a gluten-free diet. Involving a registered dietitian for education, as well as friends and family for support, are two suggested ways to keep quality of life high while still promoting strict dietary adherence.

Click here to read the full study.

Understanding that the emotional and psychological impact associated with celiac disease can have particular and profound challenges, it is hardly surprising that celiac disease and the need for strict adherence to a gluten-free diet can cause severe stress on families and social relationships, and can contribute to a sense of social alienation and an overall lower quality of life. In the first national effort to systematically address the emotional and psychological issues of young people with celiac disease, the Celiac Disease Foundation and Children’s National Health System joined together in 2016 to expand mental health education around this specific issue and to empower healthcare providers and community-based peer support facilitators to provide counseling. The Resnick Celiac Disease & Gluten-Related Conditions Psychological Health Training Program is a free online program that provides continuing education to primary care and mental health providers about the psychological impacts of celiac disease, empowering healthcare providers to identify and treat both the medical and mental health aspects of the conditions. Learn more about this program here.

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Gluten-Free Diet and Quality of Life