The 16^th International Celiac Disease Symposium (ICDS) was held on June 21-24, 2015 in Prague, Czech Republic. Held every two years, the symposium is an opportunity for researchers around the world to share cutting-edge, new research as well as engage in dialogue with other researchers, clinicians, and patients.

Members of the National Foundation for Celiac Awareness (NFCA) team attended this year’s symposium, including Kristin Voorhees, MA, Director of Healthcare Initiatives who shared the findings from a collaborative research project with the Jefferson Celiac Center in the poster presentation “Celiac Disease Management: A Comparison Between a Celiac Center and the Community Setting.”

Below is information on one of the research study findings presented at ICDS.

Conducted by Dr. Justine Dowd and colleagues from the University of British Columbia, this study looked at how a person’s self-compassion, their quality of life, and their adherence to a strict gluten-free lifestyle are related. Previous research has found that self-compassion, which generally means the act of a person offering kindness and understanding to themselves especially in times of difficulty or failure, is associated with experiencing a better quality of life, successfully using coping strategies, and maintaining a strong sense of personal initiative and responsibility.

In this study, Dowd and colleagues hypothesized that a person would better cope with celiac disease if they practiced self-compassion and, as a result, would experience an improved quality of life and be more adherent with the gluten-free diet. They argued that self-compassion can be achieved when a person is confident in two specific areas of their life: One, they believe that they can change their behavior as necessary in order to be gluten-free and two, they are also confident that they can adjust their behavior to be gluten-free while at the same time managing other importances areas of life. These two concepts are known as “rough self-regulatory efficacy” and “concurrent self-regulatory efficacy” respectively.

This research has two key findings:

1. A person’s level of self-compassion directly predicted their quality of life, and both types of self-regulatory efficacy predicted adherence to the gluten-free diet.
2. Having a strong sense of self-compassion is linked to an increased compliance with the gluten-free diet and a greater quality of life.

Why is this important?

• Being mindful of showing yourself kindness and understanding, especially when experiencing setbacks, failures or challenges, can lead to a happier life. This is important because these types of experiences can be frequent for those diagnosed with celiac disease since the gluten-free diet has many social, emotional and physical challenges. It may also help to remember that other people also diagnosed with celiac disease experience similar situations and emotions.
• Believing that you have the ability to adjust your behavior in order to stay gluten-free will help you maintain the strict gluten-free lifestyle you need to stay healthy.
• This study presents information that brings up whether it could be valuable and effective to teach self-compassion and concurrent self-regulatory management skills to patients diagnosed with celiac disease. Future research is needed to show the specific benefits of this type of patient education.

This research is only possible through participation of people like you living with celiac disease, as well as your family and friends without celiac disease. Your help allows researchers to learn more about celiac disease, while information shared by your family and friends helps researchers to compare study findings to the general population. If you are interested in learning more about current and future celiac disease research, NFCA encourages you to sign up for Beyond Celiac:™ NFCA’s Research Opt-In.