New questionnaire Published – The “CD-FAB”

For people with coeliac disease, following a gluten free diet can be challenging. Research has shown that peoples’ attitudes towards food and their behaviour around food may lead them to skip meals and restrict certain foods. These behaviours can be considered “disordered” but should not be mistaken for eating disorders such as anorexia or bulimia – these are much more serious conditions and should be diagnosed by qualified mental health professionals. It is estimated that as many as 29% of adults with the condition are said to be at risk of developing disordered eating behaviours, suggesting this is an important area for researchers and clinicians to consider.

When people with coeliac disease first start following a gluten free diet, they may experience some concerns. First, they may gain weight. This is because their gut is healing and absorbing nutrients more efficiently. However, this can be difficult to accept, even if the weight gain does not increase the person’s BMI significantly. So, people may start to restrict foods, even though they are gluten free, to try to maintain their pre-diagnosis weight. Some of the ways they do this may be considered “disordered”. Another reason why we may be concerned about someone’s eating behaviours after diagnosis would be if they become worried or anxious around food due to a fear of cross contamination – we know that some people with coeliac disease are sensitive to even the smallest amount of gluten.

Some questionnaires already exist which measure disordered eating behaviours, such as the Binge Eating Scale (BES) and the Eating Attitudes Test (EAT). However, these measures do not always pick up behaviours which are concerning for people with coeliac disease, as they are not designed specifically for this group.

The most typical “disordered” eating behaviours in people with coeliac disease are skipping meals, anxiety around and avoidance of new foods and foods prepared by someone else and overeating to compensate for skipping meals or because gluten free “treats” are available. However, for most people, these behaviours do not become a problem and usually resolve as they become more confident with the diet.

Our former student Rose-Marie Satherley focussed her PhD research on disordered eating in coeliac disease and, as part of this research, developed a new questionnaire to measure these behaviours specifically in adults with the condition. We are delighted that this has recently been published in the journal Gastroenterology Research and Practice.

The new measure is known as the Coeliac Disease Food Attitudes and Behaviours scale or “CD-FAB” for short and can be used to identify disordered eating attitudes and behaviours in people with coeliac disease which may stem from concerns about cross-contamination and food safety; these are not included in existing questionnaires. The CD-FAB also measures concerns about eating in social settings, gut symptoms and weight change.

The questionnaire is organised into four themes: handling of food, trust, risk taking and food safety; these are all issues that people face when learning to manage a gluten free diet. The questionnaire is short – there are only 11 questions such as “I am afraid to touch gluten containing foods” and “I am afraid to eat outside of my house”. The questions are answered from ‘strongly disagree’ to ‘strongly agree’. If people score highly on the measure, then it might indicate increased levels of food concerns and show that people are engaging in behaviours around food that may be considered “disordered”. The questionnaire is robust and reliable which means it can successfully identify disordered eating behaviours and attitudes in adults with coeliac disease.

We are delighted to have been involved in the development of this measure. Our hope is that both researchers and clinicians may start to include it in their work to help to identify why some people struggle with these aspects of the gluten free diet, whilst others manage to adapt well.

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