Lesson 1: Coping with the Diagnosis
1.1 Psychosocial aspects of celiac disease and the gluten-free diet
Please note that everyone feels different after diagnosis and has different strategies for dealing with the new situation. All information on psychosocial effects provided here describes patterns that are commonly seen among patients- for you it might be similar or totally different. There is no wrong or right. Therefore, the coping strategies are just suggestions which you may try. Eventually, everybody needs to find their own mechanisms that might be totally different from the ones proposed in this lesson.
Before they learn about the disease, many patients, especially those who have been sick with unexplained symptoms for a long time, experience a reduced quality of life. When a definite diagnosis finally has been confirmed, they often feel relieved and reassured and may not take the gluten-free diet as a burden. Some are even comforted knowing that they do not have to take medication for the rest of their life or have to undergo medical procedures. However, after starting to realize what the diagnosis really means, relief might be replaced by anger or frustration. There can be different reasons for this, for example, some newly diagnosed patients are angry because they realize that the diagnosis could have been made earlier. Others start realizing the restrictions the gluten-free diet brings for their daily life and especially younger patients struggle with a perceived “social stigma” of the gluten-free diet. Yet, over time the acceptance increases in most patients and the self-perceived quality of life is good (figure 1).
(Source: FocusINCD own)
Dietary self-management and its psychosocial effects
Scientific studies suggest that the self-management of the gluten-free diet has a significant psychosocial effect. The burden of the gluten-free diet has been linked to increased rates of anxiety and depression among celiac patients compared to the general population. Moreover, many patients avoid social situations related to food, such as eating out in a restaurant or eating at a friend’s house, often because they think that their diet will be an offense or an inconvenience to others or simply because they have had negative experiences. Even social phobia has been described, which is in turn related to depression. The quality of how patients manage the gluten-free diet has a substantial effect on the perception on the disease: while poor self-management can be attributed to negative feelings and a perceived high burden, good self-management has been found to increase acceptance and positive attitude.
Quality of life
The factors that influence quality of life in the long-term are both physical and mental. Unfortunately, not all of these factors can be influenced, like persisting symptoms and accompanying diseases, which often impede quality of life. On the other hand, good dietary adherence, which is known to be one of the most important determinants of quality of life, is in your own hands! The way you look at your diagnosis and how you deal with your daily life and social situations will influence how you feel (figure 2)!
Figure 2: Determinants of quality of life
(Source: FocusINCD own with information from Burger et al. 2017)
You cannot affect all factors that are influencing your quality of life. However, you can take some things into your own hands. The better you learn how to cope with celiac disease, the less it will control your life!
There are different coping strategies that can help you on your way to deal with celiac disease. Click here to learn more.
Click on the arrows in the slide show below to learn more about coping strategies!