Coeliac disease (CD) has received a lot of attention when it comes to physical health and diet. This makes sense, as it’s an autoimmune condition with physical symptoms and health consequences. Its only known treatment is also a strictly gluten free diet. However, for many people, CD affects more than just physical health.

Research is catching up and supporting what people with CD already know. More and more studies are describing psychological symptoms and conditions that are associated with CD. Such conditions include depression, fatigue, impaired memory and concentration, as well as anxiety (as we’ve looked at in a previous edition of Coeliac Link). Some literature suggests that this may be due to the impact of CD symptoms and nutritional deficiencies pre-diagnosis, or due to how having a chronic condition and dietary restrictions impacts on social relationships (Zingone et al., 2015). Whilst research is still working out exactly how these are linked, there are things we can to do to help us to manage the impact on our psychological wellbeing.

Depression

We still don’t know whether CD causes depression, but we do know that there are higher rates of depression among people with CD. So, what exactly is depression? And how do you know if you are depressed?

First off, it’s important to know that everyone feels sad or down sometimes. Part of being human is feeling a range of different emotions. The good and the bad; the pleasant and the unpleasant.

Depression is when you feel sad, down or miserable nearly all the time, for a period of 2 weeks or more. This is also commonly accompanied by a loss of interest or enjoyment, or feeling more irritable, grumpy, or guilty. Other signs include changes to appetite (eating more or less than usual), weight gain or loss, feeling exhausted, difficulties sleeping or sleeping too much, and problems with concentration. Because many of these signs are vague and are also indicative of other conditions, talking to a healthcare professional for a correct diagnosis is important.

Anxiety

Anxiety is a feeling of worry, nervousness, or unease. As humans, we are hardwired to try to avoid or escape whatever is triggering our anxiety. For example, if you are anxious about spiders, you will do whatever you can to avoid them. Some anxiety is normal, and to be expected. It is understandable to feel somewhat anxious about avoiding gluten in situations involving food. However, for some people, this anxiety can be so debilitating that it may affect their ability to enjoy or function in everyday life.  This may include always avoiding social gatherings, feeling extremely anxious around food, or choosing not to disclose your CD diagnosis for fear of what people might think and risking getting ‘glutened’.

People with undiagnosed CD may experience anxiety due to having unexplained symptoms or feeling unwell. For many people, being diagnosed with CD and starting a strictly gluten free diet may alleviate some of the anxiety or stress they had. However, for some, the diagnosis of CD may create more anxiety. Triggers of anxiety could include efforts to avoid gluten, coping with dining out, and adjusting to a new chronic disease.

Coping strategies: Taking control of your wellbeing

So how can you take control of your physical and mental health? Here are a few ways:

• Eat a gluten free diet – Research shows that many of the psychological symptoms associated with undiagnosed CD improve once a strictly gluten free diet is adhered to (Zingone et al., 2015). As this is also the only treatment for CD, committing to a gluten free diet is an important way that you can improve both your physical and mental health.
• Talk to someone – Whether it’s your parents, your partner, your friends, or a healthcare professional, talking to someone about how you’re feeling can help. Some people find that the act of “sharing the load” is helpful in itself. Talking to someone also helps them to see that you are struggling, so that they can try to help. You might even want to reach out to someone else with CD, by joining the CNZ Facebook page or checking out the CNZ website for upcoming events.
• Get Moving! – Getting active or exercising is often the last thing people feel like doing if they are struggling. However, it is also one of the best possible things you can do for your mental health. Exercise, or any kind of activity that increases your heart rate, leads to the release of chemicals called endorphins in our brain. Endorphins are our mind’s natural mood booster or antidepressant.

Getting active doesn’t mean that you need to go out and run a marathon, or join a gym. Its about finding everyday ways that you can move your body and get your heart rate up. Think outside the box – dancing, gardening, taking the stairs, or walking to your next destination. Although some people are worried that they may feel more exhausted, if you increase your exercise gradually, it can actually help you feel more energised.

• Plan ahead – Planning ahead is key to managing a gluten free diet, but it can also help with your mental health. First, planning can give you things to look forward to during the week. This might be a movie, your favourite meal, catching up with a friend or reading a book. Second, making a plan increases the chances that it will happen. Saying “let’s catch up soon” to a friend is different to setting a date, time, and location.
• Challenge your thinking – The way that we think about or interpret situations affects the way that we feel. It is common for all people to fall into ‘thinking traps’, but this is especially the case for those who are depressed or anxious. For this reason, it’s important to be aware of our thoughts, and find alternative and more helpful ways of thinking. Here are common ‘thinking traps’ to watch out for:
  1. Mental filter, also known as ‘tunnel vision’. When you can only see the negative and ignore or ‘filter out’ other evidence to the contrary. For example, you’re convinced your friend must not care about you after they baked muffins that are not gluten free. Is it possible that they are a good friend, but simply made a mistake? Are there other ways that they show they care about you?
  2. Catastrophising, which means jumping to conclusions and assuming the worst. For example, ‘having CD means I will always feel sick and never lead a normal life again’. Consider – am I jumping to conclusions here? What is another possibility?
  3. Black or white, when you see the world as ‘black or white’ or ‘good or bad’, and aren’t able to see anything in between. For example, ‘I will never be able to dine out again because I’m coeliac’. When in reality, there are many restaurants that can accommodate for people with CD, even if there are others that cannot (see CNZ’s Dining Out programme for more information).
• Practice mindfulness meditation – Mindfulness refers to paying attention to the present moment in an intentional and non-judgemental way. Mindfulness is a skill that you can learn, through meditation practices. It has also been found to improve depression, anxiety, and psychological distress among people with chronic health conditions (Bohlmeijer et al., 2010). You can find plenty of resources and guided meditations online, including apps such as ‘headspace’ or ‘CALM’. Yoga is also seen as a mindful activity.
• Treat yourself with compassion – We are often our own worst critics. This can be demonstrated by the dreaded ‘should’s (e.g. I should be able to cope with my CD). This can be unhelpful and lead us to feel worse about ourselves. It is important to show yourself some kindness and compassion, as this is also associated with better quality of life and better adherence to a gluten free diet (Dowd & Jung, 2017). This can be done by reminding yourself that you are human, and that there are others out there struggling with the things that you struggle with. We are much better at offering compassion to others, so consider what encouraging words you would offer a friend in your situation. There are also guided mindfulness meditations for cultivating self-compassion on the University of Auckland website https://www.calm.auckland.ac.nz/

 Although it can be difficult to manage the psychological impacts of CD, you are not alone. If you or someone you care about is struggling and need a bit of extra help, don’t hesitate to contact a healthcare professional:

• Discuss with your GP or family doctor
• Free text or call ‘1737’ to talk/text with a counsellor (available 24/7)
• Call Lifeline (0800 543 354) to speak with a counsellor (available 24/7)

Or take a look at these useful websites for more information and resources:

• https://www.mentalhealth.org.nz/
• https://depression.org.nz/
• https://www.anxiety.org.nz/

Article provided by Registered Health Psychologist Sarah McCambridge.

Sarah works clinically with people with chronic health conditions. Her professional and personal life came head-to-head when she was diagnosed with coeliac disease herself. As a result, Sarah has an interest in raising the awareness of the psychological impact of coeliac disease and empowering people living with it.

References:

Bohlmeijer, E., Prenger, R., Taal., E. &, Cuijpers, P. (2010). The effects of mindfulness-based stress reduction therapy on mental health of adults with a chronic medical disease: A meta-analysis. Journal of Psychosomatic Research 68(6), 539-544.

Dowd, J. A. & Jung, M. E. (2017) Self Compassion directly and indirectly predicts dietary adherence and quality of life among adults with celiac disease. Appetite 113, 293 – 300.

Zingone, F. Swift, G. L., Card, T. R., Sanders, D. S., Ludvigsson, J. J., & Bai, J. C. (2015) Psychological morbidity of celiac disease: A review of the literature. United European Gastroenterology 3(2), 136 - 145.