Coeliac Disease receives a lot of attention when it comes to physical health and diet. This makes sense, as of course, it is an autoimmune condition with physical symptoms, and health consequences and its only known treatment is a strictly gluten-free diet. However, CD affects more than just physical health for many people with CD. Fortunately, Research is also catching up with and supporting what people with CD already know. More and more studies are documenting that there are psychological symptoms and conditions that are associated with CD. Such conditions include depression, fatigue, “brain fog”, and anxiety. Whilst research is still working out the details of such relationships, there are ways for us to cope with these conditions.
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 blue nearly all the time, for a period of 2 weeks or more. This may also be accompanied by a loss of enjoyment or pleasure from the things previously enjoyed, feeling more irritable, grumpy, or guilty. It is also associated with changes to appetite (eating more or less), sleep (oversleeping or difficulties sleeping), weight (weight loss or gain), energy, or 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 is a feeling of worry, nervousness, or unease. It also leads people to avoid or escape what is triggering their 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. For example, it is understandable to feel anxious about the importance of avoiding gluten in your diet. 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 situations, due to anxiety over managing gluten-free dining.
People with undiagnosed CD may have increased anxiety, which may make sense in the context of the stress of 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 heighten or add anxiety. Stressors after diagnosis include avoiding gluten, managing to dine out, and adjusting to a new chronic disease. Research shows that social phobia and panic disorder may be slightly more common in those with CD.
- 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 you can improve both your physical and emotional 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” with another person feels therapeutic so that you aren’t dealing with it alone. As our emotions are often invisible, talking to someone 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.
- Get Moving! Getting active or exercising is often the last thing someone who is struggling feels like doing. However, it is also one of the best possible things you can do for your mental health. We know that exercise or being physically active releases chemicals called endorphins in our brain. Endorphins are our mind’s natural mood booster or antidepressant. They’ve even been associated with the lowered perception of pain. Getting active does not mean you need to go out and run a marathon or join a gym. It does mean you need to find everyday ways that you can move your body and get your heart rate up. Think outside the box – perhaps dancing, gardening, or walking instead of driving to places. Although some people are worried that they may feel more exhausted if you increase your exercise gradually it actually produces energy.
- Plan ahead – Planning ahead is key to managing your gluten-free diet, and it can also help with our mental health. First, planning may give us things to look forward to in the week. It may be a movie, your favourite meal, catching up with a friend or reading a book. Second, we are more likely to take action when we have put a plan in place or scheduled it in. Saying I’m going to catch up with a friend this week, is different to contacting them and setting a date, time and location. This also works for things like exercise, where it is in the diary means I have to stick to it no matter how I feel on the day.
- Challenge your thinking – The way that we think about or interpret situations affects the way we feel. When we are struggling with depression or anxiety, this may also further lead us to think in ways that aren’t helpful for us. For this reason, it is important to be aware of our thinking and find ways to change the. Here are common ‘thinking traps’ we all fall into:
- Mental Filter – when you have tunnel vision, and can only see the negative and ignore or don’t consider anything that does not fit with this.
- Catastrophising – assuming the worst or jumping to the worst-case scenario. For example, having CD means I will always feel sick and never lead a normal life again. Am I jumping to a conclusion here? What is an alternative outcome?
- Black or White – seeing the world as ‘black or white’, ‘good or bad’, ‘positive or negative’, but not being able to see the in-between. For example, I will never be able to dine out again because I’m coeliac. When actually, there may be some restaurants you can’t dine out at, but others that are accommodating.
- Learn Mindfulness – This refers to paying attention to the present moment in an intentional and non-judgmental way. Mindfulness is a skill that you can learn and may help improve anxiety, low mood and fatigue. There are plenty of resources online, including ‘headspace’ and ‘CALM’ apps.
- Self-compassion – We are often our own worst critics. When you are being hard on yourself, usually demonstrated by the “I shoulds” (e.g. I Should be able to cope with my CD), don’t forget to show yourself some kindness and compassion. You can do this by reminding yourself that there are others like you, that it is human to go through difficult times and to consider what encouraging words you would offer a friend in your situation. Self-compassion is associated with greater adherence to a strictly gluten-free diet, as well as a greater quality of life.
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 professional:
- Your GP or family doctor
- Free text or call ‘1737’ to talk/text with a counsellor (available 24/7)
- Lifeline (0800 543 354) to speak with a counsellor (available 24/7)
Or take a look at these useful websites for more resources:
Article provided by Sarah McCambridge a Health Psychologist registered in New Zealand who 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 awareness of the psychological impact of coeliac disease and empowering people living with it.
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.