Coeliac disease – it could be in your head

To mark Coeliac Awareness Week coinciding with Mental Health Awareness week, I take a look at the link between coeliac disease and mental health problems.

Around 7 years ago I cried in the supermarket ready meal aisle. It had been a long week at work, we’d had a quick Friday drink with colleague and having no dinner plans, decided to get something quick to eat at home. But after trawling the labels of 4, 5, 6 boxes there wasn’t a thing that didn’t have the dreaded “contains wheat” label.

It was near the beginning of my adjustment to a much-sought diagnosis of coeliac disease. After months and years of physical ill health I’d initially revelled in at last having an answer, but the reality of not being able to just pick something up on the fly ‘like a normal person’ was a bit too much for someone hungry after a couple of vodka sodas.

Thankfully since my diagnosis, supermarket provision has improved dramatically; and options for eating out are following suit, in part due to campaigning from organisations like Coeliac UK. Also thankfully this kind of episode was unusual for me. (Not least because I rapidly got better at planning where and when I would eat).

My adjustment to the gluten free diet was a relatively easy one; but even now, with improved options – for some the adjustment is harder – and the coeliac diagnosis and gluten free diet can undoubtedly impact a person’s mental health.

Diagnosis and going gluten free – a potential trigger for anxiety or depression?

The psycho-social impact of coeliac diagnosis has the potential to be huge. Eating, and specifically wheat-based foods are such an ingrained part of our culture that removing them can seem overwhelming. From birthday cakes to meals out with friends, to the daily grind of the work canteen or packed lunch, it’s easy to see how such a big lifestyle change can be hard to manage, especially for those who are all too commonly diagnosed later in life. Some describe it as a feeling of bereavement.

Social exclusion, too, whether real or perceived, can also play a part in development of mental health problems. I all-too-often hear parents describe taunts over ‘funny’ bread, children left out of classroom parties or baking activities by teachers, or secretly cheating on their gluten free diet because they just want to feel ‘normal’.

Recent research by the team at the University of Birmingham explored the other extreme – finding that some adults with coeliac disease develop disordered eating patterns after diagnosis with some displaying binge-eating behaviours, and others restricted eating patterns as a way of managing symptoms. A recent study in Sweden even found an association between coeliac disease and anorexia – although it was unclear if this stemmed from misdiagnosis of coeliac in the first place, or the management of diagnosed coeliac disease.

Certainly, though, even the most confident of individuals may find it hard to trust food after being made ill by it for so long. In my volunteer work for my local Coeliac UK group I often meet individuals afraid to eat out at all, go on holiday, or eat an unplanned meal; so eroded is their trust in other people to keep them safe. Others of us plan so thoroughly we carry cases of food on trips, and a handbag of snacks everywhere. We eat a whole packet of biscuits before a social occasion, such is the fear of being left hungry for an unknown amount of time.

Untreated coeliac disease, glutenings & links with mental health problems

It may not be only the adjustment to a diagnosis and new lifestyle that impacts mental health in people with coeliac disease. Anecdotally, people with coeliac often report “brain fog“, insomnia or panic attacks when they accidentally ingest gluten; and an increasing body of research is showing that antibodies to gluten may not just effect the gut, but also the brain, with untreated coeliac disease being linked with conditions as diverse as anxiety, depression, ADHD, autism and schizophrenia. One study showed that anxiety was more common in people with coeliac than the general population, but fortunately symptoms improved upon diagnosis and adherence to the gluten free diet.

The biological reasons for this link are still being explored but include the action of anti-gluten antibodies on the brain and serotonin production.

Non-coeliac gluten sensitivity

Finally to those who don’t have a diagnosis of coeliac disease, who feel that ingesting gluten products impacts their health – a much-maligned group in the media who are most often told “it’s all in your head”. Of course research is emerging that shows other immune or inflammatory reactions may be at play here for gut symptoms, and the same is true for neurological symptoms.

For some, undoubtedly the symptoms experienced when ingesting gluten are in part a ‘nocebo’ effect – where beliefs around a food manifest in physical symptoms; and for others beliefs can develop around restriction of certain foods and impact on health. This is no less valid a health concern, as an issue with eating behaviours deserves support and understanding as much as a physical illness.

What to do?

I don’t want this to be a ‘doom and gloom’ article, but I do think the link between coeliac (and in fact, other special medical diets) is under-explored. I hope you find this in some way reassuring if you have experienced mental health problems associated with coeliac disease, that you are most certainly not alone in this! There are numerous places to go for help – a few resources here:

  • Firstly, I feel I should stress the importance of getting a diagnosis. Many people aren’t sure of the benefits of going through diagnostic tests for coeliac, especially with the threatened withdrawl of NHS gluten free prescriptions in England, but doing so will enable you to get plugged into resources and practical support to manage an often difficult transition including gastroenterologists and dietitians.
  • Coeliac UK have a wealth of resources and practical help for those going through diagnosis or newly diagnosed.
    • Their helpline is particularly useful if you prefer to talk through your concerns with a real person.
    • I also highly recommend joining one of their local groups which can be brilliant sources of peer support.
  • For more specialist support around mental health, the first point of call is usually your GP who can refer onwards to specialist services including Cognitive Behavioural Therapy which can be very effective for managing anxiety.
  • Mind support those living with, or supporting someone with mental health problems.
  • BEAT – the eating disorder charity provide specialist support for people dealing with eating disorders or disordered eating in the UK.

This week’s Coeliac UK Awareness week is focused on eating out, gluten free. For more information on how to spread the word, they have some great campaign resources.

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