The connection between your gut and brain is indisputable – so it’s perhaps unsurprising that a condition like coeliac disease, which affects your gut so significantly, also has an impact on your mind. Yet until now, very little has been said about the connection – and so often, mental or cognitive symptoms are dismissed as being related to other conditions. So what do we know about the connection between coeliac disease, cognitive function, and mental health?
It’s getting foggy up here…
Stomach pains, bloating, diarrhoea, weight loss, tiredness… These are the symptoms we think of alongside coeliac disease. However it’s becoming clearer that coeliac disease impacts not just your body – but also your mind ‘Brain fog’ isn’t exactly a scientific term, but it summarises many of the symptoms which people living with undiagnosed coeliac disease have to put up with – from difficulty concentrating to short-term memory lapses, forgetfulness or confusion.
Brain fog can impact people’s ability to work, study, read, write, socialise, and even drive. For children and young adults, this can have a real impact on their long-term development. Although there isn’t a definitive, scientific conclusion of coeliac disease as a cause of brain fog, one study from Monash University in Melbourne sees them as related, explaining "Cognitive impairments associated with brain fog are psychologically and neurologically real and improve with adherence to a gluten-free diet." However, that’s not to say that coeliac disease is the cause of brain fog – instead, your ‘fuzzy-headedness’ could be thanks to being exhausted and not sleeping, or to the brain function-related nutritional deficiencies that go hand-in-hand with your villi being damaged during the consumption of gluten. If you’re unable to properly absorb nutrients, or if your intestines are damaged, you’re unlikely to properly take in the substances that have an impact on brain functioning.
|Cloe Martin explains how living with undiagnosed coeliac disease had a serious impact on her mental health.
“Brain fog was a significant issue for me prior to diagnosis - I felt like I had lost my memory and organisational skills, I lacked energy and felt tired and exhausted. I also recall feeling anxious and didn't want to eat anything at all because of the pain and discomfort food gave me. At one point I lost around 5kgs within two weeks because nothing would stay in my system. This is when I went back to my Doctor and after a long 5 months of tests it was finally confirmed to be coeliac disease.
I was at a loss and had a young son to take care of – and the constand feeling of being depressed was the worst of all because it held me back from things that I would have loved to have done if I was feeling healthier and in the right mind space. Even now, after diagnosis, I have a lot of moments where I feel like it is too much. The skin issues, the mood swings, the lack of energy, the concerns about what long-term symptoms may pop up and more. Judgement from others is often a trigger to how one feels as a coeliac.
I got diagnosed at 24 years old and I knew it was going to be very challenging financially and mentally. I felt overwhelmed but, at the same time, relieved that I finally had an answer and that there was a way that I could potentially feel better. I do still have symptoms but they have eased. The anxiety and depression I feel is still always a work in progress, and on my shoulders daily, but with a more positive mindset now that I am feeling better and it doesn't feel as intense.”.
Inflammation or nutrient deficiencies?
Perhaps even more worryingly though, is the connection between coeliac disease and depression.
One Danish study found that having coeliac disease increased the risk of developing a mood disorder by 91%, and a 1998 study found that about a third of those with coeliac disease also suffer from depression. So how are they connected? Several studies suggest that gluten-related intestinal damage could lead to nutritional deficiencies such as certain B vitamins – and a lack of these may cause depression and anxiety. Additionally, the new book The Inflamed Mind by Cambridge University psychiatrist Professor Edward Bullmore looks at the emerging role of inflammation in depression – something that is certainly linked with coeliac disease as well.
“In terms of actual scientific evidence, the jury is still out on whether coeliac disease causes depression, anxiety, schizophrenia, bipolar because the evidence has been a bit mixed,” explains Registered Clinical Psychologist Dr Liesje Donkin. “That’s really around a lack of solid methodologies in terms of the kind of research – inconsistencies around how it’s done, varied sample sizes that make it hard to draw an absolute, definitive conclusion.”
However, although there is no clear conclusion around why depression and coeliac disease are linked, there seems no doubt that they are.
|Maria Foy, from Happy Mum Happy Child, describes how depression, anxiety, and coeliac disease have gone hand in hand for her.
“I did suffer a mental breakdown (of sorts) in my mid 20s – which was a combination of a lot of things. Now that I look back on it, it wouldn’t surprise me if undiagnosed coeliac disease contributed to this. I was always anxious, often over-analysing. I put on a good front, but I would worry about EVERYTHING. This definitely hindered a lot of my day-to-day activities.
I was 32 when I was diagnosed and suddenly I felt like some pieces of a puzzle came together. At the time, I actually didn’t realise that “brain fog” or being affected mentally by gluten was a thing.
It wasn’t until I was “glutened” several times, that I realised my mental state was being severely affected. In fact, it’s my number one symptom that I actually experience.
When I realised that it was gluten that was contributing to my negative mental health, it was quite the revelation. When I’m eating well, I feel on track. I feel like my normal self. I feel as though my thoughts are my own. I don’t doubt decisions I make, and I worry a heck of a lot less.
I’m being treated for my depression, and have been for six years now. It’s totally under control until I eat gluten. My thoughts suddenly become erratic, and I start doubting myself in every way. Those thoughts that I had prior to being diagnosed with depression, start to creep back in.
I have gut issues as well, but the mental health issues surface much quicker than anything else.”
The pain of remaining undiagnosed…
Although there is no definitive answer as to whether coeliac disease causes or is linked to depression and other mental health conditions, there’s no doubt that coeliac disease impacts on your mood. “Anecdotally, particularly when undiagnosed, people do appear to have mood issues, because they are having all these symptoms they can’t explain. It’s quite frustrating, hopeless, and they feel like there’s no solution,” explains Dr Donkin. “That type of model would leave anyone feeling depressed.” “With coeliac disease and eating gluten, pain and discomfort can lead to worsened mood. They could have anxiety around things like eating out, which can have quite a profound effect on mood.”
For many, having to deal with the challenges of living with coeliac disease can be a cause of their depression. “Anybody with any chronic condition, it does increase their risk of having depression or anxiety because it has a significant impact on quality of life and freedom. That’s really normal,” For coeliacs who wait years for a diagnosis, the biggest impact on mental health may come from being doubted, or left with no answers.
|Matthew Egbers, who was diagnosed with coeliac disease at age 11 in 2003, shares his story.
“When I was young, coeliac disease wasn’t known about. I was in so much pain, not putting on weight, but there was a lot of doubt about whether I was sick or not. Having that kind of doubt on you as a kid was pretty intense; you start to trust what the adults are saying even though you know how you feel physically. It starts to kind of break down the trust you have in yourself, in your self-confidence.
When I was diagnosed, I burst into tears. I was sad that I couldn’t eat the food I liked anymore but it was more like relief. There actually was a physical problem and changing something meant I would be feeling better. Once I came off gluten, the challenge was more the mental part – feeling different from everybody else. When I was young, I had to take bags of food to other people’s places – it’s isolating having something like coeliac disease affect you.
My challenges with mental health later in life and that experience are 100% connected. Being constantly doubted for two years and not knowing whether what you’re feeling is real takes a toll on your psyche, especially when it was never properly dealt with.”
The impact of going onto a gluten free diet on your brain
Luckily, there’s good news – a strict gluten free diet can not only help ease your physical symptoms, but can also improve mood and lower the likelihood of depression. “Often once they are diagnosed, they get a big sense of relief, they feel like they have a sense of control, they feel empowered. And that does greatly influence their mood. Traditionally people, when they don’t feel good when they eat, avoid eating out, and that limits social contact. Once they know, they do feel so much better,” shares Dr Donkin, who explains that it’s important to make sure that you’re still getting all the nutrients you need for healthy brain function on a gluten free diet.
“Initially for some people it can be really hard negotiating what they can eat and what they can’t and that can be quite frustrating. But once people know how to manage it and particularly when they find their safe foods, it’s usually okay. The things that we would look for with a restricted diet would be – are they cutting out carbohydrates and are they getting the right micronutrients to create the neurotransmittal brain chemicals that they need to feel good? And usually they can still do that if they’re eating a balanced diet.”
|Rebecca Henderson shares her coeliac story.
“I was diagnosed with depression in March 2009 and was on medication until October 2013 when I weaned myself off them. I still suffer from daily anxiety which I have learned to live with.
Prior to diagnosis I was unable to do things for myself, I would need my parents to do the smallest tasks for me. I lost a lot of friends who didn't understand depression. Most days I would force myself to go to work even though I would end up sitting there and crying for no reason. I ended up feeling extremely worthless and wasn't sure there was light at the end of the tunnel but counseling and the support of a few friends and family members helped me through it.
When I was diagnosed with coeliac disease, it was such a relief at first to finally know there was a reason for my constant pain and that there was a solution, but then it dawned on me that it wasn't a simple fix and I would have to be so vigilant for the rest of my life. It was really hard to adjust, especially as it was a few months before Christmas and I had to watch people around me eat all the food I knew I wouldn't be able to have. I was also angry that it took my GP nearly a year to send me to a specialist after me going to see him about twice monthly with my symptoms.
After going onto a gluten free diet, I was finally able to go to the toilet regularly after being constipated and bloated for weeks at a time. I also stopped getting the excruciating cramps from eating gluten every day. I was less irritable and tired as well.”
Is your brain affected by being ‘glutened’?
Everything we’ve discussed so far relates to living with undiagnosed coeliac disease and getting diagnosed, but how about the impact of consuming gluten once you’re on a gluten free diet?
Many people with coeliac disease can sense almost immediately when they’ve been ‘glutened’. Whether it’s a headache coming up, their brains getting foggy, or feeling exhausted, the mental impacts are just as serious as gut-related symptoms.
According to Norman Latov, M.D., Ph.D., a professor of neurology and neuroscience and the director of the Peripheral Neuropathy Clinical and Research Center at Weill Cornell Medical College, the presence of neurological symptoms certainly supports the idea that the brain and gut are connected – and that brain fog, anxiety, migraines and other cognitive conditions may not be simply due to the stress of remaining undiagnosed.
“Stimulation of the immune system by gluten in the diet would increase the inflammation in both the gut and nervous system,” he explains, highlighting how gluten could impact on the brain – and lead you to having neurological symptoms when you are accidentally glutened.
|Christina Frantzen shares what life was like before being diagnosed – and how she’s struggled since.
“I got a cold after getting extremely freezing and wet at a concert, and it just never seemed to go away. Then other symptoms snuck in like being tired, flat, dizzy, foggy brain, stomach pains, bloating, irregular bowel motions, and crazy mood swings.
It took months to get diagnosed. My GP missed it completely and after all sorts of tests, scans, x-rays, ultrasound etc. I was referred to a specialist and they did my coeliac blood test and then the biopsy. I was diagnosed with severe coeliac disease at the age of 39. On one hand, I felt relieved it wasn't the big C but on the other hand, I wasn't prepared for a sharp shift into a new eating lifestyle. I was like every other person out there thinking GF was a diet choice, not something compulsory. During my first few weeks of trying to find my feet I cried a lot. I was so frustrated and angry.
I was waiting and waiting for this big change in how I was feeling. I was looking forward to having my energy back and feeling upbeat so I would be able to tackle this disease head on. I waited some more but still nothing. People kept saying you must feel amazing now, but I didn't. It has been a year now and, on a positive note, I no longer have the stomach pains, bloating, irregular bowel motions, crazy mood swings (my husband might disagree with that one) but I'm still not 100% when it comes to my energy levels. I have days where I'm very tired, flat and foggy brained – but I know that my diet is GF as my blood tests keep coming back negative.
4 hours after I have eaten gluten I'm in a living hell. To start with I feel sick, I get the sweats, I feel dizzy and the room is spinning out of control. I then get stomach cramps and start trying to be sick but have never been able to. It is a major mental struggle… It's like getting onto a rollercoaster and not being able to get off until the ride ends. All I can do is crawl into a dark place with a cold cloth, pills for the splitting headache I now have, and try and sleep it off.
Slowly the physical symptoms subside but the mental ones kick in. I continue to be anxious and don't want to eat much. I am frustrated at the situation, I'm frustrated that someone else who didn't really take my disease seriously caused me this pain, but most of all it hits home a million times harder than my first diagnosis that I have this disease and I have it for life. Then come my mood swings, but unlike any others I have ever had… I feel sorry for myself, I feel down and out, I feel depressed, I feel alone. This whole experience lasts two weeks in total, and at the end of the two weeks, I'm back to my usual coeliac self.”
Becoming mentally healthy together
What’s become clear to us in putting together this article is that no-one is alone – experiencing brain fog, anxiety, depression, and other cognitive and mental health conditions is common among coeliacs, both undiagnosed and those trying to maintain a strict gluten free diet. If you’ve been dealing with these kind of symptoms, you are not alone, and there is help.
If you’re feeling depressed, anxious, or just struggling to deal with the mental health implications of coeliac disease, there are a number of services available. They are there to help if you want to talk (kōrero) with someone about how you’re feeling, or if you know someone who may need help. Below are just a few of the places you can go to get support, or talk to your doctor to discuss the best way forward.
Depression Helpline 0800 111 757
Anxiety Line 0800 ANXIETY (2694 389)