Robbie Graham

I was diagnosed with coeliac in 2021, when I was 20 years old, in the middle of lockdown. Coeliac came after many months of stomach issues, but mainly mental health problems such as depression, anxiety, and brain fog. I didn’t feel like myself at all, and it was so hard trying to determine if my mental symptoms were just being caused by lockdown or something else.

My family and I luckily had an awareness of the coeliac disease as my older brother was diagnosed a few years before me, and this also meant I was much more at risk of having the disease. The chances go from 1 in 100 to 1 in 10 when you have a direct family member with the disease. When it seemed like I had tried every other possible route, I decided to get a TTG blood test. Initially, I was told that it came back negative and that I didn’t have coeliac disease – or risk of it, as it can only be properly diagnosed with an endoscopic biopsy. However, when I phoned the GP a few months later about an unrelated issue, I was also asked how I was getting on with my coeliac disease, which, as I’m sure you can imagine, was quite a shock!

The NHS had recently changed its practices and decided they could diagnose coeliac disease with just the blood test results and had not let me know its outcome in the first place. After a long and painful few months, I finally managed to get a biopsy to receive a proper diagnosis, which confirmed I had coeliac disease.

Almost 3 years later, my life has completely changed. I rarely struggle with anxiety and depression, and I feel like a completely new person. I have had to constantly learn about methods of cross-contamination, like kissing my partner or sharing a drink. Every social eating scenario becomes a memory game of where everyone’s hands have been. I’ve had to learn to cook all my food and accept health risks when I want to eat at a restaurant. I think I try to deny it in my head sometimes, but honestly, my life revolves around this disease.

I am constantly thinking about being “glutened” About alternative medicines and how I can educate others on this life-changing disease. That is why my wonderful partner and I started our Instagram page late last year to give a coeliac and a gluten eater’s opinion on gluten-free alternatives and how accurate they are – something which we weren’t able to find online already.

I could talk about my experience with coeliac disease all day. Still, if I had to choose one topic to focus on, it’s the mental health side of the disease – something which I think there is not enough awareness of at all when it comes to those who have been diagnosed recently or food handlers in the hospitality industry. Gluten can have extreme effects on the body and mind, which include mood swings and emotional reactivity. When I have gluten, depending on the severity, I not only suffer extreme physical pain, but I can become very sad, grumpy, irritable, or anxious. Sometimes, it feels like the world around me is falling apart, and I think people need to be more aware that this can happen.