“I was born in 1943 pre the National Health Service (NHS). I was very ill as a baby and my mother was advised by doctors that my life expectancy would be short. I was hospitalised frequently and was one year late starting primary school. 

As I got older, I had periods of ill health. I had considerable skin problems which involved hospitalisation and I always felt hungry.  

I was married in 1967 and if my wife and I were going out for a meal, I could eat a full meal beforehand and then eat another full meal and still not feel satisfied. All whilst losing weight, which was a real worry. 

When I was 32, at just over 7 stone, I collapsed one night and was admitted to Dumfries Royal Infirmary. This was a real shock to my wife.  

Fortunately, I have a brother who is quite a bit older than me and is a doctor. He did his thesis on my illness and was able to advise the hospital on the condition. I was formally diagnosed with coeliac disease in 1976 and placed on a gluten free diet. 

That was when the next challenge started. Shops, hotels and restaurants at the time had never heard of coeliac disease and the gluten free diet. Eating out was very difficult and meals tended to be very plain. Shopping took hours as we had to read every single product label and my wife, who enjoyed cooking, had to completely re-evaluate our meals. We had a caravan which gave us many happy holidays but going to a hotel or travelling abroad presented further challenges. 

The gluten free bread at the time came in small red oval tins. It had to be toasted to have any semblance of enjoyment. If left too long in the toaster it did not burn - it bubbled like plastic! There was nothing else available. 

Once on the gluten free diet my weight quickly improved, my skin looked healthier, my energy levels returned and my constant feeling of hunger disappeared.  

I am now 80 and I'm in good health and physically active. I’m pleased to say that although there is still much work to do, shopping, eating out and going on holiday is so much easier than it was. There is far greater general awareness of the condition and none of this would be possible without Coeliac UK. Their work has helped me and so many others in recent years. I just wish they had been around in 1943!” 

Thank you to Ian for sharing your story with us, we’re sure many of our community will relate to the struggles you faced growing up with coeliac disease.  

In the years since Ian was diagnosed, Coeliac UK have worked hard to change the world for people who need to live gluten free. Our mission is simple: to make life better for people with coeliac disease. We do this by providing trustworthy advice and support via our free to access services such as our website and helpline, we deliver community support and information packages to our members and we work with healthcare professionals to improve diagnosis of coeliac disease. We also fight for better availability of gluten free food, fund critical research into the disease and keep the community safe with our flagship food safety schemes. And we do it all so that one day, no one’s life will be limited by gluten. 

Wherever you are on your coeliac disease journey, we have support and resources to help. Check out what is available in your gluten free hub. If you’re not a member yet, you can join now to access trustworthy tools and services and connect with an amazing community.