“I was very poorly as a child but no one ever got to the bottom of the problem. I was 33 when I was finally diagnosed with the help of my dentist. He noticed that my mouth ulcers were becoming a problem (let alone the tiredness, weight loss, and other coeliac disease symptoms I had). So he sent me off to Leeds General Infirmary (LGI) where they were doing research about coeliac disease and mouth ulcers. After the test, I was diagnosed and began my gluten free diet. Amazingly, the mouth ulcers disappeared within seven days and within 15 days, I put on 18lbs! Normal life began!

I found out about Coeliac UK straight away as one of the researchers at LGI, the late Monty Losowsky, was part of the charity’s founding group. I got involved with volunteering a few months after being diagnosed. Having experienced longer term problems from childhood, I realised that more young people could have needed help a lot sooner, just like me and my family. But there was no one there to help! So I set up a local group in Derby, where I worked, along with Dr Geoff Holmes, another researcher.

I’ve experienced a lot since becoming a Group Organiser in 1979. When we moved to Wokingham, I converted an established ‘Contact group’ for children in Reading into the Coeliac UK Berkshire Local Group. After serving as Chairman of the Coeliac Society in the early 90s (and helping develop the Coeliac UK we know today), I returned to the role of Berkshire Group Organiser until 2018. We had 2,500 members!

Over the years, a great part of my role was running gluten free food fairs, sponsored by manufacturers and local suppliers. It worked well for the Berkshire Group, so I suggested that Coeliac UK incorporate a food fair with its AGM, so that more people would attend and enjoy a day out too. Our first one was at Windsor Racecourse and it was a big success! From then on, the AGM moved around the country, and I was the Event Coordinator for each one. Being Event Coordinator means I need to liaise with Coeliac UK’s commercial partners to ensure we get a balanced turnout of gluten free suppliers, as well as local niche businesses. 

In Berkshire, I also got involved with the local hospital and university. I was the Patient Panel Representative for the Nutrition Committee of the Royal Berkshire Hospital in Reading, working to ensure all patients got a balanced diet during their time in hospital. I was also the ‘expert patient’ for coeliac disease for students at the University of Reading Pharmacy School, explaining why the pharmacist was my lifeline to keeping on a strict gluten free diet.

I live in Wales now, and have been invited by the GP surgery to be an ‘expert patient’ again and help train students from the University of Wales Medical School. I’m also a representative for Coeliac UK (Cardiff Group) on the All Party Working Group at the Welsh Assembly, run by Coeliac UK’s Devolved Nations Lead, Tristan Humphreys. This has helped ensure that people with coeliac disease in Wales can still get gluten free items on prescription.

I’m really keen to get big events up and running again as soon as it’s safe to do so. In the meantime, we have a local Facebook group that’s very active and regular Zoom meetings to keep in touch with members.

I have lots of experience of coeliac disease and time to give – sharing this knowledge is vital to help newly diagnosed people get help quickly. We also need to work with food manufacturers and healthcare professionals so that members know what gluten free food is out there and get the help they need with their diets.

My advice to anyone considering volunteering would be this: you know how you got on with being diagnosed – do you want that to happen to anyone else? Use your knowledge to help make a difference!”

A big thank you to Ian not only for sharing his story, but for the many years of brilliant volunteering!

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