“I was diagnosed with coeliac disease at the age of two. My mum has also had it from a young age, so when I started having stomach problems and falling asleep during meals, she did suspect it. Unfortunately, it took a lot longer to get the GPs to agree. They all believed I had a virus even though my mum kept mentioning coeliac disease. I do feel lucky to have had it from such a young age – while it proved challenging growing up and being different to everyone else, I never had to adapt to eating differently so there are no gluten products that I miss.

“My mum has been a member of Coeliac UK from the beginning in 1968, and her mum used to volunteer at their local Cleveland group. She likes to share with us that when her mum was unable to bake gluten free bread, she used to have to eat (disgusting) gluten free bread from a tin. I’m so glad the gluten free products have moved on from that!

“My dad was diagnosed at the age of 50. About a year later, my paternal grandpa was also diagnosed with coeliac disease at the age of 80. It actually makes family meals easier now because we can just do everything gluten free!

“Funnily enough, we found out my dog, Rolo, was allergic to gluten just after my dad had been diagnosed. The vet did think it was strange when my parents started laughing when we got Rolo’s diagnosis!

Other autoimmunity

“My dad and I both have other autoimmune conditions as well. I have ulcerative colitis and was diagnosed at 20, whilst my dad has Multiple Sclerosis (MS).

“I started developing symptoms that I would have associated with eating gluten – like stomach pains, increased urgency and frequency going to the toilet and anaemia. I went to the doctor and told them I was having coeliac problems, but I was definitely sticking to my diet. After running blood works and other tests, they concluded that something else was probably going on. Since I was so poorly, I was referred to a gastro team at the hospital. I had to have both an endoscopy and a colonoscopy. It was confirmed that I had ulcerative colitis, and I was given medication which I still take today. I’ve had plenty of mild and severe flare-ups over the years, but for the last 18 months it has been relatively stable.

“My dad started getting dizzy in his 20s, but he was only diagnosed with MS at 35 when he developed numbness in his legs and problems with balance. New symptoms have emerged but they have been manageable with medical support and lifestyle adjustments.

 

Coeliac UK has helped me in so many ways – many without me realising. When I was younger I used to hate going to birthday parties, as I would always have to bring a packed lunch. At friends’ houses, I always managed to get fed gluten and I cannot count the number of times I have been asked whether I can eat rice/potatoes/vegetables. But increased awareness and the GF accreditation mean I am able to eat a huge variety of food out now which is great, and I don’t feel like it hinders me anymore. Going out for food with my friends is now one of my favourite things to do. My mum, who had never had pasta at a restaurant until she was in her 40s, still gets really excited when there is even one thing on the menu that is gluten free.

“I have loved going to gluten free food fairs. I used to go a lot when I was younger and it was like heaven. I’ve also always felt so reassured to know that support is there through Coeliac UK, even though my household is used to eating gluten free and rarely have problems.

“My mum also reminds me that Coeliac UK was a lifeline when she was diagnosed, as there was very little information on coeliac disease and no support from healthcare professionals at the time.

“I am so pleased to now work for Coeliac UK, as I have always wanted to help other people. I have a good understanding of the challenges posed by coeliac disease and about the coeliac community. My family had been lucky to have had the support of Coeliac UK, so I wanted to give something back. My background is in Economics and Policy Analysis, so I enjoy analysing research and evidence to make policy decisions.

My role is very varied; I am new to it and still finding my feet. I work within the Evidence and Policy team, contributing to the evidence base to inform charity policy positions and the charity’s strategic planning. I also provide support on various projects encompassing devolved nations, food, and health policy which will then benefit the coeliac community. I am excited to see where the role takes me!”

Thank you to Fiona for sharing her coeliac disease story. What’s yours? Share with our amazing gluten free community on Facebook, Twitter, and Instagram or become a case study today!