“Getting diagnosed can put you in a dark place, but Coeliac UK helped me so much. It was reassuring to hear other’s stories and not feel alone, which is why I wanted to give something back.” 

“My name is Jade Hall, and I live in Thornton near Blackpool. I work in a specialist school as a nursery nurse and I’m also a vocalist at the weekends.”

Being diagnosed

“I was diagnosed with coeliac disease in 2017 when I was 23 years old. My symptoms started when my partner and I moved to our first house in June that year. Within two weeks of moving I had a very upset tummy, but put it down being nervous about all the change. 

“I started to get poorly, catching lots of colds and flu like symptoms, and it felt like I was ill all the time. I contacted my doctor who arranged a blood test, followed by a biopsy, which confirmed I had coeliac disease, and meant I had to switch to a strict gluten free diet for life.

“I was told that, because of the damage to my stomach caused by eating gluten, it would take a while for my body to take in the vitamins I needed. This explained why I had been catching so many colds - I didn’t have the nutrients I needed in my body, and my immune system had been affected.”

Switching to a gluten free diet

“It was very overwhelming when we started looking into foods that had gluten in. I felt like I literally couldn’t eat anything I loved anymore. I’m a girl who loves her pasta and pizza, but now that was a big fat no no! 

“Having a family meal became more of an effort. Everything had to be planned out and thought about. It’s not just the food, it’s how it is prepared and it’s a lot of pressure to make sure you don’t have cross contamination in your own home, let alone in somebody else’s. I found myself feeling guilty, as I didn’t want my family to worry.

“Eating out was stressful too. I would ask for a gluten free meal that was stated as gluten free on the menu, and it would come with a naan bread on top, or chips that had been fried with gluten containing food, or something else that wasn’t suitable.

“In the venue’s eyes the problem could be fixed by simply removing the item from my plate. They didn’t understand the concept of cross contamination, and that eating the meal would make me ill even after the gluten item had been removed. Having to explain this to a waitress in front of family and friends was really frustrating. The knowledge just didn’t seem to be there.

“I think that the perception of the gluten free diet is that it’s a choice, which certainly hasn’t helped people with coeliac disease, as it means it’s seen as a fad rather than a necessity, and isn’t always taken seriously.”

Finding support

“Getting diagnosed can put you in a dark place, but Coeliac UK helped me so much in the first year of learning to live gluten free. I found the Food and Drink Information on their website really useful, and it was reassuring to read about other people’s stories and not feel alone.

“I have learnt to speak up and ask if I’m worried about how my food is prepared or what’s in it. My family are great at doing this for me too. I’d much rather take that extra minute and ask the question than be poorly for days after, and end up being in so much pain that I can’t move and risk causing longer term damage.

“I knew I wanted to give something back to the charity, which is why I started fundraising and raising awareness. I would go out in the interval of my shows at the weekends and talk to people about coeliac disease and why I wanted to raise money for Coeliac UK.  I really enjoyed doing this and can’t wait to get back to it when restrictions are lifted. So far I’ve raised over £3,500 for Coeliac UK and other charities, which I’m really proud of. 

“Needless to say, I’ll be taking part in Coeliac UK’s Challenge Week this May. It’s really frustrating when people don’t understand your requirements, and I want to help change things for the better. I’ll be posting what I get up to on social media, and you can follow me on Instagram @jadeesther.”

Help us shine a light on coeliac disease
Take part in Challenge Week like Jade, and support children and young people with coeliac disease.

Sign up

Other ways to support the campaign

You can also get involved by:

• Sharing our Awareness Week posts on Facebook, Twitter and Instagram. Use #ShineALightOnCoeliac to help us get the hashtag trending!
• Inviting friends, family and colleagues to take part in our activities.
• Updating your profile picture with our Twibbon frame.
• Making a donation to help us reach our £50,000 target and continue supporting everyone who needs to live gluten free.

Remember, the more we come together, the brighter we shine.