Coeliac Awareness Month: ‘Coeliac disease forever changed my life’

Laura says being diagnosed with ‘Coeliac disease forever changed my life.”

Speaking to the Wren Project for Coeliac Awareness Month, Laura said her long journey to diagnosis meant she “became petrified of food” and is still “battling with my relationship with food ten years later.”

“I have definitely had huge challenges around my disease,” Laura told Wren. “As I avoided so much when I was undiagnosed, my diet was very poor. Being told to cut out gluten made things decline further.”

Laura revealed she first started having symptoms of Coeliac disease aged three, but it wasn’t until she was 17 years old that she finally received a diagnosis.

“[When I was three], I started having symptoms; stomach problems mainly, but also a bit of dermatitis,” she explained. “With coeliacs in the family, my mum cut gluten out of my diet before taking me to the GP. When it worked and I got better, we went to our GP and asked for a Coeliac blood test. No one told us though that you have to be eating gluten in order for the test to be positive, so I had a false negative.”

The negative test meant that Laura started reintroducing gluten into her diet and just “accepted it must be a slight intolerance.” But by the time Laura turned 10, the situation worsened and she had stopped growing.

“At this point, I had been living undiagnosed for years and had become an extremely picky eater as I avoided everything that made me ill and I hated food,” she explained.

“There was a lot going on at home at the time, so my GP diagnosed me with stress-induced IBS,” she said. But by age 17, Laura’s health condition escalated. “I was in the middle of my AS Biology exam when I had a terrible pain in my tummy. I hadn’t been feeling well all day.

“I ran out the hall and the school nurse sent me to A&E with suspected appendicitis, but tests showed an impaction in my bowel. I was given treatment to clear it and then investigations afterwards showed Coeliac disease.”

Laura explained that having such a traumatic journey to diagnosis as a teenager caused her to develop food anxiety and later, an eating disorder.

“I became petrified of food, especially after such a painful, dramatic and, for a teenager, embarrassing way of being diagnosed,” she told us. “I lived off fruit and yoghurts and started to quickly lose weight. 

“After only a couple of months, I was diagnosed with food anxiety and anorexia and am still battling with my relationship with food ten years later.”

Receiving her a diagnosis of Coeliac disease as a teenager meant that she had times when she “rebelled” against her disease so she could join in with friends. 

“I would have ‘gluten cheat days,’ thinking a little bit won't hurt,” she said. “I was so wrong.

“Even a little bit damages the body further and now I have two secondary autoimmune conditions and irreversible damage to my GI tract causing permanent malnutrition. 

“My biggest regret is having those ‘gluten cheat days’, I joined in with friends to not feel left out or like the weirdo of the group but it was not worth it. You do not need to risk your health for social FOMO.”

Laura discovered the Wren Project on Instagram and reached out for support around managing her disease and her food anxiety.

“The project was amazing and supported me through so much,” she said. “They listened to my worries and prompted me on how to problem solve. 

“This way, I managed to allow my Nan to cook for me, persuaded my family to have a fully gluten free Christmas so that I could join in, and I even travelled to Australia, Bali, Tokyo, Seoul, Beijing and Ho Chi Minh whilst managing my disease with the help of the project.”

Laura, who has been living with her Coeliac diagnosis for 10 years, said “Coeliac disease [has] forever changed my life.”

“It wasn’t just having to eat gluten free,” she explained. “It meant not being able to go for food with friends if the restaurant didn’t cater for me; eating differently to my family at Christmas; bringing a packed lunch to a wedding… Having to wait 20 minutes to kiss my boyfriend after he’s eaten.

“It sounds extreme, but even a crumb is my enemy so I have to be vigilant. When food becomes your poison, you realise how much life revolves around it and how much you end up missing out on.”

Laura said she would like people to understand that Coeliac disease is an autoimmune disease, not an allergy.

“A tiny crumb is enough to cause symptoms and damage our bodies,” explained. “We are not being fussy or awkward; it’s a medical need. We are trying to keep ourselves safe.”

Thanks to support from the Wren Project and the gluten free community, including her local support group, Laura feels “less isolated and alone.”

“It was the best thing I did,” she explained. “Speaking to others made me feel less isolated and alone. It allowed me to learn how to manage situations like Christmas and eating out and it gave me a community where I wasn’t the ‘odd one’ or ‘fussy one’, I could just be Laura.”

Laura, who spoke to the Wren Project for Coeliac Disease Awareness Month, said she would like others living with a Coeliac disease diagnosis to know that it “doesn’t have to limit your life.”

“You can live an amazing life being gluten free, I promise you that, because I have done things this last year I never thought I’d be able to.

“You’ll learn your new normal, you’ll advocate for yourself and your friends and family will support you through it. Coeliac disease doesn’t have to limit your life if you don’t let it.“

Laura’s story is part of our #WrenVoices campaign, where our Wrens share their personal experience of life with autoimmune disease. Would you like to share your story in our Wren Voices campaign? Get in touch here.

Here at the Wren Project, we are here to support you. If you or someone you know could benefit from our free, one-to-one listening support sessions, please get in touch here for support.