Elle’s Story – Eosinophilic Oesophagitis

Tell us about you! 

I’m Elle, I’m 19 years old and I currently live with my parents, sister and toy poodle, Huxley. In September, I’ll be moving out to go to University, where I was going to be studying Drama but more recently I’m hoping to switch to Speech and Language Therapy. 

When did your symptoms begin? 

At the time my symptoms began, I was taking oral immunotherapy for my allergies as I suffer from severe hayfever. I had a really weird sensation in my throat, which felt like a swelling.  

Then, lockdown came and we think I caught a virus (possibly COVID-19). I was really poorly for a week and from then, I don’t remember feeling better again. I’d forget to eat regularly, as I had no appetite. I had also began experiencing a difficulty to swallow, nausea and abdominal pain. I realised I’d started avoiding foods like meat, as they were difficult for me to swallow and would take me a long time to eat. 

I missed my A-Level exams due to issues with my skin, where I was put into isolation. 

In August 2020, I started choking on some chicken and it was so frightening. My dad managed to dislodge the chicken by the Heimlich manoeuvre, where the chicken became lodged between my trachea and oesophagus. I was blue lighted to resus at A&E. 

How did you feel after you returned home from hospital? 

After my frightening choking experience, my whole family were desperate to get answers. I was lost and confused. Getting a referral to a gastroenterologist proved really difficult as COVID was rife, so in the end my family decided to go private. The paediatric gastroenterologist that I saw suspected I had Eosinophilic Oesophagitis (EoE) during my first consultation in 2021, and an endoscopy (where a sample of tissue from my oesophagus was taken) confirmed the diagnosis. 

How did it feel to have a diagnosis? 

I wasn’t too shocked because after my gastroenterologist had suspected EoE, I remember reading the symptoms and thinking that it sounded right for me. On the same day, my family went out for lunch together, as I knew I wouldn’t be able to do that much in the future. It was a relief to finally know the cause, but the future ahead seemed daunting. 

How are you doing now? 

Part of my diagnosis process involved doing the elimination diet with six different food groups, which is a very difficult and long process. For anyone else who is going through this process, please don’t blame or punish yourself if you make a diet mistake. It feels impossible at first, but will get easier with time. Reach out to charities like Guts UK and the EOS Network. 

I still don’t have any clear answers on what I can and can’t eat, but I’m hoping the tests that the NHS team looking after me are doing might give me more answers soon. 

Why did you decide to walk a marathon in 3 days for Guts UK? 

My friend, Scarlett, and I took on the challenge of walking a marathon in 3 consecutive days for Guts UK Charity. On my journey to diagnosis, I realised that there are so many digestive diseases that are all underfunded, despite your digestive system being such an important part of your body!  

My sister has Coeliac disease and my friend has Crohn’s disease, so I know these conditions change people’s lives forever. I wanted to support Guts UK because they work on the whole digestive system from top to tail. I wanted to fund more research, awareness and medical advancements that could help me and the many others like me. 

Thank you so much Elle for choosing to help the millions of others in the UK affected by digestive diseases, just like you. You can fundraise for Guts UK today, and help the UK get to grips with guts. However you choose to support Guts UK and our community, we’ll be with you every step of the way. Thank you.