My coeliac disease story: Emily Hampton

Coeliac UK’s Head of Food Policy, Emily Hampton shares her coeliac disease story and tells us about her work in the Evidence and Policy team.

2020 - Christmas Raffle - Emily Food Policy Officer“You might have already read my colleague Sam’s blog post about his diagnosis story, and mine’s not too dissimilar. Of course, you don’t have to have coeliac disease to work at Coeliac UK, but it definitely helps to have that experience.

“It’s hard to pin point the exact age my symptoms began, but I first started getting gut symptoms around the age of 12. The symptoms fluctuated, so it made it difficult to figure out what was causing them, and if anyone asked why I wasn’t feeling well I’d just say I had a dodgy tummy. Between the ages of 12 and 18 I was able to manage the symptoms, and did my best to hide them when I wasn’t at home.

“It wasn’t until I started university that other symptoms started to creep in and have a bigger impact on my life. The most significant symptom was my low energy levels - I was constantly aware that everyone else seemed to have so much energy, yet all I wanted to do was sleep and I couldn’t understand why.

“My university experience wasn’t turning out the way I thought it might. I would often skip going out with friends as I knew the next day I would struggle to stay focused and awake. Even after a good night’s sleep I would still feel foggy, which made concentrating for long periods a challenge.

“It was when I decided to donate blood for the first time that I found an answer to my constant tiredness. Unfortunately, I wasn’t able to give blood, as after a quick test my iron levels were looking a bit low. I was advised to book a doctor’s appointment and unsurprisingly, I was anaemic. The doctors attributed this to my university lifestyle and not eating enough dark leafy green vegetables, so off I went with some iron tablets.

“Despite this, my health kept getting worse - I couldn’t walk home from lectures without needing to visit a toilet, I was constantly tired, I had mouth ulcers, frequent headaches, migraines and always seemed to look quite swollen and bloated. I’d simply had enough, so the summer I finished university I went back to the doctors and explained all of my symptoms and they tested me for coeliac disease.

“Finally having a diagnosis for all these symptoms was such a relief. I can’t lie and say I wasn’t a bit upset about having to give up my favourite foods, but getting my health back on track was far more important.

“Like Sam I’m also a really foodie at heart and didn’t want to let coeliac disease get in the way of my passion. I went back to university to study a masters in Nutrition and Food Science and then started a career in the food industry as a Product Developer, but unlike Sam, I didn’t eat the foods which contained gluten.

“I have been working as Head of Food Policy in the Evidence and Policy team at Coeliac UK for the past two and half years. My role is to ensure information on food and the gluten free diet is up to date so we can support the gluten free community with the latest information.

“I also provide the technical support for Coeliac UK’s food safety schemes, our GF Accreditation and our Crossed Grain trademark scheme. When I was first diagnosed, I was so worried I wouldn’t be able to eat out safely with friends, but Coeliac UK’s GF Accreditation scheme was a lifeline. I knew I could trust these venues when eating out so it’s really satisfying to be part of the team working on this now, helping others like me who need to live gluten free but don’t want to miss out.”

If you’ve been experiencing symptoms like Emily’s, why not take our online assessment? It can help you to understand if you should be tested for coeliac disease, providing a yes or no result that you can discuss with your GP.


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