Eleanor's Story of being diagnosed with coeliac disease In 2009 at 14 years old.
Laura was first diagnosed with coeliac disease in May 2014, age 17.
When were you diagnosed with coeliac disease?
I was first diagnosed with coeliac disease in May 2014, age 17, following biopsies from an endoscopy and flexible sigmoidoscopy.
How did you feel about the diagnosis?
At first I was relieved we had an answer to my health problems, as I had been suffering since I was 3 years old. After the initial relief of diagnosis, however, I started to worry as I was told to ‘just not eat gluten’ but gluten was in everything. I became petrified of food as I didn’t want to get ill again and that led to a long road of physical and mental health implications. For 8 years following my diagnosis I felt so lost and unsupported, with little knowledge on what coeliac disease was. I felt like a burden for being diagnosed with something so complicated, and I felt very alone. The diagnosis didn’t just affect me but everyone around me, we all had to make changes and I felt so guilty for being the cause of that change.
How did you find adjusting to a gluten free diet?
The adjustment to the gluten free diet was extremely difficult. When I was first diagnosed there was very little choice in the supermarkets and I did not know about cross contamination risks or ‘may contain’ warnings. It took me around six months to get use to checking the labels on everything and only in the last year have I learnt how to manage cross contamination. It’s been a big learning curve, for me and my family and friends. The worst part though, was the ‘being different’ and the missing out. I was diagnosed as a teenager and all I wanted to do was fit in with my friends. I wanted to eat the same foods as them, join in on the same experiences etc. I saw the gluten free diet as a barrier to that, so accepting that I needed to live strictly gluten free was the hardest part. Things are better now and with more safe choices in shops and restaurants, I feel that ‘missing out’ feeling less. Switching to the gluten free diet has definitely been a long process, with lots of mistakes along the way, but I got there in the end.
If you take a prescription, how did you find setting it up?
I learnt about the prescription service only last year after finally getting to work with a dietician. I was told to try trial boxes to see which I preferred. Having found a preference for the ample choice Juvela provided and the excellent quality of the products, I sat with my dietician and made up a prescription according to my monthly units. I found the process very easy and got very excited having gluten free food delivered to my door
What is your favourite Juvela product / recipe?
My favourite Juvela product is definitely the Pure Oats, although it’s hard to choose! Before receiving my prescription I had very boring breakfasts, now though, I love using the oats to make so many fun things. Whether it be porridge for breakfast or oat muffins as a snack, the Juvela oats are so versatile and delicious!
Do you think it's important to have a coeliac disease diagnosis?
I do think it’s important to have a diagnosis. Although there are stereotypes that come with that ‘label’ and you can feel the burden of the condition. The diagnosis helps you realise that 1) your body will heal and your symptoms will go away once eating gluten free, and, 2) that the gluten free diet is a medical need. I have felt the burden of the label but I’ve also felt the power of it. It’s helped me understand why I got ill in the first place, how to look after myself and how to advocate for myself when out. If I ever get approached by people who tell me the stereotypes such as ‘a little bit won’t hurt’, I can use my diagnosis to defend my diet: “coeliac disease is a serious auto-immune condition and my diet is my medicine, not choice!”.
What advice would you give to someone who is thinking of asking their GP to be tested for coeliac disease?
If you think you should be tested for coeliac disease, do it. The answer will be one of two; yes or no. If a yes, then you’ll know at last what’s been causing your symptoms and how to get better. You’ll prevent the disease causing any more damage to your health and start to live your life. If a no, then there’s no harm done, you’ve ruled out one disease and can look for an answer elsewhere. It’s always better to be safe than sorry!
What advice would you give to someone newly diagnosed with coeliac disease?
If you are newly diagnosed, firstly; breathe. It can be overwhelming at first, with so much to learn and so much to change but I promise you it’ll be ok. Contact coeliac disease charities, get talking to others in your area. Educate yourself and those around you and most importantly, be kind to yourself. Living with coeliac disease can be tough and none more so than when you are first diagnosed. So, be gentle with yourself, you are doing the best you can in difficult circumstances.