#ShineALightOnCoeliac: Aimee Vivian’s story

Capital FM’s Aimee Vivian is helping us shine a light on coeliac disease this Awareness Week, from 9-15 May.

She’s joining in by sharing 100 songs to walk your dog to! We caught up with her to find out more about her coeliac disease story, and why raising awareness is so important.

What’s your coeliac disease story?

"Looking back, it started when I was 15. I went to the doctor with really bad periods and was put on the pill, but I continued to get ‘tummy problems’ for the next 10 years. I was in and out of hospital had every scan possible both internally and externally. What I’ve learnt is that the symptoms for coeliac disease are not only very similar to many other gastro problems, but also gynaecological problems, and they can mask each other. After 10 years in pain, going through uni and getting particularly ill after a night out Dominos, I suddenly realised the trigger. But it wasn’t until November 2015 that I was actually diagnosed with coeliac disease. I was glad to have the answer but it was daunting knowing a gluten free life is the only solution. I try to look at everything as a positive and see not only the obvious health benefits of being gluten free and not damaging my gut, but also the mental health benefits."

Why are you supporting the Coeliac UK #ShineALightOnCoeliac challenge for Awareness Week 2022?

"Because for me, it’s so important to spread awareness and for people not to have a 10 year wait for diagnosis like I did. Also the question I get asked so often when I’m out is “yes but are you actually gluten free or just jumping on the trend?” The stigma attached to this type of mindset can be very dangerous for people like myself, who are extremely sensitive to gluten. It is also internally damaging and being gluten free is not our life choice, it’s a choice that was made for us that we have to live with to survive.

I am always checking the Coeliac UK website for Gluten Free Accredited restaurants. It also has some really helpful information, especially if you are just starting out on your coeliac journey."

What are your top gluten free tips?

"Don’t be afraid to double check and triple check everything if you are unsure. Going to a restaurant can often be a daunting experience, worrying that other people won’t understand. My feelings are now it's ok not be ok, and if you aren’t convinced something is gluten free ask and ask again. Most places in the UK are really accommodating.

Also, check the chips! I see so many places offering chips with GF next to them on the menu. If you didn’t know you could just order, however time and time again I ask “are they actually gluten free and cooked in a separate fryer?” and the answer is “no, they aren’t but the ingredients are gluten free”.

It’s very dangerous to label these as gluten free as cross contamination can cause just as serious reaction as eating pure gluten."

Favourite dog walking song?

"Oh gosh that is really hard! At the moment it’s something like Stormzy and Dave Clash or anything Justin Bieber."


Aimee’s 1 in 100 challenge to #ShineALightOnCoeliac is to share 100 songs to walk your dog to! Find her on social media @aimeevivian to support her.

What will your 1 in 100 challenge be? Whether you do 100 press ups or get creative like Aimee, you can help make a difference for the people who need us.

Find out more and sign up

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