This Coeliac Awareness Week (June 7-13) we 'dived behind the label of coeliac disease and gluten free for life' to show Kiwis that this is a serious auto-immune condition and that a 100% gluten-free diet is the first-line, lifelong treatment – it is not just a trend.

This message has been captured well in a film 'Glutened' that Hayley Repton (filmmaker, and editor based in Manchester UK) sent Coeliac NZ earlier in the year.  We share this video and Hayley's journey with coeliac disease as a reminder of the challenges that people have to overcome to manage this life-long condition. 

Hayley Repton's story

" I love to learn something new every day and believe in the motto that if you work hard doing what you love, you never really work a day in your life."

I was diagnosed with coeliac disease in April 2019. The day I was told, I felt like I had been slapped around the face with a wet fish. Fortunately for me, I didn’t have many of the typical symptoms, but it was found by chance through another blood test, which led to the endoscopy and biopsy to confirm it. I just knew I had to put the diagnosis to good use and raise as much awareness as possible. Within a couple of weeks, I started to draft ideas and I began writing the short film ‘Glutened’.

After the diagnosis, I had followed a lot of coeliac support groups on social media and many of the coeliac members were posting about the anxiety around social events. It was clear that some coeliacs were surrounded by people who don’t take the autoimmune disease seriously or think that its ok to take ‘cheat days!’ Oh no, no, no! That was a major driver for me to make the film, with the aim of giving these misunderstood people a stronger voice. I wanted to make sure that I portrayed a large proportion of their stories through the one character. That was really important to me. I believe that sometimes getting a point or emotion across to someone verbally, doesn’t necessarily have the same impact as showing them something through sound, vision and storytelling. Most of the content I have seen out there is focused on the physical, rather than the effects that coeliac disease can have on someone mentally.

There were many different creative ideas and many ways to tackle the subject, but I was finally happy with the vision. It is a rhythmic, short film which expresses the impact that everyday life has on a newly diagnosed coeliac and how she discovers her own tempo. The main character Holly is an Irish woman who takes the treatment following diagnosis seriously. This means she has to say goodbye to all thing’s gluten, and this sudden lifestyle change takes her on a turbulent journey; with a mix of frustrating occasions, a splash of envious times and a sprinkling of light-hearted moments. It covers supermarket shopping, social gatherings, reminiscing on spontaneous times and everyday food prep. The film also highlights the importance of taking cross-contamination seriously.

Sound design plays a big part in the film. I wanted the audience to be with the character throughout, as though they were stepping into her shoes. At times, we hear Holly’s inner body sounds as I wanted the viewer to totally immerse themselves into what the character was feeling and experiencing. The rhythmic effect throughout the film also reflects the planning and incessant vigilance a coeliac must have in their everyday life.

When making the film there were times of doubt and I was anxious about releasing the film, but it’s had positive reactions from companies and charities across the globe. I’ve received hundreds of messages of appreciation from coeliacs saying that they laughed, cried and that they can use it as a tool to share with people who are not taking it seriously or who are unfamiliar with coeliac disease. This response from the tight-knit coeliac community makes me eager to make more. I am extremely grateful to everyone who was involved and played a part in some way. Hopefully, this is the first, but not the last film I produce on the subject as there are still so many stories to tell and many ways to do it. Watch this space!

Hayley Repton, a filmmaker, and editor based in Manchester UK and has carved out a strong identity in the industry with her high energy cuts, fused with sound and rhythmic connection. She shares with Coeliac NZ why making a film to encourage people with coeliac disease to find their inner voice,  followed her own personal journey.

Watch and share the movie on vimeo.com/486284734