Where did your idea for Glutened start?

“I was diagnosed with coeliac disease in April 2019. After the diagnosis, I followed a lot of coeliac disease support groups on social media and saw many of the members were posting about their anxiety around social events. I read far too many stories about being surrounded by people who don’t take the autoimmune disease seriously or that think you can have cheat days, or that you’re are overreacting and being fussy. 

“I feel that there are a lot of misconceptions associated with coeliac disease. Many people don’t take cross contamination seriously because they’re just not aware of the internal damage gluten causes. 

“This fueled me to make the film, with the aim of giving these misunderstood people a stronger voice. Most of the content I have seen out there is focused on the physical effects of coeliac disease rather than the mental toll it can take, so I wanted to make others step into the shoes of someone with coeliac disease.”

Can you tell us more about your experience of symptoms and diagnosis?

“Initially I went to the doctors feeling fatigued. I was anaemic despite having a decent diet, and further blood tests indicated coeliac disease. I then had an endoscopy and biopsy to confirm my diagnosis.

“At first I was worried about not being able to be spontaneous anymore, having to constantly plan ahead and how it would affect travelling abroad. It was going to be a drastic lifestyle change. But then I had a word with myself and I started to think about the positive aspects, like how much better I would feel when I cut out gluten.”

The main character in your film struggles with not being able to enjoy the same pizza as their friends. How do you think being gluten free affects a person’s social life?

“Food and drink are a major part of our social lives, and having coeliac disease can make you feel self conscious in certain situations. Pulling out a lunchbox isn’t always the most ideal, but I would rather eat something that I know is safe and enjoy time with friends than sit there worrying about whether anything has been cross contaminated.

“In the film, I wanted to show that the character felt a little self conscious but didn’t want to draw attention to herself. As the character was newly diagnosed, I also wanted to show a couple of flashbacks to when she was able to freely enjoy gluten. There was a scene coming out of a kebab shop with her friends and drinking beer at a party. This was to highlight how quickly her lifestyle has changed and that she had no choice but to adapt.”

There’s also a scene in which the character is accidentally glutened, despite telling staff they have coeliac disease. Is this something you’ve experienced yourself?

“Thankfully not, however someone once served me a can of beer that they were adament was a gluten free beer. I wasn’t convinced, so I googled it and found out it was vegan, not gluten free!

“I’m lucky enough to be surrounded by supportive loved ones, friends and colleagues. I do feel a little on edge in a restaurant sometimes and wonder if all the stages from taking the order to the final delivery will be okay. Do they understand cross contamination? Am I being a pain? Am I drawing attention to myself?

“It’s music to my ears when the wait staff ask if you have coeliac disease rather than if you’re gluten free. It gives you confidence that they understand how gluten affects you and that extra care must be taken. Another great one is when your food comes out separately with a red flag or gluten free label. You know that it’s definitely your order and it’s unlikely there has been any confusion in the whole process.”

What is the significance of the jenga falling down in this scene?

“The jenga symbolises the progress and building back of health once the gluten free diet begins. The planning, the sacrifices and the effort that goes into being careful are intercut with this jenga game. When it falls down it represents what’s happening to her health and the fact that she is then going to have to rebuild it. One little mistake and it all comes crumbling down.”

As lockdown eases, how are you feeling about eating out again?

“Overall I’m feeling positive and I'm looking forward to it. I’m getting rather bored of my cooking now to be honest! Living in Manchester there are plenty of places I can trust and that my friends love too, but if I travel to an unfamiliar area, I am likely to have a little anxiety.”

How do you think venues can improve their service for gluten free customers?

“I’d love to see more venues with dedicated fryers and food preparation areas where possible. They should provide full training which highlights the difference between someone that is sensitive to gluten and someone with coeliac disease for both the kitchen and the wait staff.

“When it comes to allergen folders… I’m not sure how I feel about them! Sometimes they are okay, but once I was handed one and it was really difficult to navigate. I ended up ordering a kids meal by accident and I looked like I had just bought my homework out with me. 

“A lot of places already ask on entry if you have any dietary requirements or allergies. This makes you feel normal and that plenty of other people have food requirements too.

And like I said earlier, I like the gluten free flag some places stick in your food. It means you don’t have to think “Oh gosh, is this gluten free or have I got someone else's meal?”

How can friends and family support someone who’s gluten free?

“Let them bring their own food if it makes them feel more relaxed. Don’t draw attention to them or make them feel like they’re being finicky. Let them be the first in the queue at a buffet before the cross contamination happens (I love this one). If a friend or family has prepared food, they should reassure the person that it was prepared in a dedicated space and also to say what ingredients were used. Overall, just knowing that friends or family understand that coeliac disease is a serious autoimmune condition can put your mind at ease.”

Finally, how has the film been received? What kind of feedback have you had and what do you hope it will achieve?

“When making the film there were times of doubt and I was anxious about releasing it, but its had positive reactions from companies and charities across the globe. I’ve received hundreds of messages of appreciation from people with coeliac disease saying that they laughed, cried and that they can use it as a tool to share with people who are not taking them seriously or who are unfamiliar with coeliac disease.

“Hopefully the film will give teenagers the confidence to express themselves – they can show it to their friends to allow them to empathise. At that age it may be difficult to open up about such things. It’s also a very sociable age where food is involved.

“I would also absolutely love for hospitality wait staff to watch it and teachers too, along with many others. The more understanding the better!”

“I am extremely grateful to everyone who was involved in making the film and played a part in some way. The response from the tight knit coeliac disease community makes me eager to make more films like this. 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 different ways to do it!”

Watch and share

Watch Glutened on Vimeo, and don’t forget to share it with your friends and family via Facebook, Twitter and Instagram, to help raise awareness of coeliac disease.

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