Melanie Persson can easily recall the day she was told that she had coeliac disease. Though it was a good five or six years ago, the memory of that moment is still crystal clear.
“I absolutely remember it. The gastroenterologist said, ‘Look, I don't even need to see the results; I can tell you definitely have coeliac disease — there’s a lot of internal damage going on’. It was especially a shock because I was completely asymptomatic at the time,” Persson tells Refinery29 Australia.
She says that it felt like a “punch in the gut” — the irony being that the autoimmune condition literally damages the gut. “It was a shock to learn that my favourite food is doing so much damage inside,” she says. “I think for anyone who is a foodie… it can be really quite traumatic.”
But the Perth-born contestant is now at a place where she is treating her diagnosis as less of a setback, and more as an opportunity to experiment and grow in her expertise, which has led her to this year’s season of Masterchef. Watching herself on telly has been a “really bizarre” experience, Persson says, not only because she’s been a huge fan of Masterchef for years, but because she’s representing the coeliac community.
As someone who was also diagnosed with another autoimmune condition at a young age, Hashimoto's disease, she’s well aware of the barriers that come up against people with chronic, often invisible, illnesses.
“There's a bit of a social stigma around gluten-free cooking and eating, not only that people assume it's bland [and] disgusting, but also the rising popularity of gluten-free diets… meant that a lot of people were viewing it just as a fad,” she says.
“Now it’s very much like, ‘please take this seriously because a couple of crumbs can make me really, really sick’. It's not only the physical illness experience[d] immediately after it, but it also does damage internally every time someone with coeliac disease eats gluten, and increases the risk of numerous cancers and lots and lots of scary stuff. And that's not even considering the week or two of lethargy and general muscle pain and exhaustion that happens after that initial ‘glutening,’” she says, laughing at the terminology.
"I get quite emotional thinking about it because food was such a huge part of my life... For maybe a year or two, I felt really defeated. You know, there was no joy in food. There was no joy in cooking."
While Persson can speak lovingly about being gluten-free now, the journey towards acceptance wasn’t smooth sailing. “I get quite emotional thinking about it because food was such a huge part of my life," she recalls. "I remember sitting in the office of my gastroenterologist, and she's telling me all these things I couldn't eat and everything that contains hidden gluten. I'm just sitting there [thinking], ‘Well, wait a minute, my whole world has just been turned upside down’. For maybe a year or two, I felt really defeated. You know, there was no joy in food. There was no joy in cooking.”
Even the joy of watching Masterchef became tainted with a bit of sadness; it felt like her pipe dream of going on the show became even more distant. “I’m quite a competitive person I think and eventually I just got sick of not being able to eat all the foods I love,” she says.
If this was a Hollywood blockbuster, this is where the training montage would begin, with a punchy rock soundtrack. “Now, every time I have a setback, it's like, damn, ok, what went wrong? How can I fix that? Now there's this excitement in figuring out how to do it better. Every time I nail something, it’s exciting,” Persson says, reminiscing on the time she nailed dumpling wrappers after 50 goes.
As a PhD candidate, this perseverance and openness to failing serve her well. Her research focuses on representation in children’s literature (hence her fitting @theveryhungrycoeliac Instagram username). She shares that the support she’s received from the coeliac and gluten-free community has “completely blown [her] expectations out of the water”. A scroll through her Instagram comments proves that, with hundreds of people sharing their coeliac pride.
“To hear that people who have children who are as young as five, six or seven [with coeliac disease], who are watching and excited to see themselves represented on TV really hits home,” Persson says. “It means a lot to me.”