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How my son's diagnosis of coeliac disease changed our lives

MasterChef winner Jane Devonshire talks to Emily Goddard about how changing to a gluten free diet transformed her son's behaviour as a toddler and why she is a big supporter of the Coeliac UK charity

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Winning recipe: Jane Devonshire

Winning recipe: Jane Devonshire

With her MasterChef trophy

With her MasterChef trophy

In Belfast for an event

In Belfast for an event

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Winning recipe: Jane Devonshire

Retreating from the abject tragedy and physical threat of the coronavirus pandemic is all but a dream for most, wherever in the world they might live. For some, the lockdown has offered a rare chance for reflection and time spent with loved ones. Even if that does sometimes involve playing referee to bored teens driven to squabbling, Jane Devonshire feels fortunate.

The chef's family are safe and well, and there is palpably little else more important to her. "It's a horrible situation, but I feel incredibly lucky," she says.

"Where we are in Hampshire, we're shielded from the worst of it, we've got a nice garden and we can walk out into beautiful bluebell woods. I speak to my parents in London and it's a different story."

This is not the first time Devonshire, who won MasterChef in 2016, has felt grateful for making Hampshire her home. The move south when the youngest of her four children, Ben, who is now 17, was two years old proved life-changing.

Before the family relocated, Ben screamed "all the time", looked unwell and could not be taken to toddler clubs because he would bite people. Devonshire knew instinctively that something was wrong, but visits to the doctor proved futile.

She recalls feeling as if the GP presumed her child was fractious because she was not coping.

"I was going to a doctor who was almost dismissive of it," she says. "'Of course you're exhausted, you've got four children [the doctor would say]'. He was reaching to give me the Prozac. I was not stressed by having four children; I was stressed because I had a sick baby."

The move meant a fresh start and a new family doctor - and he, Devonshire says, was excellent.

"He sat and he listened. He referred us and within about three months we had a diagnosis. It turned out it was coeliac disease. Within weeks, the difference in Ben [was profound] and now he is probably the most chilled of all my children. He's so laid back, he's so kind, he's completely different to the child you would have seen."

Devonshire knows her family is not alone in having to overcome barriers to receive a diagnosis for coeliac disease.

The underdiagnosis of this lifelong autoimmune condition is staggering. One in 100 people has coeliac disease, according to screening studies, yet only 30% of people with the condition are clinically diagnosed.

That means an estimated half a million people in the UK are living without a diagnosis or the support that can come with it. "That's a horrendous figure of people walking around feeling ill, having symptoms," Devonshire says.

For many it is a waiting game: the average time taken for someone to be diagnosed from the onset of symptoms is 13 years.

After working with and supporting Coeliac UK for several years, Devonshire was made an ambassador of the charity in November 2019.

She joined hundreds of others as they celebrated Gluten Free Community Week just ended.

The chef hosted a virtual cook along, making peanut butter chocolate chip cookies, and, in a turning of the tables from her MasterChef experience, became the judge of a baking competition.

"It's so beautiful to see everybody's bakes and to see all the kids and how proud they are," she says.

"I love it when you can see the child has really made it with all their chocolate bits on it. Baking is something that brings everyone together."

Devonshire knows only too well how important that feeling of togetherness can be. Her family did not discover the coeliac community for years and wishes they had known about it sooner.

"We survived on our own," she says. "That feeling of community is really overwhelming. I've been close to tears at times at coeliac shows because I didn't know that [community] existed when I had Ben.

"If I'd have known I could've accessed so much help, so much advice and not thought I was on my own with this. It's something I've come to since I've won MasterChef."

Devonshire's life has been transformed since winning the much-loved cookery show, where in a maverick move she paired lobster with popcorn. She says she still has to pinch herself sometimes to believe she's a MasterChef champion.

Alongside attending a tea party with the Queen, her highlights include working with "food heroes" Michel Roux, Jason Atherton, Marcus Wareing and Atul Kochhar, presenting food festivals across the country and her charity work.

"I was 50 years old when I won MasterChef and it's just been incredible since," she says. "I've forged out a career in what I love doing in the gluten-free community and I couldn't be prouder. If it all stopped tomorrow, I could still say, 'I did that'."

If, however, Devonshire were to single out a top feat, it would be her debut cookbook. Hassle Free, Gluten Free was published in 2018 and is one of the few titles to carry the Coeliac UK stamp of approval.

She is now working on her second book, a vegetarian gluten-free offering inspired by her daughter, who is a strict vegetarian, and the rise is flexitarianism.

"I write books that come from where I am in my life," Devonshire explains.

"I cook vegetarian meals at home and love it. I've avoided the cliches: stuffed mushrooms, avocados... you can go online to see those recipes.

"I've tried to think outside the box, but it comes back to what the first book was about - if I couldn't get it in my local supermarket, it didn't go in. There's no point putting stuff in that people can't access."

And perhaps - alongside the sublime recipes, of course - that is why Devonshire's first book has been so well-received by her peers and home cooks alike.

"It's genuinely moving and very overwhelming [to receive glowing reviews from the likes of Michel Roux Jnr and Gregg Wallace]," she says.

"Then I also get lovely calls from people who've got a child with coeliac disease saying, 'Thank you so much'.

"It makes it all worthwhile, makes you realise you're doing something right somehow."

MasterChef winner Jane Devonshire talks to Emily Goddard about how changing to a gluten free diet transformed her son's behaviour as a toddler and why she is a big supporter of the Coeliac UK charity

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