My story (and why I know what you’re going through)

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When I was first diagnosed with coeliac disease, I felt so alone. Nobody seemed that concerned about me. There were flippant remarks, casual misdiagnoses and ritual humiliation (like being weighed in front of a full waiting room).

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And each time I was given a new diagnosis, there’d be a familiar sense of realisation they’d got it wrong again. When the doctors had absolute confidence and conviction I had endometriosis, they cut me open under general anaesthetic and discovered I didn’t.

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There were also small acts of incompetence, like the nurse who offered me a biscuit post-diagnosis.

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And it wasn’t just the medical profession that caused me frustration. Problems seemed to sprout everywhere. A family member told me my pain was psychosomatic. A ‘friend’ thought if she secretly hid gluten in my food that I’d never know. At work there’d be beige buffets with absolutely nothing I could have except a slice of cheddar. (Much as I like cheese, it’s hardly a well-rounded meal.)

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Those were the days when no-one had the internet and allergen information didn’t appear on food. And although a lot has changed, in many ways it’s created a new problem – we’re now swamped with so much information it’s difficult to know where to start.

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I remember feeling totally lost. I wish I’d had someone I could have turned to – someone to give me confidence.

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So that’s why I’ve created this course.

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