Our Journey
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I’m Nicola, mum of two, living in the UK, and the founder of Coeliac Compass.
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In 2022, my daughter was diagnosed with coeliac disease. At the time, I thought I understood what coeliac disease was. Another family member already had it, and I believed I knew how to feed someone safely.
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I quickly realised how wrong I was.
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What followed was complete overwhelm. The internet felt like a never-ending labyrinth of conflicting information. The support we received from the NHS was kind and professional, but necessarily limited.
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I was told what needed to happen — a strictly gluten-free diet with no cross-contamination — but not how to make that work in everyday life.
At the same time, there was an element of feeling fortunate. My daughter was young when she was diagnosed, which meant the responsibility to find the answers sat with me. I could invest the time, research thoroughly, and put robust systems in place to manage daily life safely and consistently.
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Through our wider family, I’ve also seen what it looks like to be diagnosed as an adult. This often comes alongside years of ill health, a body that hasn’t been functioning properly, and a long road of recovery.
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So along side rebuilding your health, you’re expected to absorb a huge amount of new information and completely overhaul how you eat, shop, cook, travel and socialise — all while managing work, family and everyday life.
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That is a tremendous amount to carry.
The emotional weight of a lifelong diagnosis
​I knew my daughter needed to be gluten-free.
I knew cross-contamination wasn’t an option.
But I didn’t know how to ensure either of those things consistently.
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​It was also, quite simply, heart-breaking. Having a child diagnosed with anything is painful. I remember when my son first needed glasses — that alone felt like a loss of the carefree ease you want for your children.
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So to have a child diagnosed with a lifelong disease, one that is only managed through constant vigilance and significant change, was devastating.
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