The Coeliac Princess and Super Mum Kerry
This month, we’re spotlighting an inspiring mother–daughter duo: Imogen, known as The Coeliac Princess, and her mum, Kerry, who have turned a difficult diagnosis into a journey of strength, advocacy, and community. After months of worrying symptoms, Immy was diagnosed with coeliac disease at just 18 months old, changing their daily lives overnight. Through their Instagram page @the_coeliac_princess, they openly share the realities of living strictly gluten-free, the challenges, the wins, and everything in between, creating a supportive space for families who realise they’re not alone. Their honesty, resilience, and dedication to raising awareness continue to inspire and empower the wider coeliac community.
Can you share Immy’s journey of living with coeliac disease, from the moment of diagnosis through to now, and how it has impacted both of your daily lives?
Immy’s journey started with months of worrying symptoms, endless appointments, and a feeling that something just wasn’t right. Imogen was always unsettled and constantly teary, tired, and clingy. She also had a very swollen tummy, gassy and rashes on her body. She was first admitted to hospital before her first birthday being very ill, she had every test, even suggesting a tumour, however she was not tested for Coeliac disease. When the diagnosis finally came in March 2022, when she was 18 months old, it was a huge mix of relief and heartbreak, relief that we finally had answers, but heartbreak knowing she’d be living with a lifelong autoimmune disease.
From that moment, everything changed. Our daily lives revolve around reading labels, planning ahead, carrying emergency snacks, and constantly advocating for her safety. But we’ve also seen Immy transform, from a poorly little girl to a strong, confident child who knows how to protect herself and speak up. Coeliac disease affects every single day, but it has also made us both more resilient than we ever imagined.
How did the idea for @the_coeliac_princess come about, and what inspired you both to start sharing your story on Instagram?
@the_coeliac_princess began following a suggestion from my friend to document our journey. It started as a small page to share safe finds and celebrate little wins, but it quickly became a place of connection, somewhere other parents and children could see that they aren’t alone.
It’s turned into something bigger than we ever expected. I share the challenges as well as the positives along the way, not just for Immy but for me as her Mommy too. What inspired us most was the messages from families saying, “Thank you… I thought we were the only ones.” That’s when we knew sharing our story mattered.
Many of your followers love your honest approach. What’s one challenge people often misunderstand about living gluten-free?
People often think coeliac disease is just gluten-free, a “diet”, something optional or trendy. But for someone with coeliac disease, it’s not a choice. It’s strict, medical, every single day.
One breadcrumb, one shared toaster, one cross-contaminated meal can make Immy incredibly ill for weeks. The invisible risk is what people don’t always understand, the long term effects! It’s not about being picky; it’s about being safe.
Travelling, dining out, or social events can be tricky. What strategies have helped you stay safe and confident?
Preparation is everything. We research places in advance, contact restaurants before we go, pack backups, and always have a conversation with staff when ordering. I always ask questions “Is this safe for someone with coeliac disease?” “Are they cooked separately” and “Can you check with the chef?”
We’ve also learned to trust our instincts, if something doesn’t feel right, we walk away. Safety always comes first, even if it means changing plans.
At school, I have worked hard with them and completed an Individual Health Care Plan, that we review every new school year or if there are any changes. Yes we have had challenges but we have worked closely to get the right procedures in place.
Imogen also wears her Medical Alert bracelet when she is not with me, this makes others aware of her medical needs and its gives me confidence that people are aware and she is safe when I am not around.
Kerry, as a volunteer for your local Coeliac UK Youth Group, how has supporting local coeliacs shaped your perspective?
I found out about the Young Wolverhampton Coeliac Group, shortly after my daughters diagnosis. I knew following that first event that it wasn’t just for Imogen, it was for me too as her Mommy. I knew how important this group was and I suggested to the team that I would like to also volunteer, the rest is history! We have families travel over 2 hours to us, supporting families has opened my eyes to how widely coeliac disease affects every part of daily life and how much support is still needed. Meeting other parents, early teens, and children reminds me that every experience is unique, but the challenges are shared.
It has given me such pride seeing young people learn to advocate for themselves and build confidence in a world that often doesn’t fully understand coeliac disease. To attend a group that is fully safe for them and allow parents to relax and communicate with others that ‘get it’! It’s also strengthened my belief that community matters, nobody should navigate this alone.
What’s one piece of advice you’d give to other families navigating coeliac disease?
Take it one day at a time. The diagnosis can feel overwhelming, you are allowed to cry but you will find your rhythm. Connect with others, ask questions, and don’t be afraid to speak up for your child, their safety always comes first.
And remember: your child is still the same amazing person they were before. Coeliac disease changes routines, but it doesn’t change who they are or what they can achieve.
Looking ahead, what’s one change you’d love to see in schools, restaurants, or society to make life easier for coeliacs?
I’d love to see better awareness and consistency. That means safer food handling in schools, not just in the catering hall but also class rooms, school trips and birthday parties and a greater understanding that cross-contamination is just as dangerous as the ingredient itself.
Small changes, like proper staff training to cover all areas of the curriculum to make it more inclusive and clearer food labelling, would make a huge difference to families like ours.
Finally, what has been your proudest moment sharing your story online and raising awareness?
There have been so many small moments, but the ones that stay with me are when parents message to say Immy helped them feel braver, or that our posts helped them push for answers, or know that they were not alone.
And of course, seeing Immy grow into such a confident little advocate proudly explaining her condition, helping other coeliac children, and knowing her voice matters, that’s the proudest feeling of all.
Check out these two on social media:
