Recognising Coeliac Disease in Children: Imogen’s Journey from Diagnosis to Gluten-Free Living
Little Imogen’s personal journey with coeliac disease highlights the need for early diagnosis and intervention
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GUEST BLOG: Kerry Blunt
Recognising the Early Symptoms of Coeliac Disease in Children
Imogen was always a very unsettled baby.
She didn’t seem to settle on formula, so we initially thought she was hungry and weaned her earlier than planned. At times she would settle, but as she got older we started noticing changes in her behaviour. Our daughter was often unsettled, lethargic and very clingy. She also had a persistent rash, which we now know was dermatitis herpetiformis.
She started nursery at nine months old and, particularly after COVID, seemed to pick up every bug going. Just before her first birthday, she became extremely poorly with sickness and a very swollen tummy. We rushed her to A&E, where she underwent lots of tests and scans.
At one point, we were even told they were considering whether it could be a tumour, but they never tested for coeliac disease. However, thankfully, everything came back clear, apart from an inflamed liver.
We ended up back at A&E with another extremely swollen tummy. While we were there, the consultant suggested testing her for coeliac disease. Shortly afterwards, we received the positive results. Imogen was diagnosed at just 18 months old.
How a Gluten-Free Diet Changed Imogen’s Health
The change in her was incredible. Almost immediately, she became a much happier child. Her swollen tummy disappeared and she started sleeping much better. It was like we were finally seeing the real Imogen.
Living gluten-free has become our normal now, but we are always conscious of the risks of accidental exposure and cross-contamination. When Imogen does get exposed to gluten, we can see a very clear change in her. Her tummy becomes swollen, she becomes lethargic and appears to be in pain, and her dermatitis herpetiformis can flare, particularly on her legs, around her mouth and below her waist.
Her diagnosis changed all of our lives. It changed how we shop, cook, eat out, travel, attend parties and approach everyday situations. But, most importantly, it gave us our happy little girl back.
Finding Support After a Child’s Coeliac Disease Diagnosis
Shortly after Imogen’s diagnosis, I came across the Young Wolverhampton Coeliac Group in the Coeliac UK magazine. They were advertising their first Easter event since COVID, and we decided to go along.
I remember walking in and seeing other families and children living the same life as us. I actually cried. It was the first time I had met people who completely understood what we were going through without me having to explain it.
That experience made me realise how important these groups are. I knew then that I wanted to volunteer and help make sure the group continued to support other families in the same way it had supported us.
I now volunteer with the Young Wolverhampton Coeliac Group, which has just celebrated its 21st year, a group for children under 16 living with coeliac disease and their families. I have also completed Coeliac UK volunteer training.
Why Coeliac Support Groups Matter for Families
For me, it isn’t just about supporting the children - it’s about supporting the whole family. A coeliac diagnosis affects everyone, particularly parents who suddenly have to navigate food labels, cross-contamination, school, parties, eating out and the emotional side of managing a lifelong condition.
The group gives families somewhere they can feel safe, understood, there is always a full gluten-free buffet, and, most importantly, somewhere they can meet people who just ‘get it.’ I want other families to have the same feeling I had when I walked through those doors for the first time.
Shortly after Imogen’s diagnosis, I set up her Instagram page @the_coeliac_princess to share our journey. A friend suggested I start one, and I never imagined how much it would grow or where it would take us.
“Coeliac disease isn’t a choice, a food intolerance or something you can simply ‘cheat’ on. It is a lifelong autoimmune condition and the only treatment is a strict gluten-free diet.”
Through the page, I’ve connected with so many incredible families, particularly other mums raising children with coeliac disease. We support each other, share experiences, recommend products and venues, and understand the challenges that come with raising a child who has to be strictly gluten-free.
Some of the people I have met through the community have become genuine friends.
It has also opened the door to the wider gluten-free and free-from community. We’ve been able to attend free-from events, meet brands and discover new products, but the best part is always the people. Seeing how passionate businesses, families and individuals are about making life easier and more inclusive for people living gluten-free is incredibly positive.
Social media has allowed us to turn what initially felt like a very isolating diagnosis into something that has connected us with a huge community.
The Value of Public Awareness with Coeliac Disease in Children
There is still a huge amount of awareness needed. Coeliac disease affects around 1 in 100 people, so it isn’t rare, yet a significant proportion of people living with the condition in the UK remain undiagnosed.
A local coeliac support group made Imogen and mum Kerry feel seen and supported
Our own experience shows why awareness matters. Imogen had symptoms for months before she was tested, and some of those symptoms could easily have been attributed to childhood illnesses, tummy bugs or simply being an unsettled child.
I think we need more awareness among the general public, but also among healthcare professionals, schools, nurseries, restaurants and businesses. The more people understand coeliac disease and its symptoms, the more likely people are to seek the right support and receive a diagnosis.
For families, getting that diagnosis can be life-changing. It was for us. Imogen went from being an unhappy, poorly and lethargic toddler to a completely different, much happier little girl.
Coeliac disease isn’t a choice, a food intolerance or something you can simply ‘cheat’ on. It is a lifelong autoimmune condition and the only treatment is a strict gluten-free diet.
There are still so many people living without a diagnosis. We want to help Coeliac UK raise awareness, encourage people to recognise the symptoms and get more people on the road to recovery. It can start with something as simple as taking Coeliac UK’s free online self-assessment.
Listen to Kerry tell Imogen’s story in Episode 252 of A Gluten Free Podcast. Kerry opens up on Imogen's health and various symptoms of coeliac disease as a baby, hospital emergency visits exploring Imogen's symptoms before her first birthday, diagnosis of coeliac disease and how going gluten free for Imogen improved many of the symptoms she was experiencing pre-diagnosis.
You will also hear Ben’s reflections of Kerry and Imogen's journey. The pair speak about starting up The Coeliac Princess on Instagram and connecting with other mums raising children with coeliac disease, how social media has helped in connecting with others going through coeliac disease and living gluten free, and the importance of helping Coeliac UK in raising awareness around coeliac disease and improve diagnosis rates.
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