Families share misdiagnosis battle for Coeliac Disease Awareness Week

Rocco and Frankie both eat an entirely gluten-free diet to avoid falling ill again (Picture: Coeliac UK)

Children are often accused of being ‘picky eaters’, and encouraged by adults to try new things.

But for people with coeliac disease, it can be hard to explain that anything from a cheese sandwich, tasty doughnut or spoonful of pasta could have devastating consequences.

Coeliac disease is an auto-immune disorder that affects an estimated 1 in 100 people in the UK, although the majority remain undiagnosed.

Eating gluten – a protein found in wheat, barley or rye – causes the sufferer’s immune system to attack its body’s own tissues.

This in turn damages the small intestine and makes it impossible to absorb nutrients from food.

Coeliac Awareness Week, taking place this week, aims to improve education surrounding the condition in a bid to improve diagnosis time.

Frankie, from Wolverhampton, was just two when her family found out she had coeliac disease.

But it was a battle to find out what was wrong with the tot, who was left ‘skeletal’ due to the intensity of her undiagnosis.

Frankie and her family have had to get used to catering for a gluten free diet (Picture: Nicola Dixon)
As a toddler, Frankie was incredibly thin and constantly had a sad ‘frown’ (Picture: Nicola Dixon)

She would ‘constantly vomit’ and struggle to have energy to move, and she also was renowned for her infamous ‘grumpy frown’.

Mum Nicola told Metro.co.uk: ‘We just felt so helpless, we just kept getting told it was a virus.

‘Frankie was missing out on so much. Her ribs were poking through, she was so malnourished.’

She was finally admitted to hospital with bronchitis and a hugely protruding stomach, which led to her diagnosis.

Nicola has urged people to ‘demand’ a blood test – which can reveal signs of coeliac disease.

Frankie is taking part in the #ShineALightOnCoeliac’ campaign this week (Picture: Nicola Dixon)

She said: ‘The staff we had were really great, they just didn’t think of coeliac disease. If it had been my first child I might have left it, but she’s my third, so I had that confidence to keep pushing.’

Today, five-year-old Frankie’s frown has truly been turned outside down and she is a ‘vibrant, happy and energetic little girl.’

Frankie said: ‘It can be nice, you make friends with other people with coeliac disease.

‘If I do eat gluten I get sick and really tired. But when I wake up I feel better.’

But she still gets ‘glutened’ on occasion, the most recent culprit gluten-containing potato wedges at school.

Nicola added: ‘We have learned to adapt, but it can be hard. Gluten-free food is more expensive, so doing this on a budget can’t be easy for some families. That’s why it is easier to look for naturally gluten-free alternatives.’

That’s the advice of 11-year-old Rocco as well, who also faced a long wait in diagnosis.

His mum Hilary, from Clitheroe in Lancashire, recalled the difficulties from his early childhood.

Rocco used to have uncomfortable stomach ache which affected his attendance (Picture: Coeliac UK)
Rocco’s family use the Coeliac UK app to make eating out at restaurants easier (Picture: Hilary Croft)

To begin with, it was hard to recognise the symptoms of coeliac disease.

She told Metro.co.uk: ‘He had missed lots of school, he would have really sore stomachs and diarrhoea. He was quite thin and would not look well, we had no idea what it was.

‘We were lucky that from birth Rocco had been involved in an allergy study, so we found out when he was screened again that he had signs of coeliac disease.

‘When we started his gluten free diet, everything changed.

‘He had more energy and was completely thriving once we found out what the issue was.’

Rocco, pictured here with brother Luca, would struggle with severe stomach pain (Picture: Hilary Croft)

Rocco has reassured other children with coeliac disease that it ‘is not scary’ and can be easy to manage.

He’s still able to have some of his favourite foods, like gluten free rolls at Subway and gluten free doughnuts.

And he works to explain his condition to friends at school to help boost awareness.

‘My advice would be to start with naturally gluten free foods,’ Rocco said.

‘That way you don’t need to worry about cross contamination.’

What are the symptoms of coeliac disease?

Identifying the symptoms of coeliac disease can be complex and they can be easily mistaken for other illnesses. One in four people with coeliac disease have previously been treated for or misdiagnosed with IBS prior to diagnosis.

Symptoms of coeliac disease range from mild to severe, and can include:

  • Bloating
  • Diarrhoea
  • Vomiting
  • Stomach ache
  • Nausea
  • Wind
  • Constipation
  • Tiredness
  • Mouth ulcers
  • Sudden or unexpected weight loss
  • Anaemia
  • Slow growth (in children)
  • Unexplained infertility
  • Itchy rash
  • Nerve damage

Coeliac UK’s awareness campaign this week aims to provide answers to people experiencing symptoms and help them get to a diagnosis faster.

A simple blood test is a key way to diagnosis the condition.

But the average length of time it takes for an adult to be diagnosed with the disease from the onset of symptoms is 13 years.

For those with undiagnosed coeliac disease, eating gluten can lead to nutritional deficiencies and other complications such as osteoporosis, anaemia, fertility problems and in some rare cases small bowel lymphoma.

Helen North, director of fundraising and commercial services at Coeliac UK, said: ‘The symptoms of coeliac disease can be easily confused with those of other conditions, which is why Coeliac UK Awareness Week is so important. If more people are aware of the symptoms, more people will get a diagnosis earlier, reducing the precious time stolen by this debilitating disease.

‘Receiving a diagnosis can be unsettling if not scary for some, but there is so much support available from Coeliac UK and every day we hear about how our guidance, information and support has helped to increase the quality of life for people and their whole family.’

As part of the Awareness Week activities, Coeliac UK is running a fundraising challenge called #ShineALightOnCoeliac.

The charity’s goal is to raise £100,000.

Find out more about the work of Coeliac UK here.

If you have coeliac disease symptoms, you can take a self-assessment on the charity’s website.

Other stories of ‘lost childhoods’ to coeliac disease

Children across the UK banded together earlier this year to raise awareness of coeliac disease.

The group, which included Rocco and Frankie, hope their stories will encourage faster diagnoses.

You can read more from Isabelle, Lucas and Daisy below.


Other stories of 'lost childhoods' to coeliac disease

Daisy, 12, was diagnosed with coeliac disease when she was four-years-old.

Her mum Helen said: ‘As a very young girl, Daisy only had the energy to play for half an hour, then would need to sleep.

‘I remember one day after months of illness her being on all fours in the living room being sick and having tummy troubles at the same time. She was just three at the time and said to me “Mummy, I am so poorly”. This broke my heart as I just wanted my little girl to be happy and healthy.’

Daisy, from Gloucestershire, added she feared she would be ‘stuck forever being sick.’

But finally a coeliac diagnosis and subsequent gluten-free diet came along to change her life.

The twelve-year-old’s dad and gran also emerged to have the same condition.

Helen added: ‘We have changed the way we view food, and re-educated ourselves with a lot of support from Coeliac UK.’

And Daisy said: ‘Now, I feel so much better and I’m not tired at all. I can play with all my friends because I am not poorly anymore. I want people with coeliac disease to know that you can always be positive no matter how bad you feel and that once you change your diet things will be so much better!’


Other stories of 'lost childhoods' to coeliac disease

From the age of five, Lucas suffered with terrible bloating and tummy pain and couldn’t understand why he was always ill.

The Liverpool schoolboy missed classes due to his stomach issues and struggled with his confidence.

His mum Deanna said: ‘I took him to the doctor every week and just got told it was viral so eventually I had to take him to hospital, as it was not improving and he was having to miss school some days.

‘As his mum it was such a worry to see him so sick, it was scary. And we had no answers. He looked so poorly, pale and was very tired.’

He was finally diagnosed aged six – and mum Deanna has urged parents with other poorly to keep a log of symptoms to take to their GP.

Lucas, now 11, said: ‘It is so much better now I don’t need to go to the toilet all the time at school, and I get to eat things that don’t make me bloated and sore.

‘Once you get the right food, the pain stops and I want other kids to know it is okay to have coeliac disease, you get to eat lots of the same things as your friends, just gluten free version!’

Isabelle’s story, 12

Other stories of 'lost childhoods' to coeliac disease

Like Lucas, Isabelle first started showing symptoms of coeliac disease age five.

She had severe stomach aches, frequently felt bloated and was alarmingly underweight.

Isabelle’s family, from Conwy, suspected she could have coeliac disease, but were frequently knocked back by doctors.

Her dad, Peter, said: ‘We thought it might be coeliac disease because Isabelle’s nana and aunty both have it, but our GP kept telling us that it was just an upset tummy.

‘We had to really push to eventually get her referred for a blood test at our local hospital. 

“Even with a referral, it still took nearly a year and a half to get the full diagnosis. If it wasn’t for our family history, I think we might still be waiting. ’

Isabelle missed out on her favourite sports as she became more and more weak amid waiting for a diagnosis.

She was unable to take part in gymnastic and triathlon training and competitions she previously had been excited for.

But now, all that has changed.

Isabelle, now 12, said: ‘Now that I’m eating the right foods, I have a lot more energy and my tummy doesn’t feel full all the time.

‘I can take part in all of my favourite sports again and have also started my new hobbies, skiing, drama and singing. I would like more people to know about the symptoms of coeliac disease so more people get tested early, especially children like me who may not know that anything could be wrong.’ 

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