Doctors told me my daughter just had an upset tummy for 18 months but it was a potentially life-threatening condition
A SCHOOLGIRL endured 18 months of severe stomach problems and lost dramatic amounts of weight while doctors missed her potentially life-threatening condition.
Isabelle was too ill to compete in her gymnastics competitions and spend time with her classmates - but medics dismissed it as an upset tummy.
The youngster showed the first signs of illness aged five, when she appeared pale with little energy.
Her symptoms got progressively worse, with severe stomach pain and bloating leaving her too tired to do much at all.
It then took months for her GP to refer her to a specialist - and a further 18 to finally get a diagnosis.
Her dad Peter, from Conwy, north Wales, said: "Isabelle didn’t seem to be growing as much as some of her friends and was often bloated.
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"She was also pale and losing weight.
"We kept seeing our GP, but they 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."
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Isabelle was eventually diagnosed with coeliac disease - a serious, life-long illness where the body's immune system attacks its own tissues.
Untreated, it can result in anaemia, osteoporosis, infertility and even certain cancers.
Peter said the whole process "really undermined Isabelle's confidence" and left her with little to no strength to do what most kids love.
"She was too worn out to do her favourite sports," he said.
"She often had to miss out on her gymnastic and triathlon training and competitions."
Her family suspected she might have had the condition, which requires a strict gluten free diet as the only treatment, as her grandmother and aunt both have it.
But doctors were convinced she was simply suffering from mild stomach issues and saw it as unrelated.
"If it wasn’t for our family history, I think we might still be waiting," Peter said.
"Since diagnosis, Isabelle is a completely different child, and we’re so happy to see the change in her and her growth is more on track.
"We have adjusted her diet and taught her siblings about the foods she can and can’t have and also about cross contamination, to make sure everyone understands her needs."
What is coeliac disease?
Coeliac disease is an autoimmune condition that affects one in 100 Brits.
The immune system (the body's defence against infection) mistakenly attacks healthy tissue when it mistakes substances found inside gluten - a dietary protein found in wheat, rye, barley and oats - as a threat to the body.
This damages your gut (small intestine) so you are unable to take in nutrients from food.
It can cause a range of symptoms, including diarrhoea, abdominal pain and bloating.
There's no cure, but following a gluten-free diet helps control symptoms and prevent the long-term complications of the condition.
These include weakening of the bones (osteoporosis), anaemia, pregnancy complications and some types of cancer.
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."
Peter and Isabelle shared their experience as Coeliac UK launches its campaign to get children diagnosed more quickly.
Research shows a quarter of children with the condition, which affects one in 100 people in the UK, spend more than two years living in pain while they await diagnosis.
But once diagnosed, it can be treated, and in most cases cleared, by eating exclusively gluten free foods.
Experts have urged parents to look out for tiredness, sickness, bloating, stomach pain and slow growth as signs of the illness, and check these using a simple .
Dr Peter Gillett, consultant paediatric gastroenterologist at the Royal Hospital for Sick Children in Edinburgh and member of Coeliac UK's Health Advisory Council, said: "I have seen time and time again how coeliac disease has a daily impact on those who suffer and truly can destroy childhoods.
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"But there is good news - it can be managed by a carefully controlled, gluten free diet and as soon as gluten is removed from the diet, the body begins to repair the gut lining and so symptoms reduce and for most will stop fairly quickly.
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"I find it astounding, every day, how transformational moving to a gluten free diet can be for a child with coeliac disease and their family."
