Archive for April, 2010

You may have seen the story of Natalie on the Channel 10 News on Sunday, 14 March.  Here is the full story…..

After years of worry, Natalie was finally diagnosed with coeliac disease which is a serious condition affecting at least one in 100 children in Australia.  Sadly, four out of five children with the disease are not diagnosed.

Unfortunately, Natalie was so ill by this stage that she had to be hospitalised and fed through a tube.

“It was such a relief to know what was wrong with Natalie and to be able to do something about it,” said her Mum, Lisa.  “She was so ill when she was diagnosed that I couldn’t see that she was ever going to recover.

“But the turnaround in her health once she started treatment was immediate.  All her symptoms just disappeared and she started to eat again and put on weight.  She had so much energy it was like having a totally different child, it was as though someone had flicked a switch and she became alive again.  Her little personality started shining through for the first time in nearly two years.  I just wish we’d known what was wrong with her so much sooner.”

Paediatric Gastroenterologist, Associate Professor Don Cameron, is an adviser to The Coeliac Research Fund and The Coeliac Society.  He says that there is an urgent need to raise public awareness about coeliac disease in children, because although it is very common, it is often not diagnosed and can result in severe health complications in later life if it is not treated properly.

Associate Professor Cameron said that coeliac disease is nearly is nearly twice as prevalent as Type 1 juvenile diabetes1 and 25 times more common than cystic fibrosis2, but most people in Australia had never heard of it and diagnosis rates were very low.

“Coeliac disease affects at least one in 100 children in this country but four out of five are not diagnosed,” he said.  In fact, it is one of the most under diagnosed conditions of our time.  We call it ‘the hidden epidemic’ because most coeliacs are not diagnosed until they are adults and some are never diagnosed at all.

“But we need to put coeliac disease squarely in the public limelight because this is a very serious condition.  Not only can it cause very debilitating symptoms in children and hinder their growth and development, but if it is left untreated, it can also cause early onset osteoporosis, liver disease, infertility and cancer in later life,” he said.

Associate Professor Cameron said that coeliac disease typically starts in childhood between the ages of four and seven years old, although symptoms can present at any age, even in adulthood.

He urged parents to ring The Coeliac Awareness Hotline 1300 273 272 for more information if their child has any symptoms that could be due to coeliac disease.  These symptoms include unexplained bloating, diarrhoea and/or constipation, tummy pains, tiredness or lack of stamina, anaemia, mouth ulcers, failure to thrive or difficulty in concentrating.  “Sometimes, children with coeliac disease don’t have any obvious symptoms at all and just seem to be generally ‘out of sorts.’  Younger children in particular might just be clingy, grumpy or short tempered because they are feeling unwell and can’t explain why.”

Associate Professor Cameron said that children could not just ‘grow out of’ coeliac disease.  “This is a permanent condition which needs proper medical diagnosis and ongoing treatment,” he said.  “The good news is that diagnosis is simple and with the proper treatment, most children will start to thrive again very quickly and their risk of longer term health complications is minimised.

“Most importantly, we encourage parents not to diagnose their children themselves and not to eliminate gluten from their diet without medical advice.  Gluten is like a poison to coeliacs and parents need to learn how to manage their children’s diet very carefully under qualified medical supervision,” he said.

Associate Professor Cameron said that coeliac disease is hereditary and he urged anyone who has a relative in their family with the condition to arrange a coeliac test for themselves and their children.