Nine year old Adelaide was one of 280 patients who participated in a clinical trial to determine the accuracy of a pin-prick method of testing for coeliac disease at Wesley Medical Research.
“This test has changed our lives. By participating in this trial, we received a positive pin-prick test and study result for Adelaide.
This caused us to investigate further and thankfully we did,” Adelaide’s mother Louise said. “Without this initial test, we wouldn’t have done an endoscopy and she would not have been diagnosed so early,” said Louise.
Adelaide’s gastroenterologist acknowledged there was significant damage to her small bowel from undiagnosed coeliac disease.
The internal damaged sustained will take Adelaide 12-18 months to recover. “And now she is on her way to better health,” finished Louise. Adelaide is not alone.
It is estimated that 350,000 Australians have coeliac disease, with the majority remaining undiagnosed.
The disease can potentially cause damage to multiple parts of the body, not just the bowel which is commonly thought. Left untreated it can increase a person’s risk of developing lymphoma, infertility and osteoporosis.
Louise, Adelaide’s mum, was diagnosed with coeliac disease 9 years ago.
The strong genetic link in coeliac disease means that immediate family members have an approximate 1 in 10 chance of also having the disease, with daughters of affected parents being the most likely.
This research aims to validate a simple test using a pin prick of blood which can provide a quick result as to whether people need to go and have further tests for coeliac disease.
Studies have shown there is often a delay in diagnosis for those presenting with symptoms of coeliac disease of between three and thirteen years.
This is not simply a case of GPs ignoring the condition; coeliac disease has symptoms which are similar to many other health issues and can be hard to spot.
A large number of people with the disease may also not present as they feel well, but don’t understand they can still be suffering from significant unrecognised harm to their health.
“The impact of this technology could lead to a simpler, faster diagnosis– an important step in timely and accurate diagnosis,” said lead researcher, Dr James Daveson.
“We are so grateful that we could be part of the trial” said Louise.
Results from this research will be available later this year.
This research was made possible through the generosity of our donors and The Thorsen Foundation.