Supporting patients with Coeliac Disease
The Wesley Research Institute has launched the Coeliac Research Network comprising a global association of expert clinicians focused on improving diagnosis, treatment and therapies for people with coeliac disease.
The network will incorporate clinical experts including gastroenterologists, paediatric gastroenterologists, gastro-surgeons, and mucosal immunologists who will be participating in a multi-disciplinary research program.
It is hoped this research network will give patients, carers, and health professionals access to the latest scientific developments and clinical information.
The network is being led by Wesley Research Institute's Director of Coeliac and Immune Health Research and Gastroenterologist Dr James Daveson.
“It is currently estimated that 1 in 70 Australian’s have coeliac disease however the real number could be much larger as we expect 4 out of 5 people are undiagnosed,” Dr Daveson said.
“Coeliac disease is a condition where the digestive system cannot properly process gluten - found in grains like wheat, barley and oats, symptoms of the disease include malnutrition, osteoporosis, depression, infertility, and increased risk of certain cancers and there is no cure.
“Symptoms can be debilitating for patients and while clinicians have improved their ability to diagnose the condition there has also been an increase in the incidence of coeliac disease in the community.”
Patient Kristina Richardson was diagnosed with coeliac disease at the age of 30 and found it to be life changing.
“The symptoms sapped my confidence when I was younger, I did really well at school, but it was very stressful for me so I didn't have the confidence to go to university,” Ms Richardson said.
“I wasn't getting the nutrition I needed and my symptoms began to escalate and I started to become really unwell.
“I was very hungry, extremely tired, falling asleep almost in the middle of conversations with people, I was covered in giant black bruises and I couldn't work out why.”
After a long back-and-forth between her and doctors who did not initially recognise the symptoms, she was officially diagnosed with coeliac disease and has since removed gluten from her diet.
“My diagnosis has been life changing, I feel so much better. I have been able to attend university, I am now a qualified Dietician,” Ms Richardson said.
“I have also been able to have a family but my eight-year-old daughter Ashley has also been diagnosed with coeliac disease.
“I am really glad Ashley's been diagnosed early so she doesn't have to go through that sort of thing and she can reach her full potential.”
Kristina was one of the founding members of the Clinical Research Network and said she is hopeful this will benefit her daughter in years to come.
For more information
The Coeliac Research Network is based at the Wesley Research Institute located in the Wesley Hospital, Auchenflower.