During Coeliac Awareness Week, Emu Heights mum Jacqui Legender is hoping to increase awareness of the autoimmune illness.
Ms Legender’s 11-year-old daughter Alexandra Fleming was diagnosed with coeliac disease when she was only four-years-old.
“When she was a toddler she had a very large belly, and when she was able to communicate more as she got older she used to complain of pains in the tummy,” Ms Legender said.
“It took us about 12 months from the very first blood test to actually get a proper diagnosis.”
One in 70 people have coeliac disease, but 80 per cent of affected Australians are completely unaware they suffer from it.
Currently there is no cure, and the only medical treatment is to follow a strict gluten-free diet for life.
“We were able to put her on a gluten-free diet a full year before she started school,” Ms Legender said.
Despite more gluten-free products available than ever before, mistakes can still happen.
“When she had been gluten-free for a whole year the very first day of kindergarten I got her and her brother’s sandwich mixed up,” she said.
“I picked her up from school and her brother said I gave him the wrong sandwich and of course, instant panic.
“When we talk about it with Alexandra, we are clear that if you make a mistake, and you feel OK, that doesn’t mean that you can still eat it again.”
Untreated coeliac disease can cause chronic ill health and also lead to liver disease, osteoporosis and infertility in adult years.
“It is frightening to know that there are so many undiagnosed people out there,” Ms Legender said.
For more information on Coeliac Awareness Week, visit www.coeliac.org.au/assess.
Emily Newton is the Weekender’s police and political reporter. Emily is also the Weekender’s Senior Journalist.