Helping hand for auto-immune victims

The Wesley Research Institute has launched its coeliac disease research network, which aims to create a direct connection between patients, carers and medical professionals on cutting-edge research.

Kristina Richardson, with daughter Ashley, 8, wasn’t diagnosed with the debilitating coeliac disease until she was 30. Picture: Lyndon Mechielsen

For Kristina Richardson, coeliac disease has been a generational scourge in her family that went unnoticed into her adulthood.

“I think I would even have become a doctor without it,” she said.

On Thursday, Ms Richardson was to be the first person to sign onto the Wesley Research Institute’s coeliac disease network which aims to give patients, carers, and health professionals “direct access” to the latest scientific developments in the area and encourage participation in research.

Four of five people with the auto-immune disease are not ­diagnosed, the institute says.

Coeliac disease is a condition where the digestive system cannot properly process gluten – found in grains like wheat, barley and oats. Symptoms include malnutrition, osteoporosis, depression, infertility, and increased risk of certain cancers, the Victorian government’s Better Health website says.

Ms Richardson said the symptoms had sapped her confidence when she was younger. “I did really well at school, but it was very stressful for me,” she said. “I struggled a lot, and I didn’t have the confidence to go to university.

“I wasn’t really getting the ­nutrition I needed at the time, ­although I didn’t know that.”

She said before she was diagnosed at 30, the symptoms began to escalate. “I started getting really ill – so I was very hungry, extremely tired, falling asleep almost in the middle of conversations with people. I was covered in giant black bruises all the time, and I couldn’t work out why. My period also stopped and went away.”

After a long back-and-forth between her and doctors who did not recognise the symptoms, she was diagnosed and removed gluten from her diet. Since then, she has attended university to study ­nutrition and has given birth.

Unfortunately, her daughter, Ashley, was also diagnosed with coeliac disease.

“I‘m 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,” Ms Richardson said.

Wesley Research Institute’s director of coeliac and immune health research James Daveson said he hoped to see regular engagement with the network involving “meetings with people who have coeliac disease and are interested in coeliac research”.