Coeliac disease trials: Qld patients on cutting edge of new treatment

These two patients are among the first to receive a new therapy for coeliac disease in a groundbreaking trial that could change what they’re able to eat.

Aidan Hirst and Jennifer Mace are among the first to receive a new therapy for coeliac disease. Picture: Steve Pohlner

Beer and Mum’s pastry could one day be back on the menu for two patients who are among the first to receive a new therapy for coeliac disease in a groundbreaking trial.

For decades a gluten-free diet has been the only option for the one in 70 Australians living with auto-immune disease.

Now a clinical trial, spearheaded by Wesley Research Institute Coeliac Disease and Immune Health Research Program and Coral Sea Clinical Research Institute director James Daveson, is offering new hope to sufferers.

Queenslanders Aidan Hirst and Jenny Mace are among a small group of patients globally who have so far received two doses of Forte Bioscience’s FB102 in the phase-one human trial.

The treatment delivered by an IV drip is a proprietary molecule with potentially broad auto-immune and auto-immune-related applications.

“This particular one is just a really specific way of reducing the immune activity in people with coeliac disease,” he said.

“With gluten, there is a little protein, and people who have coeliac disease see that it’s foreign, and they try and get rid of it, whereas people who don’t have it, it doesn’t bother them at all.

“So this new therapy is just a way of trying to reduce the body’s immune response to that little protein … to try and turn off the cells that are part of the aberrant pathway.”

Dr Daveson said coeliac disease was the most understood of the auto-immune conditions but diagnosis and finding treatments remained difficult processes.

“Gluten was identified in the 1940s as the cause or trigger of coeliac disease, and diet has been the mainstay therapy,” he said.

“What we’re beginning to understand now is a diet may not work as well as what we thought it did … and to have to think of every single thing you eat every day that has a really high burden for people with this disease.”

Mr Hirst, who was also left undiagnosed for years after fatigue symptoms were dismissed for stress, has already participated in a gluten threshold study before partaking in the new trial.

“It seems like we’re on the way to finding some sort of treatment to help with this disease, whether or not it minimises or completely gets rid of it is for debate at the moment,” he said.

“I guess the most exciting part is potentially finding an alternative to the strict diet.”

He said there was one thing he would reach for first if gluten was an option in his diet again.

“I used to drink quite a bit of beer, and it’s sorely missed. I can go without pretty much everything else, like bread, but I miss beer,” he said.

Mr Hirst said working as a videographer on the road made eating on the go more difficult and expensive.

“The biggest difficulty of me and adjusting wasn’t so much that I had to eat gluten free, but it was the logistic difficulties of … trying to find food that I can consume beyond like a bag of chips,” he said.

“The only way you can get away from that is just to eat naturally gluten free ingredients, a lot of raw foods like fruits, vegetables, meats and dairies.”

Ms Mace, who has now been living with coeliac disease for 18 years, said she wanted to participate in the trial to better educate doctors to help expedite diagnosis and to encourage more understanding in hospitality around why questions could be asked about menus.

“If we can get some good peer review data and have it properly analysed, then maybe we can get some really good information out to GPs and to the wider community,” she said.

“Also more into the training for chefs and catering staff, that way they have a better understanding and hopefully, when we ask questions, it’ll be better accepted.”

Ms Mace said an authentic lemon meringue pie would be the first thing back on her menu if she was able to tolerate gluten again.

“We can make them gluten free, but mum’s pastry and mum’s lemon meringue pie, I really miss,” she said.

Originally published as Coeliac disease trials: Qld patients on cutting edge of new treatment