An estimated 1 in 70 Australians have coeliac disease, with more than 80 percent of all Australian coeliac disease sufferers remain undiagnosed. Aidan, a coeliac disease clinical trial participant at Wesley Research Institute, was part of that statistic remaining undiagnosed for a lengthy period of time despite experiencing symptoms.
Diagnosed at the end of 2019, Aidan had been experiencing symptoms for about 3-5 years prior. He had long struggled with fatigue and had visited his doctors’ multiple times. However, many of the doctors dismissed his symptoms as stress-related tiredness. Aidan decided to get a second opinion from a new GP, who took a more thorough approach, starting with a blood test to investigate the underlying cause of his fatigue. This visit marked the beginning of Aidan’s diagnosis journey, which eventually led to an endoscopy and a gluten challenge.
Knowing people followed gluten-free diets for health or medical reasons, Aidan knew very little about coeliac disease prior to his diagnosis. The hardest adjustment Aidan has found, was not just adapting to a gluten-free diet but the logistical hurdles that come with being able to cater for this diet.
“You know if I’m travelling somewhere for work, it is always on the back of my mind: where am I going to find food? I need to pre-plan my meal options that works within the schedule of my busy day.”
“Switching to a gluten-free diet made all the difference for me. The benefits of this diet outweigh the logistical hurdles. As soon as I maintained a gluten-free diet, my quality of life significantly improved. Your mood, your way of thinking, your energy levels, a lot of the things that are all signs of coeliac disease that are currently going undiagnosed will improve. A blessing in disguise really.”
After being part of The Gluten Threshold study at Wesley Research Institute, Aidan is now participating in a sponsored study and is well accustomed to the clinical trial experience. Aidan says, “Whilst you may have your hesitations about volunteering for a clinical trial, it’s hard to be scared knowing that you’re closely monitored, and you have healthcare professionals looking after you.”
By participating in a clinical trial, I am opening the possibilities for new treatments, medicines and options for others with coeliac disease. Being part of the very select few that may reap the potential benefits right now is great.
Aidan, Coeliac Disease patient
“For young people out there going through a hard time medically, seek help. Especially from a male perspective, don’t think you are bulletproof and delay treatment if experiencing symptoms. Medical professionals can identify and attribute symptoms of coeliac disease, quite a lot more easily these days”, says Aidan.
There is still a long way to go with reducing these statistics. So, this Coeliac Awareness week start discussions with your friends and family about coeliac disease, and schedule a visit with your GP if you are experiencing symptoms. Spread the word and together we can bring awareness for coeliac disease diagnosis, awareness and research in Australia.
We are so grateful to Aidan for participating in the trial, sharing his story and advocating for medical research. Learn more about coeliac disease and immune health research at WRI.