Jonathan's story
Type 1 diagnosis
Jonathan (center) with his team mates at a Challenge Wanaka Tri event.
Jonathan with his wife, Anna and daughter Indie trekking the Routeburn.
Jonathan was 30 when he was diagnosed with type 1 diabetes. Previously an elite sportsman, representing New Zealand at the 2000 Sydney Olympics, Jonathan was fit and healthy and had no history of diabetes in his family. Looking back Jonathan wonders if the warning signs were there a little longer, but being a sportsman, he was often thirsty and tired and may not have noticed them.
A few years after being diagnosed with type 1, Jonathan started experiencing significant lethargy and abdominal pain. He had private health insurance so underwent almost all the tests under the sun – but they didn’t return any explanation as to the symptoms he was experiencing.
Jonathan endured years more of his symptoms, and not getting answers. He tried different diets and holistic therapy – he even went on a silent retreat - but his symptoms would soon flare up again.
A second diagnosis: Exocrine Pancreatic Insufficiency
Finally, ten years after his type 1 diagnosis, he saw an outpatient diabetes dietitian who ran a faecal elastase test to rule out Exocrine Pancreatic Insufficiency (EPI - as it’s known in the United States, or PEI - as it’s known in New Zealand), is an often-underdiagnosed complication in type 1 diabetes, where the pancreas fails to produce enough digestive enzymes, causing malabsorption, fatty stools, weight loss, and severe abdominal pain.
Jonathan’s test result was positive. His dietitian started him on Creon – a prescription medication used as a pancreatic enzyme replacement therapy. It contains a mixture of digestive enzymes that help the body break down and absorb fats, proteins, and carbohydrates from food.
For Jonathan – this was both a relief and like a breath of fresh air. He immediately had more energy, and his abdominal pains went away.
Raising awareness of PEI
Jonathan wanted to share his story to help raise awareness of this often-unknown diabetes complication. Now a father of three, he strongly believes in advocating for yourself. “If you are aware of something that it’s not right, don’t ignore it – keep pushing to find the research and evidence to back up what you are feeling.”
Jonathan hopes that by shining a light on PEI, others who are suffering needlessly might be helped.
“Raising awareness of PEI, particularly within the type 1 diabetes community, is something I’m very passionate about. It took a long time for me to receive a diagnosis, and I suspect there are many others living with symptoms who may not realise PEI could be the cause.”
What if the system changed?
Jonathan was diagnosed after a simple test but went through almost a decade of painful and uncomfortable symptoms. Jonathan asks, “How do we change the system? If people are tested earlier, then the knock-on effect for further health appointments is huge. Not to mention the associating mental and emotional toll that goes alongside a condition like PEI.”
Haidee Ryan, Health New Zealand Clinical Dietitian for Southern explains more about PEI.