Jenny’s experience with coeliac disease has been quite a journey, having been diagnosed more than 18 years ago.
Initially, her symptoms were mild and overlooked, with heartburn being the only noticeable issue. Her doctors believed her symptoms could be treated with medication.
However, when her GP retired and her symptoms persisted, she attended a new doctor who took a deeper look into her medical history and sent her for an endoscopy. After the procedure, the gastroenterologist quickly identified that Jenny had coeliac disease based on the appearance of her flattened villi, even before the biopsy results confirmed it.
Looking back, Jenny noticed more symptoms that made sense in hindsight, such as difficulties falling pregnant, short stature, and nutritional deficiencies. Once she adopted a gluten-free diet, her health started to improve significantly.
“My diagnosis came as quite a shock, as there’s no family history of coeliac disease or autoimmune conditions”, says Jenny. All her immediate relatives have been tested for coeliac disease, but none have been diagnosed.
After diagnosis and throughout her career in dentistry, Jenny often observed oral manifestations of coeliac disease and proactively recommended testing for clients exhibiting signs of the condition, particularly when she noticed symptoms such as dental enamel defects and recurrent ulcers.
Since being diagnosed, the biggest adjustment Jenny has had to make is educating the wider community on the severity of coeliac disease and the impact it can have on the body. She’s helped family and friends understand the seriousness of the condition, particularly the debilitating reactions she has from consuming gluten, and how to prepare and cook food safely for someone with coeliac disease. The most challenging part, however, has been the ongoing process of education and fostering acceptance in the wider community; that coeliac disease is a serious lifelong condition, not just a gluten intolerance.
“I stopped eating out for a while until I felt confident in communicating my dietary needs to restaurants. So, I had to train and educate myself first on food restrictions.”
Travelling has been difficult for Jenny, due to the differing standards of gluten thresholds and food safety standards around the world, particularly over in the United States.
“I’ve definitely encountered issues when travelling, especially with what other countries consider gluten-free.”
Currently in Australia and New Zealand, the uncertainty over the safe dose of gluten has led to a ‘no detectable’ gluten standard for food labelled ‘gluten-free’. However, throughout the rest of the world, the ‘gluten-free’ standard is 20 parts per million (which is higher than ‘no detectable’). Patients with coeliac disease can experience acute food poisoning symptoms related to an immune activation phenomenon within two hours after ingesting as little as 1 gram of gluten. We do not know the minimum dose of gluten that activates an immune response, injures the gut and causes symptoms. This has in turn, taken a toll on food safety standards worldwide.
Jenny has previously participated in the Gluten Threshold Study, which addresses this knowledge gap and aims to determine if there is a minimum threshold or a ‘safe dose’ for the amount of gluten ingested by coeliac disease patients. The Gluten Threshold study is now closed, with findings due to be released in 2025. Since participating in the GTS study, she has gone on to participate in additional sponsored clinical trials.
“My advice to anyone newly diagnosed is to seek out help within the coeliac disease community. Find guidance in someone who has been diagnosed for quite a few years, who can share recipes, provide tips for managing symptoms, or even accompany you shopping.”
What inspired me to participate in clinical trials is advocacy and education. The incidence of coeliac disease in Australia is high and needs to be talked about more often in the community and within the medical field
Jenny
“Unless we have reputable peer-reviewed research, the population and medical industry aren’t going to listen. We need innovative research based on clinical trial data and patient experiences, not just opinions and anecdotal work to drive change.”
“Knowing that I’m helping the coeliac disease community is a great feeling. Whether I am put on a placebo or not throughout the trials I am participating in, I am glad that my clinical data is being utilised for research and contributing to sound clinical judgements.”
Wesley Research Institute is currently recruiting participants to join our coeliac disease clinical trials. To find out more about participating visit https://www.wesleyresearch.org.au/clinical-trials/ or email coeliac@wesleyresearch.org.au.