The Future of Coeliac Disease Research & Diagnosis with Dr. Andrew Williams
Dr. Andrew Williams offers critical research insights into recent coeliac disease revelations
Hey Gluten Free Fam,
Coeliac disease is estimated to affect 1 in 70 Australians, yet 4 out of 5 people with the condition remain undiagnosed. There’s also between 250-300 symptoms of the disease and, to make matters even more confusing, patients can even be asymptomatic.
They’re staggering stats - and it underscores the need for better education, earlier testing, and ongoing research. It also begs the question many are now debating, and something which has now been implemented in Italy: mass screening for coeliac disease.
Dr. Andrew Williams was a recent guest on A Gluten Free Podcast. Dr. Williams is a Principal Scientist at Westmead Children’s Hospital in Sydney, Australia. He has spent decades researching coeliac disease and the complex immunological processes behind it.
With groundbreaking work taking place behind the scenes at the Children’s Hospital, Dr. Williams opened up on his experience diagnosing patients with coeliac disease from randomised studies, how much they improved with a strict adherence to a gluten free diet, and how national screening is clearly an area Australia should consider moving forward.
In his discussion, Dr. Williams highlights a series of personal anecdotes from study participants who were diagnosed with coeliac disease. Conversations like these drive home the need for serious change at public and private level to improve awareness, funding and testing programs for everyone.
The Seriousness of Undiagnosed Coeliac
With a background in immunology and a specialist in autoimmune conditions, Dr. Williams gave a stark warning to those who live with coeliac disease but are yet to be diagnosed. Citing an extensive study from the United States that spanned up to five decades, he told us that the results were nothing short of alarming.
“They went back and looked at the people that had been tested that were positive and subsequently got coeliac disease and weren't diagnosed,” Dr. Williams explained. “They found that you're almost four times more likely to die than those who'd been treated.”
Coeliac Disease Prevalence Among Australian Children
Dr. Williams lifts the lid on surprise coeliac diagnosis findings among children
With that sobering revelation front of mind, it makes it all the more important to address testing and achieve diagnosis close to home. Thankfully, the work of Dr. Williams and his colleagues are helping to move the needle in that direction.
An internal study conducted at Westmead Children’s Hospital would offer an eye-opening insight into the number of Australian kids who are overlooked for a coeliac diagnosis. Arriving with a myriad of conditions including ADHD and autism, this would be a process that initially examined 1,000 children of all ages, but would eventually expand to 4,000.
“We found around 3% of them over the age of 9 had coeliac disease, either diagnosed or undiagnosed,” Dr. Williams recalled.“We used the latest and best tissue transglutaminase test which [has] an accuracy of around 95 - 98%. We found 73 with a positive tissue transglutaminase. That's around 1.8%.”
Assessing children between 5 to 6, they discovered 1 in 40 had positive coeliac antibodies, while 1 in 56 were positive for children between 5 to 10 years of age. While the study remains ongoing as experts follow up with participants, the figures demonstrate that coeliac is more prevalent with Australian kids than the current national statistics would lead you to believe.
Surprise Medical Conditions Linked with Coeliac Disease
There are few things more important than tackling coeliac disease early in life. This was the case with one child taking part in the study, as they were suffering from regular neurological issues.
“We had a child that was getting fainting episodes,” Dr. Williams outlined. “She had benign intracranial hypotension, which improved on the gluten-free diet. You have this brain fog. You have poor performance at school, inattention, acting out.”
What the study would reveal was a connection between coeliac and other serious physical and mental ailments. This included a woman who suffered a series of miscarriages before the gluten free diet changed everything.
“(One) lady had multiple miscarriages,” Dr. Williams explained. “She had six or seven miscarriages, and after, on the seventh pregnancy, she was diagnosed with coeliac disease. She was put on a diet without the biopsy, and she delivered a healthy baby.”
Low bone mineral density linked to coeliac disease among many other conditions
Another case study would emerge, with a man in his late 40s discovered to have low bone mineral density. As a sufferer of osteoporosis and biopsy-prudence coeliac disease, Dr. Williams found how beneficial the gluten free diet became in this instance.
“Over the 12 months, we saw an increase in his bone mineral density up to normal levels, based on spine and hip measurements… That was really satisfying to us because it showed that if you put someone [with coeliac disease] on a gluten free diet, they have osteoporosis, not a young person, you can pretty much remove those symptoms.”
The Future of Diagnosis and Management: What Now?
The feeling we have in the gluten free community is that we are so close, yet somehow so far from revolutionary testing that speeds up the process. From Dr. Williams’ perspective, the future is bright, in large part due to the global effort to address healthcare shortcomings.
“All around the world, we're seeing increased data coming from the Middle East, the subcontinent, and from Europe and America,” he said. “It seems to be focused on the prevalence, the symptoms, the diagnosis, [and] the education of general practitioners and paediatricians.”
What could treatment look like in 10 or 20 years from now? As critical as the gluten free diet is, perhaps there are alternative measures that medical science will reveal.
“It’s really interesting to see the number of trials of drugs with varying levels of success,” Dr. Williams told Ben. “That's an exciting area to possibly have a treatment apart from the gluten free diet. I'm sure you'll see an increase in the variety of foods and possibly even an increase in the quality of those foods in terms of how much gluten is [included].”
Pushing for Australian Population Screening
A point of conjecture that continues to linger is the need to expand coeliac screening for the Australian population. After Italy became the first country to introduce a national screening program targeted at children aged 1 to 17, Dr. Williams argues that the cost-benefit analysis already points towards its efficacy.
“There’s been quite a few studies done in other countries showing that people with coeliac disease (undiagnosed) costs the economy more than those who are treated.”
With the Interleukin 2 diagnostic tool possibly rolling out throughout Australia and further in the future, the knock-on effect of affordable and quick diagnoses will deliver the type of dividends the community could only dream about.
“Let's say we do have widespread screening in place, a lot of other things then will fall into place,” Dr. Williams told A Gluten Free Podcast. “In other words, a lot of those areas that are now being researched will now no longer exist, especially involving treatment (and) support around treatment.”
Stay in the Know
Coeliac disease cannot continue to be an afterthought in the medical community. Given the severity of conditions that are linked with the disease and the prevalence of associated ailments at all ages, this only reinforces the need to make strides with screening and medical support access.
Keep updated on all your coeliac and gluten free news here at A Gluten Free Family. You can subscribe to A Gluten Free Podcast and follow our newsletter for more information and insights.
