Every year, the Coeliac New Zealand Conference is a highlight of our calendar – and besides providing updates on the latest research and knowledge around coeliac disease, this year over 150 people were treated to an incredible array of GF food provided by Sky City Convention Centre. Masterfully hosted by MC Sam Walter, it was a fantastic day of learning for everyone involved and an opportunity to know that you’re not alone, weird, or difficult – you’re just coeliac.
Below we share a few of the major takeaways from the day – care of our incredible speakers however you will find a full write up in the next issue of Coeliac Link magazine.
The changing face of coeliac disease
According to Dr Helen Evans, Head of Department for Paediatric Gastroenterology at Starship Children Health, coeliac disease is the commonest reason for referral from GPs. “We are seeing more and more referrals that is undoubted” shares Dr Evans. “I started at Starship in 2005, and back then we did 3 endoscopies for coeliac disease. Last year we did 87.” What isn’t clear is whether there are more cases or simply greater awareness.
The numbers from Dr Jason Tye-Din’s presentation backed this up as well, with coeliacs making up 1-2% of the world’s population but a nearly fourfold rise in its diagnosis, especially in previously undiagnosed groups, such as those from African backgrounds.
This is reflected here in NZ as well. Back in 2002, 92% of children diagnosed at Starship with coeliac disease were of European descent, yet in recent years the ethnic make-up of those diagnosed has shifted significantly, with far higher levels of children from Indian, Maori, Pacific Island, and mixed ethnicities being found to have the condition.
Get those littlies diagnosed
“In the bad old days, they used to come to us really late… The symptoms were really obvious – they’d come malnourished, with their skin hanging off,” shares Dr Evans. “These days, they’ve got these vague symptoms. If there’s any doubt, I think they should be tested.”
Diagnosis isn’t always easy
A common theme across speakers were the challenges in diagnosis – particularly when it comes to consistency. For example, all four labs in Auckland use different tests and should a child show up to Middlemore, they may need to be tested again to avoid any unnecessary endoscopies. Other labs will simply label a test as “coeliac screen positive” without specifying which kind of test it is.
Other issues are long waiting times for endoscopies. With an endoscopy needing the person being tested to consume gluten for the weeks leading up to the test, it’s vital that we get people through to an endoscopy as quickly as possible. However, with long waiting times at Starship and other providers, many people are giving up on eating gluten before they make it to the test – understandably, given how much pain people with coeliac disease can be in while eating gluten.
And getting that diagnosis early is vital – according to Dr Tye-Din, not only can coeliac disease lead to between a three and sixfold risk of lymphoma, but untreated coeliac disease can also impact on bone density, infertility, risk of still births and other obstetric issues, and more.
However, he and his team have been looking at new research into diagnosis, with a simple blood test to measure the T cells, the cells that cause coeliac disease. “We fed people a single smoothie containing gluten just once, and three hours later we did a blood test,” shares Dr Tye-Din. “In the blood stream are a number of immune responses; one in particular called Interlucan 2 shoots right up in people with coeliac disease but does not go up in those with gluten sensitivity or no issues with gluten.” This new study is soon to be published – and may become the new gold standard of diagnosis.
Preventing, delaying, or curing coeliac disease – what are our odds?
Conference favourite Dr Jason Tye-Din heads the Coeliac Disease Research Lab at the Walter and Eliza Hall Institute in Melbourne and came armed with more information than he could get through during his hour of speaking time!
“You’re not born with coeliac disease, you’re only born with the susceptibility to it,” explained Dr Tye-Din. “And only some of those with susceptibility will go on to develop it.”
So why does coeliac disease occur?
Half the population has the HLA gene, however only 1-2% of those with the gene are affected. “T Regs are the cells which are meant to stifle the auto-immune response,” explains Dr Tye-Din. “These T Regs in people with coeliac disease are present but just don’t work properly. So why is this the case?” That’s where environmental factors come in.
The sort of factors that could determine whether you develop coeliac disease include:
- Infections – especially gastro-intestinal infections (so take care when travelling and ensure you’re up to date with your vaccinations)
- Certain medications can trigger it, particularly if over-used (minimise your unnecessary use of medications)
- Iron supplementation possibly
- The season a child is born in – this could be because they’re more susceptible to infections if born in winter
- Potentially the timing and amount of gluten introduced during infancy, or being in a higher socio-economic group, although these haven’t been proven
The common thread of these factors is that they affect your microbiome – in particular, the one in your intestine, which has 10x more bugs than cells in our bodies. It’s incredibly crucial for your immune system, mood, mental function, metabolism, and more.
The more diverse your microbiome, the better – especially when it comes to preventing the triggering of coeliac disease. So what factors may impact on your microbiome?
- Diet high in starch and fibre (an African diet is best)
- Breast feeding instead of formula
- Birth mode (natural birth can help build a child’s microbiome)
- Environment/where you live
As for our hopes for a vaccine or cure? Many of our members have already been involved in phase one trials. “Pleasingly, there are some immune signals that suggest it’s doing what it’s meant to do.” Phase two will start in the next few months – so the outlook is good!
Let’s talk about it
Together we are gluten free for life. That was the message from our Coeliac NZ ambassadors, Samantha Richards and Charlotte Moss, who shared their personal stories of living with coeliac disease. The biggest takeaway? Talk about it – you’ll be surprised how much support you get from family and friends when you share your struggles, needs, and successes with them.
In the room on the day, that was certainly true – having the coeliac community come together to learn, share stories, and indulge in delicious coeliac-friendly goodies was a clear sign that together, we are gluten free for life.