When most people think of coeliac disease, they often associate it with stomach aches and avoiding bread. But in reality, this autoimmune condition is far more complex – and for many, it remains undiagnosed for years, quietly affecting multiple systems in the body.
In this episode of Disability Matters, we speak to Sarah Keogh, Consultant Dietitian at the Coeliac Society of Ireland, who shares a wealth of knowledge about the real-life challenges faced by people with coeliac disease. From misdiagnosis to hidden symptoms, Sarah uncovers the often invisible impact of this lifelong condition – and the vital work being done to support those living with it.
More Than a Gut Issue
“Coeliac disease is an autoimmune condition,” Sarah explains. “It’s when the body attacks itself, and gluten is the trigger.” While many associate the condition with digestive problems like bloating, diarrhoea or constipation, Sarah says this is just the tip of the iceberg. “It can affect the nervous system, fertility, bone health, and even cause skin conditions like dermatitis herpetiformis – a very itchy rash found on the elbows and knees.”
What’s more, around 40% of people with coeliac disease don’t experience gut symptoms at all, making it incredibly difficult to diagnose. Instead, they may struggle with fatigue, migraines, or low iron levels without understanding the cause. According to Sarah, it takes most people 10 to 14 years to receive a proper diagnosis.
One in Fifty – and Rising
Coeliac disease is much more common than previously believed. “We now estimate that around 1 in 50 people in Ireland have coeliac disease,” says Sarah. “But about 75% of those living with it haven’t been diagnosed.”
The delay is often due to misattributed symptoms. “A lot of people are told they have irritable bowel syndrome, or they’re lactose intolerant – but when tested properly, many turn out to be coeliac.”
It’s also a genetic condition, meaning if a family member has been diagnosed, others in the family – even cousins – are at significantly higher risk. “If you have a parent, sibling or child with coeliac disease, there’s a one in ten chance you have it too.”
Diagnosis – and the Danger of Self-Testing
When people begin to suspect they have a gluten intolerance, many try cutting out gluten before consulting a doctor. This, Sarah warns, is a mistake. “Once you remove gluten from your diet, all the tests come back negative. So you’ve missed your window for diagnosis.”
Instead, the first step should always be a visit to your GP for a coeliac blood test, followed by a referral to a gastroenterologist for a biopsy, which confirms the diagnosis. For the tests to be accurate, people must continue eating gluten beforehand – usually for at least six weeks.
No Cure – But a Lifeline Through Diet
There’s currently no cure for coeliac disease, and no effective medication to reverse it. The only treatment is a strict gluten-free diet – and it must be followed meticulously.
That’s easier said than done. “It’s not just about avoiding bread and pasta,” says Sarah. “Gluten is hidden in many processed foods – ketchup, mayonnaise, stock cubes, chocolate bars, even some herbs and spices.” The risk of cross-contamination is a major concern. Even crumbs from a toaster or a shared knife in butter can be enough to cause a reaction.
Some people react with vomiting, pain and diarrhoea; others experience little to no symptoms – but the internal damage is the same. “It’s like being pregnant,” Sarah says. “You might not get morning sickness, but you’re still just as pregnant.”
The Work of the Coeliac Society of Ireland
The Coeliac Society of Ireland plays a vital role in supporting people with coeliac disease across the country. With a small but dedicated team, they publish an annual Food List that verifies thousands of products as safe to eat. “Reading the label isn’t always enough,” Sarah explains. “So we talk directly to manufacturers about ingredients and potential cross-contamination risks.”
The Society also provides training for healthcare professionals, webinars for the public, and in-person events like the Gluten-Free Living Roadshow, which travels to towns and cities across Ireland.
They also run a helpline, local support groups, and a small gluten-free shop in Clondalkin, offering hard-to-find essentials and specialist products – including safe herbs and spices.
Advocacy, Affordability, and Awareness
A gluten-free diet is not only complex – it’s expensive. “Bread, pasta, and snacks are often three to four times the price,” says Sarah. The Society campaigns for government support to reduce the financial burden and continues to advocate for the return of a dietary allowance, once offered to those with special dietary needs.
Sarah also emphasises the need for early screening, pointing to Italy’s recent decision to test all schoolchildren for coeliac disease. “We’d love to see something similar in Ireland – early diagnosis can prevent long-term complications like osteoporosis, infertility, and even some cancers.”
More Than a Dietary Choice
For those living with coeliac disease, gluten-free eating is not a trend – it’s a necessity. But it’s also a deeply personal and sometimes isolating experience. Dining out, travelling, or even eating with family can pose unexpected risks. And because the illness is often invisible, the seriousness of it is easily misunderstood.
That’s why, Sarah says, education and empathy are key: “It’s not about being fussy – it’s about staying healthy and safe.”
🎧 Listen to the full interview with Sarah Keogh:
🌐 Visit the Coeliac Society of Ireland: www.coeliac.ie
📩 Contact the helpline: info@coeliac.ie
Disability Matters airs every Thursday at 4PM on Phoenix 92.5FM, with repeats on Monday at 3PM and Tuesday at 7AM & 3PM. Podcast available after each show on Mixcloud and on bcil.ie/radio.