On a recent episode of Disability Matters, host John Comiskey spoke with Sarah Keogh, dietitian with the Coeliac Society of Ireland. Their conversation shed light on the realities of living with coeliac disease, the challenges of diagnosis, and the vital support available for people across the country.
What Is Coeliac Disease?
“Coeliac disease is an autoimmune condition,” Sarah explained. “When someone with coeliac eats gluten—a protein found in wheat, barley, rye, and most oats—it triggers the immune system to attack the lining of the gut.”
This reaction damages the small intestine and can cause a wide range of symptoms, from stomach pain, bloating, diarrhoea, or constipation, to migraines, skin rashes, mouth ulcers, brain fog, and fatigue. In fact, around 40% of people with coeliac disease experience few or no digestive symptoms at all, which makes the condition harder to detect.
Coeliac disease is far from rare. It is estimated that one in 50 people in Ireland are affected, yet three-quarters remain undiagnosed. Genetics play a strong role—if you have a close relative with coeliac disease, your risk increases significantly.
The Importance of Strict Gluten Avoidance
Unlike gluten intolerance, where small amounts may be tolerated, coeliac disease requires a strict gluten-free diet. “Even the tiniest crumb—just 20 millionths of your food—can trigger an autoimmune reaction,” Sarah noted.
This means that cross-contamination is a major concern. Shared butter dishes, toasters, or cooking utensils can all pose risks. “It’s not just about avoiding bread or pasta,” she said. “You have to watch sauces, stock cubes, even some brands of ketchup or grated cheese.”
Long-Term Health Risks
If untreated, coeliac disease can lead to serious complications such as osteoporosis, infertility, delayed growth in children, repeated miscarriage, and even a higher risk of certain cancers. “It’s not just a fad or lifestyle choice,” Sarah stressed. “This is a serious autoimmune condition that requires lifelong management.”
The positive news is that once diagnosed and managed with a strict gluten-free diet, symptoms improve dramatically and long-term health risks return to normal.
Support from the Coeliac Society of Ireland
Founded over 40 years ago, the Coeliac Society of Ireland is a lifeline for many. It provides:
- Dietitian-led Clinics – professional advice to help people adapt safely to a gluten-free diet.
- The Food List – an annually updated guide of verified gluten-free products in Ireland.
- Education & Advocacy – raising awareness among healthcare professionals and food manufacturers.
- Peer Support – connecting people through stories, workshops, and the annual Gluten-Free Roadshow.
The Roadshow is a highlight, bringing together hundreds of people each year for talks, cooking demos, and a fully gluten-free lunch. “It’s not just about information,” Sarah said, “it’s about community and showing people they are not alone.”
Advice for the Newly Diagnosed
For anyone recently diagnosed, Sarah’s guidance is clear:
- See a registered dietitian – “It’s more complicated than people think, and proper support makes all the difference.”
- Don’t go it alone – contact the Coeliac Society for resources, peer support, and practical tips.
- Stay on gluten until testing – cutting out gluten too early can mask diagnosis, so medical advice is essential.
A Message of Awareness
Sarah also highlighted the need to move beyond misconceptions. “Too often, coeliac disease is dismissed as a fad. But for those living with it, the challenges are daily and very real. Awareness is key—not just for individuals, but for schools, restaurants, workplaces, and healthcare providers.”
Final Thoughts
Living with coeliac disease requires vigilance, but with the right support, people can live healthy, fulfilling lives. As Sarah concluded:
“The treatment is tough, but it works. A strict gluten-free diet transforms health, energy, and quality of life. That’s something worth highlighting.”
To learn more, access resources, or get support, visit www.coeliac.ie or email 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.
Compiled by Valentyna Hordiichuk