A condition that often goes undiagnosed for years, Coeliac disease affects thousands of people across Ireland—many without even realising it. Speaking with host John Comiskey, dietitian Sara Keogh from the Coeliac Society of Ireland sheds light on this complex autoimmune condition, its wide-ranging symptoms, and the importance of early diagnosis.
What is Coeliac Disease?
Coeliac disease is an autoimmune condition triggered by gluten—a protein found in wheat, barley, and rye. When someone with coeliac disease consumes gluten, their immune system reacts abnormally, damaging the gut and potentially affecting multiple systems in the body.
“It’s not just a digestive condition,” explains Keogh. “It can affect the nervous system, the skin, energy levels, and even mood.”
A Condition with Many Faces
While commonly associated with digestive issues such as bloating, diarrhoea, and stomach pain, coeliac disease can present in many different ways. Some people experience:
- Chronic fatigue or “brain fog”
- Headaches or neurological symptoms
- Skin conditions like dermatitis herpetiformis
- Recurrent mouth ulcers
- Low iron levels or anaemia
- Poor coordination or balance
“Some people have no gut symptoms at all,” Keogh notes. “That’s one of the reasons it can go undiagnosed for so long.”
In fact, it can take an average of 14 years for a diagnosis to be made.
The Hidden Numbers
In Ireland, it’s estimated that between 80,000 and 100,000 people may have coeliac disease—but up to 80% remain undiagnosed.
Women are more commonly affected than men, with a roughly two-thirds to one-third split. The condition also tends to run in families, and is linked to other autoimmune conditions such as thyroid disorders and type 1 diabetes.
Diagnosis Matters
Getting tested is crucial—but timing is key.
“One of the biggest mistakes people make is cutting out gluten before testing,” Keogh warns. “You need to be eating gluten for at least six weeks before a blood test, otherwise results may come back falsely negative.”
Diagnosis typically involves:
- A blood test through a GP
- Follow-up biopsy (for adults) to confirm the condition
Living Gluten-Free
Currently, the only treatment for coeliac disease is a strict gluten-free diet—completely eliminating gluten from all foods.
“It has to be zero gluten,” Keogh explains. “Even tiny traces can trigger the immune response and cause long-term damage.”
This includes being mindful of:
- Hidden gluten in processed foods
- Cross-contamination in kitchens
- Eating out safely
Managing the condition can be challenging—not only practically but financially, as gluten-free products are often significantly more expensive.
The Role of the Coeliac Society
For over 50 years, the Coeliac Society of Ireland has supported people living with coeliac disease through education, advocacy, and practical resources.
Their work includes:
- A comprehensive annual food list
- Dietitian support services
- Public awareness campaigns
- Training for restaurants and healthcare professionals
- Events, webinars, and a nationwide gluten-free roadshow
“We want people to feel informed, supported, and confident in managing their condition,” says Keogh.
Eating Out and Awareness
Ireland has made progress in offering gluten-free options, but challenges remain—particularly around cross-contamination.
“Restaurants often understand gluten-free ingredients,” Keogh explains, “but not always how easily contamination can happen—from shared toasters to cooking oil.”
The Society offers training for hospitality providers to improve safety and awareness.
Looking Ahead
Encouragingly, other countries like Italy are leading the way with widespread screening and strict food safety standards. In Ireland, there is growing awareness—but more needs to be done.
For individuals experiencing unexplained symptoms, Keogh has a clear message:
“If something doesn’t feel right, ask your GP to rule out coeliac disease. A simple test could give you answers.”
Learn More
For information, support, and upcoming events, visit:
🌐 celiac.ie
📧 info@coeliac.ie
Going Gluten-Free: Sarah Keogh on Living with Coeliac Disease
This interview aired on Disability Matters on 92.5 Phoenix FM, a programme produced by Blanchardstown Centre for Independent Living (BCIL).
Tune in to Disability Matters Thursdays at 4PM | Repeats: Mon 3AM, Tue 3AM & 7AM | Also available on Mixcloud and on bcil.ie/radio.
Compiled by Valentyna Hordiichuk