It’s estimated that up to 75,000 people in Ireland could be living with undiagnosed coeliac disease, according to registered dietitian Sarah Keogh, who joined Today with Claire Byrne to discuss the condition with Professor Karen Boland, consultant gastroenterologist at Beaumont Hospital.
While awareness of coeliac disease has grown in recent years, both experts said there’s still confusion about what it is, how it develops, and why some people go undiagnosed for so long. Dietician Sarah outlines what coeliac disease is:
"It’s an autoimmune disease that is triggered by eating gluten in people who have it. About a third of people in Ireland carry the genes for it, so it’s a genetic disease — but it needs a trigger as well."
That trigger, she said, comes from consuming gluten — a protein found in wheat, barley and rye — which causes the immune system to attack the lining of the small intestine. The damage can interfere with the body’s ability to absorb nutrients, leading to symptoms that range far beyond digestion.
"The symptoms can affect the gut, the skin and even the brain in some cases. You can get things like migraines and loss of concentration."
Professor Boland said that while testing methods have improved dramatically, most people who have coeliac disease still don’t know it:
"They suspect that at any one time only about 36% of people who actually have coeliac disease have a confirmed diagnosis – particularly in children."
Once diagnosed, treatment involves a strict gluten-free diet — for life. Sarah explains that the earlier the diagnosis, the better the chances of full recovery:
"Within a couple of weeks to three months, most people are feeling substantially better. Some people take up to two years. Certainly, if you’re diagnosed over 50, the gut mightn’t fully heal."
Prof. Boland added that while many cases are now picked up in childhood, the condition can also develop later in life, even in people who never had symptoms before. She explained that if you get a diagnoisis in your 50s or 60s, for example, it doesn't mean you've always had the condition - it's just developed at a later stage.
Claire raised the growing popularity of gluten-free diets among people who haven’t been medically diagnosed with coeliac disease. Keogh says that while some people genuinely feel better after cutting out bread or pasta, the reasons can vary:
"We’ve about 75,000 undiagnosed coeliacs in Ireland, so those people really are feeling better when they cut out the gluten. But people can be sensitive to other things in wheat. Sometimes they have a wheat allergy. Sometimes they are sensitive to something in wheat called fructan."
That’s why getting a proper diagnosis is essential. Prof. Boland warned against making drastic dietary changes without medical guidance:
"Big dietary changes like dramatic calorie restriction or cutting out whole food groups need to have a medical justification. It becomes a vicious cycle — you don’t like to embed those kinds of behavioural patterns unless there’s a good reason to."
If you think gluten might be an issue, it’s crucial not to give it up before being tested the dietician says, as it will interfere with the correct diagnosis. In order to detect a reaction to gluten, the patient has to be eating gluten in the first place, Sarah says:
"You have to be eating gluten for at least six weeks before your test. If you do cut out the gluten, your test will be negative, even if you are coeliac."
Even after diagnosis, managing the condition can be tricky. The tiniest amount of gluten — as little as 20 parts per million — can trigger a reaction, Sarah says:
"If 20 millionths of the food is gluten, that’s going to trigger a reaction in people with coeliac disease. And it’s interesting, even if they don’t feel it, we see the effect on the gut and the long-term problems with it."
Hidden sources of gluten are a constant concern, the dietician explains. It takes a while to work out which products could trigger a reaction:
"There’s tiny amounts of gluten hidden in ketchup, in mayonnaise, for example. You’re just not expecting to find gluten in lots of foods."
That’s where professional guidance matters, says Prof. Boland:
"It’s really important to go to a CORU-registered dietitian to get that really good advice, especially if you’re a person with some persistent symptoms. It’s often contamination, and trying to identify that contaminant in your diet alone is really challenging."
Luckily, there's a new list published every year of the foods that coeliacs should avoid, Sarah Keogh says; and the Coeliac Society of Ireland works closely with food producers to identify safe products:
"We come up with a book every year and it’s really reassuring to people with coeliac disease that everything in this — there’s no cross-contamination for these foods."
Coeliac disease can also be linked with other conditions, including recurrent miscarriage, thyroid problems, skin rashes and fertility issues. If you suspect symptoms, both experts advise speaking to your GP and asking for a test before making any dietary changes.
For those living with coeliac disease, support and up-to-date information are available through the Coeliac Society of Ireland here.