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The impact of a disease that effects 100,000 people in Ireland 

Coeliac disease is a lifelong autoimmune digestive condition where eating products containing gluten can have harmful impacts on the body if not treated, such as fertility issues and negative effects on the nervous system and bone health. 

It affects around 1% of the population, roughly 100,000 people in Ireland. A further 450,000 people in Ireland are gluten-intolerant.  

There is no cure, just treatment with a strict gluten-free diet to avoid the harmful reactions, including stomach pain, bloating, diarrhoea, fatigue, joint and muscle pain, as well as many more symptoms. 

It is difficult to diagnose the disease, as symptoms closely mimic IBS, chronic fatigue, or stress. To receive an accurate result from antibody blood tests or an intestinal biopsy, patients must eat gluten, as cutting out gluten before testing causes antibody levels to drop and the gut to heal, resulting in a false negative.

Imelda (Mel) O’Neill, aged 55,  has suffered from Coeliac disease for 26 years. She struggled with getting a proper diagnosis. “I wasn’t diagnosed until I was 29. I had been eating gluten and suffered with severe headaches, and after any meal I was so lethargic, I couldn’t get out of bed, even if I just had a slice of pizza. The doctors thought I had bowel cancer.

“It wasn’t until I had a TIA stroke in March 2000 that the doctors did a biopsy on me and diagnosed me with coeliacs disease,” O’Neill said. 

O’Neill found living with the disease “so tough”. She had never even heard of the condition before her diagnosis. “I got a nutritionist who helped me with a gluten free diet. At the time you could only buy gluten-free products through the pharmacy with a prescription, which was very expensive. 

“Luckily, now most stores sell products, even restaurants offer options that have GF beside it. There is always the risk of cross contamination when eating out, it has happened in the past and I feel a reaction straight away.

“It’s a struggle, but the consequences of not following the diet would be a thousand times worse,” she admits. 

Where can people suffering from Coeliac disease receive proper information to help navigate the struggles of a gluten-free diet? 

Consultant dietitian for the Coeliac Society of Ireland, Sarah Keogh, is the founder of Eatwell, a food and nutritional consultancy that supports food businesses and organisations, focusing on “the link between nutrition and building a healthy body”. 

Keogh posts nutritional and gut health tips on Instagram, and has hosted live videos, “as a chance to give information and let people ask questions. It’s especially popular with recently diagnosed coeliacs, who do not fully understand how to work out the lifestyle changes just yet.” @sarahkeoghrd 

“With the Coeliac Society, we have a clinic, with eight of us running that. We recently did our Gluten-Free Living Roadshow, and at that I talked to 50 people alone that suffer with coeliacs. In terms of all my patients across my clinics, I would say I have had about four to five thousand with coeliacs.” 

“There is currently no cure. It is a very difficult diet to follow, and there is a lot of interest in a solution that doesn’t surround the constant diet,” Keogh said. 

“We are involved in one trial at the moment, but it’s a phase two as a potential with the logic of trying to counteract the disease affectively,” said Keogh. “At the minute, research helps us with symptom control, but not counteracting.

“Ireland isn’t a bad country for dealing with coeliacs disease. It’s not on the same level as the likes of Italy, but access to gluten-free products is available. The main issue is within Irish restaurants having a lack of knowledge around the risks of cross contamination. Yes, you can get your gluten-free bread and pasta, but it comes down to having all the cooking materials separate as well. When coeliacs go out to eat, there is always that anxiety.”

 

Visit the Coeliac Society of Ireland website at www.coeliac.ie for more info.