HSE delays causing unnecessary suffering for people diagnosed with coeliac disease
• Mother tells of 14-month wait for daughter (4) to see dietitian
• Coeliac Society of Ireland offers dietitian consultations to combat crisis
The Coeliac Society of Ireland has expressed concern that people recently diagnosed with coeliac disease are suffering unnecessarily due to the lack of direct and immediate access to dietitians in the health service.
It comes after a recent survey of 1,150 Society members found that some people with coeliac disease faced delays of up to 18 months after diagnosis before getting to see a dietitian in some hospitals –and many have never been referred to a dietitian by their GP.
An estimated 47,500 people in Ireland have the chronic autoimmune condition but only 12,000 have been diagnosed. The only treatment for coeliac disease is a strict gluten free diet for life.
Helen Calvey’s daughter Elena O’Neill was diagnosed with coeliac disease when she was just four years old and had to wait more than a year to see a dietitian.
Helen said: “My little girl had to wait 14 months to see a dietitian after she was diagnosed with coeliac disease – that’s a very long time to be unsure about what food will or won’t make your child unwell. We finally got to see a fabulous dietician and Elena is now thriving on a diet that is both balanced and completely gluten free. She is five now but no child, or adult, should have to wait that long to see a dietitian when they have such a life-altering condition.”
People with coeliac disease react abnormally to the protein gluten in food. Symptoms of coeliac disease can include abdominal bloating, wind or stomach pains, constipation, weight loss and migraines. Long-term health issues associated with untreated coeliac disease include malnourishment, anaemia, osteoporosis, infertility and even neurological conditions.
The time it takes to recover from gut damage caused by untreated coeliac disease varies between people and can take between six months and up to five years in more extreme cases.
Coeliac Society of Ireland chief executive Gill Brennan said: “It is crucial for people who are diagnosed with coeliac disease to see a qualified dietitian as soon as possible so they can start the process of adapting their food intake immediately. The disease can be very debilitating and may have some very serious long-term consequences if not managed as early as possible.
“Once you are in the system the dietitians within the HSE are very well qualified to look after the needs of those diagnosed with coeliac disease, but the problem is that there are some very significant delays in getting appointments and some patients are never referred in the first place. Especially for children this can lead to extending unnecessary pain and suffering and in some cases, these delays can affect the quality of life in the long run.”
In order to help alleviate these delays, the Coeliac Society of Ireland is offering reduced-rate in-house consultations with a CORU-registered dietitian for its members.
Coeliac Society dietitian and nutritionist Sarah Keogh said: “A qualified dietitian will educate sufferers about following a strict gluten-free diet, which is one of the most difficult diets to get right. We have members who were told to ‘go online’ for information – this is not good enough for a chronic medical condition. Adults and children who are suffering pain, stunted growth and damage to bones and fertility need to be seen by a CORU-registered dietitian soon after diagnosis.”
The Coeliac Society supports anyone diagnosed with coeliac disease. Membership costs €35 annually and includes a comprehensive annual Food List, listing thousands of suitable products available in Irish supermarkets; eating out advice; seasonal recipes and advice for Easter, Halloween and Christmas; a monthly e-zine with the latest on events and a quarterly magazine with articles on travel, health and recipes; as well as access to a phone support team.
Notes
• Coeliac disease is an auto-immune disease in which the affected individual reacts abnormally when gluten is ingested. The intestine becomes inflamed and damaged resulting in poor absorption of essential nutrients. Gluten is a protein found in many foods including bread, pasta, gravy, soy sauce and beer.
• There is no cure for coeliac disease and the only treatment is a strict gluten-free diet. Annual medical and dietetic check-ups are also advised.
• The first step to receiving a diagnosis is to visit your GP for a simple blood test. It is important to be on a gluten containing diet before testing. Eliminating gluten before testing could lead to a false negative test result. If the test is positive you will be referred to a gastroenterologist for an endoscopy. Once diagnosed, it is essential that you visit a CORU-registered dietitian to learn how to manage your coeliac disease.
