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10,000 people in NI potentially suffering with debilitating symptoms of undiagnosed coeliac disease


Coeliac Awareness Month Information Stand at Altnagelvin Hospital

Coeliac UK’s Awareness Month (May 2024) campaign runs from 1-31st May, and aims to increase the awareness of the condition and find the 500,000 undiagnosed people in the UK with 10,000 undiagnosed here in Northern Ireland.

Joy Whelan, Advance Practice Gastroenterology Dietitian at the Western Trust explained:

“Coeliac disease is an autoimmune condition where the body’s immune system attacks it’s own tissues when gluten is eaten.  The treatment involves a strict lifelong gluten free diet. Myself and my colleagues aim to treat patients with a diagnosis of coeliac disease holistically ensuring that individual patient centred care is at the heart of the treatment and support for our patients.

“Figures provided by Coeliac UK report coeliac disease affects approximately 1 in every 100 people in the UK… but only an estimated 36% are diagnosed. However, the number of people diagnosed in Northern Ireland each year is increasing and this is a similar trend in the Western Trust and across the UK.”

“We are very grateful for the support of our patients with coeliac disease who provided feedback on the service provided to highlight the impact of coeliac disease on people’s lives in the Western Trust area.

One of the case studies included in this year’s campaign from Coeliac UK talks to mum Dawn and her son Joshua who has a thyroid condition and Down’s syndrome which is one of the high risk factors linked to coeliac disease.

Helping to raise awareness of Coeliac Disease during Coeliac Awareness Month (May 2024) Agnes Lynch from Roslea, Co Fermanagh talks about how Warren Edwards, Western Trust’s Advance Practice Gastroenterology Dietitian  has helped her daughter Mary. Agnes explains:

Mary Lynch Coeliac Disease Patient From Roslea“Mary has Down’s Syndrome and was diagnosed with Coeliac Disease when she was 18years old and is now 34 years old. With the support of the Dietitian we have been able to manage her condition over the past number of years. When COVID-19 started and we weren’t able to attend the Hospital, the Dietitian contacted me on the telephone.  We have got a lot of good advice, support and results from the service. If we had any problems between appointments, I only had to ring Warren and he was always on hand to help and keep us on the right track. We couldn’t have done it without him.”

“My husband Bernard also has Coeliac Disease and is managed by Warren. We are very appreciative of all the help provided and wish to thank Warren for his continued support. Thank you.”

Retired construction engineer Robin Moran from Derry/Londonderry said:

Coeliac Awareness Month Information Stand at Altnagelvin Hospital“I am retired and being a small farmer, I keep myself active and have always been relatively fit. I prided myself on being “iron guts”, being able to eat almost anything and very seldom had tummy upsets. Following a set of routine blood tests, my first signs of general and muscle fatigue which I had put down to my age, were diagnosed as very low foliate and a course folic acid did the trick. The response was impressive and almost immediate. I assumed that would be it sorted. Turned out, maybe six months later, when the fatigue symptoms returned along with pins and needles in my arms legs and abdomen, another set of blood tests showed low folate again. I reconciled myself to maybe having to take folic acid tablets forever, but unknown to me the doctor had included a test for coeliac disease and when I eventually rang to get the “outstanding result”, the doctor explained that the low folate was merely symptoms of the disease. As someone who didn’t really do sick, I was gutted!

“My GP referred me to the gastroenterology support group which led to phone and personal appointments with Joy Whelan. This very much helped me, firstly to come to terms with having a disease, secondly helping me with the practical dietary stuff but more than that, I can now get a phone or personal appointment with Joy within a few days of one phone call. It is such a fabulous service, even for me who didn’t have the worst of symptoms.”

Service user Jennifer Ayton said:

“I really wasn’t expecting to be told I had coeliac disease.  I had been suffering for a while with exhaustion, low mood, brain fog and headaches, but only made an appointment with my GP when I started having dizzy spells as well.  I had no idea what was wrong with me, but it was really starting to impact my life.  After a hard day just getting through work I would be completely wrung out, with no energy or will for anything else.  Thankfully the doctor sent me for a full range of blood tests, which picked up my folate level was low – and when I confirmed there was coeliac disease in the family, an extra blood test confirmed that I had it too.

“Within a few weeks of my diagnosis, I had my first online meeting with the local coeliac clinic.  We were given great advice and information on how to handle our new gluten free diets and what to look out for, were told about the Coeliac UK website, had help with our prescription requests for gluten free foods (an absolute life saver), and were told there would be follow-up sessions, appointments for a DEXA scan and a specialised dietitian set up for us, which I’ve now already had!  I’m so grateful this service exists.  I know it would’ve taken me much longer to get my health back without it.”

A retired psychiatric nurse from Derry/Londonderry who was diagnosed last year with coeliac disease at the age of 85 years old said:

Coeliac Awareness Month Information Stand at Altnagelvin Hospital

“I was feeling unlike myself and had lost some weight and my GP did a blood test to check for coeliac disease. I was shocked to find out that I was coeliac and was referred to Joy Whelan. Joy explained my diagnosis so well and has helped me immensely on my coeliac journey. She is just wonderful and has made a huge difference to my health and wellbeing. My energy levels have increased and I am feeling very well and I am able to get out and about chatting to people and I enjoy travelling again. This service has been very beneficial and Joy has given me a special recipe book to help with my dietary needs it has been incredibly helpful. Thank you Joy for everything you have done, I am so grateful to have been referred to your service.”

“We provide mainly virtual and telephone appointments for patients across the Western Trust area but can provide face to face clinics as well if patients prefer this. We have great support from our Consultant Gastroenterologists who provide advice and review of patients if required. Our service allows patients to get advice and support on their diet in addition to regular blood tests and bone density scans to ensure they are absorbing nutrients properly and an appropriate treatment plan is tailored to meet their needs.”

For more information about Coeliac Awareness Month please visit: