Coeliac Stories
Our members share their experiences of being diagnosed and learning to live with Coeliac Disease.
I am a coeliac who was diagnosed in 1999. I also have rwo sisters with it and two first cousins, so I think there is a strong genetic link. My two sisters – one had bloating and with the other, an eye specialist spotted something in her eyes, I think it was iritis, after she had one of her children and advised her to see her GP. In my case, I had the indigestion for about a year or so and put it down to stress as I was a busy mother working outside the home and also visiting parents and parents in law every month or so at weekends. I said I would check it out if it persisted when I was on holidays, which it did. I went to my GP and explained my story. He sent me for blood tests and a scope in St James’s Hospital in Dublin. I think all doctors should do a blood test for coeliac disease on patients if they have iffy stomachs, indigestion, etc. – even if only to rule it out. It made a massive difference to me following the gluten free diet. I actually looked as if I lost weight, felt better and more energetic.
Coeliac Society Member
Dublin (Age 65)
I think all doctors should do a blood test for coeliac disease on patients if they have iffy stomachs, indigestion, etc. – even if only to rule it out
I suffered ill health for many months, which included constant severe headaches and was eventually taken to A&E by ambulance
I spent months as a child, I was four years old, in two hospitals but was not diagnosed, and my GP did not diagnose me either. I moved to the UK when I was 20 and attended a GP but was only given medication to settle my stomach and/or pain relief. When I was 23, I suffered ill health for many months, which included constant severe headaches and was eventually taken to A&E by ambulance. I had many blood tests which included testing for coeliac disease, due to being Irish. I was diagnosed in 1988 and immediately started a gluten free diet. I have a brother and sister also diagnosed – they had to request, even insist, on the blood test as they were experiencing a lot of the symptoms I had and explained that there was a coeliac in the family. Both were diagnosed in Ireland. My sister did attend the hospital dietician but she found her experience also to be very limited – with a sample of one brand of foods displayed to her. I have experience good health since diagnosis and rigidly adhere to a gluten free diet and have my bloods done annually. The range of gluten free foods has expanded immensely with many new companies bringing out new ranges.
Coeliac Society Member
Kildare (Age 55)
Seven years investigating what was wrong – then my life changed when I was diagnosed. I remember after three days or so on being on a gluten free diet and my mum asked, as she has done every day for about seven years, ‘how’s the tummy?’ and I, for the first time in the longest time said, ‘it’s fine’. Realising I meant it, I burst into tears. There was no pain, I was flat and soft. Imagine, I wanted to feel soft and squidgy! My family and friends were the most amazingly supportive people I could ever imagine. My mom got me a toaster for my 21st birthday and I sobbed. I have a separate press and I have food labels in my fridge. My friends find new coeliac restaurants and have learned all about contamination. They protect me but when it means they are limited to restaurants or places to go or things to do when I am contaminated and in pain and need access to a toilet, or just having to remember to not contaminate butter or cheese in our shared fridge, then I do feel guilty that it affects their lives too.
Coeliac Society Member
Dublin (Age 22)
My mum asked, ‘how’s the tummy?’ and I, for the first time in the longest time said, ‘it’s fine’. Realising I meant it, I burst into tears. There was no pain.
The diagnosis was a relief for me, I could stop worrying and start living
My symptoms were bloating of the stomach, diarrhoea and a churning sensation in my stomach, and fatigue. I also noticed muscle wastage, particularly on my bottom! I was frequently unwell, with colds, flu, etc. and was at the doctor frequently. I went to an allergist but it was of no benefit at all. I went for a bronchoscopy, but nothing showed up. I went to an ENT consultant; he noticed a minor issue with my sinuses! A new doctor arrived at the medical practice I was attending and she said she knew what the problem might be but wouldn’t say any more until the blood tests returned. I had had numerous blood tests in the past so wasn’t hopeful that anything would show up. I didn't know she was having my blood tested for coeliac disease. The diagnosis was a relief for me, I could stop worrying and start living. I wanted to recover my health and if diet was the way to do that, I was very happy to adopt a coeliac diet and gluten free lifestyle. I stick strictly to the diet even when on holiday abroad. the Coeliac Society is a wonderful support.
Coeliac Society Member
Cavan (Age 62)
I suffered with diarrhoea and bloating for many years but never knew the cause. I also suffered with acid reflux and my GP thought I might be damaging my oesophagus so she sent me for an endoscopy. The biopsies taken indicated coeliac disease. Once diagnosed I worked with the dieticians in the Bon Secours Hospital Cork who advised me on the foods to avoid, what supplements to take and how to maintain a healthy digestive system. I have now been living gluten free for eight years. Something I would like to make all coeliacs aware of is the increased risk of osteoporosis. I was not made aware of this until recently and have now been diagnosed with osteoporosis. When a person is suffering the symptoms of coeliac disease their bodies cannot absorb all the nutrients and calcium in the food and so they are more at risk of developing osteoporosis. My system was compromised from all the years I was undiagnosed.
Coeliac Society Member
Cork (Age 54)
I have now been diagnosed with osteoporosis... My system was compromised from all the years I was undiagnosed
Since being diagnosed and moving on to a gluten free diet, my health has been transformed – all my symptoms have disappeared
Loss of weight, fatigue, diarrhoea, feeling the cold more than others, cold sores, pale and anaemic, unable to eat bread or only a limited amount of bread which had to be really fresh, upset stomach – these symptoms were very typical really. I also remember throwing up while having a pint of Guinness in my early 20s. I feel I was a coeliac for about 25 years before being diagnosed. I was 28 when I was diagnosed and had symptoms like these since I was five or six when I look back. I went to my doctor, who gave me medication for anxiety. I eventually changed doctors and when my symptoms were severe he did blood tests and this discovered a low blood cell count. My doctor wanted to know why this was so he sent me for a biopsy and coeliac disease was confirmed when I was 28. Since being diagnosed and moving on to a gluten free diet, my health has been transformed – all my symptoms have disappeared. I put on two stone in three months. I took to the gluten free lifestyle like a duck to water and am 100% diligent.
Coeliac Society Member
Limerick (Age 57)
I had been suffering with ‘psoriasis’, so I was told, for years. I also had progressing pain in my upper ribcage on my right hand side after every meal, as well as stomach bloating and excessive burping. It got to the point that I was in pain every day. I happened to Google stomach pain and rash – coeliac disease came up, so I went to my GP and asked to be tested. He said he was 99% sure that was not what I had, but I was 100% sure I had something wrong with me. My GP was reluctant to test, as I supposedly didn't show any typical symptoms, but I was glad I insisted. I was diagnosed about 10 -11 years ago, and I had almost instant relief of all my symptoms after going on a gluten free diet. It literally changed my life for the better.
Coeliac Society Member
Cork (Age 33)
My GP was reluctant to test, as I supposedly didn't show any typical symptoms, but I was glad I insisted
I had spent 40 years going to doctors who treated me for all sorts of things, including scabies
My symptoms included having an Itch on my knees and elbows, and food constantly repeating on me. My dentist referred me to the Dental Hospital because of the erosion of enamel on my teeth. They in turn referred me to the Mater Hospital for a gastroscopy. The diagnosis came from this. Before this I had spent 40 years going to doctors who treated me for all sorts of things, including scabies! Once I was diagnosed, there was an almost immediate improvement in my overall health. It is 14 years since my diagnosis so supports were not as good as now. However, the advice of the dietician has kept me on the straight and narrow.
Coeliac Society Member
Waterford (Age 69)
After I was diagnosed, the doctor said to get my kids blood tested to make sure they are ok. As soon as he said it, I know my youngest had it – she always has such a swollen belly. All three girls got their bloods done and the two youngest came back positive. But again, they wanted scope to be 100% sure. So, we did, waiting a few months and then got it done in Clane Hospital in Kildare. It was positive results for the two girls. It was hard for them to understand that they can’t have certain sweets and treats when they were only 2½ and four years old.
Mother
Cork (Age 36)
As soon as he said it, I know my youngest had it – she always has such a swollen belly
My GP referred me to a gastroenterologist who wanted to just 'open me up' to see what the problem was!
My diagnosis was 10 years ago. I was losing weight, had constant diarrhoea and felt tired all the time. I went to my GP and she was baffled so referred me to a gastroenterologist who wanted to just “open me up” to see what the problem was! Luckily I refused and went for a second opinion and only then was I diagnosed with a simple blood test. I follow a gluten free diet, which I find difficult, especially when eating out and going abroad. I also became a member of the Coeliac Society. Since I was diagnosed my sister and two nieces have also developed the disease!
Coeliac Society Member
Mayo (Age 41)
I suffered terribly with severe constipation and weight gain for almost all my life. I was always really tired and feeling ill. When I was about 50, I was admitted to hospital several times over the following 15 years because I was too ill to cope. I had numerous tests, all coming back negative. But each time I had a gastroscopy and endoscopy, the doctor would ask if any member of my family was coeliac because there was inflammation. I would answer that there was no family member with it. Each doctor would then say I was carrying too much weight so it couldn’t be that. About 10 years ago, I got a most terrible rash on my elbows, knees, backside and behind my ears. Our GP had never seen anything like. He sent me to a skin specialist who tried several different creams over 18 months. Nothing helped and I was having to sit in a bath several times each day to get some relief. The rash was now open sores and some on my seat were getting infected. The discomfort was unbearable. I had attended Dr Bruce Mitchell for a problem with my tongue swelling and decided to contact him to see if he could help. As soon as he saw the sores, he said: “Coeliac.” I couldn't believe it. Dr Mitchell did the necessary tests and confirmed his diagnosis. I now have a new life, no more constipation and, most of all, very little problem with the rash. I am super sensitive to gluten. I can pick up gluten from other people in shops or the church and of course eating out is a problem because gluten is in the air. I cannot touch anything with gluten in it. Even the dog’s food has to be gluten free!
Coeliac Society Member
Galway (Age 65)
I was admitted to hospital several times over the following 15 years because I was too ill to cope. I had numerous tests, all coming back negative
I was following a gluten free diet for about five months before I really started to notice any differences, so it really is a matter of trusting in the process
I experienced stomach pain and was exhausted all of the time to the point where I was missing school and unable to study for my school exams. I was going to my GP for years complaining of symptoms before I was tested for coeliac disease. When I was eventually tested, and the test came back positive, I was referred to get a gastroscopy. I was following a gluten free diet for about five months before I really started to notice any differences, so it really is a matter of trusting in the process. Once I did start noticing the difference it was amazing. I suddenly had so much more energy and my mood improved immensely. Overall, my quality of life improved.
Coeliac Society Member
Dublin (Age 22)
When I would eat, I would experience huge abdominal discomfort (awful cramps). I would start sweating with the severe pain and I would end up with intense diarrhoea. Therefore, I stopped eating a lot of food because I thought it was just my tummy being sick. I lost a lot of weight and then eventually (18 months later on experiencing these horrible symptoms), I was majorly fatigued and my doctor thought I had glandular fever. I got my bloods tested and I asked to be tested for coeliac disease too because my dad kept saying to get it done. I went to the doctor and explained how tired I felt (did not mention the cramps, etc.) and a blood test was taken for suspected glandular fever. I asked for a coeliac test too. This blood test came back negative for glandular fever and positive for coeliac so I had to get an endoscopy done to confirm it.
Coeliac Society Member
Clare (Age 21)
I was majorly fatigued and my doctor thought I had glandular fever. I got my bloods tested and I asked to be tested for coeliac disease too because my dad kept saying to get it done
Since diagnosis the difference in my life is almost unexplainable. I have gone from being very sick to a healthy mother of three children who can again be physically active. I can now look again at myself in the mirror and not fear seeing my own skin
It began with blister-like hives on my skin, initially on my shins and knees. Over the next almost 10 years this progressed to be a very extensive skin condition. Symptoms including excessive bloating and constipation, which in later years before my coeliac disease diagnosis developed into diarrhoea and weight loss which was unexplained. I had also become very anxious and was experiencing very painful periods. The skin condition had become unbearable in the latter years.
The initial course of action was dermatology and medications for IBS but eventually I was tested for coeliac disease. Since diagnosis the difference in my life is almost unexplainable. I have gone from being very sick to a healthy mother of three children who can again be physically active. I can now look again at myself in the mirror and not fear seeing my own skin.
Coeliac Society Member
Laois (Age 36)
My little girl is four now and was diagnosed at age three. She is the first known coeliac in our family. Generally I would flag her fussy eating at any medical appointments and at age two, I brought it up at her developmental check up with the Public Health Nurse. My concerns were dismissed with an insinuation that we were offering her foods that were perhaps too fussy/not normal enough. I was told what foods to feed her to keep her nutrition up when realistically the child would refuse everything. It took nearly another 12 months to get a coeliac diagnosis. We spent a solid hour talking to this dietician where she quizzed us about everything from womb to present day. At the end of the session she told us that it was one of two things, one of which was coeliac disease! I was sceptical of it being coeliac disease but we returned to our GP who carried out a blood test and the results indicated without doubt that she was a coeliac. While our little girl is still quite a fussy eater, she has come a long way in 12 months. She is a lot happier, has more energy and is catching up on her height and weight. It was such a relief to finally know what was behind her fussy eating.
Mother
Leitrim
Our little girl has come a long way in 12 months. She is a lot happier, has more energy and is catching up on her height and weight. It was such a relief to finally know what was behind her fussy eating
Since diagnosis and moving on to a gluten free diet, my anaemia is gone, my stomach cramps have gone, the pains in bones are gone, and my skin is normal instead of ghostly white pallor
My symptoms were low iron/anaemia, which was not responding to iron tablets, stomach cramps, diarrhoea/constipation, pains in my bones, very frequent colds, bronchitis, and flu type illnesses. My symptoms did not alert any medical or other staff to my condition, until I was being tested for a bleeding disorder in hospital (slow to clot), at the age of 51. This was despite having symptoms since a very young age, and being brought to several GPs about them. Since diagnosis and moving on to a gluten free diet, my anaemia is gone, my stomach cramps have gone, the pains in bones are gone, and my skin is normal instead of ghostly white pallor. Without the Coeliac society in Ireland I would have nowhere to turn for information. I think this organisation should be part of the health service.
Coeliac Society Member
Offaly (Age 64)
