Coeliac disease is different for everyone
A huge thank you to the amazing members of our community for sharing your stories and helping us to raise awareness of coeliac disease.
Frankie, 6 and mum Nicola, Wolverhampton
Symptom: Sickness
Frankie’s mum Nicola explained the difficulty Frankie faced when she was just 18 months old:
'Frankie was constantly vomiting and didn’t want to move from the sofa. We knew it wasn’t right. She missed out on so much because she was so weak and unwell. Most of all she missed out on normal family life. She couldn’t even enjoy a family film.'
'When we finally found out Frankie had coeliac disease everything completely changed.'
'Within two days of going gluten free we had our lives back. By simply cutting out gluten we could do all the things we hadn’t been able to do for so long.'
'She’s now a vibrant, happy and energetic little girl. My advice to parents of children with symptoms like Frankie is to request a test and listen to your instinct.'
Thank you to Frankie and Nicola for sharing their story to help raise awareness and help others to get diagnosed.
Rocco, 12 and mum Hilary, Lancashire
Symptom: Stomach pain
Rocco’s mum Hilary, from Clitheroe, Lancashire, recalls the difficulties of his early childhood:
'From seven years old, Rocco had terrible stomach pain and diarrhoea. It was so severe he missed a lot of school.'
'To be honest, I did not really understand or know the symptoms of coeliac disease and would sometimes dismiss his complaints as him trying to get out of eating a meal – I feel guilty about that now.'
'Since Rocco has been diagnosed and we have changed to a gluten free diet, he is so improved.'
'Eating out can still be a challenge, but Coeliac UK have an app to help and we are always armed with plenty of gluten free snacks!'
Thank you to Rocco and Hilary for sharing their story to help raise awareness and help others to get diagnosed.
Ben, 30, Essex
Symptom: Extreme Fatigue
At the age of 16, Ben noticed he always felt completely exhausted but put it down to his busy life as a student athlete, which revolved around playing football, basketball and rugby.
‘I’d been very active and sporty throughout my whole life. I’d be the butt of the jokes because I’d always be napping. On a 20 minute car journey I’d need a sleep and at first I didn’t think too much of it because I was always busy doing something active.’
As he got older Ben assumed work stress was the cause of his continued tiredness but it was becoming a dad that made him realise that something was not quite right:
‘I had my little one three years ago and everyone says you’re tired as a parent but mine was just different, it wasn’t right. I had stomach cramps and pains after every meal and the symptoms just got stronger. I realised it was nearly 10 years I’d been feeling this way and I wanted to get it investigated.’
The pandemic hit just as Ben was starting investigations, so it was only in September 2022 that he finally received a diagnosis following a positive blood test and endoscopy.
'I had to ask the doctor: ‘What is coeliac disease?’ I’d never even heard of it!’
Since diagnosis, Ben has been strictly gluten free and his symptoms have improved significantly.
‘I feel 100 times better. The tiredness and fatigue has pretty much gone now, I’m back to being fresh – as much as a parent to a 3 month old and a 3 year old can be!’ ‘People often ask me what I’m eating at work and that gives me the opportunity to talk to them about my experience - I’ve grown to want people to ask me because I didn’t put two and two together. When they hear the statistics about how many people are undiagnosed, it really gets them thinking.’
Thank you to Ben for sharing their story to help raise awareness and help others to get diagnosed.
Kevin, 68, Leeds
Symptom: Anaemia
When Kevin attended his regular appointment to donate blood, he was surprised to be told that he couldn’t proceed as his iron level wasn’t high enough. He thought no more of it until a few weeks later he started getting pains in his legs.
‘It was so bad I could hardly walk, he says. ‘A couple of my colleagues saw me struggling to walk to the photocopier and asked if I was alright.’
A visit to the GP resulted in blood tests and a referral to the gastroenterologist. A colonoscopy revealed Kevin had diverticular disease, where pouches grow within the large intestine. A subsequent endoscopy of the small intestine revealed coeliac disease.
‘I was shocked as I didn’t know what coeliac disease was, I had never heard of it. The first thing I did was some research and then looked in my pantry and freezer – 80% of the food had gluten in it so the big task was getting rid of that and re-stocking everything.’
Before the diagnosis in 2010, his undiscovered anaemia left him feeling weak and exhausted.
‘I felt much more tired back then than I do now and was always tired much earlier than other people – I was falling asleep constantly. I’d lost a lot of weight as well, which I’ve now put back on.’ ‘I feel much healthier than before my diagnosis and do more exercise – my legs are totally fine!’
His increased energy levels piqued a new-found interest – running.
Kevin recalls:
‘It started on Saturday mornings when I was walking past the local park and I could see people running round.
I did a bit of research and found out it was a Park Run and thought: ‘That looks good, I could do that. It took me a while to go and do one and then I was hooked! I joined a local running club and they were all really supportive and helped me increase my distance over time. That’s how I started to do marathons."
Kevin has now completed nine marathons including multiple events in Edinburgh (3), Yorkshire (3) and has also raised money for Coeliac UK running the London Marathon.
Thank you to Kevin for sharing their story to help raise awareness and help others to get diagnosed.
Karen, 64, Essex
Symptom: Mouth Ulcers
Karen had suffered with constant mouth ulcers for as long as she could remember but when she fell pregnant with her first daughter, they became unbearable.
‘It was horrific; my mouth was literally covered in ulcers, all around my lips and my gums and I could barely eat a thing. The baby was taking everything out of me, and I remember the doctor saying: ‘The baby is going to be fine, but you’re not.’
Karen suffered with lifelong anaemia and took iron tablets continuously, but the cause of her condition was not investigated further. In the 1980s she was misdiagnosed with irritable bowel syndrome (IBS) and prescribed ineffective medication before she was alerted to the possibility of another condition, 15 years later.
‘My Mum gave me an article from a newspaper about coeliac disease and I could’ve written it! I told my GP I thought I had it and he said, ‘Yes I think you’re right.’
Karen went on to have blood tests and an endoscopy which confirmed her diagnosis of coeliac disease. She started a gluten free diet immediately and says that the change in her health was ‘a miracle, I felt blessed that I was well again’.
For the first time in her life, she didn’t have to take iron tablets.
‘I absolutely blossomed, it was incredible. It’s strange, the thing I remember the most from before my diagnosis wasn’t the diarrhoea, but my terrible mouth ulcers. I’m so relieved I no longer suffer with them.’
From being severely thin from childhood – ‘At my worst I was under 8 stone and at 5’8 tall it was not a good look, it was skeletal’ - she rapidly began to gain weight. ‘I put on stones’, she laughs.
‘I had to buy a whole new wardrobe, it was amazing. I’m now 12 and a half stone ish and look pretty good weight wise for a 64 year old!
Karen is committed to raising awareness of autoimmune diseases, including coeliac disease.
‘I like to remind people of the potential severities of the condition if you don’t go gluten free. Any problems with your gut or bowels, or if you have symptoms like mouth ulcers, you must get it checked out.’
Thank you to Karen for sharing their story to help raise awareness and help others to get diagnosed.
Charlene, 30, Scotland
Symptom: Recurrent Miscarriage
Before being diagnosed with coeliac disease Charlene experienced 15 miscarriages within 4 years.
‘It was heart breaking. It became something I got used to, having very early miscarriages. I went to the GP constantly trying to find out why it kept happening. I was trying since 2016 and I would never get past the 7 week stage.’
Charlene was referred for further tests and was diagnosed with iron deficiency anaemia and vitamin B12 deficiency but the cause was unknown at that stage.
‘After getting bloods done I was put on vitamin tablets and was on them for years. Once I was treated for the B12 deficiency with injections, I got pregnant and this resulted in a healthy pregnancy.’
Happily, she and her husband welcomed their daughter Amelia in May 2019. The couple began trying for their 2nd child one year later and sadly experienced two early miscarriages.
‘I also had recurrent mouth ulcers and visual migraines and realised I needed further tests.’
Another course of B12 injections and a subsequent check-up revealed that Charlene’s levels of B12 hadn’t risen as hoped suggesting issues with absorption of nutrients.
‘I had blood tests and was shocked when the results came back saying I had the antibodies for coeliac disease, especially as no one else in the family has it.’
Post diagnosis, Charlene adopted a strict gluten free diet and saw improvements very quickly.
‘As soon as I cut gluten out of my diet, I fell pregnant within weeks and went on to have my second child with no problems at all - I didn’t need the B12 injections during my pregnancy.’
Son Alfie was born in 2021 and Charlene believes ‘undiagnosed coeliac disease definitely contributed to my earlier miscarriages.’
She wants to raise awareness of the symptoms of coeliac disease to help others:
‘For people that are experiencing difficulty conceiving or seeing pregnancy to full term I’d like them to consider the possibility it could be coeliac disease and ask for a test – it’s just a simple blood test, and for me could have saved a lot of time and heartache’.
Thank you to Charlene for sharing their story to help raise awareness and help others to get diagnosed.
Laura, 39, Northern Ireland
Symptom: Neurological symptoms
Laura started to experience neurological symptoms of undiagnosed coeliac disease in January 2022, which had a profound impact on her daily life.
‘I had terrible brain fog – it was the worst! My family were used to me being on top of everything and then my kids would say: ‘Mummy, you sent me to school today wearing my PE kit and I was meant to be in school uniform.’ I didn’t know the days of the week – I was really struggling.’
Her GP initially thought her symptoms were a lasting reaction to a Christmas bout of Covid and advised her to return in three months. She had blood tests which revealed a folate deficiency and was prescribed folic acid, which proved ineffective. By May she was seriously concerned about her health.
‘I was ringing the Doctors saying, ‘I’m a shadow of my former self, there is something really badly wrong.’ I wasn’t going anywhere or speaking to people, because I was just complaining constantly about not feeling well.’
The neurological issues continued to have a detrimental effect on the family routine and Laura became increasingly frustrated.
‘My kids have after school activities - swimming, drama, dancing – and I’m usually all over it and the admin people would text me saying: ‘I hate to bother you but do you remember about your daughter’s fees?’ All the things I usually organised like clockwork - I couldn’t even think to bring the payment book out and if I did remember then I couldn’t make sense of when I last paid or how much I needed to pay.’
She began to wonder if her symptoms would impact her ability to work:
‘At one stage I didn’t think I’d be able to return to my job after maternity leave because I thought ‘If you can’t manage your own personal life, how are you going to manage a shop or other people?’
Early that summer, Laura’s GP advised her to watch You Tube yoga videos after she complained of a sore back and pain in her muscles. Her family history of cancer was now making her worry there was something far more serious occurring than the lingering effects of Covid.
In August she asked her doctor to investigate possible post-natal depression, which was quickly ruled out. Laura says the frightening part was that her whole body was affected:
‘I didn’t feel that any part of me was working normally. I had pins and needles in my hands and feet, I had brain fog. I was just about getting through the day from morning to night and going to bed, but not sleeping well.’
After experiencing severe bowel issues during a hen weekend, she saw a different GP in August who did ‘every test under the sun’ and was told she had tested positive for coeliac disease.
‘The doctor asked me if it was a surprise and I realised it wasn’t because it ran in my family, but I was never asked about it and it didn’t occur to me that it could be that condition.’
Laura was referred to a gastroenterologist where coeliac disease was confirmed and she was advised to begin a gluten free diet. She felt unwell for the first month before experiencing a marked improvement in her symptoms.
‘I was huffing for a while as I couldn’t eat what I wanted to so was supplementing with foods that weren’t the healthiest – my family were forced into a bad diet as well!’
By November she was finding gluten free items she liked to eat, and tasty alternatives to gluten containing food. Christmas 2022 arrived and with it, increased energy levels – Laura had now recovered enough to enjoy socialising and plan ahead like she used to.
‘I was excited to get organised for Christmas nights out, I was looking ahead and starting to feel good.’
She now feels she is ‘normal again and capable of doing it all like I used to.’ Laura now wants to raise awareness of how debilitating the symptoms can be:
‘I don’t think people understand the impact of coeliac disease. People talk about their invisible illnesses and this was the same; I didn’t look sick so I couldn’t get others to understand how unwell I felt last year. It was very strange and I felt lonely.
My closest friends and family who know how different I was have now said:
‘Wow, you really are coming round to yourself again and it’s great to see.’