I was constantly exhausted – I thought it was work stress but then I found out the truth… the symptoms you must check
IF you’re feeling extra tired, have lost a lot of weight without trying or have been told you’re anaemic, you might have coeliac disease.
The autoimmune condition affects one in 100 people in the UK – but an estimated 500,000 Brits have absolutely no idea they have it.
That’s because it can present itself in a range of ways, with symptoms often dismissed as other ailments like irritable bowel syndrome (IBS).
But as five patients who experienced less typical symptoms before diagnosis explain here, a gluten free diet could be just the ticket to turn your life around.
Ben Cirne – extreme fatigue
It took almost ten years for Ben Cirne, 30, to finally understand why he was so tired all the time.
Aged 16, he noticed he always felt completely exhausted – far more so than his friends – 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 but I’d become the butt of the jokes because I’d always be napping,” the dad-of-two said.
“On a 20-minute car journey I’d need a sleep and I was constantly falling asleep on the sofa.
“For a teenager to be that fatigued wasn’t normal, but I didn’t think too much of it because I was always busy doing something active.
“My family were saying I shouldn’t be that tired, but I didn’t listen.”
Ben, from Ipswich, Suffolk, continued like this for years.
As he got older, he assumed work stress was the cause of his continued tiredness, but it was becoming a dad that made him realise there was something else going on.
He said: “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 couldn’t play with my own kids in the park like other dads could and it was heartbreaking.
“I realised it was nearly ten years I’d been feeling this way and I was so sick of it so I finally went to the doctor to get it investigated.”
After several tests, Ben, who works as a football analyst for Wycombe Wanderers, was told he had coeliac disease in September 2022.
“I had to ask the doctor to spell it for me,” he said. “I’d never heard of it before.”
Since diagnosis, Ben has been strictly gluten free and his symptoms have improved significantly.
He now has enough energy to play with his kids and feels “normal” for the first time in years.
“I feel 100 times better. The tiredness and fatigue have pretty much gone now,” he said.
“I’m back to being fresh – as much as a parent to a seven-month-old and a three-year-old can be.
“The difference between me then and me now is quite frightening. I’m a different person.”
The biggest challenge has been when it comes to feeding his family – but they are getting more used to it week by week.
“It can be very tough cooking for the kids and making packed lunches with all the different chopping boards and knives – and it’s especially difficult to resist when there are some leftover chicken nuggets on the kids’ plates after dinner,” he said.
“The cost of it is also extremely high, though supermarkets now have great ranges of products.
“But I feel so great it doesn’t matter. Not to be dramatic, but it has truly changed my life.”
Kevin – anaemia
Kevin, 68, had donated blood for years, but one day when he attended his regular appointment, he was told he couldn’t proceed as his iron level wasn’t high enough.
He thought no more of it until a few weeks later when he started getting pains in his legs.
“It was so bad I could hardly walk,” he said. “A couple of my colleagues saw me struggling to walk to the photocopier and asked if I was alright.”
Kevin then noticed his energy levels crash and he began to lose a lot of weight.
“I was always so tired and I was falling asleep constantly,” he added.
A trip to the GP and several blood tests later, Kevin was told he had diverticular disease, where pouches grow within the large intestine.
A subsequent endoscopy in 2010 revealed he also had coeliac disease.
Like many, he’d never heard of the condition, never mind had any idea how to manage it.
“I was shocked,” he said. “The first thing I did was some research and then looked in my pantry and freezer – 80 per cent of the food had gluten in it, so the big task was getting rid of that and re-stocking everything.”
With his conditions now under control, Kevin feels better than ever and has even started running – something he never thought he’d be able to do.
Kevin, from Leeds, added: “I feel so much healthier than before and I do far more exercise – my legs are totally fine.”
He started doing his local Parkrun and has now completed nine marathons.
Charlotte Burke – stomach issues
Charlotte Burke, 25, knew something was wrong when she started having frequent stomach issues and would often feel full very quickly.
But like many, she never thought it could be related to her diet, with her immune system attacking her own tissues each time she ate.
Charlotte eventually visited her doctor and had several tests, but it wasn’t until she gave a blood sample that she was given a positive coeliac diagnosis.
It took over a year to get used to living without gluten, but she has finally found her feet.
Although her main symptoms are now under control, there are daily complications around every mealtime as it’s not always possible to find suitable food and the risk of cross contamination is high at work or when eating out.
As a result, Charlotte is constantly having to think about her meals which can be exhausting, especially as she can’t heat food in a shared microwave for fear of getting sick, or easily order a takeaway or grab something on the go like her friends.
To make matters worse, the cost of living crisis has added to the challenges.
Charlotte, who works at the University of Central Lancashire Students’ Union, said: “I do a food shop every three weeks which easily costs £100 for two of us, and now, with the cost of gluten free food being so high as well, it’s made it even more difficult.
“I’m not extravagant and tend to batch cook our meals to avoid having to cook every day and look out for deals and stock up when I can.
“A lot of the time I have to visit multiple shops to find the things that we need, which makes the food shop even more expensive.
“I only buy the necessities and can only afford to buy treats if they are on offer.”
What is coeliac disease and what are the main symptoms?
COELIAC disease is an autoimmune condition that affects one in 100 people in the UK.
When someone who has it eats gluten, their immune system attacks their own tissues, which damages their gut.
The symptoms vary from person to person and can range from very mild to severe.
But the most common signs include:
- severe or occasional diarrhoea, excessive wind and/or constipation
- persistent or unexplained nausea and vomiting
- recurrent stomach pain, cramping or bloating
- any combination of iron, vitamin B12 or folic acid deficiency
- anaemia
- tiredness
- sudden or unexpected weight loss
- mouth ulcers
- skin rash (dermatitis herpetiformis)
- tooth enamel problems
- liver abnormalities
- unexplained subfertility
- repeated miscarriages
- neurological (nerve) problems such as ataxia (loss of coordination, poor balance) and peripheral neuropathy (numbness and tingling in the hands and feet)
There is no cure. The only way to manage coeliac disease is with a strict gluten free diet.
This means eating no wheat, rye, barley and oats.
Potential long-term complications include osteoporosis, iron deficiency anaemia, vitamin B12 or folate deficiency anaemia, bowel cancer and fertility issues.
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Isabelle – weight loss
Isabelle’s dad endured 18 months of agony while doctors dismissed his little girl’s dramatic weight loss as an upset tummy.
The schoolgirl, now 13, became too ill to compete in her gymnastics competitions and spend time with her classmates, but her coeliac disease went unnoticed.
It took a year and a half for the family to finally be taken seriously, but they eventually got the answers they were looking for.
Her dad Peter, from Conwy, north Wales, said: “Isabelle didn’t seem to be growing as much as some of her friends and was often bloated.
“She was also pale and losing weight.
“We kept seeing our GP, but they kept telling us that it was just an upset tummy.
“We had to really push to eventually get her referred for a blood test at our local hospital.
“Even with a referral, it still took nearly a year and a half to get the full diagnosis.”
Since diagnosis, Isabelle has become a “completely different child”, Peter said.
“We’re so happy to see the change in her and her growth is more on track,” he added.
Isabelle said: “Now that I’m eating the right foods, I have a lot more energy and my tummy doesn’t feel full all the time.
“I can take part in all of my favourite sports again and have also started my new hobbies, skiing, drama and singing.
“I would like more people to know about the symptoms of coeliac disease so more people get tested early, especially children like me who may not know that anything could be wrong.”
Charlene – recurrent miscarriage
Charlene, 30, had 15 miscarriages in just four years – but no one could tell her why.
“It was heartbreaking,” she said. “I went to the GP constantly trying to find out what was wrong.”
Doctors eventually put it down to several deficiencies which were treated, and Charlene and her husband welcomed their daughter Amelia in May 2019.
But while trying for a second baby, they had two early miscarriages so they knew there was something else at play.
After some blood tests, Charlene was told she had coeliac disease and immediately adopted a strict gluten free diet.
Her son Alfie was born in 2021 and the mum-of-two strongly believes her undiagnosed condition contributed to her earlier miscarriages.
She said: “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.”
Coeliac UK estimates 500,000 people are living with undiagnosed coeliac disease in the UK and are at risk of developing long term health complications.
Coeliac Awareness Week, which this year centres around the theme “could it be coeliac disease?” with a , runs for May 15 to 21.