Coeliac disease often goes undiagnosed for many years as symptoms are often mistaken for other conditions such as irritable bowel syndrome.
AASMA DAY talks to one Lancashire mum whose son has luckily had the condition picked up at a young age
When their firstborn baby son Jensen did not seem that interested in food and struggled to put weight on, Rebecca Cann and Warren Livesey were assured it was nothing to worry about.
And when Jensen suffered from constant diarrhoea, the couple put it down to the fact that he was teething.
Rebecca, 33, who lives in Chorley, explains: “When Jensen was a baby, he suffered quite badly with reflux and he did not really eat much and did not seem fussed about food at all.
“He struggled to put on weight but we did not think anything of it as his dad is slim and the health visitor was not concerned.
“He did suffer quite badly with diarrhoea and had a pot belly, but we just put this down to the fact that he was teething.
“Because he was our first child, we did not know any different and did not really know what was normal and what wasn’t.”
It was only in February last year when Jensen, now four, was hit by a serious case of tonsillitis and had to be hospitalised that blood tests revealed he had coeliac disease, a serious autoimmune disease when the body’s immune system reacts to gluten making the body attack itself.
Rebecca recalls: “It was a huge shock when we received this diagnosis.
“I had never heard of coeliac disease and when you hear the word ‘disease’, you automatically fear the worst.”
Jensen underwent a biopsy at Liverpool’s Alder Hey Hospital which confirmed the diagnosis.
He has been following a gluten free diet ever since.
Rebecca, who works at Natwest Bank in Leyland, admits it wasn’t easy, particularly in the early days.
She says: “I had to do a lot of research into coeliac disease and I joined Coeliac UK which has been a massive source of help and support.
“To begin with, it was a minefield on what Jensen could and couldn’t eat.
“It took us about six months to adjust to it and become more aware of what Jensen could and couldn’t have.
“There is also a risk of cross contamination and I have had to buy separate utensils, baking trays and even a separate toaster for Jensen.
“All his food has to be cooked separately to our own.
“It has been a massive learning curve for all the family.
“But Jensen has taken to it really well and it is wonderful as he can now eat and not suffer diarrhoea all the time.
“He is no longer tired all the time and he is putting weight on.”
Rebecca says they feel very lucky that Jensen was diagnosed when he was as many people with coeliac disease go undiagnosed for a long time.
The family eat a lot of gluten free food and although eating out can be a struggle, Rebecca researches where to go and calls restaurants ahead to make sure the gluten free food is not cooked in the same oil as gluten food.
Rebecca says: “The hardest thing for me is when Jensen goes to birthday parties and can’t have the birthday cake.
“The parents of other children have been brilliant and always make sure there is a gluten free alternative for Jensen.
“But he can’t have the cake.”
Jensen’s younger brother Jake has been tested for coeliac disease but the results have come back negative.
Rebecca says: “Jake has been the complete opposite of Jensen and he eats anything and everything and puts weight on and is thriving.
“He has tested negative for coeliac disease but because we eat a lot of gluten free food, we are not sure it is accurate.
“Jake is not showing any signs of coeliac disease, but if he does, we will have him re-tested.”
Jensen goes to Buckshaw Village Nursery and Rebecca says the staff there have been fantastic at adapting their menu to cater for Jensen.
Jensen will be starting Claughton Brook Primary School in September and his parents have already had a number of meetings with the school who are going to put things in place and adapt the menu for him.
Rebecca says: “Even though he is only four, Jensen is very good and he will never eat anything without asking first.
“When we are out shopping, he knows where the gluten free aisle is.
“He is very on the ball and as he gets older, his understanding will increase.”
Coeliac UK, the national charity for people with coeliac disease has launched the UK’s first online assessment to help fast track diagnosis among the half a million people in the UK living with undiagnosed coeliac disease.
The online assessment tool is based on National Institute for Health and Care Excellence (NICE) guidelines and will give people more confidence to seek further medical advice from their GP.
Upon completion of the assessment, they will receive an e-mail with the results which will indicate whether their symptoms are potentially linked to coeliac disease.
Coeliac disease is a serious autoimmune disease where the body’s immune system damages the lining of the small bowel when gluten, a protein found in wheat, barley and rye, is eaten.
There is no cure and no medication. The only treatment is a strict gluten-free diet for life.
Left untreated, coeliac disease can lead to a complications including osteoporosis and in rare cases even small bowel cancer.
Key symptoms caused by coeliac disease include: frequent bouts of diarrhoea, stomach pain and cramping, regular mouth ulcers, ongoing fatigue, lots of gas and bloating, nausea and vomiting and unexplained anaemia.
One in 100 people in the UK has coeliac disease, with the prevalence rising to one in 10 for close family members. Only 24 per cent of those with the condition are diagnosed.
half a million people in the UK undiagnosed.
Sarah Sleet, chief executive of Coeliac UK, says: “With half a million people living with undiagnosed coeliac disease we must take radical action to turn around this horrendous situation.
“We hope that giving people direct access to an online assessment tool will put those who are suffering with the symptoms of undiagnosed coeliac disease on a pathway to diagnosis and avoid potentially life threatening long term health complications as well as help reduce the unacceptable length of time to gain a diagnosis which is currently, on average, 13 years.
“Please check your symptoms through our online assessment tool and if you think you may have coeliac disease, go to your doctor and ask for a blood test.
“But don’t stop eating gluten until you are tested otherwise critical follow up tests will not work.”
• If you suspect you might have coeliac disease, take the assessment questionnaire at: www.isitcoeliacdisease.org.uk