How would you feel if common foods such as bread, cakes and pasta were off the menu or a tiny biscuit crumb could make you ill? For the one in 100 people who have coeliac disease this is an everyday, lifelong reality. Hilarie Stelfox meets a six-year-old sufferer from Linthwaite

LYLA MARTYN can’t remember a time when she didn’t eat ‘special’ food.

Diagnosed aged three with coeliac disease – an auto-immune problem caused by an intolerance to gluten – she has to avoid many common everyday staples, including those that most children like best.

Pizza, crisps, chocolate bars – they’re all off the menu for the six-year-old.

Instead, she has to have special gluten-free foods. If she’s invited to a birthday party she has to take a packed meal and knows she can’t share what everyone else is having.

At school – she attends Linthwaite Junior, Infant and Early Years School – catering staff prepare gluten-free options for Lyla and two other young coeliac sufferers.

When her family have a holiday or a day out they have to seek out gluten-free foods in restaurants and cafes or take food with them.

Fortunately for Lyla both her parents – Julie Sutcliffe and Nick Martyn – are familiar with the problems faced by people with coeliac disease as each of them has a parent who has had the disease.

Nick’s mum, Pauline Martyn, was diagnosed in her 40s with the condition after suffering from a lifetime of stomach complaints.

Now in her 60s, she is secretary of Calderdale and Huddersfield Coeliac Group which is affiliated to the national organisation Coeliac UK.

Julie’s father, David Boothroyd (who died last year), had a rare form of gluten intolerance that caused a skin problem.

Because there was a family history of coeliac disease, both Julie and Nick were careful when weaning their own two children. Lyla has a seven-year-old brother Cole, who hasn’t inherited the problem.

“We didn’t introduce gluten into their diets until they were more than nine months old,” said Julie, who is a science teacher. “But Lyla was a very colicky baby.”

By the time she was a toddler Lyla was displaying signs of gluten intolerance.

“She always had a swollen stomach so we took her to the doctor and, given our family history, they did blood tests which came back positive,” said Julie.

Because long-term exposure to gluten can cause permanent damage to a coeliac sufferer’s digestive system it’s vital to introduce a gluten-free diet as soon as possible.

“We are really careful,” said Julie. “Some coeliacs are so sensitive that even a tiny crumb can make them really ill. Lyla even has her own butter container in the fridge so that it doesn’t become contaminated with crumbs from ordinary bread.”

Lyla has to have regular blood tests to ensure that she’s free of gluten.

They have shown that while her special diet is working, her vitamin D levels are low so she needs supplements.

Coeliac sufferers can get gluten-free bread and pasta on prescription but other foods come at a premium price.

“Primary care trusts have recently been quite strict about what you can have and how much,” said Julie.

“Fresh bread has to be ordered through the pharmacist by the box of eight loaves. We put them in the freezer. If you bought them at the supermarket they’d be about £3 a loaf.”

Julie and Nick have to read the labels on all processed foods when shopping for the family. “Gluten pops up all over the place,” said Julie. “In crisps, for example. Walkers have withdrawn their gluten-free statement but Seabrook have just introduced one.

“Smarties and chocolate bars are no good because they can be contaminated in the factory. Soy sauce has gluten in it so Lyla can never have Chinese food. The list is endless.”

Digital technology has been an enormous help.

Julie said: “I have an app on my phone called FoodWiz that scans barcodes in the supermarket and will tell you which branded foods have gluten in them..”

Although family life is geared up to Lyla’s coeliac condition, Julie and Nick say that going out for the day or on holiday can present them with major difficulties.

“We have a card written in different languages that explains what we need,” said Julie. “But we had a day out in London and everywhere we went there were sandwiches and foods Lyla couldn’t have.

“She ended up eating a Marks & Spencer salad. She eats a lot of baked potatoes and chips when we’re out.”

Julie and Nick are surprised, given how common gluten intolerance is, that more people haven’t heard about coeliac disease or understand what it means.

However, they are full of praise for the way Lyla and Cole’s school supports coeliac children.

“In the past children would just have had to take their own food, but the school makes sure there’s always something for Lyla,” said Julie.

For further information on coeliac disease or how to contact the local support group contact www.coeliac.org.uk or call 0845 305 2060.

About coeliac disease

Gluten, which is found in wheat, barley and rye triggers an immune reaction in people with coeliac disease. This means that eating gluten damages the lining of the small intestine. Other parts of the body may also be affected. Left untreated it can cause infertility, osteoporosis and small bowel cancer.

Symptoms are wide-ranging and include diarrhoea, excessive wind, and/or constipation;

persistent or unexplained gastrointestinal symptoms such as nausea and vomiting;

recurrent stomach pain, cramping or bloating; any combination of iron, vitamin B12 or folic acid deficiency; tiredness and/or headaches; weight loss (but not in all cases)

The average length of time it takes to get a diagnosis is 13 years and currently it is thought that only 10% to 15% of people with coeliac disease have been diagnosed – with as many as half a million still undiagnosed.

Gluten can be a hidden ingredient in many foods – from mayonnaise and sausages to sauces and beer.

Next month Coeliac UK is challenging the nation to live without gluten for a week and raise funds through sponsorship for the charity which advises and supports sufferers and their families.

Anyone who is newly diagnosed will be put in touch with Coeliac UK and its network of support groups around the country.