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Wednesday, 01 October 2014

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Coeliac disease: 'I have to bring my own food to parties'

‘Croissants,” 11-year-old Sophie Brimble says immediately when she’s asked if there are any foods she misses.

Sophie Brimble photo
Sophie Brimble

“When we have guests staying with us everyone has croissants for breakfast but I have to have a bread roll.”

Sophie, from Tebay, has coeliac disease so when she talks about a bread roll she means the gluten-free version.

Coeliac disease is caused by intolerance to gluten, which is found in cakes, bread and pasta as well as less obvious products such as gravy and sauces.

It’s an autoimmune disease – something which arises from an inappropriate immune response of the body against a substance – rather than an allergy or simple food intolerance and is triggered by eating gluten from the cereals wheat, rye and barley.

There is no cure or medication which can help and the only treatment is to follow a strict gluten-free diet.

People with the disease can eat most dairy products, fruit, vegetables, meat and fish.

Sophie was diagnosed when she was seven and now has a strict gluten free diet and while there are many gluten-free versions of foods she used to eat, they’re not always readily available or even taste the same.

“To start with it was tricky because I was finding all these things I couldn’t have,” she says. “Now I have learnt to live with it.

“Now I know what foods are good and what aren’t.

“I still miss some things though. I’ve had to get used to the food. Vegetarians have chosen not to eat meat but this isn’t something I’ve chosen to have.

“It can be frustrating. I can’t just go and buy a bar of chocolate, I have to check if it’s gluten free first. It isn’t easy.”

Eating out is one area that can be difficult and while more cafes and restaurants now offer a gluten-free option, the choice can be limited. Going to parties can also be difficult for Sophie.

“If we go out and stop at a cafe I can’t have any cakes,” she says. “Mum brings things for me but it isn’t the same.

“I have to bring my own food to parties and at school everyone looks at me if the teacher explains why I can’t have the same food as everyone else.”

There are now two other children at her school who have been diagnosed with coeliac disease so Sophie doesn’t feel so much the odd-one-out.

Coeliac disease can develop and be diagnosed at any age but is most frequently diagnosed in people aged 40 to 60 years old.

Underdiagnosis is a problem as symptoms may be mistaken for irritable bowel syndrome (IBS) or wheat intolerance.

Symptoms vary from person to person and range from mild to severe and include bloating, stomach pains, nausea, diarrhoea, tiredness, headaches and weight loss.

Mum Jenny says Sophie didn’t really have any of the classic symptoms of coeliac disease.

She had anaemia and was suffering from fatigue so she took her to see her GP. A blood test revealed she had a gluten intolerance, a condition that is more common in adults.

“She could have gone on for years without realising,” says Jenny. “It is controllable but at the start it was difficult to make sure we read all the packets on food.

“We are now confident that she has a gluten-free diet although it can be difficult to be sure.

“Shopping was an experience at first.

“Even in four years it has become easier to get things but it’s still expensive.

“A gluten-free loaf of bread can cost £2.50.

“As time has gone by I’ve realised it isn’t practical to cook separate things so we all tend to eat the gluten-free version of something like a sauce.”

Jenny says the gluten-free bread and crackers are dry and she bakes cakes using gluten-free flour so Sophie can still enjoy eating cakes.

At the start Sophie had to have blood tests every three to six months but now she has one once a year.

“It was harder for her when she was younger but she understands it more now,” Jenny admits. “It’s hard for her if she is going to a friend’s party or eating out.

“It’s something that marks her out as being different. At her age you want to be the same as everyone else.

“When we go out I always have something gluten-free in my bag for her just in case.”

There is no family history of coeliac disease in the family and although the disease can be genetic Sophie’s nine-year-old sister Hannah doesn’t have any of the symptoms.

To mark Coeliac Awareness Week Sophie has taken on the Gluten Free Challenge and is challenging Keswick-based chef Peter Sidwell, who presented Channel 4 cookery series Lakes on a Plate, to eat as she does for the awareness week to highlight the difficulties of the condition.

He will have to give up wheat, barley and rye and then report back to Sophie about how he has got on.

She has also challenged her family to be gluten-free during the awareness week.

Jean Foster, from Maryport, runs the Coeliac UK north, east and west Cumbria group and is also a coeliac lifestyle adviser.

She was diagnosed with the disease 14 years ago after suffering from anaemia and weight loss.

“I thought I was just run down,” she recalls. “Within weeks of being diagnosed I had so much more energy.

“If I had not been diagnosed when I was I don’t think I would be here now.

“It was a relief.”

People with coeliac disease can get staple gluten-free foods such as pasta, bread, rolls, crackers and flour on prescription through a monthly allowance.

Primary Care Trusts in Cumbria run a pharmacy-led prescribing scheme for people with coeliac disease which allows them to get gluten-free products directly from their local pharmacist instead of having to go through their GP.

It has been running in Cumbria since 2009 and aims to make life easier for sufferers.

A new law for the labelling of gluten-free foods came into force in January which applies to food packaging and eating out establishments offering gluten-free options.

Jean, 63, believes there has been an increase in awareness about the disease over the years since she was diagnosed but eating out can still be difficult and she believes there’s still a gap between someone being diagnosed by their GP and seeing a specialist, where people don’t know where to turn for advice.

“It can be difficult to find out what you can and can’t eat at first,” she says. “I once went out to see a young mum who had been diagnosed but was panicking because she didn’t know what she could eat. Local supermarkets are getting better but eating out is still difficult.

“I have to ring a restaurant up in advance and tell them.

“You become the dinner guest from hell.

“Cross contamination can be a problem. It only takes a crumb.

“It can give you an upset stomach and it knocks back the healing process.

“If you go out to eat you can eat ice-cream but if the waiter brings it with a wafer in then it is contaminated, even if they take it back and just take the wafer out.

“There’s still a long way to go.”

The Cumbrian Coeliac UK group has 840 people registered as members and holds regular meetings and events.

There is a food and drink directory on the website listing places that offer gluten-free food.

Events taking place during Coeliac Awareness Week include a gluten-free lunch at Lakes College, Workington on Thursday, a gluten-free information table at Sainsbury’s in Penrith on Wednesday and cookery demonstrations by gluten-free producer Juvela and roadshow at Rheged near Penrith on Sunday from 10.30am to 2.30pm.

Visit www.coeliac.org.uk for more information.

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