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Don't let them eat cake; This is Coeliac Disease Awareness Week. Diane Parkes highlights the case of a young Birmingham girl afflicted by the complaint.

Byline: Diane Parkes

Few children give much of a thought to what they eat when they are invited to a birthday party. Not many, for instance, would refuse a slice of cake.

But 11-year-old Chloe Howard has to think carefully about any bite she takes.

For Chloe has coeliac disease, which causes the body's immune system to attack its own tissues when the sufferer eats gluten, a protein found in cereals.

And gluten is an ingredient in plenty of foods ranging from bread to biscuits and sausages to sauces. So any bite she takes could cause her problems.

Chloe, a pupil at Priory School, Edgbaston, was diagnosed at the age of five but she may have been born with the condition.

And when she started developing pains in her stomach her parents, Ruth, 42, and Alistair, 40, decided it was more than simply not liking some foods.

Chloe's GP referred her to Birmingham Children's Hospital, where her family first heard of coeliac disease.

"They actually said they didn't think she had it because she was growing all right and children with coeliac disease can have growth problems," says Ruth.

"But they must have had some suspicion as they did a blood test anyway." It was while waiting for the results that her parents did a bit of research into the condition.

"I didn't know what it was when they first mentioned it but I looked it up on the internet," says Ruth.

But they were still not prepared for the hammer blow of the diagnosis.

"After the blood test they did a biopsy of the small intestine and that confirmed it," she says. "It was a shock really.

"They told us she would need to go on a gluten-free diet and gave us some information and then we just had to get on with it.

"It is quite scary when they first tell you because you worry about what you are going to feed your child. Chloe had a very limited diet anyway so to ensure it was gluten-free seemed incredibly difficult." But, armed with the right information, the family has gradually worked its way through the maze.

"Things are much easier now than they were four or five years ago," she says. "There is much better labelling now and a lot of the supermarkets have gluten-free brands. We make our own gluten-free bread with a bread maker and Chloe likes the food from the Lifestyle Specialist Bakery which we can get from the internet." The family, which includes Priory School pupil Calum, eight, have adapted.

"Calum and Chloe tend to eat the same foods for tea. We have gluten-free pasta so they can have lasagne or we make gluten-free burgers and have them on gluten-free rolls," says Ruth.

"But it is harder when we are going away or going out for a meal.

"We tend to do a lot of preparation. We will usually have something with us. So, for example, a group of us went out for a meal the other week and had garlic bread for starters which Chloe couldn't have but I had brought some gluten-free pretzels with me so she had them.

"We just need to remember to plan ahead. When we were on holiday and we wanted fish and chips we had to go to the fish and chip shop first to see whether they could cater for Chloe and we have to double check in pubs." When Chloe is invited to parties, she or Ruth will explain beforehand that she cannot eat gluten products and in some cases the families can cater for her and in others she takes her own sandwiches.

Her mother says Chloe has managed magnificently.

"She is very good," says Ruth. "She knows what she can and can't eat and she sticks to it." Chloe is also happy talking about her condition to others.

"At her junior school, Bournville, they did non-uniform days and I asked if they would do one for the Coeliac Society," recalls Ruth. "The head teacher Pam Dexter said they would if we would do an assembly explaining what it was.

"So we put it all together. Priory have also been very supportive. They said they are happy to provide her with school dinners but for the moment she is happy with sandwiches." The family, who live in Kings Norton, have become very involved in the Birmingham Coeliac Support group led by Liz Ratcliffe.

"We got in touch with the group a few years ago and they were lovely and really supportive," says Ruth. "They have a lot of social events and talks. And we look to organise events for the children." Ruth is also extending her interest in the condition. As clinical director in psychology at Birmingham University she put together a grant to the national charity Coeliac UK to fund research into the psychological effects of the disease.

"There is a group of trainees and research fellows looking into how living with coeliac disease affects people psychologically," she says. "We have had a number of participants come forward and Coeliac UK is going to put a questionnaire on their website." Coeliac UK has joined forces with the National Trust to mark Coeliac Disease Awareness Week, which is this week.

Under the banner of Free for Tea, National Trust tea shops, cafes and restaurants will be providing information on the condition and on gluten-free options on their menus..

WEB: For information and details of all events, visit www.

coeliac.org.uk

CAPTION(S):

Chloe Howard, who suffers from the gluten-related condition, with her mother Ruth and brother Calum
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Publication:The Birmingham Post (England)
Date:May 13, 2009
Words:934
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