Little girl who can't eat wheat
PUBLISHED: 14:20 13 March 2008 | UPDATED: 15:42 11 May 2010
WHILE most of us can go out for a meal and not worry about what we eat, one family have a more difficult experience. Four-year-old Leila Joy has coeliac disease which means she has an intolerance to gluten, a protein found in wheat, rye, and barley. Leila
WHILE most of us can go out for a meal and not worry about what we eat, one family have a more difficult experience.
Four-year-old Leila Joy has coeliac disease which means she has an intolerance to gluten, a protein found in wheat, rye, and barley.
Leila's mum Karen said: "Leila was diagnosed at eight or nine months old.
"In a way we were relieved to find out what it was that she had because she had been so ill.
"We were at the doctor's every weekend and they kept saying it was colic, but I knew it was something more than that.
"In the end we went to the hospital and told them to sort it out.
"When they said it was coeliac disease I thought 'how am I going to cope?'."
Leila, who is a pupil at Roman Way School, suffered from sickness, diarrhoea, and stomach cramps before she was diagnosed.
"I have to prepare food for Leila on a different surface to the rest of the family and she has to have different breads and other foods," says Karen.
"I have to make all her birthday cakes because they just don't make them without gluten in them."
Mum Karen, dad Garry, Leila, and her 11-year-old brother Brandon, who live in Wordsworth Close, Royston, often have gluten free food, which makes preparing meals easier.
"The school are really good about it, but the catering company which provides the school meals can't cater for coeliacs," said Karen.
"Leila's friends are aware and are really concerned. If she's away from school they'll say they hope her tummy is OK.
"Leila is very aware of the condition - she goes to friends' houses and knows what she can and can't eat.
"When she goes to parties she takes her own lunch box, which seems a bit unfair, but she understands why."
Gluten holds food together and is mainly found in processed food.
Coeliac disease is often misdiagnosed as IBS and can lead to osteoporosis, infertility, and some stomach cancers - its only relief is a gluten free diet.
When asked if she will ever be able to have gluten, Leila says no because it will upset her tummy.
"Coeliac disease usually runs in families, but we've all been tested and don't have it, although it can develop into the 40s," says Karen.
"I've got a book with a list of everything Leila can eat, but I have to go online regularly, as it's updated.
"Before Christmas Leila could eat a Milky Bar, but now she can't, because they decided to add gluten to it."
All pre-packaged food bought in the UK is covered by the EU-wide food labelling legislation, meaning that any gluten cereal used as a deliberate ingredient in a product must appear on the ingredients list.
Although this makes shopping easier for the Joy family, eating out is a different matter.
"We can't go anywhere for a meal because nowhere can cater for Leila," said Karen.
"They can offer her chicken and some salad, and I have to take gravy with me.
"We would like to know if there is anywhere in Royston that can cater for her, because she is not the only one with the condition."
Although it is not like a nut allergy, which can be fatal, coeliac disease can make sufferers very ill.
"We had never heard of coeliac disease before Leila got it, so we want to make other people more aware," said Karen.
"Her friends know and they tell other friends and family.
"That's a good start, but we want more people to understand how difficult it is, and to be able to cater for people like Leila."
Coeliac UK will be holding an awareness week called Food Without Fear from May 12-18.
The aim is to raise awareness and understanding with chefs and caterers in hospitals, schools, restaurants, hotels, and airlines.
For more information on coeliac disease visit www.coeliac.co.uk
* Coeliac disease is not an allergy. It's an auto-immune disease, which means that the body produces antibodies that attack its own tissues.
For people with coeliac disease this attack is triggered by gluten, a protein found in wheat, rye, and barley. Some people with coeliac disease also react to oats.
* Symptoms of coeliac disease may range from mild to severe, and can include:
* Bloating, diarrhoea, nausea, wind, tiredness, constipation, anaemia, mouth ulcers, headaches, weight loss, hair loss, skin problems, short stature, depression, infertility, recurrent miscarriages and joint/bone pain.