Many parents find mealtimes with children a bit of a headache. But Julia Davage knew her daughter Cerys was more than just a fussy eater.
She had never been enthusiastic about food, shaking her head as a toddler when she was being spoon fed, and failed to put on any weight during her formative years.
She dreaded something serious was very wrong, especially when her stomach looked bulgy and certain foods would make her sick or upset her stomach.
So when she was finally diagnosed with coeliac disease three years ago, a condition which means she is intolerant to gluten, Julia says it was a actually a welcome relief.
“When I started weaning Cerys I noticed she didn’t like being spoon fed at all. She would shake her head and keep her mouth closed and we just assumed that she was a bit of a fussy eater.
“But by the time she was three years old it was almost impossible to get her to eat at all. By this time she was also starting to lose weight and I was obviously starting to get really worried.
“My husband Marcus and I talked to the health visitor about it and she was referred to a psychologist to try to encourage her to eat something. He gave her some strategies and she did start to eat a bit more but between the ages of four and seven she hardly put on any weight at all and her sister Cadi, who is two years younger, was quickly catching her up.
“She would get sick if she ate certain foods, while others would block her up or cause constipation. Size wise, Cadi was much chunkier and it was obvious that something wasn’t right. As a parent, you naturally worry so we had her checked for all sorts of bowel disease and it was only then that I told specialists that we had a history of coeliac disease in my husband’s family.
“That’s when they tested her and we were told she had coeliac disease.”
Coeliac disease, which also affects Cerys’ younger sister Cadi, is an auto-immune disease which means that Cerys, ad other suffered, cannot have any gluten in their diet.
It affects at least one in 100 people in the UK and in Europe.
However, only about 10 to 15% of people with the condition are clinically diagnosed.
Julia, a schoolteacher from Whitchurch, Cardiff, says: “The diagnosis almost came as a sort of relief as at least once we had the diagnosis, we could do something about it.
“The treatment for a sufferer is simple – you have to eat a gluten-free diet.
“Obvious sources of gluten include breads, pasta, flours, cereals, cakes and biscuits and it can also be found in fish fingers, sausages, gravies, sauces, stock cubes and soy sauce so it means we’ve really had to change the foods that are in the house and what we eat.
“Cadi, who’s nine now, was tested a couple of years ago and she’s also a coeliac but our youngest Beca isn’t, although she does have an allergy to eggs and dairy products – but that’s a different story.
“It’s basically really important that the girls have no gluten in their diet so we prepare everything ourselves with gluten-free versions that you can buy or that come on prescription.
“If one of the girls were to eat gluten now they’d be likely to feel very unwell within a few hours and symptoms could include severe diarrhoea and vomiting that can last for several days.
“There are many people out there who don’t know they have coeliac disease. The symptoms are so varied and random that they could have no idea that they are making themselves ill by continuing to eat gluten so it’s really important that people know the signs.
“As long as you know what is allowed and not allowed in your foods then it’s fine. There are some really nice foods available on prescription, from crackers to bread and pizza bases, and when the girls go to a party, they take their own food.
“Eating out can be a bit of a problem but you tend to find the ones you know do gluten-free food and stick to them. Our local chip shop Top Gun in Whitchurch, is doing gluten-free fish and chips on a Sunday and if you log on to Coeliac UK’s website, there are lots of suggestions for places to go on there.
“The girls have been great. It’s no big deal to them and they know not to cheat on the diet because they know it would just make them ill.”
Cerys has started doing cookery at her school, Ysgol Gyfun Glantaf, but obviously only uses gluten-free ingredients and has to ensure that all the work surfaces are wiped properly to avoid cross-contamination.
“I’ve just emphasised to her that she needs to take her own flour, not use other people’s spoons, that sort of thing because eating even a tiny bit could make her sick.
“Eating gluten if you are intolerant to it causes serious gut damage that can takes months, even years, to repair so it’s a serious issue. I think some people think it’s an allergy, but it’s much more than that.”
For people suffering from coeliac disease, eating gluten damages the lining of the gut, which prevents normal digestion and absorption of food. There are serious health problems associated with it as well, including osteoporosis, infertility, cancer of the small bowel and increased risk of other auto-immune diseases.
But Julia says her girls take it all in their stride and enjoy food, which they often make together as a family.
“It takes about 13 years to diagnose coeliac disease so I’m actually relieved that we found out when we did because then we were in a position to get advise from the doctor and dietician and there is a lot of help and support.
“The gluten-free food is more expensive – it costs £2.50 for a loaf of bread – but it’s worth it to know that they are not going to be sick.”
* National Gut Week starts on May 13.
Coeliac disease: Your questions answered
What is coeliac disease? It’s a lifelong auto-immune disease, triggered by eating gluten, a type of protein found in wheat, rye and barley.
Some people are also sensitive to oats. Eating gluten damages the lining of the gut, which prevents the normal digestion and absorption of food.
Is it genetic? It does run in families, but not in a predictable way. Studies show that if a family member has the condition, there is a one in 10 chance of a close relative developing the disease.
Anyone who has a relative with coeliac disease should be aware of the symptoms and should discuss with their GP about getting tested if they think they may have it.
What are the symptoms? They range from mild to severe and can vary between individuals.
They can include bloating, diarrhoea, nausea, wind, constipation, tiredness, anaemia, mouth ulcers, headaches, sudden/unexpected weight loss, hair loss, skin rash, short stature, osteoporosis, depression, infertility, recurrent miscarriage and joint or bone pain.
What should you do if you suspect you have it? The first step is to visit the GP who will take a simple blood test to check for antibodies, which are produced by the body in response to eating gluten.
It is essential to eat gluten before such a test. If the test is positive, the GP will refer you to a hospital specialist for a gut biopsy.
Helpline: 0856 305 2060