WHEN little Kinloch Law became fussy with his food, mum Marie hoped it was just a passing toddler phase.
When he then lunged from one upset tummy to the next, she accepted doctors’ suspicions that it was almost certainly just one bout of something viral after another.
But when the 18-month-old started to lose weight, simply failing to thrive in spite of her best efforts to encourage him to eat, all of Marie’s instincts as a loving mother told her something was definitely not right.
“I was very worried,” she admits. “I carried on until he was nearly two years old, back and forward to the doctor with one thing or another. It was initially put down to a virus or a bug picked up at nursery.
“But there was a period of around eight months when he really didn’t grow much and even lost about 25 per cent of his body weight. The skin was hanging from his bones. It was obvious something was not right.”
Marie wondered if Kinloch’s problems might be something to do with food. But what, exactly, was a mystery.
These days Kinloch is a thriving six-year-old who thoroughly enjoys his food and no longer suffers debilitating bouts of diarrhoea and sickness. He loves to munch on homemade bread and cakes, enjoys pasta and occasional treats with one crucial condition – they must be gluten-free.
For just a speck of gluten – typically found in breads, cereals, pasta and cakes – can tip Kinloch into a severe autoimmune reaction, causing his own body to turn against him.
Finding out that Kinloch has incurable Coeliac disease was, recalls Marie, actually a huge comfort.
“It was a relief to find out that there was something wrong – that I wasn’t some kind of paranoid mother,” she explains.
“I had no experience of Coeliac disease at all, no family history of it, so it wasn’t something I thought of. All I knew about it was that people with it couldn’t eat wheat.
“It turned out that Kinloch’s symptoms were classic for a child with Coeliac disease.”
It’s thought around one in every hundred of us has Coeliac disease, although many are never diagnosed. Often wrongly confused with being a faddy food intolerance, it is actually a potentially serious autoimmune disease which causes the body’s immune system to react violently to the gluten in wheat, barley and rye.
The body then attacks itself, causing damage to the lining of the intestine, preventing the sufferer from properly absorbing vital nutrients. Apart from causing diarrhoea, bloating and cramps, it can also cause weight loss, malnutrition and – particularly problematic in children like Kinloch – a failure to grow.
Undiagnosed, sufferers can go on to develop osteoporosis, have infertility problems and develop some types of cancer.
Kinloch was eventually tested for the condition after his weight loss began to cause major concern and the family GP feared he might well be affected. His blood was checked for antibodies which are produced by the body when gluten is consumed. And an endoscopy was carried out to take a biopsy from the youngster’s small intestines.
Because the condition can be genetic, Marie and husband Simon, 42, a semiconductor engineer, later decided to undergo tests too, along with daughter Anna, ten. While both parents were clear, to Marie’s surprise the checks revealed that Anna was also affected.
“The biopsy showed she was as bad for the condition as Kinloch even though she didn’t have the same kind of physical symptoms,” says Marie.
In fact Anna’s symptoms were a subtle mix of recurring niggling sore tummies which Marie put down to school nerves added to a general tendency to be withdrawn and shy.
“But if someone’s not feeling very well they do become quite quiet,” says Marie. “It’s such an easy condition to overlook. A lot of people can go 15 to 20 years with symptoms but not be diagnosed. They put the way they feel down to eating something ‘dodgy’ and never think of Coeliac disease.”
It all meant the family, who live in Linlithgow, had to dramatically change their diet, scrapping anything with gluten, and religiously analysing the labels of every food.
“Initially it was bamboozling,” says Marie. “We decided it would be easier to all go gluten-free so we wouldn’t end up cooking different meals. So I adapted a lot of our favourite recipes and started to use things like gram flour, buckwheat and polenta. But eating out is difficult – so few places really understand what it means to be coeliac.”
Local support groups run by charity Coeliac UK offered the family support and advice, says Marie, while a directory of gluten-free supermarket food has helped her find her way through the maze of labels.
Now Kinloch and Anna are free of symptoms while, adds Marie, her and Simon simply feel ‘healthier’ for having ditched gluten from their diet. “People eat so much processed food these days, much of it containing wheat,” she adds, “so there’s been an increase in the numbers being diagnosed with Coeliac disease.
“Now it’s become a way of life for us not to eat gluten. And we all feeling better for it.”
Body reacts by attacking itself
Coeliac disease is a serious illness where the body’s immune system reacts to gluten found in food, making the body attack itself.
One in 100 people in the UK has coeliac disease. However, only 10-15 per cent of these have been diagnosed and average length of diagnosis is 13 years.
Gluten is a protein found in wheat (including spelt), rye and barley. Some people are also sensitive to oats. Obvious sources of gluten include breads, pastas, flours, cereals, cakes and biscuits. It is often used as an ingredient in many favourite foods such as fish fingers, sausages, gravy, sauces and soy sauce.
Coeliac UK is working closely with food industry to help the “Free From” market improve – look out for new product launches and ranges, which will increase the choice for sufferers.
Symptoms can include bloating, abdominal pain, nausea, constipation, diarrhoea, wind, tiredness, anaemia, headaches, mouth ulcers, recurrent miscarriages, weight loss, skin problems, depression, joint or bone pain and nerve problems.
For further information, contact Coeliac UK on 0845 305 2060 or visit www.coeliac.org.uk.
Tough going for top chef neil
NEIL Forbes, chef and director of New Town restaurant Cafe St Honoré, is one of Edinburgh’s most dedicated foodies.
So for him the idea of going a week without enjoying a chunk of fresh bread, a plate of delicious pasta or a crumbly home-made biscuit with his coffee – day-to-day existence for thousands of Scots coeliacs – must have sounded like seven days of torture.
But with next week branded “gluten-free” week by charity Coeliac UK, when the organisation wants us all to attempt seven days without allowing a morsel of gluten to pass our lips, he agreed to lead the way and shun his normal favourite foods for gluten-free varieties.
The result, he says, was an eye-opening experience which has now prompted him to rethink elements of his own menu and day-to day-diet.
“The week was challenging, hard at times, very interesting and I’m sure I’ve lost a pound or two,” he says. “It made me realise how hard it can be eating gluten-free.
“I suppose we take it for granted and are quite lucky really that we can eat what we want. Coeliacs can’t. Every label has to be read and understood. Eating out must be a nightmare because I don’t think enough restaurants are taking it seriously and maybe aren’t aware that it’s a medical condition.”
During his gluten-free week, he got into a habit of ditching his usual breakfast for gluten-free cereal and wrestled with a craving for a post-work beer – banned because of the wheat used in its production.
But he found temptation all around – and fell off the wagon when one of his restaurant’s chefs offered him a slice of tart and he munched into it without thinking of the potential consequences if he really had been a coeliac sufferer.
And while his chef skills meant it was easy for him to rustle up a tasty home-cooked meal which he could be sure did not contain wheat – he dined on chilli con carne, frittata, omelette, roast pork and chicken – other meals such as pasta and biscuit treats involved a trip to the supermarket for specially-produced gluten-free varieties.
“I found gluten-free foods a bit more expensive,” he adds. “But I know a lot of work may go into producing these products, so it’s a tough one.
“As a coeliac, you need to plan your meals in advance and maybe take snacks with you on days out.
“Most important for me is taste. It can be trying to cook home-made foods as we’re all working longer hours, but putting in the extra effort is worth it.”
By the end of the week he recalls feeling “spaced out”, possibly a result of removing a key ingredient from the food he typically eats.
But the experience made him rethink the food on offer in restaurants to coeliacs, and, he laughs, crave beer.
“Am I allergic to gluten? No, I don’t think so,” he adds, “but I believe we’re in this situation due to bad flour and improper bread-making over the last 50 years or so. We need to get back to proper bread and ban quickly-produced inferior bread.
“I learned a lot, enjoyed it and health-wise for me, I think I feel better.”
Neil Forbes’ gluten-free seeded loaf
280g Doves Farm gluten-free flour
100g rice flour
100g gram flour
20g sunflower seeds
20g pumpkin seeds
15 sea salt
20g crème fraîche
15g fresh yeast
1tbsp rapeseed oil
500ml warm water to combine
Combine all the ingredients in a mixer except the water. Mix on a low speed and drizzle in the warm water a little at a time.
Once combined, knead the bread on a floured surface and allow to prove slightly in a warm place.
Knock back by kneading again and mould into a loaf shape or place in a loaf tin. Allow to prove again in a warm place for an hour.
Dust with gluten-free flour and bake at 180C for 50 minutes.
Remove from the oven and rest on a wire rack. Serve with butter and jam.