When seven-year-old Lucy Hutchinson made her First Communion last Saturday she was the first child in the church to receive the host – for a reason.
She has coeliac disease, so not only did she need to take a special host, it was also important that the priest’s hands were not contaminated by handling the conventional wafers that her classmates in the St John of God Primary School in Artane, Dublin, were given.
Like the estimated one in every 100 people in Ireland who has coeliac disease, Lucy reacts to eating gluten. This is a protein found in wheat, barley and rye, and some coeliacs are also sensitive to oat protein. If she eats gluten, it damages the lining of her small intestine, affecting the ability to absorb nutrients from food.
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This is why the failure to thrive is one of the main symptoms of coeliac disease in children, along with bowel-related complaints such as diarrhoea, constipation and stomach pains (see panel).
From the age of about eight months, Lucy suffered gastric problems that were put down to tummy bugs, says her mother, Catherine. But Catherine noticed that her sister’s baby, who was born at the same time, was growing faster. When her niece was being dressed in clothes for babies aged 12-18 months, she was still buying Lucy clothes for six- to nine-month olds.
Some months after her first birthday, Lucy seemed to have a particularly bad bug. Catherine recalls dressing her in a lovely white dress that a granny had given her for Easter, “and the poo came pouring out of the nappy on to the bed and floor”.
She brought her to the GP who referred her to Temple Street children’s hospital where, it was suggested, Lucy be put on a lactose-free diet for a week.
Symptoms improved slightly but not significantly. “She was still very pale, tired and complaining of pains in her tummy.”
Eight-month waiting list
She was referred to Our Lady's Children's Hospital, Crumlin where Catherine was dismayed to be told there was an eight-month waiting list to see a gastroenterologist in the public system, so she asked to go privately.
Learning that it would still be two months, she begged for Lucy to be seen sooner, as her daughter was “withering away”. She was subsequently offered an earlier appointment, after a cancellation.
Blood tests indicated Lucy had coeliac disease, and this was confirmed after a biopsy on the small intestine, performed under general anaesthetic.
“You are a bit dazed when you get news like that,” says Catherine, who went home and threw out the entire contents of her food cupboards. “Then I went down to Dunnes and Tesco and bought every gluten-free product I could find.”
Both the consultant and the dietitian at the hospital had said she would have a different child “and I didn’t believe them”. But, within a week of starting the diet, Lucy had “buckets of energy”, because her body was starting to absorb the nutrients from food, and she was no longer content to go to bed at 7.30pm.
“I thought I had a good child who slept. She wasn’t, she was sick.” After the new eating regimen started, “she was literally bouncing around my bed at 11 o’clock at night. I had to train Lucy again to go to sleep because she had so much energy.”
Within three months of being gluten-free, she doubled her body weight. “She was a different child completely.”
Sibling tests
Catherine, whose own blood test for coeliac disease came back negative, was told that with one child affected, there was a one in 10 chance that any siblings would also develop it.
However, rather than having three-year-old Penny and 18-month-old Eric tested – “I didn’t want to put another child through a blood test and a biopsy” – she decided to keep the whole household gluten free.
When they get older, they can get the test, she says. “At the moment, being gluten free, I can guarantee that there will be no stunted growth, no damage to their insides.”
Catherine acknowledges that some people would not agree with her approach, and it is not what the Coeliac Society of Ireland advises, but it's "down to personal choice", she says.
Triggers
The cause of the lifelong condition is unknown. While a genetic predisposition has been established,the triggers are not yet understood. Gluten-free food is the only treatment available but, as long as this is adhered to, coeliacs have normal life expectancy.
Gluten-free products have become much more widely available in recent years, partly due to awareness-raising by the Coeliac Society of Ireland, but also in response to what dietitians describe as a fad for cutting out wheat.
"There is a growing body of evidence around non-coeliac gluten sensitivity," says the president of the Irish Nutrition and Dietetic Institute, Richelle Flanagan.
“But while symptoms may be similar, blood tests will show it’s not coeliac disease and there are not the associated health risks of a higher incidence of bowel cancer and osteoporosis if gluten is consumed.”
Diagnosed as a coeliac herself four years ago, at the age of 38, Flanagan says even as a health professional, she felt eating gluten-free food was a challenge.
She was dismayed that she was going to have to watch everything she ate and at the inevitability of conversation turning to her diet whenever she is eating out.
While it is popular to jump on the "wheat is bad for you" bandwagon, people are cutting it out without getting a proper diagnosis, she points out. It may be an allergy, an intolerance, or simply a figment of their imagination.
Danger of elimination
Even if it makes people feel better, Flanagan warns of the danger of eliminating a whole food group, particularly because wheat-containing foods, such as bread and cereals, are often fortified with minerals and vitamins, while their gluten-free counterparts are not.
“That is why it is important that diagnosed coeliacs have regular reviews with dietitians, to ensure they have a sufficiently nutritious diet,” she adds.
Dietitian Ruth Charles of NutriKids also believes there is a lot of confusion about coeliac disease and wheat intolerance, and that the number of adults who think they are allergic to wheat and gluten is far higher than the number who have the condition.
Any GP or dietitian, she says, would have coeliac disease at the back of their minds when seeing children with persistent tummy pains, vomiting or diarrhoea, but that the normal contributing factors to these common symptoms have to be ruled out first.
Lucy, who has yearly check-ups at Our Lady’s Children’s Hospital, Crumlin, is very confident and well educated about her diet and has no issues with it, says Catherine.
If she does accidently eat gluten, little blisters in her mouth are quick to appear, along with diarrhoea.
Although public awareness has improved, eating out can still be problematic and the Hutchinson family stick to a few places they can trust.
Cross-contamination is the main problem, she explains. Clued-in restaurants not only have gluten-free options on the menu but also use designated equipment in their preparation and cook them separately.
Lucy’s First Communion celebration was in one of the family’s regular haunts – the Carlton hotel on the Old Airport Road in Cloghran – and Catherine arranged a gluten-free cake from Scrummy Mummy Cakes.
With every angle covered, they could relax for Lucy’s special day.
PANEL:
'I will be more worried when he becomes a teenager'
It’s hard at the age of six not to feel the odd one out if all your siblings and friends are allowed to eat things that you’re not.
That’s why Louise Harton-Maguire tries to match food for her son Callum, who has coeliac disease, with that of his siblings , Ben (nine), Emily (four) and two-year-old Niamh.
There is a separate cupboard in the kitchen for his gluten-free food, low down so he can reach, while the rest is stored up higher at the family’s home in Navan, Co Meath.
“If I am getting jammy dodgers for the kids, I will try to get gluten-free jammy dodgers for him; if I have crackers in the cupboards for the kids, I have to have crackers in the cupboard for him,” says Louise. “That is probably the most difficult thing – trying to find gluten-free equivalents.”
For parties, she feels a bit embarrassed about asking parents what they will be serving but it means she can try to get an equivalent for Callum “so he looks like he is getting the same”. If it is on at a play centre, she goes in with chicken nuggets in a tray that can be cooked separately, along with microwave chips.
Is there a tablet?
But Callum sometimes ask if there isn't some sort of tablet he could take to make him better – and so be like everybody else.
“I will be more worried when he becomes a teenager – that’s when I think it will hit more. I am kind of in control now,” she says.
However, it’s not like a peanut allergy, where one bite can kill, she points out, so she doesn’t panic if he accidentally eats gluten.
She had been concerned about Callum’s weight from about six months, when she started minding two other babies the same age.
“The other two were much bigger than him and, as time went on, the gap between them became much more noticeable.” She also wondered how on earth she would ever toilet train him as he never had a solid nappy.
She and the public health nurse began to track his weight much more closely from a year onwards and then he was referred to a paediatrician in Drogheda.
Initially, nothing showed up in blood tests and, in all, it took a year and a half to get a diagnosis, when an endoscopy performed at Crumlin hospital confirmed it.
Negative results
The rest of the family have had blood tests but all came back negative, although Louise, who has several symptoms of coeliac disease, suspects she is, at least, gluten-intolerant, and is considering getting an endoscopy done.
As in all families with a coeliac, the cost of gluten-free products food is an issue. She and her husband, Jason, can claim tax relief on them and when she filled in the Med 1 form recently she had €900 worth of food for Callum – and that was only the stuff for which she remembered to keep receipts.
“You can’t get it on everything – it’s ‘basic foods’,” she explains. “Digestive biscuits count as basic foods, jammy dodgers don’t; cornflakes do but other cereals don’t and some breads do, other breads don’t. I don’t know where they draw the line.”
This tax relief is the only State financial support for coeliacs now, since gluten-free products are no longer available on the medical card or under the Drug Payment Scheme.
And the diet supplement payment for people on social welfare has also been stopped for new claimants since February.
Coeliac disease: The statistics and the symptoms
For every person diagnosed with coeliac disease, there are likely to be another five to 10 people who remain undiagnosed, according to the Irish Coeliac Society.
Designating this week, May 12th-19th, as Coeliac Awareness Week, the society reports an apparent increase in the number of children under the age of five being diagnosed with the disease.
In 2009, about 8 per cent of the society’s members were under five but this has risen to 14 per cent.
The higher incidence could be partly due to more awareness but there is an acceptance that there has been a "true increase" in the past decade, says consultant gastroenterologist Prof Billy Bourke.
But why is a mystery, as the cause of the condition is unknown.
Symptoms of coeliac disease include:
Failure to thrive in children
Diarrhoea
Constipation
Chronic tiredness
Anaemia
Irritability
Persistent mouth ulcers
Stomach pain and bloating
Defective tooth enamel
Bone pain
Chef Clodagh McKenna is hosting a gluten-free cooking demonstration and three-course dinner in Arnotts, Dublin, onThursday, May 15th.
For more information, see coeliac.ie and clodaghmckenna.com
