Thursday, August 1, 2013

Living life as a coeliac

When many of today’s coeliacs were diagnosed there was very little gluten-free food. Today there are far more options and coping mechanisms, says Áilín Quinlan

By Áilín Quinlan

AS a child, Bernie Reddington was often ill — and nobody knew why. “There was always something wrong with me,” she says. “Every now and then, I’d be taken to the doctor and given tonics, but they were no use.”

She suffered from severe diarrhoea and constipation and failed to thrive like her six healthy siblings.

On the advice of a neighbour, who was a nurse, Bernie, aged six, was brought to hospital — and there she stayed, for six lonely months of tests until the doctors had a diagnosis.

Bernie had coeliac disease. Her mother was given a diet sheet — there were no gluten-free products then — and Bernie was discharged from hospital.

The struggle to keep her healthy began.

“I was told not to eat bread or biscuits. My mother tried to make gluten-free bread, but it never worked out properly for her. It wouldn’t cook in the centre. I’d eat what I could of it,” Bernie says.

Birthday cakes were banned. “Once I was diagnosed as coeliac, I couldn’t eat a lot of what I considered to be nice things — birthday cake, Christmas cake, apple tarts, scones and my mother’s home-made bread.”

Bernie still secretly ate them, causing irreparable damage to her system. “I went behind my mother’s back and ate stuff — and then I’d get sick. She couldn’t get gluten-free products then and her best efforts to bake gluten-free things for me failed. It was a nightmare for her and a nightmare for me.”

“Nowadays, if you’re diagnosed and stay on a gluten-free diet, your system will recover, but I did so much damage with all of my sneaky eating that my system never recovered and I have to stay on a coeliac diet for life. ”

It was the 1980s before Bernie sourced gluten-free bread in a Dublin supermarket. “It wasn’t even particularly nice — in fact, it was kind of half-baked the way my mother’s used to be — but I got used to it.”

Now, in her 50s, she finds today’s range of gluten-free products dizzying. “You have bread, pizzas, sausages, cakes biscuits, pasta, crackers, muesli and cereals — the sky’s the limit. It’s believed that one in 100 Irish people are coeliac, a condition that causes the individual to adversely react to gluten, a protein present in wheat, barley and rye. Symptoms include lethargy, stomach pain, bloating and weight loss.

Grainne Denning, chief executive of the Coeliac Society of Ireland, says this is only an estimate based on international figures. “It’s important to say that many coeliacs are undiagnosed. There’s no national policy in relation to coeliac disease, in terms of any kind of national screening, and there’s no register, nationally, of people with the disease.”

Coeliac disease, if undiagnosed, can cause serious health complications, such as osteoporosis and bowel cancer. Access to the right food options is essential to good health and retailers are increasingly aware of the demand for specialty foods — Super Valu recently launched its FreeFrom range in 196 stores nationwide.

Bernie, from Ashbourne, Co Meath, says Ireland still has some way to go in terms of labelling food properly.

“Food on the Continent seems to be better labelled than here — it has come a long way here, but we have a good bit to go yet.”

Denning says: “Food labels here can be quite confusing, because they don’t always spell out comprehensively where, or not, a product is gluten-free.

“You can get gluten-free foods at lower cost in other countries than in Ireland, and other countries have a better track record in this area.”

Although Irish supermarkets display an ever-increasing variety of gluten-free foods, consumers pay more for the privilege.

Research carried out by SuperValu shows the average cost of a coeliac shopping basket is 87% higher than that of a non-coeliac basket.

The Coeliac Society is working with the HSE and the Department of Health to find more cost-efficient ways of government support for coeliacs, following the decision to eliminate financial support previously available through the Medical Card Scheme.

“Before now, you were able to get staple foods prescribed by a GP, such as breads and cereals from your pharmacy, but that was stopped in September,” Denning says.

“We’ve been looking at our counterparts in the UK and Finland, for example, where there are different systems of supports.

“In the UK, there are guidelines in terms of the amount of product a coeliac needs to consume to maintain health — this is very important, because if you’re a coeliac who’s not following a gluten-free diet, you’ll mal-absorb nutrients. ”

The UK guidelines outline a person’s requirements based on criteria like age, gender and BMI, which would ensure there is less wastage in the system.

“A form of support could be reintroduced that would be more efficient, whilst maintaining peoples’ health.”

*Coeliac Society of Ireland

Telephone: 01- 872 1471



‘Tummy bug’ proved more serious

For Billy McCann, it started at Christmas 2005 with what seemed a tummy bug. The ‘bug,’ and stomach pains, didn’t go away, and Billy’s condition worsened; he had severe diarrhoea and loss of energy.

He had been reasonably fit, but the 57-year-old, from Dundrum, soon found it difficult to walk 30 yards.

By the following summer, he’d lost two stone — it wasn’t until October, following a battery of tests, that the father-of-one learned that he was a coeliac.

He went to the supermarket and ferreted out gluten-free products using the list supplied by the Coeliac Society of Ireland: “That became my bible. It was a life-saver in the first few weeks. The only way to be really sure is to look at the food list produced by the society, so I use that as a basis.

“Since I started eating gluten-free, the quality of my life has improved hugely and my energy levels are better than they’ve ever been.”

There’s a downside — the cost of the family’s weekly groceries has increased noticeably. Some gluten-free foods, such as bread or muesli, are two or three times the cost of ordinary products.

“The government support for coeliacs should be brought back — they’ve taken the product off the GMS and that’s not right.

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