Friday 24 November 2017

'I'm heartbroken at the pain my girls went through with coeliac disease'

When their twins were diagnosed with coeliac disease, Shirley and Vincent immediately started their girls on a gluten-free diet. Improved sleep patterns, more energy and no more tummy pain are just some benefits they found

Vincent and Shirley Scriven with their twin daughters Alyson, left, and Hannah (6) who were diagnosed with coeliac disease three years ago. Photo: Damien Eagers
Vincent and Shirley Scriven with their twin daughters Alyson, left, and Hannah (6) who were diagnosed with coeliac disease three years ago. Photo: Damien Eagers

Arlene Harris

In some circles, it has become almost fashionable to have an intolerance to certain foods - everywhere you go people are talking about avoiding dairy, wheat or carbohydrate. But for some people the situation is more serious and eating the wrong foods can play havoc with their digestive system, and ultimately, their lives.

Coeliac disease is a condition which affects at least 46,000 people in Ireland but many more go undiagnosed for years. Shirley and Vincent Scriven's twin daughters Hannah and Allyson, (6), were diagnosed almost three years ago after battling with constant stomach pains and lethargy for years.

"Just after the girls' third birthday, Hannah got a tummy bug and Allyson went down with it shortly after," says Shirley, who works as an administrator.

"They were both vomiting for a few days and after that cleared up, they seemed to have persistent aches and pains and recurring diarrhoea. I took them to the doctor who said the tummy bug was still in their systems, but I wasn't convinced that that was the problem."

A couple of months later, Hannah was diagnosed with a chest infection and was taken to Tallaght hospital to have a blood test to determine why her immune system seemed to be so low. Results revealed that she had a very high coeliac reading.

"When doctors discovered that her coeliac reading was high, they suggested doing a biopsy on her intestine and also one on Allyson, just to be sure," says Vincent, who works in sales. "These tests confirmed what we were all thinking by now, that both girls had coeliac disease."

"It was a bit of a shock at first, particularly as 18 months previously, Hannah had tested negative for coeliac," adds Shirley. "My brother and sister both have the condition so I was aware of the symptoms but thought we were in the clear as the initial tests didn't show anything - sadly this wasn't the case."

The twin girls had spent the best part of a year feeling tired, cold and unwell as well as having regular stomach pains. And although their parents were saddened to hear the diagnosis, they knew they could make changes which would alter the girls' lives.

"Once we had been given the go ahead to start changing their diets, we told the girls that the reason they had been feeling so bad was because of how their bodies reacted to certain foods," says Shirley.

"Once they realised they would get better if they didn't eat those things, they were fine about it. To be honest, they were such plain and fussy eaters before, that they didn't really have to omit too many things.

"We got new breadbins, chopping boards and toasters, I cleaned out all the cupboards in the kitchen and kept a high shelf for stuff like pasta and bread that Vincent and I would be eating.

"Aside from that, pretty much everything else we bought in would be food the whole family could eat.

"Of course, it was harder going shopping as we had to check the ingredients on everything and the gluten-free options are a little more costly, but once you get used to the different way of shopping and eating, it becomes a way of life."

Three years after their diagnoses, the Kildare twins have a new lease of life and their mother says it breaks her heart to think of the suffering they went through when they were little.

"Up until their third birthday, the girls were very listless, pale, underweight and generally felt unwell all of the time," says Shirley.

"When I think about how they used to be doubled over with pain in their tummies, I feel heartbroken for what they went through.

"When we changed them to a gluten-free diet, the pains subsided more or less straight away but it took about a year for us to notice a real difference.

"Now both Hannah and Allyson are thriving. They have put on weight, got colour in their cheeks, they sleep through the night and are full of energy - they are even wearing the right clothes for their age group which is a huge achievement.

"People who haven't seen them for a while are amazed at the difference - it's hard to believe that they could have changed so much for the better by simply cutting out gluten.

"And because they were so young when they were diagnosed, the changes haven't been too difficult for them as they weren't so used to any one diet," adds Shirley.

"Of course, there are times when they ask for things they aren't allowed to have but for the most part, they are totally aware of the need to stay off gluten and even tell people about their condition."

Creating awareness is something their dad, Vincent, says is really important.

"I assumed most people knew what coeliac disease is," he says. "But I was really surprised to find out how many have no idea.

"I have found that sometimes in restaurants, people don't realise the need to keep food containing gluten away from the gluten-free. We have been in places where our bread will be put on the same dish as the girls' dish, which of course, can cause cross-contamination.

"I know it isn't life threatening, but eating a crumb of regular bread could cause up to 48 hours of stomach cramps, and this isn't something we want to put our children through - so the more awareness out there the better."

* The Ballynogluten Roadshows featuring celebrity chef Kevin Dundon, in association with the Coeliac Society and Supervalu take place in various venues on October 3, October 17, November 7, November 14. See for all venues. Tickets cost €5 and under 12s are free.

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