Cork mother says daughter would 'scream with pain' before coeliac disease diagnosis

If a relation has coeliac disease, your odds of having the condition rise significantly, as Ashleigh O’Neill’s mother discovered. Helen O’Callaghan meets the family ahead of Coeliac Awareness Week.

When her 11-year-old daughter gets invited to a birthday party, Catherine O’Neill rings up the hosting mum and asks ‘what food are you having?’

Ashleigh O’Neill with her brother James at home at Clondulane, Fermoy. Pic: Eddie O’Hare

The Fermoy mother-of-two used to be mortified about doing this. “Now I think: what’s worse – me being embarrassed or my child being sick?”

Ashleigh has coeliac disease, a genetic condition that causes her body to react abnormally to gluten, a type of protein found in wheat, barley and rye. She was diagnosed at six, having endured symptoms through her toddler years that no doctor could explain. 

“She had trouble with bowel movements. She’d be screaming with constipation pain. She got a rash. We were told it was thrush, then ‘she might have worms’. She got different creams – it was still there. In playschool, her teacher brought it to our attention that she was so itchy, she was rocking in her chair.”

The little girl had a dry scalp, itchy spots on her head. One doctor said put mayonnaise on her head. At primary school, the teacher called Catherine in, again saying Ashleigh’s rocking was disrupting the class. 

We went to a paediatrician who said it was normal behaviour! Later, I was angry as hell why he wasn’t informed about coeliac disease.

For Catherine, two people signposted the road to discovery: a public health nurse who queried whether it could be an allergy and a CUH consultant, who – ordering a batch of blood tests to be done on Ashleigh – suddenly said ‘check her for coeliac disease too’. 

Discovering Ashleigh had the condition was “a bombshell”. Yet Catherine was aware, even as a child, that her first cousin had coeliac disease. And Ashleigh’s dad, Jim, has triplet sisters – two of them have coeliac disease.

This week is Coeliac Awareness Week and the Coeliac Society of Ireland wants to stress the familial aspect of the condition, which affects one in 100 people in Ireland. 

Richelle Flanagan, a dietician on the board of the Coeliac Society, points out if you have a first degree relative (parent, sibling) with the disease, your risk of having it rises to one in 10. And if a second degree relative (aunt, uncle) has it, your risk is one in 39. 

Some people with coeliac disease experience no symptoms, yet internal damage is still happening, so the Coeliac Society advises anyone with a first degree relative with the condition to discuss testing with their GP.

The disease can strike at any age, though there are two main stages when it’s seen – in young babies and in people in their 30s and 40s. Most common symptoms are diarrhoea, cramps, wind and constipation. 

But there’s a myriad of non-gastric symptoms most people mightn’t associate with the disease: aching joints, alopecia, mouth ulcers, migraine, depression, chronic fatigue and early menopause. 

Both patients and their GP can overlook the possibility that symptoms could be linked to coeliac disease. 

“Often people who present with anaemia and irritable bowel symptoms aren’t automatically checked for coeliac disease. People just put it down to not eating properly or having ‘a bit of a dicky tummy’,” says Ms Flanagan.

A blood test generally detects coeliac disease but not always – gold standard test is biopsy of the small bowel. In Fermoy, Ashleigh’s brother, James, 8, has been having tummy pains recently. A blood test showed negative for coeliac disease. 

“But coeliac disease can get away from you,” says Catherine, who knows only too well – so James will undergo further testing.

Coeliac disease isn’t a fad or lifestyle choice. It’s not part of any fashion for going gluten-free. 

“It’s a serious, lifelong condition,” says Coeliac Society chairperson Mary Twohig. “If undiagnosed, people could develop osteoporosis, anaemia, nerve damage and it can [negatively] impact fertility.” 

In someone with the condition, the body reacts very badly to gluten, causing damage to the gut’s lining, thus making it harder to absorb nutrients. 

“People with coeliac disease are 10 times more likely to get osteoporosis. They have higher risk of autoimmune disease. And the disease also has risk for different types of cancer,” says Ms Flanagan.

Getting a diagnosis means overhauling your diet, food shopping, cupboards – even your kitchen equipment. Off the menu are not just wheat, barley and rye but any foods made with these ingredients – normal bread, biscuits, cakes, pasta, noodles, couscous and many packaged foods. 

“There’s a difference between not having any ingredients that contain gluten and a food fully being gluten-free. This is because cross-contamination can add gluten to a food,” says Eatwell founder Sarah Keogh. 

“So if someone’s making gluten-free bread, but there’s ordinary flour around from the last thing made, the gluten can get into the gluten-free food. And that’s enough to damage the gut [of someone with coeliac disease].”

Most ordinary kitchens are a nightmare of cross-contamination potential for someone with coeliac disease – crumbs from ordinary bread getting into butter, jam or spreads; oil in deep-fat fryer, already used to make something with gluten, contaminating the gluten-free food; not thoroughly cleaning the kitchen after ordinary flour has been used; gluten-free foods touching gluten-containing foods. 

People with the condition have to be scrupulous about food storage and preparation. They must keep electric mixers, food processors, colanders, graters, whisks, tin openers, grills, kitchen scales, blenders and cutlery drawers completely free of gluten. 

They’re advised to cook gluten-free items in the oven separately from gluten-containing foods, buy separate toaster for gluten-free bread, get separate cutting boards and always have separate flour sieve for gluten-free baking.

“In my naivety I thought I’d give the gluten-free diet a go for a few months,” says garden designer Peter Dowdall, who was diagnosed in his 40s. 

The Glanmire-based dad of two had cancer in his 20s, five years of chemo and a stem cell transplant. While always having “a bit of an iffy stomach”, his abdominal pain and cramping became unbearable in the two years pre-coeliac diagnosis. 

Given his history, discovering the symptoms were due to coeliac disease was a relief. “I stick completely to a gluten-free diet. I’ve never in my life felt better,” says Peter.

“If everybody in the house goes gluten-free, it’s easier on mum who’s doing the shopping and cooking,” says Catherine O’Neill. Going gluten-free has transformed Ashleigh’s health. 

She was very skinny. As soon as the diet started working, she gained weight, the exhaustion went, the stomach pains. All the itching stopped.

The 11-year-old has adapted well, says Catherine. “Her dream is to open her own café and call it Ashleigh’s Coeliac Café.” 

But eating out poses problems. Recently, at a popular restaurant, the family was told upon arrival there was nothing gluten-free on the menu. 

“They said they could give Ashleigh a bowl of fruit. I said ‘you want us to sit down for her father’s birthday meal and we three have a lovely dinner with dessert – and we stick a bowl of fruit in front of her’. It’s so frustrating.”

Coeliac Awareness Week (nationwide, May 14-20), supported by SuperValu, has a series of in-store events at SuperValu: dietetic talks, advice from Coeliac Society and gluten-free food samplings. Visit www.coeliac.ie for more info, top tips for hosting/cooking for someone with the condition and list of gluten-free foods.


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