Coeliac disease is an auto-immune disease where, when people with the disease eat gluten – a protein in wheat that is present in bread, pasta and crackers and more – a serious reaction in their bodies is triggered. The lining of the gut may be damaged, but nerve damage can also occur.

Even a breadcrumb containing gluten picked up from a butter dish can trigger a reaction, making the person with coeliac disease very unwell for days.

One in 100 people in Ireland are coeliac and many others are walking around thinking that irritable bowel syndrome is causing their bloating, diarrhoea and more.

That may not be the case, however, and Sarah Keogh, dietitian with the Coeliac Society of Ireland, is advising people with the symptoms to have the simple blood test for coeliac disease done in order to rule this condition out.

“The symptoms that we tend to know a lot about, in relation to coeliac disease, is the attack in the gut. That’s where people can start to have bad diarrhoea and bloating or they might get bad constipation.

“They can feel very sick but a lot of people won’t actually get those symptoms at all. Coeliac disease can turn up in other places in the body because it’s not limited just to your digestion. There can be a very itchy rash – dermatitis herpetiformus – and nerve damage and loss of balance too.”

She sees the impact of late diagnosis at the Coeliac Society clinic in Dublin.

“We see people who are in a wheelchair from having severe nerve damage caused by coeliac disease and people with brain fog, too, where there is nerve damage in the brain and teenagers also who have poor balance and then when they go on a gluten-free diet their balance returns. Nerve damage is a little less common than gut symptoms but we do see it.”

Fertility

Sarah has observed big impacts on fertility too.

“Women with undiagnosed coeliac disease will have more difficulty becoming pregnant, they may have repeated miscarriages and they are more likely to have a stillborn baby also. All of this (risk) vanishes once they are on a gluten-free diet.

“Men need to be tested too. It’s such a simple thing to fix if that’s what the problem is, before they go spending a fortune on IVF treatment. I think anyone with infertility problems needs to rule out coeliac disease.”

She says newly diagnosed patients present with osteoporosis also.

“That’s partly because the person with undiagnosed coeliac disease is not absorbing the calcium and vitamin D, but also because the auto-immune aspect of the disease is interfering with the bone.”

Undiagnosed cases

About two-thirds if not three-quarters of people who have coeliac disease in Ireland are undiagnosed, she believes.

“They might think they have a bad stomach, they might be getting migraines, they might have infertility,” she says.

But how much gluten does it take to trigger an attack?

“Twenty parts per million is enough to trigger a reaction. It’s that tiny. A breadcrumb in the butter that you then spread on your gluten-free bread is enough to do it. This is a severe form auto-immune reaction – it’s important to get that message out.”

So why, if it is such a serious disease, are people not being diagnosed early on?

“What we are finding is that people aren’t thinking about coeliac disease as a possibility often enough,” Sarah says.

“If you look at a lot of medical textbooks they still talk about the classic diarrhoea/weight-loss symptoms but most people with coeliac disease these days do not turn up with those extreme symptoms so it’s often not something that people think about. If a person’s iron level is low regularly, they need a coeliac test too. What we find is that it has taken members (of the Coeliac Society) about 10 years to be diagnosed from the first time they go to their doctor.”

Stomach pain in children

It also needs to be thought about as a possible cause when a child is unwell, she says.

“We need to look at it in children who have bloating and stomach pain. All too often they are told it is anxiety but it could be coeliac disease.”

The Coeliac Society estimates that there are 8,000 children with undiagnosed coeliac disease in Ireland right now.

“That’s affecting their growth, their ability to concentrate in school. In some children fussy eating and constipation together would be something you would think about coeliac disease for.”

testing for coeliac disease

Preparing for the coeliac blood test properly is important, however. That means you must continue eating gluten until you have been fully tested. The blood test will return a negative result if not.

So what if there is this lack of awareness among doctors? “GPs have so much to do and do an incredible job in very difficult circumstances,” says the dietitian, “but we are encouraging people to think coeliac. We have a website called www.isitcoelicdisease.ie where you can put in all your symptoms and bring the print out to your GP and it might just flag it.”

Definitive testing for coeliac disease in adults involves a simple blood (screening) test and if positive, a biopsy of the gut after that. For children it is usually a blood test only.

Dietary restrictions

The main obvious ones are wheat or rye or barley.

“This means that all the normal bread, all pasta, biscuits, crackers and most sauces (because they are thickened with flour) – are out.

“They are actually quite easy to avoid but the bigger problem is little bits of gluten getting into things where it’s not obvious. You get it in stock cubes, in some brands of mayonnaise, in a meal cooked in a restaurant where it has touched something else. Cross contamination is a huge thing in restaurants – for example, if chips are cooked in a fryer that the battered cod was fried in earlier.”

Training courses for restaurants

This issue of cross contamination has led to the Coeliac Society offering training to restaurants:“We’re now running a Gluten Free Eating Out programme, all staff – waiting, front of house and chefs – are educated around this and the restaurant gets a sticker in the window after training saying they can properly provide gluten-free food. It was launched this year and it’s getting great pick-up at the moment.”

Gluten-free fad

“When you get a big fad a lot of people jump on it,” Sarah adds.

“One thing this fad has done is that it has done wonders for the amount of gluten-free food available on shelves. It hasn’t brought the price down, however. There used to be State financial assistance for people buying gluten-free food but sadly that’s gone.” CL

Extra info

Reading labels is very important but labels may not tell if there is gluten in the food. The biggest part of the Coeliac Society’s work is providing a booklet listing the foods that are gluten free. Updates are provided on their website. The society now also runs a dietitian clinic that members can attend in Dublin (North Brunswick Street).

If seeing a dietitian elsewhere they recommend that you see a CORU registered dietitian. See www.coru.ie

www.isitcoelicdisease.ie

Joan Blake from Gorey, Co Wexford (as seen in the ad for Aldi) was diagnosed with coeliac disease when she was 25. Always delicate and small as a child, she remembers being with the doctor and being weighed and measured constantly.

“I was always tired and pale and sickly with no appetite and my tummy would bloat. The fact was I wasn’t absorbing the nourishment in food.”

Working in fashion retail in Nicholl’s in Dublin and engaged to be married in 1971, she was having gastroenteritis-type infections frequently so she was referred to Sir Patrick Dun’s Hospital.

“Very little was known about coeliac disease then, but after all sorts of tests I was told that’s what I had. I got no prescription and I never saw a dietitian but I resolved to always stay on the gluten-free diet to keep myself well. I remember looking up the dictionary to learn more about it. I was one of the first ladies in supermarkets to be seen reading the ingredients on labels.”

Settling in Wexford after marriage she arrived with two things – her tritamyl flour and her Farley’s gluten-free biscuits.

“That was all that was available. The first loaf I made went in bits.”

Joan says that she “came to life” about three months after going on the gluten-free diet.

“It took that long for my system to come right,” she says. “I haven’t looked back since. I’m 73 now and have great energy. I had five children and I managed all along and if anyone tells me they have coeliac disease I say, ‘You should thank God you’ve nothing more sinister because you don’t have to take medication or inject yourself. You can control this just by eating the right food’.”

She remembers a lot of ignorance around the condition, however.

“People didn’t like the word ‘disease’. It used to be called ‘the wasting disease’. I think some thought it was contagious but we’ve come a long way since then. Gluten free is fashionable now. There’s a huge range now – though granted it’s full of sugar.”

Joan attends Coeliac Society meetings to stay informed and is glad there is more awareness now.

“Cross contamination is still an issue – staff sometimes don’t understand the seriousness of a person eating even a crumb of gluten. If you eat gluten unaware, within 12 hours you’d know you were in trouble. The diarrhoea is horrendous. You wouldn’t want it.”

Joan is thankful that she has “lived to tell the tale”.

“If I had been born 30 years earlier I mightn’t have survived. I was a bit of a guinea-pig for doctors. There is a lot more known now.”