Difficult path to coeliac diagnosis

[Posted: Thu 02/08/2007]

By Angela Long  

One in every hundred Irish people suffers from coeliac disease. Yet it can take months, if not years, to have it identified and treated correctly.

The question often arises whether there are more people with food allergies these days, or is it just that there is more recognition of conditions that used to be ignored or labelled incorrectly.

People who cannot tolerate wheat, barley, oats or rye – coeliacs –  have been around in Ireland for a long time. Their numbers appear to have swelled in recent years, but that could be just a case of better diagnosis now, although, as the Coeliac Society of Ireland says, there is a lot still to be done in raising awareness.

Ireland in fact has one of the highest incidences of coeliac condition in the world, particularly in the south-east. Genes are believed to be responsible. Globally, around one in every 250 people is believed to have the coeliac gene.

Coeliac disease is a lifelong condition of the small intestine (bowel). What coeliac individuals cannot take is gluten, a mixture of two proteins called gliadin and glutenin. This is found in wheat, barley and rye. Oats is not in itself a cause, but people with coeliac disease are often told to avoid them because of the possibility of contamination with other gluten-containing grains.

In coeliac disease, gluten causes the immune system to produce antibodies that attack the delicate lining of the bowel, which is responsible for absorbing nutrients and vitamins from food.

Coeliac disease can be diagnosed at any age, but it is often found in babies after weaning, when cereals are first introduced into the diet. Diagnosis can be slow as doctors will try for more obvious diseases. A survey this year of coeliacs in Britain found that the average time before a correct diagnosis was 13 years.

The symptoms, such as upset stomach, diarrhoea, can be inconclusive. A blood test can give a good indication of whether a person has the condition, but sometimes an endoscopy is required.
Angela Kelly is a young Irish woman recently diagnosed with coeliac disease. She has tackled the problem whole-heartedly, and made major changes to her diet.

For Angela, the change in her life and lifestyle came after a series of sore throats. This is not a symptom, but viruses can bring about the changes in the body which lead to a coeliac condition.

“I started off getting recurrent throat infections, and had taken several courses of antibiotics, when I began to get stomach problems,” she told irishhealth.com. ’The doctor said it was the infection going down into my stomach.”

But what had happened, and the exact effect of the infection, was not clear until 18 visits, to three different GPs. Eventually, a locum, originally from India, spotted the real cause of her illness.

“He ordered a blood test, and it came up positive for coeliac,” says Angela.

The blood tests are 90% accurate, she was told, but for absolute confirmation she underwent the endoscopy as well.  Angela had a local anaesthetic to minimise the discomfort. (In an endoscopy a thin flexible tube is inserted through the mouth into the stomach and small bowel, to get a small sample of tissue.)

“I was diagnosed a week before my final college exams, so that was quite hard,’ she says. “And the only advice I was given, over the phone, was to avoid gluten.”

“I contacted the [Coeliac] Society and it was thanks to them I realised I could get on the road to recovery.”

She took the bull by the horns and has totally changed her diet. “I was a vegetarian already, so that was a help, I was used to eating differently from a lot of people,” she says. “My diet is mainly organic fruit and vegetables, with millet, buckwheat, brown rice, tofu.”

“I think the main thing is to prepare yourself. For example, I make my own bread every week and always have some soup ready.”

People who learn they are coeliac need a positive attitude. “For me, it was take it on wholeheartedly or struggle with it,” says Angela.

 Things have improved for coeliacs in Ireland over the past 20 years, according to Anne Manning of the Coeliac Society.

A major driver of this was the EU Directive of November 2005 which made it compulsory for all food manufacturers to list gluten as an ingredient on packaging.

Links which the Food Safety Authority of Ireland has with overseas food companies have also had a beneficial influence, she believes.
“Around 70% of the food products we eat come from outside Ireland," she says. "Guidelines  to prevent cross contamination of gluten free foods, prepared by the FSAI, have been sent to companies worldwide by the Food List Team. This is part of the investigation into food products to ensure they comply with the Society's regulations, so in a way we have spread the
requirements elsewhere."

Ms Manning was diagnosed as coeliac herself seven years ago, but was in a perfect position to know how to cope. Her son, now in his 30s, was diagnosed as a baby, when Ms Manning started her association with the Coeliac Society.

She became responsible for the food list, which tells coeliacs here what they can eat safely.
 
This document has become a volume, and the CSI produces a booklet every year with a comprehensive account of foods that tally with coeliac requirements.

“The 2007 food list has over 300 pages of food and drink products available in most supermarkets and corner shops in Ireland,” she says. “It also includes all the special gluten-free dietary foods which have been fully vetted by the Society, and there’s also a section on vitamins and over-the-counter remedies.”

When Anne Manning started the coeliac-safe list, she referred to around 60 food companies. Now the figure is over 1,000, she says.

The Society has also started a list of restaurants which offer coeliac menus. Establishments are placed on this list by recommendations of other coeliacs who have received a good service. The restaurants are not actually vetted by the Society, and Ms Manning says coeliacs should always be proactive when eating out.

There is even gluten-free beer (wine and spirits are fine for coeliacs). English brewer Derek Greene is exporting his varieties, including Pioneer (lager) and Pilgrim (cherry beer). There is also Glutaner, a gluten-free lager distributed by Eurobeers, a Cork company.

Ms Manning says coeliacs should also be aware that they can claim income tax relief for labelled gluten-free products, under section 69 of the Taxes Consolidation Act 1997.

Supermarkets such as Superquinn and Tesco will give customers certificates of expenditure, which show the spending on coeliac foods and are accepted by the Revenue.

* The Coeliac Society of Ireland is based at Carmichael House, 4 North Brunswick St, Dublin 7. Tel no (01) 872 1471, visit www.coeliac.ie

kath  Posted: 10/08/2007 21:59

Found the Irish Coeliac Society a marvellous help when first diagnosed 2.5 years ago. Managing diet fine, bake/cook my own foods. Do miss gungy gluten laden cakes but have never strayed back to them. See the whole changeover very positively. There are worse things in life which others have to surmount daily

THEO  Posted: 11/08/2007 11:18

EXCELLENT ARTICLE I HAVE A FRIEND WHO IS COELIAC will pass on

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