Why is a gluten-free diet so difficult?

 

Ireland has the highest rate of coeliac disease in the world, but do people with an intolerance to gluten find tolerance of their condition in their own country?

Since our daughter was diagnosed with coeliac disease, eating out has become a lottery of unpredictability, and eating in requires long-term planning. A quick treat in a coffee shop is now almost impossible.

Ireland, the land of 1,000 welcomes, is, it seems, a bit picky in its hospitality.

Coeliac disease affects more than one in 100 people in this country – we have the highest prevalence in the world – yet it is still not regarded as an everyday issue.

Why is Ireland not more tolerant of this very common intolerance?

Coeliac disease is a permanent intolerance to gluten – a protein found in wheat, barley, oats and rye – that results in damage to the intestine.

No one is sure why we have such a high rate here – Italy is second highest – but perhaps it is something to do with a changeover to a heavily wheat-based diet a few hundred years ago.

Normally little fingers in the lining of the gut called villi catch the food and hold it long enough for the body to retain the nutrients. In coeliacs, the gluten damages these villi so that food runs straight through and essential nutrition is lost.

Apart from a deficiency in iron, calcium and other essential minerals, the results can be severe.

In children, the symptoms range from failure to thrive to shortness, delayed puberty and diarrhoea. In adults, stomach pain, constipation, chronic fatigue, anaemia and osteoporosis are common, and, if untreated, it can even lead to infertility.

Although there are good substitutes for the main gluten offenders such as bread, pasta and cakes, the real dangers lie in the hidden foods that contain gluten such as gravies, sauces, or anything made with thickeners and modified starch which can make adhering to a strict gluten-free diet challenging.

Madeleine Garry has recently been diagnosed at the age of 38, after six months of irritable-bowel syndrome-like symptoms.

“I knew very little about coeliac disease beforehand, and have found it very difficult to adapt to the diet, particularly with small kids.

“The hardest part is being diagnosed for two years and still knowing my diet is not entirely gluten-free because I so frequently overlook elements. In particular, I miss decent bread.”

The Coeliac Society of Ireland warns that this is a dangerous course to take. Every time the diet is broken, the villi are damaged, and although the severity of symptoms will vary from person to person, the long-term damage can lead to quite serious complications.

So why is it so hard to adhere to the diet?

Garry explains, “The off-the-shelf products are prohibitively expensive. As a food lover, it’s depressing and for me to rectify this situation requires a lot of time and personal focus that I don’t really have to spare.

“It doesn’t help that awareness is so limited in restaurants, although it is improving. It’s so restrictive, it runs contra to the spirit of hospitality and fine dining, and gets confused with being a fussy eater which I hate.”

However, Liz Favilli of the coeliac society insists things have vastly improved.

“Lots of progress has been made throughout the years in the hospitality industry, and many restaurants , including some chippers, are doing a wonderful job in catering for coeliacs.”

The society works with the Food Safety Authority of Ireland on raising awareness on providing safe food for coeliacs, and keep a Coeliac Friendly Restaurantlist.

It also provides a comprehensive booklet that lists every food and brand that can be eaten, covering a significant range of everyday foods, as well as specific gluten-free items.

Mark Nolan, owner of Nolans Food Fare in Terenure, has found a huge demand for these foods.

“I did a bit of research and decided to stock about 40 products. However, as more and more customers have come in looking for an increasing range, I now stock about 200 gluten-free products with plans to increase to nearly 400.

“I do find sourcing fresh products difficult but I’ll always try to get them.”

Pricing is higher than normal foods, and because of the risk of cross-contamination, certification for gluten-free foods is difficult, but he is hoping to have a fresh gluten-free section in the coming weeks.

“I have a commitment to bring in gluten-free foods not yet available in Ireland because I hear every day from customers who find it hard.”

While high pricing and limited availability is in part responsible for many coeliacs not adhering to a strict diet, Favilli insists it’s getting better.

“Nowadays, the good news is that, once you know where to look, you will find a choice of gluten-free foods.

“In fact, all the major supermarkets and health food stores stock a selection of gluten-free products, usually in a separate section of the shop to avoid cross-contamination issues.

“More and more supermarkets are developing own-brand gluten-free products.”

Barbara Casey, aged 51, who was diagnosed at the age of 27, following several years of constipation, severe abdominal pain and anaemia, has seen a huge increase in the availability of gluten-free foods.

“Years ago, it was virtually impossible to eat out. Now, although still limited, it is much easier – thanks in part to information from the coeliac society – to buy and get gluten-free foods.

“At first, the thought of a life-long gluten-free diet was so daunting, but now it’s just a way of life.”

It seems while progress is being made, coeliacs still have some way to go before adhering to a strict gluten-free diet becomes less challenging.

Liz Favilli explains, “We are still working through education and awareness campaigns to help coeliacs and others who benefit from a gluten-free diet to be able to enjoy a meal out without fear for their health or being seen as fussy eaters.”


For further information, visit coeliac.ie and nolansfoodfare.ie

'The only cure is a life-long gluten-free diet - no more birthday cakes and buns at parties'

When Poppy turned four, 10 pink princesses came to her party. Our little girl was growing up. Except she wasn’t. Her friends were all a head and shoulders above her.

Poppy has always been different to her sister – less energetic, never sleeping, constant diarrhoea, always tired, and a little whingy. She had complained of tummy ache for a couple of years and we followed GP’s advice and withdrew citrus fruits.

We often thought she was just asking for attention because we could find nothing wrong.

But a specialist at Our Lady’s Children’s Hospital in Crumlin finally confirmed she was abnormally small. Tests showed she had the bone age of a two year old and was failing to thrive.

Under a general anaesthetic, a biopsy of her gut confirmed she has coeliac disease.

The only cure is a life-long gluten-free diet – no more birthday cakes and buns at parties, no sharing sandwiches with friends, no quick packet of crisps for a snack, very little processed food.

As a mother, the thought of having to control every single thing she puts in her mouth is daunting, but actually it’s been fairly pain-free once I found where to go.

And any time it’s a hassle I just look at my new daughter. She has grown a centimetre in a month. She sleeps through the night for the first time in four years. She is energetic, enthusiastic, engaged, bubbly, happy.

Her playschool teacher says she’s a new child. She’s still my old child – kind, beautiful and feisty, but now an even better version.