It was in 1888 that the first description of coeliac disease was published by Samuel Gee, a lecturer in medicine at St Bartholemew’s Hospital, London. In his classic paper, On The Coeliac affection, he describes a ‘kind of chronic indigestion’ and ‘wasting, weakness and pallor’ in patients, with bellies ‘soft, doughy and inelastic; sometimes distended and rather tight’. Although uncertain of the cause, he knew that ‘if the patient can be cured at all, it must be by means of diet’.

One hundred and twenty years on we have a deeper understanding of coeliac disease and dietary changes needed to manage it, but what remains unchanged is that many continue to suffer with it undiagnosed, and public awareness is low of a condition estimated to affect 1% of the population.

What is coeliac disease?
Coeliac disease is permanent, inherited and triggered by an intolerance to gluten proteins, found in wheat, rye and barley, and in all products derived from them- breads, pastas, biscuits and cakes- as well as many processed foods, such as some cheese spreads and sausages, where wheat is used as a bulking agent.

Gluten triggers an inflammatory reaction in the guts of people with coeliac disease, which causes the body’s immune system to attack its own tissues. Accordingly, it is classed as an auto- immune disease, like type 1 diabetes and rheumatoid arthritis, and not an allergy.

The lining of the small intestine is particularly susceptible to erosion and damage, and therefore a lot of symptoms may be gut-based- diarrhoea, indigestion, stomach pain, and so on. But because the immune system is involved, symptoms beyond the gut are sometimes experienced too. Besides those observed by Gee, there may also be, for instance, mouth ulcers, neurological complaints, as well as any number of symptoms of malnutrition.

Across the board

Worryingly, according to the Coeliac Sociaty of Ireland (CSI), non- diagnosis here is widespread. With estimates suggesting 1% of the population may have the condition, and with around 20,000 diagnosed, there could be at least another 20,000 or more living with it unawares, increasing their risk of long- term complications, such as gastro- intestinal cancers.

“Often, doctors don’t consider coeliac disease as quickly as they should,” says Emma Clarke Conway, spokesperson at the CSI. “Other conditions such as IBS (Irritable Bowel Syndrome) are explored first, and it may be the last in a long list of considerations, making it a struggle for many to get diagnosed.”

Diagnosis can only be made through a blood test and by an endoscopy and biopsy, in which a tube is passed down the throat into the stomach and small intestine, and a sample of gut lining is taken for examination.

Sadly some individuals, many of them of middle- age and beyond, who have suffered gut symptoms for years and perhaps have been misdiagnosed with IBS, seek out complementary practitioners who then advise them to avoid wheat and dairy. Emma ads: “From a coeliac point of view, people must go through the orthodox route, and excluding wheat before testing can make an accurate diagnosis more difficult.”

Supervised diet

Gastroentelorologist Dr William Dickey of Altnagelvin Hospital, Derry, is an international authority on coeliac disease, and has patients who have been diagnosed in their seventies and eighties. He is also concerned about unreliable ‘diagnoses’ from alternative practitioners, to whom many people turn through desperation, or when dissatisfied with their orthodox care.

“Many practitioners don’t understand the extent to which gluten permeates our food,” he says. “I’ve seen people who have been told they are ‘allergic’ to not only wheat, but many other foods, and as consequence are malnourished. Any change in diet, especially a gluten-free diet for coeliacs, must be supervised by a dietitian. “
Malnutrition is a real concern for all, as the gut damage caused by coeliac disease can severely affect the absorption of food and nutrients.

Dietitian Norma McGough of the British charity Coeliac UK says that coeliac patients, especially newly-diagnosed ones, may need iron and calcium supplementation, and perhaps injections of vitamins, such as B12. But she agrees, too, that the key problem is getting to that stage of diagnosis.

“Many people diagnosed in their 50s have had symptoms all their lives,” she says. “If they’re chronic symptoms , they may not even recognise them- they’ve had them so long they’ve adjusted and learned to live with them, and only realise the difference once they’ve been diagnosed and start on a gluten-free diet.

People tend to ‘accept’ symptoms when they get older- they tell themselves ‘I’m not as young as I was’ and don’t suspect anything might be wrong. And with something like anaemia- a prime coeliac symptom- you wouldn’t necessary know about it without test.” She adds: “Those diagnosed later in life may experience an acute onset of diarrhoea , which may trigger more investigation and then a diagnosis. But if you have gut problems for a few weeks, then a period of feeling okay for a few months, then that looks like IBS and so that’s what you may be diagnosed with.”

Late diagnosis

Around one in three new diagnosis of coeliac disease is in over 60s, and the symptoms can be subtle. Thankfully, through, the problem of long-standing misdiagnosis with IBS is now being recognised. Recently, the National Institute for Clinical Excellence (NICE) issued revised guidelines in the UK for the diagnosis and management of IBS, among which was the recommendation that coeliac disease be confidently ruled out before an IBS diagnosis is made.

Emma Clarke Conway agrees that adapting the recommendations would be useful, but adds that “some work needs to go in to developing them to suit Ireland and also to promote them among GPs.” The need is clearly there: a review published in the Archives of Internal Medicine in April 2009 found that those diagnosed with IBS are four times as likely to have undiagnosed coeliac disease than those not diagnosed with IBS>

For those diagnosed in older age there are added health concerns. “Osteoporosis can be a significant worry, especially in women diagnosed after menopause,” says Norma McGough. “People with long-standing undiagnosed coeliac disease will have been poorly absorbing calcium, possibly for many years, and so it is important to screen for osteoporosis and have a DEXA scan to ascertain the risks. Calcium supplements and other dietary changes may be required.”

Cut out gluten
As far as dietary changes go, the cornerstone of treatment is a gluten-free diet, which reverses the intestinal damage caused. Many specialist gluten-free products, such as bread, pasta and biscuits, are now widely available in health food shops and supermarkets, often in designated ‘free-from’ areas. Those with medical cards can get products on prescription and others can claim tax relief against them. Following diagnosis, you should receive a consultation with a dietitian to guide you through the gluten-free maze.

“Most newly diagnosed coeliacs will feel better within a week or two of gluten exclusion,” reassures Norma. “And the good news is that increased longer-term health risks, which include intestinal melanomas, reduce over time too.”

GLUTEN AND COELIAC DISEASE-THE FACTS

• Gluten is found in wheat, rye, barley and spelt. Sensitive coeliacs may react to the protein in oats too. Rice, corn, millet, quinoa, buckwheat and amaranth are gluten free.

• Naturally gluten-free foods include all unprocessed meats, fish, fruit, vegetables, nuts, seeds, eggs and dairy products.

• Symptoms vary, but may include diarrhoea, constipation, stomach pain, nausea, tiredness, pale pallor, skin rashes weight-loss, increased susceptibility to viruses, depression, headaches, loss of appetite, and others.

• You are ten times as likely to have coeliac disease if a close family member has it.

• It can present at any age, and is twice as common in females.

• it can only be diagnosed through blood tests and biopsy available through your doctor- not through exclusion diets or complementary techniques-and you must not try to cut out gluten until a firm diagnosis is made.