Coeliac Disease
Coeliac disease (pronounced see-lee-ak) is an inflammatory condition caused by an intolerance to a food protein called gluten, which is found in wheat, oats, barley and rye. Gluten causes the body’s immune system to be activated inappropriately causing inflammation and damage to the lining of duodenum and jejunum in the small intestine. Coeliac disease is also sometimes referred to as gluten sensitive enteropathy or coeliac sprue.
Who Gets Coeliac Disease?
Coeliac disease has a tendency to run in families. If one family member suffers from the condition then there is a 10-15% chance that an immediate family member will also have the condition.
The average age of diagnosis of coeliac disease is approximately 40 years, but it can occur at any age. It is possible that a major life event such as pregnancy, severe emotional stress, surgery or exposure to a particular virus may activate the condition in genetically pre-disposed individuals. There is also some suggestion that the early introduction of wheat into a child’s diet may induce the condition.
In New Zealand it is estimated that coelic disease affects up to 1 in 100 of the general population. New Zealanders of Celtic origin are at greatest risk of developing the condition.
Individuals with autoimmune conditions such as rheumatoid arthritis, diabetes mellitus, and sarcoidosis, have a higher incidence of coeliac disease.
Causes, Signs and Symptoms
This damage affects the bowel’s ability to absorb nutrients from food and leads to a wide range of symptoms including abdominal discomfort, weight changes and nutrient deficiencies.
Coeliac disease is known both as a malabsorption syndrome (mal = bad, absorption = uptake) and an autoimmune disorder. Withdrawal of gluten from the diet will stop the damage and allow the bowel to return to near normal function.
THE DIGESTIVE SYSTEM
Coeliac disease is caused by an inflammatory response in the small intestine. The exact mechanism of the condition is not understood. However, it is known that when food containing gluten reaches the small intestine the immune system activates in response to a substance called gliadin, which is found in the gluten. The resulting inflammation damages tiny finger-like projections in the small bowel, called villi, where the absorption of nutrients from food takes place..
Diagram courtesy of NIDDK
The villi become inflamed and “flattened”. The surface area available for digestion is therefore decreased and fewer digestive enzymes are produced. As a result the person is unable to absorb nutrients from food effectively. The damage is known as gluten sensitive enteropathy (GSE) or villous atrophy. Scarring occurs if the bowel is exposed to dietary gluten over a long period of time.
The sensitivity of individuals to gluten varies greatly. Often the onset of the condition occurs over a long period of time and goes relatively unnoticed.
In children, the symptoms tend to be more dramatic and appear after the introduction of cereal into the diet. Weight loss, diarrhoea, a swollen abdomen and irritability may become obvious.
In adults, damage to the small intestine may be severe without symptoms being obvious or specific. This may make it difficult for coeliac disease to be identified. The condition is often not suspected until complications, such as nutrient deficiencies, cause other problems.
Symptoms of coeliac disease may include some or all of the following:
- Weight change – usually weight loss, occasionally weight gain
- Indigestion, abdominal pain, bloating and gas production. This may be general or associated with digestion of particular foods
- Gastrointestinal changes – bulky fatty bowel motions, sometimes pale and offensive smelling. Vomiting, diarrhoea and occasionally constipation
- Anaemia, folate and vitamin B12 deficiencies
- Fatigue and generalised weakness
- Muscle cramps due to low calcium levels
- Slowed growth rate in children
- Blistering, itchy or painful rash - particularly about the knees, elbows, buttocks and back (dermatitis herpetiformis).
(Return to top)
Coeliac disease is often difficult to diagnose, due to its non-specific symptoms and the long period of onset. Diagnosis is based on three main areas:
Medical history:
The doctor will take note of the symptoms that the person has been experiencing and whether there is a family history of coeliac disease. Any unexplained deficiencies such as a low iron or folate levels in the blood (causing anaemia) may alert the doctor to the possibility of an absorption disorder. A referral to a doctor specialising in digestive system disorders (a gastroenterologist) may then be made.
Blood tests:
If coeliac disease is suspected, the person may have blood taken to test for specific antibodies that, if found, are suggestive of coeliac disease when other symptoms are present. Complete withdrawal of gluten from the diet should result in the antibodies disappearing from the blood and restoration of the inner lining of the small bowel.
Small bowel biopsy:
In New Zealand the test most commonly used to diagnose coeliac disease is a small bowel biopsy. It is the only test that will conclusively diagnose the condition.
The biopsy is taken during a procedure called a gastroscopy. A gastroscopy usually takes less than half an hour and is performed by a specialist. It is performed on a day stay basis using only a light sedation. Special preparation to clear out the bowel before the test is needed.
During the gastroscopy a small flexible tube called an endoscope is passed down the person’s throat and into the beginning of the small intestine. The endoscope contains a special camera that allows the specialist to view the inside lining of the small intestine on a television monitor. A very small piece of tissue is removed (a biopsy) and sent to a laboratory for viewing under a high powered microscope. A characteristic change in the tissue would confirm that the person was suffering from coeliac disease.
The treatment for coeliac disease is the complete removal of gluten-containing foods from the diet
In some cases medications, such as steroids, are required to further decrease the body’s abnormal immune response, therefore reducing inflammation.
Medications to treat conditions that have developed as a result of coeliac disease, such as anaemia, nutrient deficiencies and osteoporosis may also be required.
A repeat biopsy is sometimes performed three to six months after starting a gluten-free diet to check small intestine recovery. Studies suggest that if gluten is withdrawn from the diet the bowel lining will return to close to normal in approximately three months. Eating gluten again can result in severe damage to the bowel in as little as three weeks. The amount of gluten eaten, the degree of bowel injury and the severity of symptoms are often not directly related to each other. This means that the person cannot rely on symptoms to gauge the amount of small intestine damage. Therefore strict adherence to a gluten free diet is essential.
The gluten-free diet must be maintained for life, as continued exposure (even to a small amount of gluten) can place the person at risk of complications. It is important to emphasise that there is a huge range of foods that can be eaten and enjoyed that do not contain gluten.
If coeliac is not effectively treated with a strict gluten-free diet, long term complications can occur. These include:
- An increased risk of developing certain types of bowel cancer (lymphoma and adenocarcinoma).
- Osteoporosis (low bone density).
- Nervous system disorders such as irritability, depression, nerve damage (neuropathy) and seizures.
- Missed menstrual periods.
- Reduced fertility along with risks to the foetus.
(Return to top)
Strategies For Dietary Management
Because gluten is found in wheat, oats, barley and rye, it is widely consumed in the Western diet but may not always be obvious. It is important to know safe foods to eat and be wary of hidden sources.
Education:
A referral to a dietitian would be usual. In New Zealand a person is entitled to be seen by a dietitian within the public health system, but may choose to see a dietitian privately. Check in the telephone directory for a list of Registered Dietitians (these may also be listed under nutritionists). The dietitian can discuss a gluten free diet with the person and their family and provide written information as reference material. It is important that the diet is relevant to the person’s situation, particularly if they have other medical conditions. A referral to a dietitian should be arranged once the diagnosis has been made. The person and family should have the gluten-free diet explained and should be provided with written information about gluten free foods and places where these can be bought.
Planning:
Meals should be planned ahead and gluten-free snacks kept available. Most “fast foods” contain gluten so should not be eaten.
Dining out:
It may be useful to find out about eating places that will make gluten free meals, or learn to adapt menu choices to rule out the possibility of being served meals containing gluten. It is helpful to educate friends and family about the condition and gluten-free foods, so that meal invitations don’t become difficult.
Unknown foods:
Never eat foods with unknown ingredients as they may contain gluten.
Gluten foods:
Never eat foods known to contain gluten.
Gluten-free Suppliers:
Learn about common gluten-free products and outlets in the local area. Nutrition Services at AucklandCityHospital has compiled a list of gluten-free products available. The information has been supplied by New Zealand Food Manufacturers and is published as part of the New Zealand Manufactured Food Database. While it is not a complete list of all gluten free foods in New Zealand it does provide a selection of products that can be confidently stated to be gluten-free. The Coeliac Society of NZ has a database of retailers who sell gluten-free goods throughout New Zealand.
Gluten-free product subsidy:
In New Zealand, once a specialist has confirmed a diagnosis of coeliac disease, an application can be made to the Ministry of Health for a government subsidy on gluten-free products, such as flour, bread mix and pasta. These can only be obtained on prescription from particular pharmacies. There is a prescription charge for these items, as for any medicine that is prescribed by a doctor. It may take up to six weeks for the approval and Ministry of Health number to be processed. Approvals must be requested by a specialist, GP or dietitian.
Support groups:
Coeliac New Zealand (Inc) was formed in 1973 to promote the welfare of children and adults who have been diagnosed with coeliac disease and dermatitis herpetiformis. It provides members with information on coeliac disease and dermatitis herpetiformis, the gluten free diet, where to shop, recipes and helpful advice to make the transformation from gluten to gluten free as easy as possible. The organisation also has a members’ only area on its website full of recipes, gluten free accommodation providers, articles, discussion forum, and many other resources. The contact details for Coeliac New Zealand are given below.
Further Information and Support
Coeliac New Zealand (Inc)
P O Box 35 724
Browns Bay
AUCKLAND 0753
New Zealand Manufactured Food Database (MFD): This is a national resource administered by Nutrition Services at AucklandCityHospital. The database includes information provided by manufacturers about their food products. A booklet listing gluten-free food products in New Zealand is available upon request (there may be a small fee for this). The same information can be found on the MFD website.
Nutrition Services
Auckland City Hospital
Private Bag 92 024
AUCKLAND 1001
Ph: (09) 307 4949 ext 25 087
Fax: (09) 309 7656
Email: mfd@adhb.govt.nz
Website: www.mfd.co.nz
Auckland Allergy Clinic (Date unknown) Coeliac Disease. Auckland Allergy Clinic. Auckland.
http://www.allergyclinic.co.nz/guides/8.html
Coeliac Disease. Coeliac New Zealand (Inc). Auckland. http://www.coeliac.co.nz/
Ford-Martin. P, Odle. T (2005) Celiac Disease. The Gale Encyclopedia of Alternative Medicine. Second Edition. Jacqueline L. Longe (Editor). Farmington Hills, MI. Gale Group.
Gastroenterological Society of Australia (2004) Coeliac Disease. (Pamphlet). Gastroenterological Society of Australia (GESA).
Last Reviewed – 27/03/07
Go to our Medical Library Index Page to find information on other medical conditions.