Some people are sensitive to a protein in grains, including wheat, rye, spelt, and barley, called gluten. For these people, gluten causes changes in the lining of the upper part of the intestine, impairing its ability to absorb nutrients from your food. The condition is therefore sometimes called gluten-sensitive enteropathy (intestinal damage). Coeliac disease is often recognised in children, though it can manifest itself at any age.
How Common Is Coeliac Disease?
Coeliac disease is relatively common, affecting thousands of Australians. Its frequency is increased among family members of anyone affected. The condition is also common among people from overseas, especially from northern India. The frequency of gluten sensitivity is greater than expected among people with other disorders, particularly those with diabetes who require insulin. Notably, women appear to be at higher risk, accounting for 70% of all cases.
Gluten intolerance most commonly presents between 9 months and 3 years of age, after the introduction of cereals into the diet. The child loses or fails to gain weight, loses appetite, and their stools become softer, paler, larger and more frequent than usual. Their tummy may appear swollen and vomiting, diarrhoea or constipation may occur.
At older ages, people with coeliac disease tend to present with a deficiency of one or more nutrients which aren’t being absorbed properly. In childhood or adolescence this may present as a short stature and in adults, as weight loss. Tiredness and irritability are common. Your skin and tongue may appear pale due to lack of the normal red pigment in blood (anaemia). Problems with bones may occur, such as deformity, pain or liability to fracture. Since nutrients are incompletely absorbed, increased bowel frequency with the passage of bulky pale stools may occur and there might be associated abdominal pain and/or distension. However, many sufferers experience no bowel disturbance, and can actually be constipated.
It’s likely many people with gluten sensitivity experience few or no symptoms and the condition remains unrecognised unless it’s tested for when a close relative is diagnosed, or an unexpected blood test result leads to further investigation.
How Is Coeliac Disease Diagnosed?
When gluten comes into contact with the intestinal lining of a person who is sensitive to it, changes occur which are detectable under a microscope. The characteristic change is a flattening of the projections called ‘villi’, which resemble finger-like strands rising from the intestinal lining, though some people may only experience an alteration in the surface layer of cells.
The best means of diagnosis involves examining a tiny snip, known as a biopsy, from the surface of the small intestine.
A flexible telescope (endoscope) is usually passed through your mouth into your stomach and upper intestine so the lining can be inspected and a biopsy taken.
This process takes only a few minutes and is often made easier and less uncomfortable by giving a mild sedative beforehand. Alternatively, a biopsy can be obtained by swallowing a special capsule on the end of a narrow tube.
If the biopsy is abnormal, a second test may be advised after a period to check the intestinal surface has returned to normal.
When there is doubt about a previous diagnosis, or the changes on biopsy are uncertain, another biopsy may be advised after a person deliberately eats gluten for a period (gluten challenge).
Blood tests are helpful in detecting the body’s reaction (antibodies) to gluten, or indicating intestinal damage. Other blood tests indicate deficiencies of iron, vitamins such as folic acid, or minerals such as calcium. Inherited susceptibility can also be suggested by a blood test. Such blood tests are useful for screening relatives, or to suggest gluten sensitivity could be the cause of symptoms or nutrient deficiency. These tests don’t make the actual diagnosis, but indicate the necessity of a biopsy test.
If abdominal symptoms are troublesome or develop despite treatment, a barium X-ray of the intestine, which involves swallowing a tasteless white liquid, may be suggested.
What Can Be Done?
The abnormality of your intestine improves or disappears if gluten is avoided in food. This involves excluding all foods which contain wheat, rye or barley. There is debate as to whether oats should also be avoided. Currently most authorities advise omitting oats from a gluten-free diet since some brands may contain gluten, however it is possible to find gluten-free, uncontaminated oats.
Removing gluten from all food and drink is difficult as it’s present in bread, biscuits, cakes, pastries, breakfast cereals, pasta, beer, and most soups, sauces and puddings.
Gluten-free foods, such as gluten-free flour, bread, biscuits and pasta are available at many health food stores and grocery shops. Lists of gluten-free foods are available from manufacturers and also the Coeliac Society.
How Long Should Gluten be Avoided?
The potentially harmful effect of gluten on your intestine is life-long, so a gluten-free diet should be followed as a permanent lifestyle change.
If you’re gluten intolerant, you’ll feel so much better once you start the diet you may even tend to regard yourself as cured; this is especially the case with teenagers who were diagnosed as an infant.
It’s essential the diagnosis is established with certainty to begin with, and preferably confirmed by observing or testing for improvements in a second intestinal biopsy after maintaining a gluten-free diet for some weeks or months. Only if there is doubt about the original tests should gluten be taken again as a preliminary to a further biopsy test.
What Complications Can Occur?
Women with untreated gluten sensitivity may experience infertility, which is restored by withdrawal of gluten from the diet. Before and during pregnancy, women with gluten sensitivity should be particularly careful to take a supplement of folic acid, as advised for all women.
Thinning of bones (osteoporosis) may be more common among coeliacs than in the general population.
Some people with this condition don’t show the usual rapid improvements resulting from the cutting out of gluten, so special advice may be needed. More severe damage than usual, including narrowing of the intestine, and even the development of certain forms of cancer can rarely occur. These complications are very uncommon, especially if the condition is well treated.
What Help Is Available?
Sticking to a strict gluten-free diet requires determination and planning. It affects meal arrangements within your family. It makes eating in restaurants and with friends difficult. Sufferers, especially adolescents, feel different from other people and often restricted in their social life.
It’s therefore important to make use of all help available to you, and to consult a dietitian. The Coeliac Society is a national patient self help group offering support and encouragement to people with coeliac disease, offering updated lists of gluten-free foods and information regarding gluten-free diets.
Gluten sensitivity is curable by avoiding gluten in all food. The results of this treatment are excellent but it is inconvenient. A temporary or occasional lapse in the diet is unlikely to do harm, but anyone with this condition exclude gluten from their diet for the rest of their life. This should result in no further trouble, but may require help and encouragement in persevering with this alteration to their lifestyle.
Info & Extra Resources
- The Coeliac Society