COELIAC DISEASE- a patient's guide
- Coeliac disease is an inflammatory disease of the small bowel triggered by sensitivity to gluten found in wheat ,barley and rye.
- The illness prevents absorption of crucial nutrients, for example iron, causing anaemia
- Calcium, folic acid and fat soluble vitamins may not be absorbed
- The disease may cause diarrhoea, vomiting and lead to weight loss and ill health
- Increasingly, milder forms with fewer overt symptoms are being recognised
- The condition resolves with the introduction of a gluten-free diet
- Rice, corn, soy, buckwheat and arrowroot form part of a gluten-free diet
- A accurate definitive diagnosis with duodenal(bowel) biopsy is needed before a strict diet is adopted
- Many people are not diagnosed until adulthood (average age in 40s)
- Breast feeding and late introduction of wheat to babies diets may help prevent it
What is it?
Coeliac disease is also known as gluten enteropathy and coeliac spur. It is an illness caused by intolerance (heightened immunological response) to gluten which is found in wheat, and similar proteins in barley and rye.
It is not an allergy but eating foods which contain gluten can upset and inflame the small intestine, preventing the digestion of crucial nutrients.
Sufferers fail to digest and absorb their food properly, leading to weight loss and failure to thrive.
The incidence ranges from country to country. With the advent of new tests, it is now recognised that it is perhaps much more common than previously thought and may affect 1 in 200 individuals.
Evidence suggests that hereditary factors play an important role with 4 to 22% of first degree relatives affected. However only 60-70% of identical twins are affected, suggesting other factors like infections may play a role in triggering it.
Many foods contain gluten including wheat, bran, flour, cereal, rye, barley, durum, burghul, triticale, spelt, farina, semolina, starch, oats, pasta, noodles, vermicelli, bread crumbs, liquorice, and couscous..
What are the symptoms?
Note: many patients, particularly in adulthood, may have minimal symptoms.
Table of Symptoms that may relate to Coeliac Disease- note that these symptoms occur in many other conditions as well .
Gastrointestinal (Bowel)presenting Symptoms
· Abdominal pain
· Steatorrhoea(loose bowels from fat)
· Other non-specific abdominal /indigestion
· Fatigue and tiredness
· Aching Joints and Muscles
· Skin Rashes and mouth (apthous) ulcers
A skin condition that causes blistering rash is also linked to coeliac disease (dermatitis herpetiformis).
The problem can appear at any age and is often not diagnosed until adulthood.
Children normally show signs before the age of two. They may have failed to thrive after the introduction of wheat to their diet, and show signs of regular stomach pain, persisting diarrhoea and irritability.
In some cases growth failure may not happen for many years and only comes to light in teenage years with delayed puberty.
Some people with the condition may not have intestinal problems. The only indication may be iron or folic acid deficiency, and anaemia.
The condition can be hard to diagnose because of the variety of non specific symptoms. The average delay in diagnosis is reported to be 4.5 to 9 years.
How is Coeliac Disease diagnosed ?
Persisting or recurrent symptoms as outlined above should prompt a blood test as an initial investigation.
There are several sensitive blood tests that have greatly helped in suspected cases. The most useful tests are the IgA tissue transglutaminase antibody test and Endomysial antibody
It is worth noting that these tests may be negative in around 6-9% of cases.
Occasionally false positive tests may occur eg in liver disease and type 1 Diabetes
The gold standard confirmatory test is a duodenal biopsy (this involves an endoscopy=tube down stomach). This will enable a biopsy of the duodenum portion of the small bowel which shows characteristic changes when viewed under the microscope (villous atrophy).A gluten free diet should not be commenced prior to this test.
Follow up biopsies may be required depending on progress.
Blood tests may show other problems such as anaemia resulting from lack of absorption of essential nutrients
Prognosis and complications
If a gluten free diet is followed, the outlook is excellent and good health should be achieved.
Failure to adhere to a strict gluten-free diet may result in ongoing symptoms and an increased (albeit very small )risk of certain bowel cancers (small intestinal and oesophageal cancers). Adhering to a strict gluten free diet protects against these malignancies.
Another important long term risk is osteoporosis (thinning of bones) and patients should be checked and treated for this. This has been shown to be present in 40 % at time of diagnosis .
Infertility and adverse pregnancy outcomes have been linked to undiagnosed celiac disease, although these risks are likely to be low.
Decreased immunity (functional hyposplenism) has been shown to occur in 30 % of patients. If there is evidence of this on blood tests, various vaccines can be offered- eg pneumococcal and influenza.
What can be done?
A life-long gluten-free diet is necessary for people with coeliac disease.
This may be very difficult to achieve and sustain, as gluten is present in so many foods. The support and guidance of a good dietician is extremely helpful.
Improvement is generally noticed after one to two weeks on a gluten-free diet. Changes in the lining of the bowel may take months or years.
Compliance with diet may be monitored by regular antibody tests .
People with coeliac disease must be extremely careful about what they eat and to check packaging for any signs of ingredients which may contain gluten.
Sausages, soups and pastries may also have to be ruled out of the diet.
Rice, corn, soy, millet, buckwheat, arrowroot are the mainstay of a gluten-free diet.
Other gluten-free products include sago, chickpea flour, cornmeal, cider, glucose syrup, rapeseed, and modified maize starch.
There is continued debate over whether oats produce symptoms in people with coeliac disease. Oats have been ruled out of the diet in the past but recent studies have shown they do not cause symptoms.
Young children on restricted diets may need vitamin supplements.
Patients with coeliac disease should be seen by a doctor at least once a year for a medical check-up.
How can it be prevented?
Coeliac disease is believed to be inherited in some cases. But the early introduction of wheat to babies diets could also be to blame.
Breast feeding and introducing wheat to babies diets at a late stage are thought to protect against coeliac disease.
Do not adopt a strict diet without tests to confirm coeliac disease.
Research into what triggers the illness to develop.
Diagnosing milder cases earlier using antibody tests. There is probably no role for screening the asymptomatic general population for the condition.
Your doctor or dietician will be able to help and direct you to appropriate specialist and supportive care.
Useful Websites for Patients.
1)Coeliac UK- A charity working for people with celiac disease
2)Celiac Disease Foundation- Support and information
3)Coeliac Society of New-Zealand Inc.