Helping nurses understand coeliac disease: coeliac disease affects a significant number of New Zealanders. It is important nurses understand the disease and the importance of a gluten-free diet.

Coeliac disease (CD) is an autoimmune condition in which there is a permanent intestinal intolerance to dietary gluten. In CD, the cells of the small bowel are damaged (see Figure 1).This causes a flattening and inflammation of the villi (finger-like projections from the lining of the intestine) and the absorptive surface area of the bowel can be seriously impaired. This leads to deficiencies in vitamins, iron, folic acid and calcium and sugars, proteins and fats can also be poorly absorbed. Coeliac disease is a serious condition which needs to be recognised and treated accordingly. If left untreated, there is an increased risk of diseases such as thyrotoxicosis or hypothyroidism, vasculitis, sarcoidosis, certain malignancies, particularly of the small bowel, oesophagus and pharynx, as well as neurological associations and osteoporosis. If CD is diagnosed and treated properly, these risks fall considerably.

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Genetically-linked condition

Coeliac disease is a genetically linked condition. Studies show that 95 percent of coeliacs carry the HLA-DQ2 genetic marker, with most of the remaining five percent carrying DQ8. (1) This is a useful blood test for excluding the presence of CD, as a negative test is about 99 percent accurate in ruling out the disease. It is less useful in diagnosing the disease, however, as up to 30 percent of the non-coeliac population also carry this particular marker.

If one family member suffers from the condition then it is likely that others may also have inherited it. The incidence in first-degree relatives (parents, siblings) is about 10-15 percent, if a family member (parent or sibling) has CD. (2,3,4)

In adults, the average age of diagnosis is 40. However the condition may manifest itself at any age. (5) It is possible that a major life event such as a pregnancy, severe emotional stress or exposure to a particular virus may activate the condition in genetically predisposed individuals. There is also some suggestion that the early introduction of gluten into a child's diet may induce gluten sensitivity. (1)

Typically, CD was considered a paediatric disease. Many of us have nursed children admitted to hospital with "failure to thrive", steatorrhoea and general malaise. We remember the Crosby capsule for jejunal biopsies and faecal fat tests. However, it is now widely agreed that CD is a condition that can affect anyone at any age and stage of life.

Studies show CD to be a more common disorder than previously thought, possibly affecting up to one in 100 of the general population, and a Christchurch study suggests an incidence as high as one in 83. (6)

A 30-year study, from 1970 to 1999, lead by Christchurch gastroenterologist Bramwell Cook, showed that CD is most commonly diagnosed in adulthood between the age of 20 and 50, with the majority being diagnosed between 30 and 45. (5) Many cases may not be discovered and are often falsely diagnosed as Irritable Bowel Syndrome. In fact, only about one third of cases are ever diagnosed as CD and appropriately treated with a gluten-free (GF) diet. (5)

In New Zealand, CD is diagnosed at a rate of approximately three people per 1000. New Zealanders of Celtic origin are at greatest risk of developing the condition. (7)

Coeliac disease is associated with a variety of autoimmune disorders including rheumatoid arthritis, diabetes mellitus and thyroid disease. The prevalence of CD among children with insulin-dependent diabetes mellitus is 50 times more likely than children without. A deficiency in the antibody marker IgA is 10 times more common in coeliac patients than in the general population. There is also an increased risk for people with Down's syndrome. (1,8)

Blood testing is the first step to diagnosis. There are several coeliac-associated antibodies and the patient has to be consuming gluten for the markers to appear positive. The transglutaminase IgA antibodies and anti-gliadin IgA or IgG antibodies are checked, as well as the Endomysial antibodies (EMA). (9)

The most sensitive and specific of these tests is tissue transglutaminase IgA (TTG), followed by endomysial antibodies. However, as these assays depend on the detection of IgA antibodies, they will obviously be negative in individuals with IgA deficiency. Occasionally antigliadin IgG levels are helpful in this situation, although this is a much less reliable test. (9)

'Gold standard' for diagnosis

The "gold standard" for diagnosing coeliac disease is still a biopsy of the small intestine. (1,2,4,9) This can be done with or without sedation via a gastroscopy. Four specimens are taken from the second to the fourth part of the duodenum (approximately six-30 cm from the stomach). The specimens are then scrutinised microscopically for flattening of the normal villi in the lining of the intestine (as in Figure 1). (9)

The treatment for CD is a lifelong GF diet. This means avoiding the consumption of all foods containing gluten, and all food that may have become contaminated with gluten. It is also important to remember that some medications contain gluten, eg Codalgin tablets, and must be avoided. Once diagnosed, patients should initiate a strict GF diet under the supervision of a dietitian.

What is gluten?

Gluten is a protein found in wheat (and spelt), triticale (a combination of wheat and rye) barley and rye. There is ongoing debate about oats and at present most gastroenterologists recommend avoiding oats as well. Patients should be aware of hidden sources of gluten in flavourings and thickeners.

When considering gluten content, it is useful to consider foods in three groups.

1) Those that contain gluten: wheat, wheat-meal, wheat germ, rye, barley, triticale, pasta, semolina, farina, bulgar, couscous, bread, biscuits, batter, crumbs, malt, malt flavouring and malt extract. Oats, oatmeal and oat bran should also be avoided because of the risk of cross-contamination from other grains.

2) Those that may contain gluten (depending on source): modified starch, thickening agents and foods containing component ingredients, eg baking powder. Food Standards Australia New Zealand requires that cereals containing gluten and their products, namely, wheat, rye, barley, oats and spelt and their hybridised strains must be declared on the label of a product at all times when present in a food as an ingredient, an ingredient of a compound ingredient, a food additive or a processing aid. (10)

3) Those that are definitely gluten free: rice, rice bran, rice flour, corn, maize cornflour, maize meat, polenta, potato flour, buckwheat, arrowroot, chickpea flour, pea flour, soya flour, lentils, lentil flour, sago, tapioca, amaranth, quinoa, ground millet, sorghum and ground almonds.

If caring for somebody with CD, nurses need to remember the person may not be in hospital because of their CD. If the person is following a strict GF diet, they should be healthy from this perspective. However, it is important to remember the hospital admission may be due to a related condition, as mentioned earlier, or it could be something totally unrelated.

On admission to hospital, it is important to identify the patient's dietary needs. Nurses are generally very good at asking whether a patient requires a diabetic diet but they also need to ask if a GF diet is required. The GF diet is not a whim for a coeliac patient; it is a basic requirement for their continued well-being, thus it is important to reassure them their dietary needs will be met.

Suggestions for nurses

Here are a few simple things nurses can do to help those with CD who are in hospital:

* Make sure the GF diet is noted on admission and is mentioned in every shift handover.

* Never make the patient feel they are causing unnecessary work.

* Take the time to listen to the patient or their caregiver about their GF diet--they are likely to be very knowledgeable.

* Offer the menu and highlight the GF choices.

* Put the menu sheet back on the patient tray with their meat at mealtime. This is a simple yet effective way for the patient to feel reassured their request has been met.

* Be particularly aware of these needs if the patient is not able to speak for themselves.

* If the patient is a child, be confident in catering for them. They will trust you, if you tell them something is GF, so be sure that it is. Admission to hospital is stressful for the patient and family. Ensuring a coeliac patient receives their diet is a simple yet effective way of reducing some anxiety.

References

(1) Cook, B. et al. (2001/2002) Coeliac disease: A disease with many faces. Current Therapeutics; 42, 49-53.

(2) Auckland Allergy Clinic. www.allergyclinic.co.nz. Retrieved 12/07/07.

(3) Westerbeek, E. et al. (2005) Ceoliac disease diagnosed at Starship Children's Hospital: 1999-2002. The New Zealand Medical Journal; 118: 1220.

(4) Lane, M. (2004) Answers about coeliac disease. The New Zealand Medical Journal; 117: 1189.

(5) Cook, B. et al. (2004) A 30-year study of coeliac disease in the Canterbury Region of New Zealand. The New Zealand Medical Journal; 117: 1189.

(6) Cook, H.B. et al. (2000) Adult coeliac disease: prevalence and clinical significance. Journal of Gastroenterology Hepatology; 15, 1032-6.

(7) Southern Cross Healthcare. Coeliac disease general information.

(8) Simila, S. et al. (1990) Coexistence of Celiac Disease and Downs Syndrome. American Journal on Mental Retardation; 95: 1, 120-22.

(9) Anderson, R.(2006/07) Biopsy proven coeliac disease is essential. Coeliac Link; 9: 4.

(10) Steeper, A. (2006/07) The role of the manufactured foods' database and coeliac disease. Coeliac Link; 9: 4.

The Coeliac Society of New Zealand, established in 1973, promotes the welfare of adults and children diagnosed with coeliac disease.

It can be contacted at: PO Box 35 724, Browns Bay, North Shore City, Auckland; ph 09 820 5157 (24-hour message service), fax [phone], email: [e-mail] or www.coeliac.co.nz.

Catherine Wightman, RN, RSCN, Dip ChildHealth (children's community nursing) (UK) is children's community nurse for Waitemata District Health Board's Homecare for Kids programme. She is a member of the management committee of the Coeliac Society and has a 12-year-old son with the condition.