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The coeliac condition - a personal perspective

In January 1998 I presented to my GP with a problem that I had being ignoring for many years – progressive but insidious hair loss. Embarrassment led to denial of the symptom for many years. However, our impending wedding in August of that year motivated me to seek help so that I would look my best for our special day.

Numerous blood tests, followed by an endoscopy and jejunal biopsy confirmed a diagnosis of the coeliac condition. I had been diagnosed with this when just nine months old, but my parents were later told that I had ‘grown out’ of it as the medical thinking in the 1960s was that once a coeliac child was thriving, the gluten free diet was no longer necessary. As I had none of the more common symptoms associated with the condition, I was not suspicious that my hair loss was related to a reoccurrence of my childhood diagnosis. However, as my gastroenterologist explained, my hair loss was secondary to chronic anaemia, which in turn was due to malabsorption of essential minerals and nutrients, including iron, a classic symptom in the coeliac condition. He added quite dauntingly that a diagnosis of coeliac is "a life sentence with no parole", ie. a strict gluten free diet must be adhered to for a lifetime. I recommenced a gluten free diet in June 1998, and although I didn't boast a full, shiny head of hair on our wedding day in August, today I look and feel so much healthier.

The coeliac condition, also known as gluten-sensitive enteropathy, is a digestive disease that damages the small intestine and interferes with the absorption of nutrients. Those affected are unable to tolerate a protein called gluten, which is found in wheat, rye, barley and possibly oats. Coeliac condition is a genetic disease, frequently diagnosed in childhood, but often becomes active for the first time after surgery, pregnancy, childbirth, viral infection, or severe emotional stress.

Symptoms

Although my main symptom was alopecia (hair loss) which is relatively uncommon symptom, in adults symptoms vary and may include one or more of the following:

  • recurring abdominal bloating and pain
  • chronic diarrhoea
  • weight loss
  • pale and foul smelling stool
  • fatigue
  • muscle cramps
  • mouth ulcers
  • anaemia
  • tooth discolouration.

As symptoms can be so vague, the diagnoses may not be made for many years.

The common way the condition shows itself in children is a miserable child with chronic diarrhoea, abdominal distension and failure to thrive.

Diagnosis

Diagnosing the coeliac condition can be difficult because some symptoms are similar to those of other diseases including irritable bowel syndrome, Crohn's disease, ulcerative colitis, diverticulitis, intestinal infections, chronic fatigue syndrome and depression.

An endoscopic biopsy is the main means by which the condition is diagnosed in hospital. In the first few months after diagnosis, nutritional and biochemical/haematological responses are monitored. Another biopsy is carried out at four to six months. A yearly follow-up in a gastrointestinal clinic is then recommended.

Treatment

The only treatment for the coeliac condition is to follow a strict gluten free diet. For the majority of those diagnosed, improvements begin within days of commencing the diet. Symptoms will stop and problems in the small intestine are usually completely healed in three to six months. However, in older adults restoration to full health may take up to two years.

The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discolouration, may not improve.

A small percentage of those with coeliac condition do not improve on the gluten-free diet, or in conjunction with an initial course of steroid treatment. In such cases, severe damage has been caused to the intestines and therefore intravenous nutritional supplements may need to be administered, as they are unable to absorb enough nutrients to sustain metabolic requirements.

The gluten-free diet

A gluten-free diet means avoiding all foods that contain wheat, rye, barley and possibly oats. This includes all breads, cakes, biscuits, cereals, pasta and any processed food which contain these grains. I realised just how many processed foods contained gluten, using it as an additive, a stabiliser or an emulsifier. Some examples of non-cereal foods which contain gluten are: cocoa mixes, some salad dressings, certain ice creams and soya sauce. It is also important to avoid foods, which may have being ‘contaminated’ with gluten, for example frying an egg in the same cooking oil in which sausages or black puddings were cooked. Communion hosts also contain gluten.

Commencing a gluten-free diet required a completely new approach to eating. Speaking to a dietitian and joining the Coeliac Society of Ireland were great sources of practical help in getting to know foods which were ‘allowed’. I needed to read carefully the listed ingredients on food packet labels, keeping a constant lookout for terms such as wheat, wheat flour, breadcrumbs, cereal binder, noodles, starch, filler, etc.

It is of enormous benefit when manufactures use the gluten-free symbol on their labels as it removes any uncertainty regarding the gluten content of the product. This symbol depicts an ear of wheat crossed out.

Despite all restrictions, a well-balanced diet with a variety of foods can be enjoyed. In fact, a gluten-free diet is a very healthy one, as generally, naturally gluten-free foods are those which are nourishing and sustaining, eg. meat, fish, dairy produce, fruit, vegetables (including rice and potatoes). I continue to enjoy a meal out as most restaurants are familiar with the dietary restrictions, and simply mentioning these on booking a meal will ensure an enjoyable evening.

Background information

The coeliac condition is a common genetic condition in Europe. Throughout Europe statistics show a high incidence of undiagnosed Coeliac Disease.  Ireland is said to have 1 in 122. The European average is 1 in 100.

As the coeliac condition is a hereditary one, family members – particularly first-degree relatives (parents, siblings or children) – may also need to be tested for the condition. About 10% of an affected person's first-degree relatives will also have the disease.

In Italy, all children are screened by the age of six so that asymptomatic disease is caught early. With equally high incident rates in Ireland, it might be prudent for a similar screening programme to be established here.

Complications of the coeliac condition

The complication of most concern with coeliac condition is the risk of malignancy, particularly small bowel lymphoma. People with this condition have significantly lower bone mineral density so there is an increased rate of osteoporosis among this group.

Miscarriage and congenital malformation of the foetus are risks for undiagnosed pregnant women with the coeliac condition due to malabsorption of nutrients.

Disease associations

The coeliac condition is associated with a number of other conditions, which are thought to have an immune basis. In particular there is a strong association with type 1 diabetes, Down's Syndrome and dermatitis herpetiformis (DH).

Dermatitis herpetiformis is an itchy, blistering skin disease caused by gluten intolerance. The rash usually occurs on the elbows, knees and buttocks. A skin biopsy, and serum testing for the IgA antibody diagnose DH and the condition is treated with a gluten-free diet and medication to control the rash.

Other autoimmune diseases associated with the coeliac condition include: thyroid disease, systemic lupus erythematosus, liver disease, rheumatoid arthritis, Sjogren’s syndrome.

Living with the coeliac condition

Living with the coeliac condition is no more than an inconvenience. It does require forward planning when preparing lunches, eating out or going on holidays, but a ready supply of homemade gluten free foods, for example, bread and pastries, reduces the inconvenience and the cost of purchasing manufactured products. I continue to enjoy nursing on a busy surgical ward and I also give a helping hand on the family farm during my time off, therefore living with the coeliac condition does not prevent me from enjoying an active lifestyle.

I am thankful that I have responded well to the gluten free diet.

Most nursing and medical references to the coeliac condition use the phrase ‘coeliac disease’. In this article, I have deliberately refrained from using the word ‘disease’ as it can have connotations of ‘unwellness’, 'incurable' and sometimes ‘imminent death’. Certainly, if gluten is consumed, one can feel ‘unwell’, and yes, once diagnosed, a lifelong gluten free diet must be adhered to, therefore in a sense it is never ‘curable’. However, with regard to "imminent death’, most of us can look forward to living to a ripe old age!

Written by Mary Keegan. Mary is a nurse and can be contacted at hynesmary@eircom.net

For further information contact:

The Coeliac Society of Ireland,

Carmichael House,

4 North Brunswick Street,

Dublin 7.

Tel: 01-8721471

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Last Reviewed: 6th October 2000



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