Are you 1 in 100?

Coeliac disease is one of the most under-diagnosed, yet most common chronic disease. If left undiagnosed, it may lead to the possibility of such severe consequences as bowel cancer and osteoporosis.

Approximately 1 in 100 people in Australia are affected by celiac disease, but 4 out of 5 people don’t know they have it. Coeliac disease is an auto-immune disorder, which means that the body produces antibodies that attack its own tissues. Coeliac disease is triggered by gluten, a protein found in wheat, rye, barley and oats.

In untreated coeliac disease the lining of the small intestine is damaged. This causes a flattening of the tiny finger-like projections called villi which line the inside of the small intestine. The function of villi is to absorb nutrients from food. If the villi are flattened, malabsorption occurs. Thus a person with untreated coeliac disease can have deficiencies in vitamins, minerals, and sometimes proteins, carbohydrates and fats..

Symptoms

Symptoms of coeliac disease may range from mild to severe, and can include:

bloating, diarrhoea, nausea, wind, tiredness, constipation, anaemia, mouth ulcers, headaches, weight loss, hair loss, skin problems, short stature (or in children, failure to thrive and developmental delays), infertility, unexplained osteoporosis, recurrent miscarriages and joint/bone pain.

Some symptoms may be confused with irritable bowel syndrome (IBS), or wheat intolerance, while others may be put down to stress, or to getting older.

Diagnosis

A specific blood test that measures antibodies to gluten is available through your General Practitioner. This blood test is a screening aid in the diagnosis of coeliac disease. If the test is positive, a referral is made to a gastroenterologist. A small bowel biopsy is carried out to confirm that the small bowel lining shows the typical damage of coeliac disease. If coeliac disease is suspected, a gluten free diet should not be started before testing, as it will interfere with establishing the correct diagnosis.

Coeliac disease and my family

My husband, David, and 2 of my 3 children, have coeliac disease. They all had different symptoms of the condition.

My daughter, Emily, presented with a ravenous appetite and vomiting in her toddler years. These symptoms dissipated, but when she was 7 she started experiencing stomach cramps, fatigue, irritability and weight loss. Eventually she was diagnosed with coeliac disease.

My son, Lachlan, presented with abdominal distension, large bulky foul stools, diarrhoea, tiredness, irritability, short stature, and global developmental delays. He also displayed many autistic- type traits. It took three years for him to be diagnosed with coeliac disease. This diagnosis only occurred after Emily had been screened for coeliac disease.

David and I were both screened for coeliac disease after Emily and Lachlan were diagnosed, due to the genetic link. David had a positive blood screen so underwent a biopsy. Interestingly his small intestine appeared normal. With further tests he was discovered to be calcium deficient and was diagnosed with osteopenia. (low bone density) This diagnosis also helped explain his long history of dental defects.

Recovery on a Gluten Free Diet

Within 6 months of Emily starting a gluten free diet, she was re-biopsied and had full villi recovery. This made sense as her energy and vitality had returned and she was actually growing quite quickly!

Lachlan’s small intestine took 17 months to recover, but the other changes that occurred during that time were amazing. With the instigation of a gluten free diet Lachlan emerged from the painful fog in which he had been living. Family and friends watched in amazement as Lachlan began to talk, climb on play equipment, ride a bike, play with toys and socially interact. In addition, all the autistic type behaviours simply disappeared!!

International discussion papers on coeliac disease state that other parents of children with untreated coeliac disease have reported behaviours such as irritability, separation anxiety, emotional withdrawal and autistic-like behaviors just as Lachlan displayed. The behaviours in their children also resolved on a gluten free diet.

As well as instigating a gluten free diet, David ‘s treatment for managing his osteopenia was the prescription of daily calcium and vitamin D supplements plus regular weight bearing exercise. Bi-annual bone density scans are also undertaken to keep progress in check.

The Gluten Free Diet

Many foods are gluten free in their natural state including fresh meat, fruit and vegetables. A large part of the diet is based on corn and rice products. Substitutes for wheat flour include polenta, nut meal, and potato, soy, and maize or rice flour. A binding agent such as xanthum gum or guar gum is often required when baking.

One of the keys to effectively managing a gluten free diet is to always be prepared and have some food on hand. Many activities/events in our society are based around food, so coeliacs often need to self-cater and plan ahead.

The gluten free diet is a lifelong diet and for coeliacs it is a medical requirement to establish and maintain optimum health.

Coeliac Awareness Week

Coeliac Awareness Week is March 13 – 20

This is a National event which aims to highlight coeliac disease via media and the like. National, State and Regional Coeliac Support Groups encourage their members to organize gluten free functions and disseminate information about coeliac disease to family, friends, work colleagues and the general public.

My Book

I have written a children’s picture book called Food For Me Is Gluten Free which encapsulates what being a coeliac means to my family. The book has resulted from my experiences and is for everyone: children (both coeliac and non-coeliac), parents, grandparents, family members, friends, teachers, kinders and schools. 10 percent of the proceeds from Food For Me Is Gluten Free ’will be donated to coeliac research. (The Australian and New Zealand Coeliac Research Fund)

Food For Me Is Gluten Free is available through Sandcastle Press. (RRP $14.95) E-mail: sandcastlepress@optusnet.com.au

Written By Sally Learey Feb 2007 ©