University of Otago (New-Zealand): researchers have completed the first national
survey of people with coeliac disease in New Zealand and found that many
experience ongoing health challenges despite adhering to treatments.
Many
sufferers experienced ongoing symptoms and restricted their travel and
social activities due to difficulties in following the recommended
gluten-free diet, the researchers found.
Coeliac disease – an
autoimmune condition in which the body reacts abnormally to the gluten
portion of certain grains (including wheat, rye, barley, oats and their
hybrids) interfering with the intestine's absorption of various foods –
affects about 1% of New Zealand adults. The only treatment is strict
adherence to a gluten-free diet.
To gain an understanding of the
health and dietary treatment of people with coeliac disease, Dr Kirsten
Coppell, along with fellow Otago researchers Masters of Dietetics
student, Kiri Sharp and biostatistician, Heather Walker, surveyed 936
clinically-diagnosed members of Coeliac New Zealand Inc. as part of The
New Zealand Coeliac Health Survey.
The survey results, recently published in Nutrition & Dietetics,
indicate that though most participants (88%) described their diet as
being strictly gluten-free, many had incomplete recovery and continued
to experience symptoms ranging from fatigue to vitamin and mineral
deficiencies, weight loss, joint pains and skin rashes.
The
survey also revealed that many patients, more than one-third (36%), had
some degree of difficulty following a gluten-free diet, often due to
problems finding good quality gluten-free foods and identifying whether
foods were gluten-free or not from the labels.
The researchers
also noted that more than one-third (36.6%) of those surveyed avoided
travelling because of coeliac disease at least some of the time, and
one-quarter (25.6%) never or rarely ate at restaurants.
Dr
Coppell says that the situation has improved with more gluten-free
options available in supermarkets and in restaurants than ever before.
However these findings indicate that inadequate knowledge and processes
for the manufacturing and preparation of gluten-free foods could be
contributing to recurrent symptoms among those with coeliac disease.
“The
continuation of symptoms is likely the result of accidental gluten
consumption rather than deliberately eating gluten. Not all people may
have been aware of all the hidden sources of gluten in the diet. Even
though 80% of participants were referred to a dietitian upon diagnosis,
not all dietitians necessarily have extensive knowledge about
gluten-free diets.”
This knowledge gap can be passed on to
patients, making it difficult for people to accurately follow their
gluten-free diets – despite their best intentions, she says.
She
hopes the results of the survey will lead to improved knowledge for
those with coeliac as well as individuals involved in their care, the
restaurant and food industries, and the hospitality sector.
“Better
quality control and awareness about gluten-free food production and
preparation is needed within the food industry and the hospitality
sector. Having up-to-date, good sources of information about adopting a
gluten-free diet could make a significant difference for New Zealanders
with coeliac disease.”
The study appears in the international journal Nutrition & Dietetics and was supported by the University’s Departments of Human Nutrition and Medicine.