Memorandum by Coeliac UK
1. INTRODUCTION
1.1 Coeliac UK is the only national charity
supporting people with coeliac disease. It was formed in 1968
as The Coeliac Society to provide support and advice to people
with coeliac disease.
1.2 Coeliac disease is a life-long auto-immune
disease caused by an intolerance to gluten. Left untreated it
can lead to life-threatening malnutrition or other serious complications
such as osteoporosis and bowel cancer. It can only be controlled
by a strict gluten-free diet for life. Therefore, in identifying
and managing the condition the issues are comparable to those
surrounding allergies and other intolerances.
1.3 Studies show that 1 in 100 people in
the general population have coeliac disease but only 1 in 8 will
have been clinically diagnosed. Of these Coeliac UK has over 70,000
people as members. It is the oldest and largest coeliac society
in the world; and a leading source of information on coeliac disease.
1.4 Besides supporting our members and the
broader coeliac community, the charity provides information to
healthcare professionals who use our services to provide information
to their patients.
1.5 We have a Helpline telephone service
run by registered dietitians providing advice and support to members,
health care professionals, food manufacturers and the general
public.
1.6 We also work closely with the leading
gluten-free food manufacturers and retailers to provide advice
and promote choice and availability.
1.7 We are also providing funding for invaluable
research into the causes, nature and treatment of coeliac disease.
2. DEFINING THE
PROBLEM
What is the definition of food allergy?
2.1 An allergic reaction to a food can be
described as an adverse reaction by the body's immune system to
the ingestion of a food that in the majority of individuals causes
no adverse effects. Allergic reactions to foods vary in severity
and can be potentially fatal. In food allergy the immune system
does not recognise as safe a protein component of the food to
which the individual is sensitive (such as some peanut proteins).
This component is termed the allergen. The immune system then
typically produces immunoglobulin E (IgE) antibodies to the allergen,
which trigger other cells to release substances that cause inflammation.
Allergic reactions are usually localised to a particular part
of the body and symptoms may include asthma, eczema, flushing
and swelling of tissues (eg the lips) or difficulty in breathing.
A severe reaction may result in anaphylaxis (as with severe peanut
allergy) in which there is a rapid fall in blood pressure and
severe shock. Food allergy is relatively rare, affecting an estimated
6-8 per cent of children and 1-2 per cent of adults, and is often
wrongly used as a general term for adverse reactions to food.
What is the definition of food intolerance?
2.2 Food intolerance is the general term
used to describe a range of adverse responses to food, including
allergic reactions (eg peanut allergy or coeliac disease), adverse
reactions resulting from enzyme deficiencies (eg lactose intolerance
or hereditary fructose intolerance), pharmacological reactions
(eg caffeine sensitivity) and other non-defined responses. Food
intolerance reactions are usually reproducible adverse responses
to a specific food or food ingredient, which can occur whether
or not the person realises they have eaten the food.
2.3 In any consideration of allergies and
intolerances, however, coeliac disease should also be considered
as it affects 1 in 100 of the population and people with the disease
face the same issues and challenges as people with allergies or
food intolerances. These include the difficulties of obtaining
early accurate diagnosis, the need to maintain a nutritional diet,
management of that diet, access to affordable food alternatives,
the safe selection of food, and the dangers of cross-contamination
in cooking and food preparation.
Incidence and prevalence
2.4 Studies have shown that the prevalence
of coeliac disease in the general population is 1 in 100. This
seems to be true across Europe. It may appear to be raising in
comparison to earlier studies but it is more likely that it is
simply better recognised than in the past and that there is a
greater awareness of coeliac disease. The development of screening
tools in antibodies tests specific to coeliac disease (i.e endomysial
antibodies—EMA- and tissue transglutaminise -tTGA) have
improved diagnosis rates in recent years.
Socio-economic impact
2.5 It is difficult to assess the overall
burden of coeliac disease due to the absence of recorded information
on diagnosis rates. There is a need for a central register of
coeliac disease patients.
2.6 As a health problem, coeliac disease
has an impact on both the individual and the community because
of high prevalence and long-term complications due to late diagnosis.
The development of osteoporosis or bowel cancer therefore has
an impact for the individual, the community and the health service.
Even in the short-term the absence of diagnosis has a socio-economic
impact.
2.7 According to an independent study commissioned
by Coeliac UK in 2006, just under half (46 per cent) of people
with coeliac disease who had been wrongly diagnosed believed that
their job or career suffered due to their condition prior to diagnosis.
3. TREATMENT
AND MANAGEMENT
3.1 Better understanding and greater familiarity
is needed among GPs for coeliac disease to be diagnosed earlier.
The disease needs to be recognised before the patient can be treated.
Coeliac disease needs to be higher in the GP's consciousness and
earlier testing is essential to diagnose or eliminate coeliac
disease from diagnosis early on.
3.2 GPs need to recognise that, once diagnosed,
patients need to be referred to a registered dietician to help
advise on the management of their diet. In the YouGov study of
diagnosis conducted in February 2006, 43 per cent of respondents
were not referred to a dietician despite the fact that the condition
can only be controlled by following a strict gluten-free diet.
3.3 Dieticians and other healthcare professionals,
namely GPs, need continuing professional development to ensure
that they are aware of the current guidelines on coeliac disease
and information on the gluten-free diet.
3.4 A survey conducted by Coeliac UK of
registered dieticians showed that there is a wide variation nationally
in the level of provision of dietetic expertise for patients with
coeliac disease. The current level of provision is in the region
of one third of what would be required to provide diagnosed coeliacs
in the UK with basic support and annual review.
4. GOVERNMENT
POLICIES
4.1 There is a continuing cost to the health
service in repeat visits to their GPs by people with undiagnosed
coeliac disease.
4.2 Furthermore, left untreated or undiagnosed
it can lead to more serious complications such as bowel cancer
and osteoporosis which will require a bigger drain on health service
resources in the longer term.
4.3 Coeliac UK recognises the competing
demands upon health service resources and budgets but coeliac
disease is a disease that is easily controllable once diagnosed.
It is a disease that can potentially be self-managed if diagnosed
early enough in life.
4.4 Government policy needs to acknowledge
the scale of coeliac disease's impact across a large segment of
the population. Policy also needs to take into account the potentially
serious nature of the disease, the cost in financial terms and
suffering for the undiagnosed and therefore recognise the importance
of early diagnosis. In particular measures could be taken to:
— address the lack of awareness of
the disease and to provide a framework to ensure that GPs receive
the appropriate training and resources. This would enable them
to better recognise and more accurately diagnose the disease and
thus increase the speed of diagnosis and improve diagnosis rates.
— and to provide ongoing training to
enable GPs to give better care in the community for patients with
coeliac disease.
Importance of prescriptions
4.5 As coeliac disease can only be controlled
through a gluten-free diet, which restricts intake of the staple
foods, it is essential that patients with coeliac disease are
able to buy gluten-free food substitutes for the staple foods
like bread, flour and pasta in the diet.
4.6 Many gluten-free foods and food ingredients
are more expensive than their gluten-containing alternatives.
To many people on low incomes, especially the vulnerable young
and old, the cost of some gluten-free foods could be prohibitive.
For example:
| Comparative costs | Normal price
| Gluten-free price |
| White loaf of bread (400g) | 35p
| £2.49 |
| Plain white flour (250g) | 22p
| £1.99 |
| Penne pasta (500g) | 31p |
£3.20 |
* This is based on a comparison between Dietary Specials gluten-free
products available in shops and Tesco's own brand.
4.7 The Department of Health provides guidance which
enable coeliac patients to receive prescriptions to obtain gluten-free
food and so maintain a healthy diet.
4.8 Recently, in an effort to make cost-savings, some
Primary Care Trusts have sought to restrict the number of gluten-free
prescriptions that are being issued and have issued guidance to
GP Surgeries to cut down on the number of prescriptions or restrict
them to staples. This may include bread, flour and bread mixes
but may not include pasta which to many people these days (particularly
with children) is now a staple. There has been an inconsistency
in the policies or recommendations put forward by PCTs across
the country.
Food labelling policy
4.9 In recent years we have seen great improvements in
the labelling of food containing gluten particularly in light
of the recent implementation of the European Commission Directive
on allergen labelling (2003/89/EC). This is a great advance and
Coeliac UK has been working closely with the Food Standards Agency.
4.10 However, for many people there is still some confusion
as to what the labelling means. Coeliac UK owns the trademark
of the Crossed Grain symbol which manufacturers can licence to
brand their products to indicate that they are gluten-free. The
Crossed Grain symbol is globally recognised and provides a reassurance
to people with coeliac disease that the product they are buying
is gluten-free and safe to eat.
5. PATIENT AND
CONSUMER ISSUES
The problem for the patient
5.1 The first problem for the patient with coeliac disease
is the lack of knowledge at primary care level. GPs do not always
recognise coeliac disease when confronted with the symptoms. It
is often diagnosed as some other ailment and the patient frequently
finds themselves making repeated visits to their GP as their symptoms
persist. This causes both distress to the patient (as coeliac
disease can be a debilitating illness if left untreated) and a
cost to the health service in terms of the repeated visits to
the GP.
5.2 A survey conducted for Coeliac UK shows that one
third of coeliac patients visit their GP seven or more times before
receiving a correct diagnosis. One fifth were only diagnosed after
everything else had been "ruled out" and two fifths
were not tested for coeliac disease until a year after first visiting
their GP with the symptoms.
Quality of life
5.3 People with coeliac disease can experience bloating,
exhaustion, diarrhoea, anaemia, headaches, weight-loss, mouth
ulcers and skin complaints. It can be a distressing and debilitating
illness.
5.4 In the recent survey of members undertaken by IPSOS
MORI for Coeliac UK 56 per cent considered coeliac disease to
have limited their life to a "fair amount or a great deal".
This was also borne by a survey undertaken by YouGov for Coeliac
UK, which showed that among a representative sample of diagnosed
coeliacs 59 per cent of respondents believed that their social
life suffered as a result of their illness prior to diagnosis.
5.5 Furthermore, in the YouGov survey 68 per cent of
men and 52 per cent of women felt that before diagnosis their
condition had left them too tired or ill to participate in sports
or exercise.
5.6 One fifth believed their sex life suffered before
diagnosis.
How to educate the public and improve quality of information
available to patients and undiagnosed sufferers
5.7 The Government could generally help to raise awareness
of coeliac disease by:
— providing better training and resources for GPs;
— ensuring that healthcare professionals are aware
of recent advances in diagnosis and management; and
— taking measures to encourage better provision
of gluten-free meals in institutions such as schools, hospitals
and care homes.
6. CONCLUSION
6.1 We welcome the Select Committee's decision to investigate
allergies and allergic diseases. We hope that it will broaden
its scope to consider the policy implications for coeliac disease
which is a diet-managed disease where early diagnosis and safe
selection of food are key issues.
6.2 Coeliac disease is comparable to allergies and intolerances
in its impact on the individual, their wider community and the
socio-economic impact.
6.3 With 1 in 100 of the population believed to have
the disease; with currently only 1 in 8 diagnosed; and in view
of the possible serious long-term complications that can arise
from a lack of diagnosis the identification, diagnosis and treatment
of coeliac disease has implications for policy and resources that
we hope the Select Committee will consider.
REFERENCES (NOT
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3 November 2006
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