i

Thames Valley University

London School of Hospitality and Tourism.

A view of the Psychosocial Aspects of

CŒLIAC DISEASE

and

How it impacts the hospitality industry.

Dissertation submitted in partial fulfilment of the degree of

BA (Hons) International Culinary Arts

February 2011

Daniel Ayton Dissertation

(21088478) (TH60070E)

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Abstract

This dissertation is a study into Cœliac Disease, the global growth of diagnosis and market share, the

hospitality industry‟s lack of acknowledgment in ensuring the training of staff to handle gluten free requests.

Cœliac Disease it is not a food allergy or even food intolerance, but it is a lifelong auto-immune disease

causing damage to the gut and other organs; Dermatitis herpetiformis is the skin manifestation of Cœliac

Disease (Sleet, 2008)

. In the UK there are 600,000 people diagnosed with coeliac disease and the undiagnosed

sufferers could increase that number to about five million. Cœliac Disease (CD) is triggered by consuming the

gluten in cereals such as wheat, oats, rye and barley amongst others. These are to be avoided to prevent such

problems as malnutrition, anaemia and bowel damage, (new scientist, 2002).

Left untreated it can increase risk in later

life of further complications such as infertility, osteoporosis and bowel cancer (Rees, 2010)

. Cœliacs can wait an

average of 13 years to be diagnosed (BBC news, 2007)

.

The study established by secondary research that, the Gluten Free market has grown globally over the

last five years growing 29% year on year and since its worth of £370 million in 2004 by 2008 it was worth £1

billion, by 2012 it will be estimated to be worth £1.7 billion (Hughs, 2009).

Products in the UK that could be bought

by those with Cœliac Disease but not labelled that way are estimated to be worth 130 million pounds. (caterer and

hotel keeper, 2003), yet a survey of more than 3,000 „Cœliac UK‟ members showed that well over 1,500 felt that

caterers didn‟t offer clear Gluten-Free options on the menu, whilst 60% didn‟t trust the staff to prepare Gluten

Free food. (caterer and hotel keeper, 2009)

A survey carried out in 2005 by (Karajah et al.) and quoted by the Dublin Institute of Technology (Kelly,

2008) found that 52% of chefs would serve couscous, and 74% would serve soy sauce to a gluten intolerant guest;

this was confirmed in this research with 46.6% serving couscous and 46.6% serving soy sauce; with this in mind

it is hardly surprising to find through primary research that that those who have Cœliac Disease are sceptical

about putting their trust into chefs whilst eating out.

Research established UK chefs appear to know less about Cœliac Disease than the general public Figure

7-1. Educating chefs about a Gluten-Free diet may alleviate the psychosocially restrictions on Cœliacs

(Karajeh, 2005),

with this in mind the question has to be asked, where is the weakness and who should be responsible for the

training needs.

We proceed from the research proposal based on a couple of assumptions.

First and foremost is that the hospitality industry lacks the training, knowledge or resources to

accommodate the needs of the cœliac or gluten intolerant patron.

Second, that there is a considerable social responsibility on the part of restaurants and hotels to

accommodate these needs.

Therefore, the literature review informs a qualitative study proposal intended to demonstrate the areas

of greatest need in terms of spreading awareness of Cœliac within the hospitality industry in the terms of

establishing standard operating procedures in a condition which account for these types of food allergies and in

terms of providing the properly focused training necessary to prepare service staff for the standardisation of

such procedures.

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Acknowledgements

I am grateful to

Mia Touzin for early assistance with the initial research proposal,

Andy Gatley the module leader for raising useful points that make things clear,

Janet Rowson the dissertation supervisor for the feedback that stimulated further areas to research,

and

Professor David Foskett, for the academic stimulus, he encouraged within me.

I would also like to thank

The offices of the Craft Guild of Chefs,

Master Chefs of Great Britain,

World Master Chefs Association,

for their assistance distributing the questionnaires via their members

The office of Coeliac UK, High Wycombe, for the provision of information to help in the research,

especially Jo Archer with whom I had a number of useful discussions and Sarah Sleet the chief

executive for inviting me to judge at the Coeliac chef of the year „Helping to raise awareness‟

Lastly those who forwarded to me their views in the form of Case Studies

Daphne Schimansky - Nicola, James & Zoe Thomas - Wendy Ayton

Ula Filipiuk - Stacy LaRoche - Jae C Jones

The views expressed and any errors are the responsibility of the author alone.

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Contents

Abstract ................................................................................................................................................................. ii

Acknowledgements .............................................................................................................................................. iii

Contents ............................................................................................................................................................... iv

1. Introduction ................................................................................................................................................... 1

1.1 Brief overview of the research ............................................................................................................... 1

1.2 Background information on Cœliac Disease .......................................................................................... 1

1.3 Motivation for research.......................................................................................................................... 1

1.3.1 Why is the understanding Cœliac Disease important? ................................................................... 2

1.4 Context of the research .......................................................................................................................... 3

1.5 Definitions ............................................................................................................................................. 4

1.6 Aim, Objectives & Research Questions ................................................................................................. 5

1.6.1 Aim ................................................................................................................................................ 5

1.6.2 Objectives ...................................................................................................................................... 5

1.6.3 Research questions......................................................................................................................... 5

1.7 Structure of the dissertation ................................................................................................................... 5

2. Literature Review .......................................................................................................................................... 7

2.1 The Ontology of Cœliac Disease (Delineative) ..................................................................................... 8

2.2 Lay persons Epistemology of the Psychosocial Experiences of Cœliac ............................................... 10

2.3 An understanding of Training Needs in the Hospitality Industry (reactive) ......................................... 14

2.3.1 Legal obligations ......................................................................................................................... 17

3. Methodology ............................................................................................................................................... 18

3.1 Theory of Research .............................................................................................................................. 18

3.1.1 Introduction ................................................................................................................................. 18

3.1.2 Methodology ................................................................................................................................ 18

3.1.3 Method......................................................................................................................................... 19

3.1.4 Secondary research ...................................................................................................................... 20

3.2 Primary Data Collection ...................................................................................................................... 20

3.2.1 Pilot Survey ................................................................................................................................. 20

3.2.2 Design of the Instrument .............................................................................................................. 20

3.2.3 Target Population Sample ............................................................................................................ 21

3.2.4 Sampling Technique .................................................................................................................... 22

3.2.5 Sample size .................................................................................................................................. 22

3.2.6 Administering the instrument ...................................................................................................... 22

3.2.7 Analysis ....................................................................................................................................... 22

3.3 Assessment of the Research ................................................................................................................. 23

3.3.1 Reliability .................................................................................................................................... 23

3.3.2 Validity ........................................................................................................................................ 23

3.3.3 Generalise-ability ......................................................................................................................... 23

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3.3.4 Limitations and Further Research ................................................................................................ 24

4. Analysis & discussion of findings ............................................................................................................... 25

4.1 Introduction ......................................................................................................................................... 25

4.2 Analysis of Secondary research ........................................................................................................... 25

4.2.1 Research question 1 ..................................................................................................................... 25

4.2.2 Research question 2 ..................................................................................................................... 26

4.2.3 Research question 3 ..................................................................................................................... 27

4.3 Analysis of Case studies ...................................................................................................................... 27

4.3.1 Qualitative Case studies ............................................................................................................... 31

4.4 Analysis of Primary research ............................................................................................................... 32

4.4.1 Eating out with Coeliac Disease .................................................................................................. 32

4.4.2 A chef‟s insight of food intolerance/allergy guests with a focus on Coeliac Disease. .................. 37

4.4.3 An aspect of the two questionnaires, their agreements and conflicts ........................................... 43

5. Conclusion and recommendations ............................................................................................................... 44

5.1 Government level ................................................................................................................................ 44

5.2 Professional body level ........................................................................................................................ 44

5.3 Hospitality level................................................................................................................................... 45

5.4 Personal level ...................................................................................................................................... 46

5.5 Cœliac level ......................................................................................................................................... 47

6. Bibliography ................................................................................................................................................ 48

7. Appendices .................................................................................................................................................. 50

7.2 Table of figures.................................................................................................................................... 50

7.3 Figures & Tables ................................................................................................................................. 51

7.4 Case Studies ........................................................................................................................................ 65

Case study 1. Ula‟s new born baby with symptoms but not diagnosed .................................................... 65

Case study 2. Daphne diagnosed cœliac in 1976 aged 11 years ............................................................... 66

Case study 3. Nicola diagnosed cœliac December 2002 due to pregnancy .............................................. 67

Case study 4. The children of case study 3 diagnosed cœliac in 2009 ..................................................... 67

Case study 5. The mother of case study 2 and 3 ...................................................................................... 68

Case study 6. The mother and son (now 22) diagnosed in America ........................................................ 69

Case study 7. Jae C Jones ........................................................................................................................ 70

8. Notes ........................................................................................................................................................... 71

8.1 Cœliac Disease useful web pages; ....................................................................................................... 71

8.2 Word count .......................................................................................................................................... 72

8.3 Data and answers collected from the survey. ....................................................................................... 73

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1. Introduction

Biological - Psychosocial aspects of Coeliac Disease

& impacts on the Hospitality Industry

1.1 Brief overview of the research

In 1936 Dr. Willem-Karel Dicke discovered the elimination of wheat from the diet benefited

Cœliac patients, later confirmed in the Second World War (1944-1945), it was noticed when bread

was scarce, the condition of Cœliac improved. There is a significant gap between what is known

medically and what is accommodated on a socio-cultural level. There are both biological and

psychosocial consequences which define the experience of diet, nutrition and eating in general. The

last of these is of consequence to the individual with dietary restrictions, for the practical reasons and

the restrictions they impose; costs, inconvenience and socialisation. The focus of the discussion was

the growing medical awareness of Cœliac but the lacking response in the hospitality industry to

accommodate the Gluten Free diet.

1.2 Background information on Cœliac Disease

There are 600,000 people in the UK (new scientist, 2002)

with many more going undiagnosed;

however, with the exception of speciality shopping, there is little progress in the areas of food service

to accommodate the Gluten Free diet. The result for the Coeliac is that of isolation, dietary discontent

and even social discomfort. To start the research, the consideration is that Cœliac Disease is not only

as a biological condition but also a psycho-social condition. Whilst the biological aspect is gathering

knowledge, it was presumed at the outset of this study that there was limited knowledge in the

hospitality industry of how to accommodate the needs of the Cœliac.

1.3 Motivation for research

The rationale for why this is of interest and worth studying is based from my knowledge of

the subject, and the value of the findings will help to highlight the apparent lack of knowledge of

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Cœliac Disease or complacency within the hospitality industry. As mentioned in the previous text

Cœliacs are made to feel uncomfortable when eating out or they have no faith in the knowledge of

the chefs and waiting staff on duty.

In the 1970‟s little was known about Cœliac Disease with only (1:20,000) diagnosed in total;

now for each year (1:100) are diagnosed in the UK1, (1:200) in Germany, and (1:300) for the whole

of Europe (Hughs, 2009)

. Whilst the biological and consumer markets made inroads between January

2008 and June 20092, the hospitality industry has not kept up. The problem within the industry is the

Gluten Free diet is thought of as “fad food” so; no care is taken in the preparation; also little

knowledge where gluten comes from or which commodities may contain it.

Due to its many overlapping symptoms biologically, full awareness of Cœliac is only

gradually coming to light now. The field of gastroenterology has moved by the evidence connecting

gluten intolerance to the host of symptoms which have often been connected to or diagnosed as

Irritable Bowel Syndrome (IBS). The disease‟s biological characteristics have revealed Cœliac

Disease to be an autoimmune disorder rather than a digestive syndrome. As explored hereafter, it is

the case that only total abstention from foods containing gluten will relieve the symptoms of Cœliac

Disease.

1.3.1 Why is the understanding Cœliac Disease important?

Wheat in the UK is a major part of a nutritional staple diet; the fortification of it makes it a

valuable source of fibre, iron, niacin, vitamins D & B12, thiamine and calcium3. The mal-absorption

that occurs in untreated Cœliac Disease can lead to multiple nutritional deficiencies. The most

common nutritional problems in people with Cœliac Disease include deficiencies of essential fatty

acids, iron, vitamin D, vitamin K, calcium, magnesium, folic acid and zinc. In a Gluten Free diet

needed to aid the digestion of people with Cœliac Disease, the omission of gluten cannot only restrict

1 Some decades ago coeliac was thought of as a paediatric disease. Now however studies suggest that it is 9 adults per 1 child (Giles, 2009). Also the

gender frequency is the same in infancy but in adults the ratio is 2 female to 1 male. This may be due to the nutritional stress of pregnancy

(nutrition.org, 2009) 2 Mintel‟s Global New Products Database found gluten-free to be the 10th most popular claim for new product launches throughout Europe with 3,398

gluten-free products launched into the market. The most claims were made on products introduced in the UK (903), Spain (469), Germany (361) and the

Netherlands (288). 3 Calcium RDA for a Coeliac adult is 1000mg, the general adult population is 700mg (this is due to the mal-absorption or „leaking gut‟, in coeliacs).

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the intake of said nutrients, but, also be a task in itself as gluten is not only found in bread, cakes and

biscuits but also hidden as extenders in soups, sauces, pâtés and sausages; also beer contains the

protein that endangers people with Cœliac Disease.

The hypothesis is that the hospitality industry demonstrates little or no awareness of the

limitations of gluten intolerance; many of those suffering from Cœliac Disease will experience a

social isolation and a psychological consequence of these dietary restrictions within the gluten free

diet.

By its nature the hospitality industry is intended to bring greater comfort and service to the

widest possible array of consumers. However, there remains a dearth of ready and enjoyable options

for the Cœliac sufferer in most non-speciality food contexts which is a detriment to the way that this

specific demographic experiences the hospitalities on the whole. This serves as a compelling

rationale for approaching the subject in the following account as both a biological and psychosocial

issue, with the objective of revealing the connection between the two and consequently the need for

evolution in this area of the hospitality industry.

1.4 Context of the research

The study will evaluate the psychological impact this isolation levies on individuals suffering

from full-blown Cœliac Disease then, delineate the steps which chefs, hospitality firms and front of

house staff must increasingly be prepared to take on the responsibility for this neglected consumer

demographic, worth an estimated £130 million a year (caterer and hotel keeper, 2003)

. Findings will be

supported by available literature and questionnaire data collected from both independent catering

outlets and those attached to a group or chain, intended on yielding greater knowledge of the degree

to which members of the hospitality industry are or are not familiar with their responsibilities in

relation to the needs of Cœliac sufferers.

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1.5 Definitions

ALLERGEN Any substance that causes an allergic reaction.

ALLERGIC DISORDER Malfunction in the immune system that reacts to certain substances in

the environment.

ALLERGIC REACTION The immune systems reaction to a substance the body mistakes as

harmful.

CD - Cœliac Disease („see-lee-yak‟, also spelt Celiac)

Referred to as gluten sensitive enteropathy; sprue; nontropical sprue;

or gluten intolerance. People with the condition will have what is

termed small-bowel villousatrophy.

CHEF CARD A card used to communicate to front and heart of house staff, what a

GF diet entails, and where gluten is found for example oats, barley,

wheat, and rye. An example of what can‟t be eaten (beer, bread etc)

CROSS-CONTAMINATION When one food type comes in contact with another and the proteins

are mixed, causing a reaction to the customer.

CMP Cœliac Management Plan

FOOD ALLERGY Is an immune system response to a food group the body believe to be

harmful so the body creates antibodies (histamine) to attack it.

GF Gluten Free (storage of proteins known to damage the villi in the

small intestine for people with sensitive enteropathy (cœliac/

dermatitis herpetiformis) gluten free diet avoids these proteins)

GFD Gluten Free Diet

GLUTEN INTOLERANCE Also called „celiac sprue‟, caused by the body‟s inability to break

down „gliadin‟ found in wheat, barley, oats and rye.

HACCP Hazard Analysis Critical Control Points

HLA Human Leukocyte Antigen (a collection of heritable genes that raise

the risk of cœliac disease, of which DQ2 and DQ8 are the most

common but not sufficient alone to cause cœliac disease)

HRQoL Health Related Quality of Life

IBS Irritable Bowel Syndrome

UK United Kingdom

NHS National Health Service

GP General Practitioner

Serologic Tests (Cambridge Nutritional Sciences Ltd., 2010)

EMA Immunoglobulin A anti-endomysium antibodies

AGA IgA anti-gliadin antibodies4

DGP Deamidated gliadin peptide antibody5

tTGA IgA anti-tissue transglutaminas (lgA test)6

tTG tissue Transglutaminase

MIA Multiplex immunoassay7

4 Some people do not produce IgA antibodies. IgA deficiency is, in itself, harmless 5 Deamidated gliadin peptide (DGP) antibodies tests developed in 2007 in combination with Tissue transglutaminase (TTG) antibodies and have better

accuracy than native gliadin antibodies. Combination testing identifies patients who are candidates for an intestinal biopsy. Test panels include AGA to

determine if a person's body makes sufficient IgA antibodies for the EMA and TTG results to be reliable. 6 Recent studies have shown that IgA antibodies to tissue Transglutaminase (tTG) an emzine present in the connective tissue of the gut are strongly

associated with the presence of CD. 7 Measures multiple antibodies simultaneously providing reduced turnaround time and cost.

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1.6 Aim, Objectives & Research Questions

1.6.1 Aim

To establish firstly, that there is a feeling of discomfort when our Cœliac guests eat out of

home, also to test the knowledge of chefs within the chosen two sectors.

1.6.2 Objectives

To try to understand the chefs need for knowledge of food allergens focusing on Cœliac and

who should be responsible for the training and monitoring of the special dietary needs of those with

Cœliac disease.

1.6.3 Research questions

1 Why there‟s a psychosocial stigma attached to eating out with Cœliac disease?

2 What is the level of knowledge of Cœliac Disease within the kitchen?

3 Who should be responsible for the training needs within the hospitality industry?

1.7 Structure of the dissertation

The first element of the research is; The Ontology of Cœliac Disease (Delineative) the focus

is on secondary research including medical journals, the web and coeliac society documentation. By

registering as a coeliac I gained access to member only sites like „Coeliac UK‟.

The second element is the (subjective) 2.2 Lay persons Epistemology of the Psychosocial

Experiences of Cœliac; secondary information will be gathered as above including a study done for

the Cœliac UK with reference to the psychosocial aspects where 288 cases were reviewed. The

results were looked at with regards to eating out, and conducting seven case studies, including three

generations of one family. The aim of the questionnaire was to establish from this primary research

whether Cœliacs feel uncomfortable whilst eating out and do they think there is a lack of dietary

knowledge within the hospitality industry?

Through stratified sampling and questioning (reactive) the final element, tests the 2.3 An

understanding of Training Needs in the Hospitality Industry (reactive) both in independent and group

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catering outlets. This could then highlight the reasons to be “a lack of training resources”, or big

businesses lack of conformity due to a lack of interest. The secondary research will be gathered as

before from books, web magazines and web pages.

Finally, the results offer recommendations and conclude as to who is responsible for teaching

dietetics, the college, industry or third parties, the catering outlet or personal pride in self knowledge

for the chosen career.

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2. Literature Review

This review is presented in three sections.

The Ontology of Cœliac Disease (Delineative)

This section will lay out the limited biological features of the disease, present findings on the

permeation of the condition, some of the known causes, the major symptoms and the biological

occurrence which produces dysfunction and the medical consequences of a failure to diagnose or

treat.

2.2 Lay persons Epistemology of the Psychosocial Experiences of Cœliac

This section comprises of the research driven by a focus on the psychosocial aspect of Coeliac

Disease and gluten intolerance. The research will detail the difficulties and limitations of maintaining

a proper gluten-free diet in light of an as yet not fully proliferated public awareness of the condition.

This includes the perceived feelings of isolation and sense of insecurity over the vulnerabilities of

contamination and subsequent illness which one experiences when dining away from home.

An understanding of Training Needs in the Hospitality Industry (reactive)

This presents an understanding of the implications and realities considered in the first two

sections for those in the hospitality and food services industries. This will include a discussion on

which parties should be expected to take responsibility for the dietary limitations of the population

discussed as well as several key imperatives which should drive the strategy of improvement for

accommodating those limitations.

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2.1 The Ontology of Cœliac Disease (Delineative)

Proceeding from the discussion previously about the background of Coeliac Disease, it must

be acknowledged that understanding of the condition is continuing to develop, so demonstrates a

report issued by (Binning, 2010) which tells that, “In 2010 scientists achieve the breakthrough of

understanding the specific elements of gluten, which make the protein toxic to some”. The report

indicates that three peptides have been identified as making up gluten and inducing the physiological

response upon which this research pays part of its focus. According to Binning‟s article, Professor

Bob Anderson said that, “discovery of the toxic peptide components of gluten has been the holy grail

in Coeliac Disease research ever since gluten was identified as its cause 60 years ago”.

Gluten is not strictly an allergen; Coeliac Disease is an autoimmune disease to each type of

protein8; the term "gluten" is, in a sense, a generic term for the storage proteins that are found in

grains that are harmful to persons with Coeliac Disease. It is important to note that the gluten found

in corn and rice does not cause harm to those with Coeliac Disease. (celiac sprue association, 2009).

Related

proteins are also found in Spelt and Kamut as well as others listed Figure 7-2

. In addition to these breads

and grains, gluten is also „hidden‟ in many processed foods such as chips, soy sauce, rice cereal,

ketchup & ice cream; to improve consistency and flavouring reasons. (celiac sprue association, 2009)

The digestion of gluten by a Cœliac causes damage to the „duodenal mucosa‟ and chronic

inflammation to the small intestine leading to the mal-absorption of nutrients; contamination can

come from things as minor as breadcrumbs in a toaster and the effects can last for days. This will be

investigated further in the following text. For those who suffer with Cœliac or some other level of

gluten intolerance, this means that it becomes a matter of great importance to read ingredients in the

market or to ask about the ingredients when dining out.

As Cœliac Disease is discussed further, it will be discovered that it is largely driven by some

such socio-cultural implications; it is of value to identify the potential permeation of the condition

and severity of its consequences. Accordingly, the author reports on the biological implication of

8 Gliadin in wheat; Hordein in barley; Secalin in rye; Avenin in oats; Zein in corn and Oryzenin in rice.

9

Cœliac, which helps to underscore the argument at the centre of this discussion calling for greater

public and culinary industry awareness.

According to, Celiac.com, “1.4% of Americans are impacted by the condition”, and from the

source Mintel, it is “1% in the UK”, with symptoms occurring across a wide spectrum. Celiac.com,

reports that; “Symptoms of Coeliac Disease can range from the classic features such as diarrhoea,

weight loss and malnutrition, to latent symptoms such as isolated nutrient deficiencies but no

gastrointestinal symptoms.”As we will discuss hereafter, this can make Cœliac difficult to detect or

diagnose, this may account for a failure to diagnose and impose proper dietary restrictions.

The cause of toxicity to those with Coeliac Disease is associated with the failure of the body

to absorb the nutrients from foods containing gluten9. The presence of the peptides in gluten causes

the immune system to attack the villi10

of the small intestine Figure 7-3. This renders the body incapable

of gaining the proper nutrients from the metabolic process while simultaneously intervening with the

body‟s ability to digest properly, the resulting symptoms can be varied and severe.

Another imperative is to improve the way that restaurant and other dining establishments

prepare for those with food allergies. It should be understood that the Cœliac condition does not

alone report to the scope of the problem. Beyond the permeation of the Cœliac Disease discussed

here, there are less severe incarnations of the same intolerances. Absent even the Cœliac diagnosis

with a high risk of long-term health maladies, many are vulnerable to a toxicity of gluten.

Many appear to be sensitive to gluten without having full-blown Coeliac Disease. For them,

symptoms may be less typical, involving depression, mental fogginess, mood swings and behaviour

changes. Much less is known about this group. Most particularly, increasing evidence of a connection

between gluten intolerance and the triggering of certain psychological symptoms helps to

demonstrate why diagnosis has been confounded (Beck, 2010).

9 When coeliacs are exposed to gluten, both the innate and adaptive immune systems react. The innate is triggered early by the cytokines; these cause

little damage to the intestinal mucosa. Interleukin-15 is responsible for the early migration of T-lymphocytes in to the intraepithelial compartment from

the lamina propria of the coeliac. At the same time there is up-regulation of the DQ2 & DQ8 molecules on the antigen-presenting cells. On the adaptive

side of the disease tissue transglutaminase deamidates glutamine to glutamic acid. This increases the negative charge on the gluten peptides and binds

them to the DQ2 & DQ8, this triggers the T and B-cell response of the humoral antibodies and cytokins; which flattens the villi and clogs the crypts

leading to the mal-absorption of nutrients.

10 Tiny finger-like projections that enable absorption.

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2.2 Lay persons Epistemology of the Psychosocial Experiences of Cœliac

At present there is a dearth of studies about the psychosocial effects of cœliac disease in the

UK population, but, the question remains, why the Cœliacs are quiet about this disease rather than

raising the awareness for example like diabetes, asthma and epilepsy.“At the diagnosis of Cœliac

Disease, the start of a gluten free diet can cause enormous changes in the lives of sufferers and the

dietary restrictions can be hard to accept. Those with the condition can feel restricted, isolated and

at times anxious about their food intake” (A. Sverker, 2005)

. “Adults with Cœliac Disease often report a

poor health related quality of life” (HRQoL) (Hallert, 2003).

The centre of this research is to consider that

Cœliac is not just a biological concern to those who suffer from it, as a dietary restriction which has

widespread implications to one‟s lifestyle.

The point of this discussion should be the understanding that eating, dining and snacking are

all highly socialised activities. Indeed, a great deal of tradition, social interaction, holiday festivity,

dating, business meeting, special occasion celebration and even mourning may occur directly over

the sharing of a meal. The Gluten Free diet has defined limitations with respect to what can be eaten,

how it must be prepared and what ingredients must be avoided. These occasions can be a source of

great distress as well as a context within which the psychosocial dimensions of Cœliac emerge. Also

emerging are certain emotional consequences of maintaining a Gluten-Free diet.

As this section of the literature review illustrates, the practical realities of this dietary change

have a direct bearing on the ability of sufferers to enjoy the many social engagements where eating is

a primary focus, the challenges of shopping for groceries for those with Cœliac are considerable and

characterised by limited options and high costs.

Many supermarkets now have Gluten-Free, „free from‟ alternatives in substantial supply.

Moreover, even in the context of speciality food stores, Gluten Free options constitute a particularly

small selection for the Cœliac shopper. A learning curve will be necessary in maintaining the Cœliac

diet that will likely cause some distress, discontent and even sadness as the individual surrenders

many comfort foods that have brought sensory pleasure.

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A major part of this process is centred on learning the products containing gluten and learning

which substitutes can help process of preparing a satisfactory diet when at home, rather than relying

on pre-packaged or heavily processed store-bought foods. However, as an added benefit, making this

adjustment is likely to reduce the intake of many of the other negative by-products such high fat,

sodium or preservative contents that are frequently found in pre-packaged or processed foods.

Cœliacs will find that they must make significant adjustments in food preparation and meal

strategies, which involves learning a dearth of new recipes and a wide array of permutations with

particularly flexible wheat substitutes such as rice, corn and buckwheat flour products.

The Cœliac lifestyle takes on yet another dimension altogether when the sufferer is not in

control of their environment. The greatest challenges to the psychosocial experience for the Cœliac

occur when dining out, when travelling or when eating at somebody else‟s house. While awareness is

slowly growing over the permeation of the Cœliac condition, it remains a highly specialised and

restrictive diet that presents the afflicted with no small amount of difficulty when dining out.

First and foremost amongst these difficulties is the limited degree of familiarity or training

possessed by kitchen and service staff in the vast majority of restaurants. „Money talks‟ and

restaurants need money, so if they can get a little bit more by saying “we're a gluten free restaurant”

or “we offer gluten free food” then you can understand why they may try to jump on the gluten free

bandwagon like supermarkets11

, but without the knowledge to support this claim.

For many Cœliacs dining out can represent the single greatest threat to personal comfort, to

social engagement and to cultural inclusion. This is associated with a sense of distress and isolation

which is built on several factors beyond the subject‟s control; it is common for the Cœliac to find that

a restaurant only offer few items which do not contain gluten in their basic ingredients.

Consequences also to the emotional and social well-being of the coeliac sufferer, who may

fear going into restaurants or even friends‟ households for meals based on the likelihood of some

toxicity to the meal. This also points to a major obstacle to treatment success and dietary adherence

11 Only one third of „free from‟ products bought in a supermarket are bought by those with coeliac disease.

12

on the part of those who suffer from or are recently diagnosed with Cœliac. The social cost of

maintaining these dietary restrictions is seen as being too great for many who may, therefore, resist

the abstention which is required to achieve full and lasting health.

Here, we find that one of the more pressing psychosocial consequences of the pervading lack

of awareness of coeliac is the unwillingness of many sufferers to concede the necessary steps to

achieve well-being. According to (A. de Rosa, 2004),

“Patients who received the diagnosis in adulthood

had a lower score for nonconformist, a greater tendency to pretend to be sociable and higher levels

of psycho-physiological reactiveness, relative to the comparison subjects. The results suggest that

Cœliac Disease may be associated with changes in personality that may interfere with patients'

adaptation to living with a chronic disease.” This suggests that for those who have engaged a certain

set of dietary habits for their whole lives, the psychological reliance upon certain eating patterns over

one‟s life-cycle cannot be overlooked. The adjustment to the gluten-free lifestyle is likely to carry

personal and internal challenges that not all individuals may be willing to make. Moreover, for those

who are willing to make these changes, there will often be emotional consequences relating to the

psychological connection made to certain eating habit. As de Rosa et al, points out, “Adherence to

gluten-free diet, restores the integrity of the intestinal mucosa, is essential for individuals with

Cœliac Disease, and must be maintained over the patient's lifetime”.

So far, however, little is known about the relationship between dietetic restriction and

psychological disturbances. Depression and lower quality of life have been reported in individuals

with Cœliac Disease and have been attributed to patients' perceptions of the restricted diet.

When in the restaurant context, many of these feelings may be intensified by the feeling that

there is little available to compensate for their dietary restrictions. Therefore, the absence of

accountability amongst hospitality personnel for meeting the needs of the cœliac sufferer, in turn will

bring greater focus to the negative emotional perceptions relating to the cœliacs limitations. The

depression which is affiliated with the restrictive diet can lead Cœliacs to choose non-compliance

instead.

13

In a study on children who have been diagnosed with Cœliac Disease, by (J. C. Chauhan,

2010), reports that for many, “Compliance can be a socially loaded decision”. In spite of the health

consequences of this decision, the article indicates that, “Noncompliance to a Gluten Free dietary

regimen is seen in 18% of cases. Dietary noncompliance is more common in the adolescent age

group, in joint families and those who have more siblings”. Ergo the biological distress related to

Coeliac may figure less into the experiential difficulty of the condition than the psychological

response manifested in the subject.

In the research of (S.D. Dorn, 2010), poorer health was associated with poorer coping, longer

symptom duration, lower education. More physician visits were associated with abnormal tTG

levels12

, and milder Marsh classification

Figure 7-4. Greater pain scores were seen in those with higher psychological distress and greater

weight loss. This means that the Cœliac sufferer is likely to experience adverse health consequences

as a result of the psychosocial realities connected to dining out or otherwise lacking control over the

environment and food sources during an eating occasion. Often, these realities and their distress are

magnified by the poor training and lack of knowledge within the food services and hospitality

industries.

12 Recent studies have shown that lgA antibodies to tissue Transglutaminase (t-TG), an enzyme present in the connective tissue of the gut, also

associated with coeliac disease.

14

2.3 An understanding of Training Needs in the Hospitality Industry (reactive)

Cœliacs will often find that waiting staff do not truly understand the nature of the food allergy

and may lack the understanding to truly convey to the kitchen staff the dietary restrictions applying to

a patron, resulting in most dining-out occasions being characterised by a scant selection and a feeling

of dissatisfaction during and subsequent to the meal. This is yet further magnified by the concern and

caution which must be channelled in relation to the possibility of cross-contamination. For many

Cœliac sufferers, there is an inherent danger that wheat or flour particles can become mixed with

gluten free items and may produce severe reactions for those with the Cœliac Disease.

Research of more than 3,000 Cœliacs‟ found that nearly one third of respondents never eat

out, or eat out less than once every other month, nearly a quarter said they have travelled for an hour

or longer in order to find a restaurant that provides a Gluten-Free meal; however, 30% of the

respondents stated that they would eat out once a week if they could be confident of a safe Gluten-

Free menu option. The survey also highlighted that there is a potential £100million market amongst

those diagnosed with the condition and the friends and family they eat out with. (Bracken, 2010)

(D'Ambrosio, 2009), found that amongst kitchens and waiting staff there was, “a significant

lack of awareness in the area of gluten intolerance”. How often do they truly understand what

'Gluten Free' really means to a Cœliac? Another survey by the „Food Standards Agency‟ suggested

that, “60% of customers find restaurant menus misleading or lacking in information but did not like

to ask for appearing “fussy”. Cœliacs need to know if the chefs can provide suitable food and the

staff are sufficiently trained to pass the requests to the kitchens. In principle, this should not be

difficult, but in reality, it depends very much on the quality and training of the staff involved.

The catering industry employs approximately 500,000 (caterer and hotelkeeper, 2005)

staff in the UK.

With the abolishment of student grants many students work in their spare time, many within the

hospitality industry Figure 7-5, this is backed up by the age grouping, with many young people working

in the hospitality industry the view of the job is that it is “just a job” so treated as a temporary

measure whilst studying before starting their chosen career; these students therefore lack in proper

15

training in the catering industry. (Kelliher & Perrett, 2000) agreed that “front of house staffs tend to

be transient by nature” this is boosted with the „cheaper influx of eastern Europeans coming in to the

market. Within the UK catering industry there are no legal obligations to gain a job related

qualification; this leads to just a 40% of qualified chefs Figure 7-6, there is also no obligation within this

sector of training dietetics or allergen risk.

In many ways, the lack of adjustment and accommodation seen in the food service and

hospitality industries has magnified the negative psychological consequences and the isolating

sociological consequences of cœliac disease and its inherent dietary restrictions. Therefore, proper

training, awareness, preparation and resource availability must all be considered as essential areas

where improvements are to be made.

(D'Ambrosio, 2009), reports on the challenges which are incumbent upon kitchen staff, chefs

and restaurants that wish to truly cater to the needs of the gluten intolerant. According to his research,

“There is a need for restaurants and their staff to change their way of thinking about dietary

restrictions”, too often, these restrictions are treated as preferences rather than serious medical needs.

The Catey‟s winner of 2009, „The True Lovers Knot‟, in Blandford, Dorset is testimony to

this mantra by rising to the challenge of adopting a Cœliac friendly menu. The True Lovers Knot

offers a full Coeliac menu cooked in separate fryers and the pub sells about 35-45 Coeliac meals a

week. Guests have been known to make a 200 mile round trip for the fish and chips. One of the

judges, Arnold Fewell commented “my daughter is Cœliac so I know how difficult it is to eat out as a

family”.

(Allergy UK) predict that “within 10 years up to 40% of the population will either have a

food intolerance or food allergy”. Simply put that is 40% of all major food items a chef puts on a

menu a guest won‟t be able to eat. However, (Caterer & hotelkeeper, 2005), note that “understanding

how to prepare dishes that are gluten free or offering menu options that do not contain wheat will not

alone be sufficient to prevent complications for the Cœliac sufferer dining out”. This is due to the

fact most kitchens lack the precautionary measures needed to protect from the contamination that can

16

occur where a great deal of foodstuff is used to this end that for many of the most severely afflicted

coeliac sufferers, any failures on this level can have serious consequences.

Michael Savett, the father of a child with Cœliac and the editor of a „gluten-free culinary

weblog‟, indicates of restaurant kitchens that „the most important concern is whether the staff is

aware of what Cœliac disease is,‟ he says. “They must understand the importance of separate pots

and pans to prevent cross-contamination, for true Coeliacs having their Gluten Free bread toasted in

the same toaster could lead to days of illness.”

According to (D'Ambrosio, 2009) this highlights “the greatest challenge to waiting staff and

chefs, who are also in a position of direct responsibility to the health and well-being of their guests”.

It is incumbent upon the chef as well as the restaurant management to ensure that the foods which

come out of the kitchen are in no way harmful or unhealthy for their guests. Indeed, reputation and

quality stand primarily on these features as well as on the culinary prowess demonstrated by the food.

Therefore, we can see that a failure to protect diners against food allergens such as gluten „when the

intolerance has been stated‟ is a dereliction of this duty. Moreover, we can see that a failure to

provide a suitable array of options to the cœliac diner is akin to a failure to meet a certain standard of

dining excellence. Therefore, several major elements of training which are implied are those whom

instruct staff with great detail on how to avoid cross-contamination, how to maintain separate

instruments for the preparation of gluten and how to detect contamination so as to prevent serving a

potentially harmful meal. These properties of the kitchen must be predicated on the creation of a full

and comprehensive Gluten-Free menu. This is a particularly important element of helping to address

the psychosocial consequences of gluten intolerance, insofar as there is an imperative to design a

Gluten-Free menu which is well thought out, which demonstrates a high level of culinary excellence

and which prevents the Coeliac from feeling that he or she lacks any real or trustworthy dining

options.

17

2.3.1 Legal obligations

Emphasis has been placed to this point in the research on the emerging body of knowledge in

the medical community regarding the symptoms, pathology and prevalence of Cœliac. As a positive

pre-emptory condition to this research project, the United Kingdom passed a piece of draft legislation

Figure 7-13,that has been laid before parliament and will come in to force on the first of January 2012

„foodstuffs suitable for people intolerant to gluten‟. This will control the labelling of food, if the

gluten content is more than 20mg per 1kg (1:50,000) to the final customer and if it is proved that a

chef knowingly fed a food item to a consumer with more than this amount they can face prosecution.

This Regulation aligns the European Commission legislation with the recently agreed „Codex‟

international standard for foods targeted at people intolerant to gluten thereby facilitating

international trade.

However, this legislation does not extend to the restaurant menu so food allergic/intolerant

diners will not receive sufficient information to ensure their safety when eating out. Consequently

these individuals must relinquish control of their special dietary needs to chefs who may not be

familiar with food allergy and intolerance13

.

At the root of these training initiatives must also be a more informed awareness amongst

kitchen and waiting staff not only to allergy awareness but also gluten intolerance and the

implications of Cœliac Disease. This means that training should include a consideration of the many

food products which contain gluten or which are likely to trigger a health risk to the coeliac

individual. It also means that personnel should be made more fully aware of the negative health

consequences which result from the toxicity of gluten, with recognition of the potential severity of

the condition and identification of the responsibilities which are therefore imposed upon those in the

hospitality and food service industries.

13

The only protection they have is in the knowledge that the food safety act 1990 and general food law regulations 178/2002 2005, states that all

information of allergens must be made available, or if a customer has a reaction and this information was not made available, if found guilty could face

a £20,000 fine or 6 months in prison. Also under the consumer protection act 1987 - civil liability, this can result in a £1,000,000 fine.

18

3. Methodology

3.1 Theory of Research

Two sets of quantitative questions were given out; the first set was a collection of ten

questions aimed at registered Cœliacs Figure 7-7, to establish their Psycho-social feeling towards eating

out of the home environment. Also a collection of qualitative case studies were studied also to

establish the feelings of loss even mourning at the loss of gluten in the diet. The second set of

questions were aimed at the catering industry Figure 7-9 in order to establish the degree of understanding

and to come to a conclusion as to whom should be responsible for the teaching of the needs of a

Cœliac diet.

3.1.1 Introduction

The aim of the research as proposed in this dissertation was to answer the questions raised by

the title and illustrated in the literature review. Both primary and secondary research methods were

carried out to fulfil the criteria intended to yield comprehensive findings concerning the awareness

and preparation of the needs of cœliac or gluten intolerant guests after establishing their comfort in

dining away from the home and putting the trust of their dining experience in a stranger‟s hand.

3.1.2 Methodology

For this study and to assist in the triangulation of the results, it was considered to use both

quantitative research methods in the form of the traditional „Likert Scale‟ survey and qualitative in

the form of case studies.

Quantitative methods of research are described as a study resulting from numerical data, and

competitive information brought together from independent studies. Positive results can be captured

from these independent sets of quantitative data; (McMillan, 2010) highlights that, “quantitative data

can never be without bias due to the demographics of the study area”.

19

For the above reason triangulation with some qualitative data collection in the form of case

studies, independently collected, giving a layperson‟s overview of the psychosocial views of

diagnosis and acceptance of the cœliac disease, (McMillan, 2010, p. 123) describes this data as

“descriptive textual information” however, due to this “data being hard to quantify as human

feelings give bias”, (Walliman, 2009)

, it is hoped that by analysing these two principles together a truer

analytical study can be formed.

3.1.3 Method

Due to the nature of the study and time restrictions imposed for this study the author chose to

ask closed questions for both sides of the study (professional and patron) in the form of the „Likert

scale‟ where respondents would be asked to respond to a statement (McMillan&Weyers, 2007)

.

These were, after a discussion with the module leader published over the web via

(http://www.surveymonkey.com/) giving a greater overview in a short time. By providing

respondents with a series of statements concerning the affirmative level of awareness, preparations

and availability to attend to the needs of the gluten free diet.

Respondents would be asked to indicate their level of agreement with each statement. For

chefs; titled, „a chef‟s insight of food intolerant/allergy guests with a focus on Coeliac‟ Figure 7-10,Figure

7-11,Figure

7-12 a separate questionnaire „Eating out with Cœliac Disease‟ Figure 7-8, will be given to

patrons on a gluten free diet, this will contain questions relating to how they feel emotionally whilst

eating out socially and will establish the psychosocial aspects whilst cœliacs are eating out.

This in conjunction with the case studies will establish the feelings of the cœliac, how they

are „normally made to feel and why they feel uncomfortable whilst out and dining socially.

The research process would also be channelled through a questionnaire to be distributed to

chefs at various outlets within independent units and those within a chain. This will give the view

from the sides of the chefs and the patrons.

20

At an early stage in the dissertation the author wanted to interview the kitchen team; however,

due to the nature of chefs and the nature of business, it was felt that a true reflection of what happens

in the food preparation area would not be forthcoming.

3.1.4 Secondary research

The search strategies for the secondary research was initially from books referencing the

cœliac disease, gluten free diets, and the psychosocial world we live in and then the internet by using

search engines for the same key words as listed above. (Walliman, 2009, p. 51), describes this

secondary resource as “literature of the subject”. In addition to this dearth of information an

opportunity arose to judge for the cœliac chef of the year competition14

. Key questions were also

asked there. Within the Cœliac Society a research project has been taking place over the past year

and, though this has not been published yet, it will be used as a reference point to triangulate the

results found in this reference.

3.2 Primary Data Collection

3.2.1 Pilot Survey

There was a need to send it out as a pilot survey to a small local group of cœliacs, as

(Walliman, 2009, p. 282) suggested that “it would help anticipate any problems of comprehension”.

This was the case there were too many questions Figure 7-7, they were open and some asked two

questions in one. The questionnaire was simplified, formatted and collected via „survey monkey‟15

a

web application that allows a greater arena for data collection.

3.2.2 Design of the Instrument

With the thought of the primary research being quantitative it must be remembered that

“statistical significance should not be confused with…… the sense of importance or value”.

Questionnaires are good tools to collect quantitative data but may also give qualitative results.

14 Coeliac Chef of the year http://www.youtube.com/watch?v=qcBWMN9mz-M

15 http://www.surveymonkey.com/

21

(McMillan, 2010, p. 111). It is with this in mind that the following questions were asked in the questionnaire

„Eating out with cœliac disease‟

Questions 1-4 & 9 For assessment of the eating habits of those with cœliac disease.

Questions 6-8 Gave more personal information in aspects of the data base.

Question 3 Gave information for those with coeliac disease to rank who they thought

should be responsible for the training of chefs in the hospitality arena with

regards to cœliac disease.

Question 2 & 3 Gave information to assess how often the cœliac „eats out‟ and „in the home‟.

Question 4 & 9 Illustrates how the cœliac who took part coped with dining away from the

home, this was then cross tabulated with question 8, to give an indication as to

whether the confidence rises over time of cœliac diagnosis.

3.2.3 Target Population Sample

As described by (Walliman, 2009) “population is the number of incidences that form the base

of study”, for this study, whilst collecting the data anonymity was assured, in-order to encourage

honest answers.

The discussion synthesises the findings gained from the literature review to predict the likely

findings to be produced by the survey. The scores produced by each survey can be used to conduct

statistical analysis concerned in making gluten free accommodations. Individual questions address

areas specific, to menu analysis and the kitchen relating to gluten intolerance. It is predicted the

resource availability will represent the greatest challenge in meeting the practical needs of the coeliac

given the inherent costs and changes which are necessitated to provide separate gluten-free platters,

utensils, prep areas and cooking appliances.

22

3.2.4 Sampling Technique

Random selections of Cœliac Society‟s of the world were chosen via the internet. This was

thought to give a non-bias opinion in regards to the true psychosocial aspects of cœliac disease. The

chef questionnaire was sampled through catering associations16

for this same reason.

3.2.5 Sample size

In total 146 Professional questionnaires (chef‟s insight of food intolerance/allergy guests with

a focus on coeliac) were sent out, and 101 completed.

In total 53 patron questionnaires (eating out with Coeliac Disease) were sent out, and 53

completed.

Due to the legal constraints of data protection from the Coeliac Uk, there were only limited

response rates from those with cœliac disease. However seven case studies were also collected.

3.2.6 Administering the instrument

The data was collected, as a whole with the use of the internet; emails were received for the

case studies, and the questionnaires were sent out as random samples; this gave a clearer and none

biased view spread over the nation, however, this was limited within the constraints of time, being a

novice researcher and not having a team of data collectors.

3.2.7 Analysis

The data was collected and analysed thematically.

Assessing the cœliacs‟ feelings when dining out of the home.

Assessing the chefs‟ knowledge of „special diets‟.

Then by cross tabulating the data, it can be seen whom each section of study thinks should be

responsible for the training of „special dietary needs‟.

16

Craft Guild of Chefs, Master Chefs of Great Britain, World Master Chefs Association

23

In the areas of awareness and menu readiness illustrated a cultural lack of willingness

to improve all aspects which must first be overcome.

The surveys revealed a modest awareness at best and no awareness at worst of the

needs of the gluten intolerant or the long-term health implications of a failure to

accommodate these needs.

With a specific focus on gluten intolerance, there should be an effort to bring more

consideration to the seriousness of food allergies within the hospitality industry.

3.3 Assessment of the Research

3.3.1 Reliability

Despite the shortcomings the research is good because, it agreed with (when triangulated)

cœliac researchers. The methods used for data collection were without bias and could be repeatable

over a greater area and timescale giving similar results but with greater accuracy.

3.3.2 Validity

In order to gauge the variables are stable and accurate as (Easterby-Smith. M, 2008), suggests

and “validate the findings”. Triangulation is done with dual methods of research tested against the

Cœliac Society; the results highlights that little has been done to acknowledge the psychosocial well-

being or needs of the cœliac sufferer. This is inconsistent both with the mission of such service

industries and with the manner in which other consumer demographics of choice (vegan, vegetarian,

kosher and halal) are served. This was cross-referenced with the Coeliac Uk and resulted with a

similar conclusion.

3.3.3 Generalise-ability

The nature of data collected by quantitative methods, though by no means conclusive,

indicates: - modest awareness and menu readiness, a cultural lack of willingness to improve

awareness of the needs of the gluten intolerant or the health implications of a failure to accommodate

24

these needs; with a specific focus on gluten intolerance, consideration should be given to the

seriousness of food allergies within the hospitality industry.

3.3.4 Limitations and Further Research

This dissertation is not conclusive due to the limits of being a part time novice researcher with

no team of fellow researchers. Due to 33% of the „chefs‟ quitting the questionnaire before answering

all the questions, with more time I would consider conducting interviews, and reformatting the

questionnaire so all the questions are on one scrolling page as it was for the Coeliacs.

However, this study forms a good base for further investigation; there is a selection for further

reading in the notes section.

25

4. Analysis & discussion of findings

4.1 Introduction

This is an appropriate point at which to reflect on the central findings of the literature review.

Among them, a finding of fundamental importance is acknowledgement that Cœliac Disease and

Gluten Intolerance is a serious health issue which is known to affect a significant population and is

believed to be a larger population than known. Cœliac Disease is supplemented by yet a greater

degree from mild to severe gluten intolerance. This justifies the call for an expansion of awareness

and knowledge on the subject so that individuals who may suffer unknowingly from this condition

can take the steps necessary to gain a diagnosis and make lifestyle and dietary changes accordingly.

4.2 Analysis of Secondary research

4.2.1 Research question 1

Why there’s a psychosocial stigma attached to eating out with Cœliac disease?

Given the potential severity of reactions resulting from gluten consumption for the cœliac

sufferer, the lack of awareness and proliferation of diagnosis should be considered a public health

matter. The potential spectrum of reactions ranging from digestive discomfort and malnutrition to

schizophrenia and terminal stomach cancer denotes that there is a need to reach out to and inform

those who might unknowingly suffer any number of symptoms due to the continued consumption of

gluten-based foods. These aspects of the research have also found that there are additional layers to

the coeliac condition which are implicated by the inherently social and cultural implications of food

and dining. Because of the limitations experienced by those with Cœliac Disease or Gluten

Intolerance, many dining experiences can produce a sense of discontent, distress and isolation. A

combination of fear that food-service insensitivity may lead to contamination and sickness; a sense

that a restaurant‟s menu offers few if any satisfying dining options; a feeling that others view this

allergy as a consequence of simply being a picky eater; and the general experience that most service

26

staff are inherently unaccommodating all illuminate some aspect of the psychosocial conditions

relating to cœliac disease.

This denotes a cultural context in which the building body of knowledge on cœliac within

medical and scientific circles has not yet fully proliferated into the hospitality industry.

Consequently, those struggling to make the dietary and lifestyle changes necessary to live with

cœliac will typically find that the socialisation of dining in the public arena has become obstructed.

This builds the argument upon which projections the survey responses may be predicted. We

presume that survey responses will demonstrate most hospitality staff to be limited in their

knowledge and un-willingness to accommodating the needs of the cœliac sufferer.

4.2.2 Research question 2

What is the level of knowledge of Cœliac disease within the kitchen?

As predicted the surveys concluded that little has been done to acknowledge the psychosocial

well-being or needs of the cœliac sufferer. This is inconsistent both with the mission of such service

industries and with the manner in which other consumer demographics (of choice), are treated; for

example vegetarian 2% of the market, followed by kosher and halal. (1%) of UK residents are

diagnosed as having cœliac disease (many more undiagnosed), therefore, in a 400 roomed hotel,

averaging 600 sleepers a night, 500 of those will have breakfast. That‟s around 1,825 coeliacs a year

for breakfast at £18 a head which equates to £32,850, yet this market is ignored. However, the 2% of

the market share that are vegetarian, have on average 10% choice on the menu for a voluntary diet

that chefs are taught in college yet, no training or menu items are given to the 1% or 1825 diners with

an involuntary eating disorder. I highlight this not only as a training need but also a missed

opportunity for good customer service and lost revenue. Ultimately, the research conducted through

the survey is expected to confirm that the negative experiences of cœliac sufferers and the gluten

intolerant are biologically bound when consuming gluten and socially bound when attempting to

avoid gluten consumption.

27

4.2.3 Research question 3

Who should be responsible for the training needs within the hospitality industry?

This research found that head chefs throughout the country think their kitchens are well

equipped to provide safe meals for the food intolerant guests; however the evidence is that there is a

lack of understanding within their teams in relation to food allergies and intolerances; this poses a

high risk to that diner. This suggests a lack of training in this subject. As a conclusion the hospitality

industry must work in partnership to address the issues highlighted in this research and to promote

the education of food allergies and intolerances and increase consumer safety.

The responsibility for improvement falls upon an intercession of the personnel in many

different public contexts. The public health elements of this discussion reveal the role of public

officials and health agencies in altering policy to require greater accommodation of food allergies in

public dining establishments. This may also include ensuring the resources are available to help

kitchens gain the knowledge and physical facilities to make these changes. There can be no doubt

that this level of staff involvement will allow the more effective provision of suitable food, Those

surveyed generally felt that the responsibility for such training lays with the Department of

Environmental Health and Doctors in general practice should provide the information, especially as

they are now so concerned about the prevention of illness.

4.3 Analysis of Case studies

The main points coming from the case studies is indeed the lack of knowledge and support

even before diagnosis by doctors and the way they need to be a little more understanding when

talking to a mother, for example, about their child; However, this may be due to the time constraints

imposed by the N.H.S; as quoted;

“It‟s a lifetime disease but nothing to worry about.”

“I was feeling down, and wanted to shout.”

“I‟m his mother and felt helpless.”

“Lots of diagnostic tests all of that were scary.”

28

After all the word „disease‟ is a scary word that can conjure up many images of suffering;

And some time a child can suffer a long time before a mother is told what is happening;

Although diagnosis can be hard as there is a plethora of symptoms;

There is also a growing belief among gluten intolerant sufferers that for a wide variety of

illnesses (including Cœliac Disease, autism, attention deficit disorder, irritable bowel syndrome and

multiple sclerosis) that a Gluten-Free diet will provide relief - although science and doctors' advice

may not back this up (Hughs, 2009)

.

Then at diagnosis by the dietetics;

If the coeliac sufferers don‟t receive the dietetic support at the beginning;

With such a large life changing experience it is not really surprising when it comes to dining

out of home that it is hard to adapt;

“The result of the biopsy confirmed she was a cœliac but we were horrified to be told she had a

disease!”

“No apologies to us or our G.P. for disagreeing for nearly four years!”Error! Bookmark not defined.

“I was diagnosed with irritable bowel syndrome.”

“Unlike most coeliacs I didn‟t have any symptoms.”

“We do wonder, however, if her bowel was damaged following a persistent tummy bug she picked up

in Tunisia when she was 16 years old? She had it for a couple of months and after the first pathology results

she was „clear‟ on bugs but was still suffering from diarrhoea. She was 37 when diagnosed.”

“I remember being told by a dietician soon after being diagnosed that I could always have a jacket

potato when I showed concerns about eating out. That was not the sort of eating out I had in mind and

generally have a good experience when eating out.”

“So why is the condition a disease and why do cœliacs have to pay fully for their prescriptions when

diabetics, epileptics etc. have free prescriptions for everything, even for things not related to their

condition?”

“One thing that stood out in our minds was the fact we had been told dairy produce was excellent

for her and the advertisement of the day was “Ski – the full of fitness food”, unfortunately it contained

wheat flour in those days!”

29

Those case studies forwarded to me were from people who had a reasonable competence in

the kitchen so seem to have been able to cope better;

But some regress after diagnosis, as there are items they love and miss;

There should be training for the school cooks so the children don‟t feel segregated;

However not all are as competent at cooking, and there are many hidden dangers in the form

of additives and preservative in ready meals;

This also affects friends and families of those with coeliac disease;

“In secondary school I felt very different; packed lunches were not that common and I was the only

coeliac and nobody had ever heard of it. Today food sensitivities are almost a fashion accessory.”

“I also have no choice for school dinners which is generally dried up plain chicken or fish.”

“I use to make a million excuses as to why I couldn't go. Now I'm just honest and up front about it.

I really appreciate the invite and the idea of not having to cook sounds great! However, due to all my

allergies, it's really impossible and unfair to you to have to try to make me a safe meal.”

“Contaminating additives were not used so much.”

“I was really annoyed as I could not have fish and chips or chocolate éclairs.”

“I do now miss having beer, (I stopped having the occasional one about ten years ago), and there

are now so many real ales around which my husband raves about.”

“My parents were good as the meals tended to be naturally gluten-free as they were home cooked.

They adapted meals which were not.”

“Because Mum is a Coeliac our meals at home are generally gluten free, but my school meals are

not therefore I was eating a lot more gluten.”

“Lucky for us, I knew my way around the kitchen and didn't mind always cooking/baking for every

event he was involved in. I don't know how we'd have managed if that were not the case!”

“Perhaps it's more difficult for young people, or shy people. A good sense of self-confidence goes a

long way when dealing with any type of special dietary concerns, but that is my opinion!”

30

Whereas case 7 seems to have regressed through fear of cross contamination;

With support at diagnosis the psychosocial aspects of eating out may not be so daunting;

However the questionnaires indicate some coeliacs come to terms with the disease, and

through correct management it is no longer a worry;

“Many feel bad that we can't have and really want us to feel included, but seldom do they fully

realize how limited we are and how overwhelmingly stressful being included can be for us! I love my

friends, but when it comes to food, I'd rather be home and alone in my kitchen! I very seldom eat a meal

with my family even because I try to minimize cross contamination as much as possible, and it's really

hard to do that if someone is making toast or dripping mayo etc. Plus I get sick at just the smell of food, so

we just take turns in the kitchen. Dinner parties just are not an option for me!”

“I've often said that celiac disease is in part a social disease. One of the things that transcends

social status, generations, religion, culture, politics and any other social-science categories for classifying

groups, is that we humans tend to connect with each other through food - over the breaking of bread”.

“Think of all your favourite memories - the moments shared with others that you cherish - I'll bet

"dollars to donuts" that food was involved at some level. Family holidays & traditions, cultural &

religious celebrations, gatherings of friends and colleagues, all tend, at least to some degree; focus on the

food shared together (which is why so many business meetings are catered)”

“Food is a common language we all share and perhaps the importance of that interaction isn't

realized until a person feels isolated from others due to dietary restriction - especially if that restriction is

a recent occurrence. Feelings of isolation because the "common language" connection was severed can

have some very disturbing consequences that last years.”

“Being a coeliac today is easy for me in some ways as I live in Germany”

“Coeliac condition, (disease), is not well known in Germany and I do not receive any special

coeliac care.”

“Eating out is easier as potato starch is the thickener which is commonly used.”

31

Even embracing it and looking at it as part of a personality or even a friend;

Over time more needs to be done to make this disease better understood;

And restaurants need to embrace the lost revenue;

4.3.1 Qualitative Case studies

Case study 1. Ula‟s new born baby with symptoms but not diagnosed

Case study 2. Daphne diagnosed cœliac in 1976 aged 11 years

Case study 3. Nicola diagnosed cœliac December 2002 due to pregnancy

Case study 4. The children of case study 3 diagnosed cœliac in 2009

Case study 5. The mother of case study 2 and 3

Case study 6. The mother and son (now 22) diagnosed in America

Case study 7. Jae C Jones

“On holidays we don't have too much trouble as we normally go on cruises and they have special

dietary sections. I feel that most restaurants have a very limited pudding section for coeliacs normally all

we can have is ice cream, jelly or fruit”

“Yes, I would be a coeliac but it must be understood that it is not a fad, it‟s not an option but a

medical condition that probably will not kill me directly – it‟s a complex immune disease that is not fully

understood.”

“If I had to choose, I would prefer not to be a coeliac but I think it is part of my personality – it‟s me

as an individual, it makes me different and sometimes it even makes me special.”

“I would prefer not to be a Coeliac but it is not so bad because I feel better and I know what things I

can eat now.”

32

4.4 Analysis of Primary research

4.4.1 Eating out with Coeliac Disease

The returned questionnaire „eating out with Coeliac Disease‟ made for interesting reading,

and highlighted that; 77.3% of coeliacs who expressed their feelings in the survey either disagree or

strongly disagree, that they feel at ease whilst eating out; and nobody felt at ease eating out.

Figure 4-1 Results - I'm at ease eating out with Coeliac Disease.

This is the prior belief, with 79.3% eating out once a month or less, triangulating the primary

quantitative data results of this study, against a survey taken by Coeliac Uk in 200817

when the figure

for the same periods was 62%, note (only 9.4% eating out weekly).

17

Statistics taken from a survey of over 3,000 Coeliac UK members, December 2008.

35.8% : 41.5% : 11.3% : 11.3% : 0.0%

33

Figure 4-2 Results - I have the confidence to eat out.

However, in the Coeliac UK survey of 2008, when asked how often they would eat out with

more safe gluten-free choices their figures nearly reversed with 74% expressing they would eat out

once every two weeks. The demographic in this survey however was not large enough for this much

accurate detail, with only 53 respondents, and of those, 60.4% were aged over 40.

Figure 4-3 Results - What is your age group.

According to (Adair, 2009) when he argued against Maslow‟s theory of hierarchy, he stated

that „Maslow didn‟t consider individuality‟; in this example the over forties, Therefore it is believed

they are less comfortable eating out, as dining out of the home is only a recent luxury, combined with

9.4% : 11.3% : 26.4% : 18.9% : 34.0%

1.9% : 8.8% : 17% : 17% : 39.6% : 20.8%

34

the fact that they majority 34% have only being diagnosed under 2 years and 60.4% being diagnosed

under 5 years and so are not full at ease with the confidence of the diet that comes with experience,

also backed up by the case study 2.

Figure 4-4 Results - How many years have you been diagnosed with Coeliac Disease.

The Coeliac sufferers overcome this anxiety to eat out with confidence by either contacting

the restaurant beforehand 50% as a first option, or speaking to the chef on the night 32.1% as a

second option. However when the first and second choices are combined, the coeliac guest still

wishes to contact the restaurant first 56.6% but would rather speak to a member of the waiting staff

49.1% than the chef 35.9%

Figure 4-5 Results - When eating in a restaurant I would.

34% : 26.4% : 13.2% : 9.4% : 7.5% : 9.4%

50.9%:0%: 18.9%:3.8%: 3.8%:22.6% - 5.7% :5.7%:30.2%:9.4%:32.1%:17%

35

What is perhaps a little worrying is that nearly 4% of the respondents indicated that they

would rather make themselves ill by eating gluten than make a fuss.

Figure 4-6 Results - when eating out, I would eat gluten, rather than make a fuss.

The answer to lowering this percentage would be by making the chefs more knowledgeable

and accessible to the guests, this in return will lower the 77.3% of Coeliacs that feel uncomfortable

when eating out. With 69.7% of Coeliacs cooking for themselves or their partners cooking for them

at home every day, the need to instil this confidence is apparent.

Figure 4-7 Results - On average how often do you eat at home.

84.9% : 5.7% : 5.7% : 3.8% : 0.0%

3.8%: 0% : 11.5% : 13.5%:34% - 21.4%:7.1%:14.3%:21.4%:35.7%

36

With a high percentage of coeliacs being women 83%, if the hospitality industry can

encourage them out, they will bring their partners and friends with them.

Figure 4-8 Results - What is your Gender.

The final question remains „who should be responsible for the training in the knowledge of

Coeliac and other dietary needs in the hospitality industry?

Figure 4-9 Results - Who do Coeliacs think should be responsible for training.

: 17% : 83% :

%

34

30

.2

11

.3

1.9

22

.6

11

.3

32

.1

20

.8

7.5

28

.3

13

.2

22

.6

22

.6

17

24

.6

15

.1

11

.3

32

.1

26

.4

15

.1

26

.4

3.8

13

.2

47

.2

9.4

37

According to the information gathered from those who eat out with coeliac disease; by

ranking them in a list of five choices the results were as follows;

This same question was proposed to the chefs also, where the results differ slightly, and again

when both results are cross tabulated, this is discussed further in the text.

4.4.2 A chef’s insight of food intolerance/allergy guests with a focus on Coeliac Disease.

In the study of the 146 catering establishments contacted within the hospitality arena 89

questionnaires titled „a chefs insight in to food intolerance/allergy guests with a focus on Coeliac‟

were returned completed in their entirety that is a response rate of 64.97%

The establishments ranged from independent and unit‟s part of a group this range was an even

mix of 52.1 % part of a group and 49.9% independently run.

Figure 4-10 Results - What best describes where you work.

First choice is the individual should be responsible for their own training at 34%,

Second choice the restaurant owner at 32.1% majority,

Third choice is the professional association with 24.6 majority,

Fourth choice is the catering college with 32.1% majority,

Fifth choice is the local council with 47.2% majority,

38

Of these respondents they were predominantly in a senior position within their unit, and aged

between thirty and forty years old. Given more time the mode of data collection would be changed to

include colleges this would even the demographic.

Figure 4-11 Results - What is your age group.

Figure 4-12 Results - What best describes your job in the kitchen.

By incorporating the colleges in to this study it would help to quantify where to training need

would be; as the results collected a total of 33.8% of respondents were only qualified up to level 3 (A

level) in the national qualification table the other 65.2% were qualified up to level 7 (masters degree),

with the majority 41.2% had qualifications to level 4 (diploma / foundation degree).

39

Figure 4-13 Results - What is your level of catering qualification.

Completed questionnaires were received from Group Executive Chefs 10.3%, Food and

Beverage Managers 16.4%, Head Chefs 37.7%, and Sous Chefs 13.7%. This may have given a

slightly weighted result, in favour of coeliac knowledge, and how well the kitchens are equipped to

cater for the coeliac diet; 69.2% believe that their kitchen is equipped to meet the special dietary

needs of the food allergic/intolerant guest.

.

Figure 4-14 Results - Is your kitchen equipped for allergy/food intolerant guests.

But only 35% had a separate area in the kitchen, or separate utensils to prevent any cross

contamination; this is despite 68.4% agreeing that allergy control is part of their Hazard Analysis and

Critical Control Points manual.

40

Figure 4-15 Results - allergen control in your HACCP.

Figure 4-16 Results - Is there a separate area in the kitchen.

However, 51.5% could recall training in the control of food allergens or specific training in

relation to food allergy/intolerance during the course of their careers. It must be remembered

however the highly qualified demographic of this survey, with more time the interest would be to see

if this training is being filtered down to the junior members of the brigade, and the lack of trust in the

brigade by the coeliac is unfounded.

Figure 4-17 Results - Has there been allergy awareness training.

41

This was lightly tested in the questionnaire by incorporating eleven closed questions asking

the respondents to identify commodities/ingredients that should be avoided when preparing safe

meals for gluten intolerant consumers. The findings suggest a lack of knowledge of basic food

ingredients and commodities.

Figure 4-18 Results - What products are Gluten Free

As mentioned this highlights even the senior managers that answered this questionnaire are

not sure of gluten containing commodities; in fact only eight out of the 146 respondents less than 6%

answered this question correctly therefore the incorrect information is being passed down to the

junior members of the team, this doesn‟t include the service staff, who face the guests, and have the

duty to the guests.

The same final question was asked to the professional, as was asked to the Coeliacs; “who do

you think should be responsible for the training of the knowledge of Coeliac and other „special‟

diets?” The data was quite different for the two sets of respondents, the same question was asked to

both to enable the results to be cross referenced.

46.1% of chefs respondents believed „couscous‟ to be gluten free.

46.1% of chefs‟ respondents believed „soy sauce‟ to be gluten free.

25.8% believed beer can be served to a coeliac.

25.9% would serve regular bread to a coeliac.

11.2% believed flour can be served to a coeliac.

42

Figure 4-19 Results - Who do Chefs think should be responsible for training.

According to the information gathered from the chef; by ranking them in a list of five choices

the results were as follows;

%

17

.8

31

.7

20

.8

4

25

.7

21

.8

30

.7

21

.8

14

.8

10

.9

15

.9

16

.8

31

.7

17

.8

17

.8

18

.8

13

.9

16

.8

31

.7

18

.8

25

.7

6.9

8.9

31

.7

26

.8

First choice is the restaurant should be responsible for training the staff at 31.7%, whereas

the coeliacs‟ first choice was the chef to be responsible for their own training 34%.

Second choice for the chefs was again the restaurant owner at 30.7% majority; this is in

concurrence with the Coeliacs with a 32.1%.

Third choice for the chefs was the college with a 31.7%; whereas the Coeliacs‟ opted for

the professional associations being their third choice with 24.6% majority.

Fourth choice is the local council offices to be responsible in allergen training 31.7%; the

Coeliacs chose the catering college with 32.1% as their choice.

Fifth choice again for the chef is the local council with 31.7% majority; this is in

concurrence with the Coeliacs with a 47.2%.

43

4.4.3 An aspect of the two questionnaires, their agreements and conflicts

As can be seen the results of the questionnaire, above were combined, the average of both

combined created a new set of results as follows;

Figure 4-20 Chart - Who should be responsible for training (chefs and coeliacs combined).

Coeliac thoughts for training

responsibility

Chef thoughts for training

responsibility

Combined average

thoughts for training

responsibility

First choice The Individual chefs Restaurant they work The local council

Second choice Restaurant they work Restaurant they work The restaurant

Third choice A professional association The Colleges The Colleges

Fourth choice The Colleges The Local Council The Individual chefs

Fifth choice The Local Council The Local Council Catering associations

The combined set of results produce a more accurate view as to who should be responsible for

this training, an understanding that the local government can work with the councils to ensure safety

for the coeliacs and all other allergens I believe is the correct result; due to the policy makers

introducing the new policy „food stuff suitable for people intolerant to gluten (England) regulations

2009‟ Figure 7-13, due to come in to force in January 2012; and the council who already inspect catering

outlets for all other HACCP related incidents within catering outlets.

44

5. Conclusion and recommendations

The understanding in the medical and scientific communities with regards to the Cœliac

condition is coming into prominence. However, at this time awareness needs to be placed upon the

hospitality industry to accommodate the needs of those with gluten-based allergies. At the time, more

and more people are eating out of home. Thus, the catering industry is going to encounter an

increasing demand for special meals to cater for those with allergies. As a resolution to this research,

the conclusion is that there is indeed a psychosocial consequence to the demands placed upon the

gluten intolerant and that this consequence can be emotionally taxing and obstructive to the

maintenance of a vitally necessary diet. The findings here claim that policy and public perception

must be altered in order to lessen the burden of lifestyle demands and health concerns imposed upon

the cœliac, this burden is magnified by the sense of isolation produced by the ignorance of others; the

key problem that emerged was the system of communication. Customers‟ place their orders with

waiting or bar staff, it is vital that the requests are passed accurately to the kitchens.

5.1 Government level

With the dangers relating to gluten intake by those with intolerance, it has been increasingly

the role of government to create regulations protecting the public from poorly labelled or

contaminated foods. Some experts are calling for universal screening due to the high prevalence of

undiagnosed silent cœliac disease in western populations. Increasing evidence of the adverse

consequences relating to diagnostic delays and easier screenings such as tTG, make routine screening

of children aged two to five years generic as it is with measles, mumps, rubella, and polio.

5.2 Professional body level

Psychosocial conflicts produce a call for some level of intervention where industry awareness

is concerned. Professional culinary associations, food allergy and hospitality conferences,

competitions and other industry forums should be considered to making inroads toward this

intervention. Hospitality professionals must be compelled to recognise both the ethical and economic

45

priorities which are implied by the findings; there is an opportunity not just to take part in addressing

a real and growing public health issue but also to serve the needs of yet a broader clientele.

According to (datamonitor, 2010), „The global gluten-free market is set to grow by £800m

over the next five years to be worth over £2.96bn‟. The UK's gluten-free market will be worth the

most in Europe at £250m – growing at a rate second only to Germany.

In Cœliac UK‟s survey 30% of respondents said they would eat out once a week if they could

be confident of finding a safe gluten-free menu option, adding up to an untapped £100 million market

amongst coeliacs, their friends and family. The charity‟s chief executive, Sarah Sleet, says in a news

release: “People with coeliac disease want to eat out more often and are ready and willing to spend

their money, if only they felt more confident about gluten-free provision.” (Locke, 2010).

Indeed, this imperative should ultimately be underscored that it is the primary mission of the

hospitality industry to accommodate the comfort, convenience and needs of its customers.

5.3 Hospitality level

When cœliacs dine away from home, they must rely on the food service staff to provide them

with the correct information regards to the dishes contents, so as to assess the risks involved that may

affect their choice.

The only safe way forward is by education, co-operation and teamwork through the

departments and service staff. This starts with the head chef and restaurant manager taking ownership

in leading the team of chefs and waiters; all must be familiar with the issues and service of guests

with coeliac disease as well as other allergies, (Armstrong, 1999) states „leadership as relative to the

task‟ so they must also make apparent the benefit of this knowledge will become apparent as when

the cœliac family finds a place to eat that they like and trust. They are likely to become loyal

customers and may encourage others to do the same. Cœliac and Gluten Intolerance affects around

6,000,000 people in the UK, the patronage of their families is greater.

46

The food and beverage team should create a Cœliac Management Plan (CMP). Consideration

needs to be paid to the following points; who will speak with the guests regarding dietary needs, who

is responsible for checking the ingredients and prevention of cross-contamination?

The manager should be introduced to the cœliac guest with a folder of best practices in place,

this should include allergen sheets Figure 7-14 of all dishes served in the outlet.

Service staff should have food allergy training as part of their induction and periodic updates.

The manager should encourage the idea that it‟s okay to say “sorry I don‟t know I will check”. And

work closely with the chef to ensure all ingredient lists are checked and kept up to date.

5.4 Personal level

An allergy list is not simply a list of ingredients the „guest doesn‟t like‟; they are to inform the

chef and heart of house staff of any intolerances. Be careful of the garnishes this could spoil a good

dish, or serving the guest a roll to go with the meal, even if the waiter has sliced bread for a previous

guest, the crumbs on their hands will cause cross contamination. Cross contamination is when one

food comes in contact with another food and their proteins mix, an example of this is a gluten free

product being grilled where burger baps have been toasted, water used for pasta should not be used

for vegetables. It is important to understand that products labelled „wheat free‟ are not the same as

those labelled „gluten free‟

the guest may feel embarrassed to reveal their medical condition, and would prefer to see if

they can find something on the menu they think may be suitable, this can be elevated by noting on

the menu that „the chef will be happy to discuss any dietary needs with the guest‟.

47

5.5 Cœliac level

Select the restaurant carefully, and do a little research before going there.

Speak up; in addition to telling the waiter, try to inform the manager and chef in advance.

Order simply prepared food and avoid sauces, or mystery ingredients.

If a mistake is made, keep the plate, stopping it being re-plated without the gluten product.

Thank them in advance and also after for the care they have taken.

Carry a chef card Figure 7-15; a brief description as to the allergy and list of items the allergen

is found in, these can be downloaded from the internet in different languages.

The difficulty is exacerbated by the lack of training undertaken by chefs. Basic courses up to

level 3 generally doesn‟t cover dietetics and has little or no regard for allergies or, gastric diseases.

Food intolerances are now so widespread that chefs would be foolish to ignore such a growing

market. It is of my opinion that the obligation for this rests with the proprietors of food outlets, who

clearly need to gain a greater understanding of the issues involved before training their staff.

However, they do not seem prepared to pay for this training.

48

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50

7. Appendices

7.2 Table of figures

Figure 4-1 Results - I'm at ease eating out with Coeliac Disease. ..................................................................... 32

Figure 4-2 Results - I have the confidence to eat out. ....................................................................................... 33

Figure 4-3 Results - What is your age group. .................................................................................................... 33

Figure 4-4 Results - How many years have you been diagnosed with Coeliac Disease. ................................... 34

Figure 4-5 Results - When eating in a restaurant I would. ................................................................................ 34

Figure 4-6 Results - when eating out, I would eat gluten, rather than make a fuss............................................ 35

Figure 4-7 Results - On average how often do you eat at home. ....................................................................... 35

Figure 4-8 Results - What is your Gender. ........................................................................................................ 36

Figure 4-9 Results - Who do Coeliacs think should be responsible for training. ............................................... 36

Figure 4-10 Results - What best describes where you work.............................................................................. 37

Figure 4-11 Results - What is your age group. .................................................................................................. 38

Figure 4-12 Results - What best describes your job in the kitchen.................................................................... 38

Figure 4-13 Results - What is your level of catering qualification. ................................................................... 39

Figure 4-14 Results - Is your kitchen equipped for allergy/food intolerant guests. ........................................... 39

Figure 4-15 Results - allergen control in your HACCP. ................................................................................... 40

Figure 4-16 Results - Is there a separate area in the kitchen. ............................................................................ 40

Figure 4-17 Results - Has there been allergy awareness training. ..................................................................... 40

Figure 4-18 Results - What products are Gluten Free ....................................................................................... 41

Figure 4-19 Results - Who do Chefs think should be responsible for training. ................................................. 42

Figure 4-20 Chart - Who should be responsible for training (chefs and coeliacs combined). ........................... 43

Figure 7-1 Chefs Knowledge of CD (gastroenterology unit, Royal Hallamshire Hospital). ............................. 51

Figure 7-2 Not consistent with gluten at this time (celiac sprue association, 2009)

............................................................ 51

Figure 7-3 Villi in the Small Intestine ............................................................................................................... 52

Figure 7-4 (Marsh&Oberhuber, 2010) Modified marsh classification .............................................................. 52

Figure 7-5 Percentage of workers employed in restaurants by age ................................................................... 53

Figure 7-6 Comparative qualifications .............................................................................................................. 53

Figure 7-7 First Draft - Questionnaire Living with Cœliac Disease Study ........................................................ 56

Figure 7-8 Questionnaire for Coeliacs, „Eating out with Coeliac Disease‟ ....................................................... 57

Figure 7-9 Draft - Questionnaire to test a chefs knowledge of cœliac............................................................... 58

Figure 7-10 Questionnaire for Chefs, (part one) ............................................................................................... 59

Figure 7-11Questionnaire for Chefs, (part two) ................................................................................................ 60

Figure 7-12 Questionnaire for Chefs, (part three) ............................................................................................. 61

Figure 7-13 The Foodstuffs Suitable for People Intolerant to Gluten (England) Regulations 2009. ................. 62

Figure 7-14 Allergen and HACCP data sheet. .................................................................................................. 63

Figure 7-15 Chef Cards, as free downloads. ..................................................................................................... 64

Figure 8-1 Data collected from 'Chefs insight of Food intolerant/allergy guests with a focus on Coeliac. ....... 73

51

7.3 Figures & Tables

319 coeliac patients [mean age 53.8 years, 65.8% female],

513 members of the public [49.2 years, 62.6% female]

322 chefs [37.6 years, 15.2% female] were interviewed.

Chefs were less likely to have heard of CD when compared to the public (17.1% versus 44.2%)

Coeliac patients ate less frequently at a friend's house than the general public.

Coeliac patients ate less frequently from take-away establishments.

However, coeliac patients' ate as frequently in restaurants.

Figure 7-1 Chefs Knowledge of CD (gastroenterology unit, Royal Hallamshire Hospital).

Not consistent with gluten at this time

BARLEY [Hordeum vulgare] The offending storage protein [prolamin] is known as hordein. BARLEY is present in many

commercial products as malt, flavorings, colorings, and/or flavor enhancers. May be a part of hydrolyzed plant protein [HPP] or hydrolyzed vegetable protein [HVP].

BULGUR (WHEAT, burghul) A quick-cooking form of whole WHEAT that has been cleaned, parboiled, dried, crushed or ground

into particles and sifted into distinct sizes.

COUSCOUS (WHEAT) Granular semolina dish of steamed, crushed, cooked grain. DINKLE (WHEAT, spelt) Common name for spelt.

DURUM [Triticum dicoccum] (WHEAT) Variety of the Triticums; has high gluten content and is mainly used for pasta.

EINKORN [Triticum monoccum] (WHEAT) Primitive small-grained WHEAT of Europe and Asia. Einkorn WHEAT represented on

some labels as non-glutinous, low-gluten or listed as a corn or maize product. EMMER [Triticum dicoccum] (WHEAT) Another name for durum WHEAT. Yields glutinous flour used in pastas

FARINA® (WHEAT) A hot WHEAT cereal.

FU (WHEAT) Dried form of gluten, typically from WHEAT if made in Asian countries. (Should not be confused with tofu, which is

made from soy.) GLIADIN Naturally occurring simple proteins (gluten peptides) found in the gluten of WHEAT.

GLUTEN Storage protein of WHEAT. Used as an umbrella term, although technically not correct, to include storage proteins of

BARLEY, RYE, and OATS.

GLUTEN PEPTIDES Term used to describe smaller units of proteins from WHEAT, BARLEY, RYE, and OATS. GLUTENIN Naturally occurring simple proteins (gluten peptides) found in the gluten of WHEAT.

GRAHAM flour (WHEAT) Graham flours are WHEAT flours, not to be confused with gram flour from chickpeas.

KAMUT [Triticum polinicum] (WHEAT) Kernels are 2-3 times larger than WHEAT.

MATZA, MATZO, MATZAH (WHEAT) Traditional Jewish unleavened bread made from WHEAT. MIR. [Mironovskaya spp.] (WHEAT and RYE cross) Many variations.

RYE [Secale cereale] The offending storage protein (prolamin) is secalin. Used as flour for baking bread. Grain may be fermented to

produce alcoholic beverages or industrial alcohol.

SEITAN (WHEAT, wheat meat) Made from WHEAT gluten. Used in vegetarian and Asian dishes. SEMOLINA (WHEAT) Coarsely ground durum WHEAT. Mainly used for pasta.

SPELT [Triticum spelta] (WHEAT, dinkle, farro, dinkel) Ancient cereal grain with a mellow nutty flavor.

TRITICALE [Triticosecale sp.] (WHEAT, RYE) Hybrid cross of WHEAT and RYE. WHEAT [Triticum aestivum, Triticum vulgare, Triticum dicoccum, Triticum monococcum] World's largest cereal grass crop.

Offending prolamins are glutenin and gliadin. All WHEAT and WHEAT products contain varying amounts of these prolamins. Used

whole, cracked, ground into flour, or processed into oil. There are many varieties of WHEAT, the triticums.

WHEAT berry The kernel of WHEAT. WHEAT germ The embryo of WHEAT.

WHEAT germ oil Derived from WHEAT. Gluten level will vary by product.

WHEAT grass Leaves of WHEAT. There is no research available on the gluten content.

WHEAT gluten The natural protein derived from WHEAT. Also, powdered form of seitan.

WHEAT nut Any Triticum WHEAT, soaked or boiled and then dried to be sold as "WHEAT nuts".

Figure 7-2 Not consistent with gluten at this time (celiac sprue association, 2009)

52

Figure 7-3 Villi in the Small Intestine

Figure 7-4 (Marsh&Oberhuber, 2010) Modified marsh classification

53

AGE %

16-19 28

20-24 17

25-29 11

30-39 22

40-49 12

50-59 8

60-64 1

65 > 1

Source: Hospitality Training Foundation

Figure 7-5 Percentage of workers employed in restaurants by age

QUALIFICATION ALL

INDUSTRIES

CATERING

INDUSTRIES CHEFS

RESTAURANT

MANAGERS

Graduate 17.9% 5.5% 1.9% -

Apprenticeship 9.2% 5.4% 11.6% 11.3%

Trade qualification - - 27% -

GCSE or less 46.4% 63.3% 55.2% 49.8%

Source: adapted from the Hospitality Training Foundation Figure 7-6 Comparative qualifications

Draft - Questionnaire for Coeliacs

We are interested in how well you cope with your Coeliac Disease (CD). Please indicate how much you agree or disagree with the following statements by ticking one box for how you feel about each statement.

Strongly Disagree

Disagree Neither agree nor disagree

Agree Strongly Agree

Question 1

It is difficult for me to find effective solutions for problems that occur with managing my CD

Question 2

I find efforts to change things I don’t like about my Coeliac Disease are ineffective.

Question 3

I handle myself well with respect to my Coeliac Disease.

Question 4

I am able to manage things related to my Coeliac Disease as well as most other people.

Question 5

I succeed in the projects I undertake to manage my Coeliac Disease.

Question 6

Typically, my plans for managing my Coeliac Disease don’t work out well.

Question 7

No matter how hard I try, managing my Coeliac Disease doesn’t turn out the way I would like.

Question 8

I’m generally able to accomplish my goals with respect to managing my Coeliac Disease.

54

We are interested in your own personal views of how you now see your Coeliac Disease (CD). Please indicate how much you agree or disagree with the following statements about your CD by ticking the appropriate box.

VIEWS ABOUT YOUR CD Strongly Disagree

Disagree Neither agree nor disagree

Agree Strongly Agree

Question 9 My CD will last a short time.

Question 10

My CD is likely to be permanent rather than temporary.

Question 11 My CD will last for a long time.

Question 12 My CD will pass quickly.

Question 13 I expect to have this CD for the rest of my life.

Question 14 My CD is a serious condition.

Question 15 My CD has major consequences on my life.

Question 16 My CD does not have much effect on my life.

Question 17 My CD strongly affects the way others see me.

Question 18 My CD has serious financial consequences.

Question 19

My CD causes difficulties for those who are close to me.

Question 20

There is a lot which I can do to control my symptoms.

Question 21

What I do can determine whether my CD gets better or worse.

Question 22 The course of my CD depends on me.

Question 23 Nothing I do will affect my CD.

Question 24 I have the power to influence my CD.

Question 25

My actions will have no affect on the outcome of my CD.

Question 26 My CD will improve in time.

Question 27

There is very little that can be done to improve my CD.

Question 28 My diet will be effective in curing my CD.

Question 29

The negative effects of my CD can be prevented (avoided) by my diet.

Question 30 My diet can control my CD.

Question 31 There is nothing that can help my condition.

Question 32 The symptoms of my condition are puzzling to me.

Question 33 My CD is a mystery to me.

Question 34 I don’t understand my CD.

Question 35 My CD doesn’t make any sense to me.

Question 36

I have a clear picture or understanding of my condition.

Question 37

The symptoms of my CD change a great deal from day to day.

Question 38 My symptoms come and go in cycles.

Question 39 My CD is very unpredictable.

Question 40

I go through cycles in which my CD gets better and worse.

Question 41 I get depressed when I think about my CD.

Question 42 When I think about my CD I get upset.

Question 43 My CD makes me feel angry.

Question 44 My CD does not worry me.

Question 45 Having this CD makes me feel anxious.

Question 46 My CD makes me feel afraid.

55

We are interested in what you consider may have been the cause of your CD. As people are very different, there is no correct answer for this question. We are most interested in your own views about the factors that caused your CD rather than what others including doctors or family may have suggested to you. Below is a list of possible causes for your CD. Please indicate how much you agree or disagree that they were causes for you by ticking the appropriate box.

CAUSES OF MY COELIAC DISEASE Strongly Disagree

Disagree Neither agree nor disagree

Agree Strongly Agree

Question 47 Stress or worry.

Question 48 Hereditary - it runs in my family.

Question 49 A Germ or virus.

Question 50 Child birth

Question 51 Puberty

Question 52 Diet or eating habits.

Question 53 Chance or bad luck.

Question 54 Poor medical care in my past.

Question 55 Pollution in the environment.

Question 56 My own behaviour.

Question 57

My mental attitude e.g. thinking about life negatively.

Question 58 Family problems or worries.

Question 59 Overwork.

Question 60

My emotional state e.g. feeling down, lonely, anxious, empty.

Question 61 Ageing.

Question 62 Alcohol.

Question 63 Smoking.

Question 64 Accident or injury.

Question 65 My personality.

Question 66 Altered immunity.

56

We are interested in what your thoughts if any when away from home and are reliant on others cooking for you. As people are very different, there is no correct answer for this question. We are most interested in your own views about the factors that will allow you to be relaxed and ejoy the meal experiance please indicate how much you agree or disagree by ticking the appropriate box.

EATING OUT Strongly Disagree

Disagree Neither agree nor disagree

Agree Strongly Agree

Question 67

I am at ease and can spot items I can eat on the menu

Question 68

I have confidence the chefs are trained in special dietary needs

Question 69

I know the chefs have the knowledge to provide the food I can eat

Question 70

The service staff always know what coeliac disease is

Question 71

I have the confidence to eat out at lease once a week.

Question 72 I like try new foods

Question 73 I eat in a new place each time I go out.

Question 74

Information is always available with regards to allergens

Question 75 The chefs know what a gluten free diet is

Question 76

I feel confident the chefs don't take ingredients for granted e.g.. Soy sauce

Question 77

If I were to provide my own pasta, it will be cooked in the same water as non coeliac.

Question 78

My toast will be cooked in the same toasted at breakfast

Question 79

I have no issues with eating gluten, rather than make a fuss.

Question 80 I am happy to eat out once a month

Question 81

Chefs should be trained to know about coeliac and other allergies

Question 82

Service staff should be trained to know about coeliac and other allergies

Question 83 The colleges should do this training

Question 84 Local government should pay for this training

Question 85 Catering associations should pay for this training

Question 86 The catering outlet should pay for this training

Question 87

I don't mind who pays for it, but training needs to be done

Question 88

I’m happy to eat out and take a chance even if there is no training

Question 89

Question 90

Figure 7-7 First Draft - Questionnaire Living with Cœliac Disease Study

57

Figure 7-8 Questionnaire for Coeliacs, ‘Eating out with Coeliac Disease’

Draft - Questionnaire for chefs

58

Disagree

Somewhat

Disagree Neutral

Somewhat

Agree Agree

1 Our kitchen has separate dishes and utensils to cater for those with gluten allergies.

2 Our kitchen has ovens, stovetops and prep facilities which are not contaminated with gluten.

3 Our kitchen staff takes all the necessary steps and precautions needed to avoid cross-

4 Our kitchen staff understands what is meant by coeliac disease and are aware of its health consequences.

5

Members of our kitchen staff understand the properties of food which can be dangerous for the coeliac

6 Our menu contains a comprehensive set of alternative selections for those with coeliac

7 Gluten free menu options are enjoyable and reflective of the standards otherwise kept by our menu.

8 We have sufficient alternative food sources to provide extensive options for the coeliac patron.

9 We have a wide, working knowledge of flour alternatives to wheat-flour based foods.

10 New kitchen staff is provided with training on how to address food allergies such as gluten intolerance.

11 GIVE A BRIEF DESCRIPTION OF WHAT YOU THINK COELIAC DISEASE IS?

12 DESCRIBE WHAT YOU THINK A GLUTEN FREE DIET IS ?

13 LIST 10 PRODUCTS WITHOUT GLUTEN

would you give a coeliac the following? NO

I WOULD

RISK IT

I DON'T

KNOW

YES WITH

MODIFIC

ATION

YES

14 MEAT COOKED ON A GRILL WHERE A BURGER BUN HAS BEEN TOASTED?

15 ONIONS CHOPPED ON A WHITE CHOPPING BOARD?

16 RICE COOKED IN WATER PREVIOUSLY USED FOR PASTA?

17 GLUTEN FREE BREAD COOKED IN THE TOASTER?

18 FRIES COOKED IN THE SAME FRYER AS SAMOSAS?

19 A COELIAC CAN EAT A CAESAR SALAD

20 MAYONNAISE

21 MINESTRONE SOUP

22 FRIED NOODLES

23 PORRIDGE FOR BREAKFAST

24 WHEATBIX FOR BREAKFAST

25 BURCHER MUESLI FOR BREAKFAST

26 CHIPS

27 HOLLANDAISE

28 MASHED POTATO

29 INSTANT MASHED POTATO

30 PESTO

31 COUS COUS

32 RISOTTO

33 RICE

34 BHAJI

35 CORN FLOUR

36 BUCK WHEAT

37 BEEF BURGER

SELF COLLEGE WORK

GOVERN

MENT

ASSOCI

ATION

Who should be responsible for teaching dietetics

Figure 7-9 Draft - Questionnaire to test a chefs knowledge of cœliac.

59

Figure 7-10 Questionnaire for Chefs, (part one)

60

Figure 7-11Questionnaire for Chefs, (part two)

61

Figure 7-12 Questionnaire for Chefs, (part three)

62

DRAFT FOR CONSULTATION Annex C S T A T U T O R Y I N S T R U M E N T S

2009 No. FOOD, ENGLAND

The Foodstuffs Suitable for People Intolerant to Gluten (England) Regulations 2009

Made - - - - 2009 Laid before Parliament 2009

Coming into force - - 1 January 2012

THE SCHEDULE Regulations 2(1) and 3(1)

Specified Provisions of Commission Regulation (EC) No. 41/2009 Provision of the Commission

Regulation Subject-matter

Article 3(1), as read with Article 3(5) Requirement that foodstuffs for people intolerant to Gluten—

(a) consisting of or containing one or more ingredients made from wheat, rye, barley, oats or their crossbred varieties which have been especially processed to reduce gluten;

(b) containing both ingredients which substitute wheat, rye, barley, oats or their crossbred varieties and ingredients made from wheat, rye, barley, oats or their crossbred varieties which have been especially processed to reduce gluten, must not contain a level of gluten exceeding 100mg/kg in the food as sold to the final consumer. Article 3(2), as read with Article 3(5) Requirement that the labelling, advertising and presentation of foodstuffs for people intolerant to gluten—

(a) consisting of or containing one or more ingredients made from wheat, rye, barley, oats or their crossbred varieties which have been especially processed to reduce gluten

(b) containing both ingredients which substitute wheat, rye, barley, oats or their crossbred varieties and ingredients made from wheat, rye, barley, oats or their crossbred varieties which have been especially processed to reduce gluten, must bear the term “very low gluten”, although the labelling, advertising and presentation of those foodstuffs may nevertheless bear the term “gluten-free” if the gluten content does not exceed 20 mg/kg in the food as sold to the final consumer. Article 3(3), as read with Article 3(5) Requirement that oats contained in foodstuffs for people intolerant to gluten—

(including foodstuffs for people intolerant to gluten containing both ingredients which substitute wheat, rye, barley, oats or their crossbred varieties and ingredients made from wheat, rye, barley, oats or their crossbred varieties which have been specially processed to reduce gluten) must have been specially produced, prepared and/or processed in a way to

avoid contamination by wheat, rye, barley or their crossbred varieties. Requirement that the gluten content of such oats must not exceed 20 mg/kg. Article 3(4)

Requirement that foodstuffs for people intolerant to gluten consisting of or containing one or more ingredients which substitute wheat, rye, barley, oats or their crossbred varieties must not contain a level of gluten exceeding 20 mg/kg in the food as sold to the final consumer. Requirement that the labelling, presentation and advertising of those products must bear the term “gluten-free”. Article 3(6)

Requirement that the terms “very low gluten” and “gluten-free” referred to in Article 3(2) and (4) must appear in

proximity to the name under which the relevant foodstuff for people intolerant to gluten is sold. Article 4 Prohibition on the labelling, advertising and presentation of—

(a) foodstuffs for normal consumption; (b) foodstuffs for particular nutritional uses which are specially formulated, processed or prepared to meet special

dietary needs other than those of people intolerant to gluten but which are nevertheless suitable, by virtue of their composition, to meet the special dietary needs of people intolerant to gluten, bearing the term “very low gluten”, although the labelling, advertising and presentation of those foodstuffs may nevertheless bear the term “gluten-free” provided that

the gluten content does not exceed 20 mg/kg in the food as sold to the final consumer.

Figure 7-13 The Foodstuffs Suitable for People Intolerant to Gluten (England) Regulations 2009.

63

Figure 7-14 Allergen and HACCP data sheet.

64

Figure 7-15 Chef Cards, as free downloads.

Source: (http://www.celiactravel.com/gluten-free-cards/)

65

7.4 Case Studies

Case study 1. Ula’s new born baby with symptoms but not diagnosed

I knew something was wrong with my little one, but no doctor wanted to believe me, he has a very

strong wheat allergy, I would say gluten allergy but doctor don‟t want to test for this. When I heard about my

babies allergy I didn‟t know anything about it, and that‟s why I was scared, but all my doctor said was “oh,

it‟s no big deal, it‟s a lifetime disease but you have nothing to worry about”, “nothing to worry about” I

wanted to shout, I had no information given to me and didn‟t know how to cope, no idea what happens next, I

was feeling so down.

It took me four months to get a GP‟s referral for a blood test, then again for a referral to hospital to

see a specialist, looking back I steel feel I was trapped, and the thought I could do nothing for my baby who

was in pain from the all over body rash caused by the condition, and the battles I had to do with the doctors,

and in some ways myself,” why was I being penalised”? I couldn‟t do anything for myself, I felt stupid just

having to wait for the doctors to do something, I‟m his mother yet felt helpless, the doctors finally diagnosed

him with a wheat allergy, but his skin was still bad, so I took it upon myself to cut out all gluten, soon as I

started this gluten free diet his skin healed, my baby have beautiful smooth skin with a good colour, and the

vomiting stopped too.

I searched the internet for information on the diet, and it was there I found help; I also had some

friends to help me. Now I feel confident about my baby‟s diet and allergy I know it‟s not the end of the world,

but I‟m not scared anymore and I have a healthy little boy, yet still not diagnosed with coeliac disease.

66

Case study 2. Daphne diagnosed cœliac in 1976 aged 11 years

I was at my new secondary school. I knew something was wrong with me as my sister, who is a year

younger than me, was taller and taking over responsibilities I used to have as the older child. I was in

hospital for two weeks for lots of diagnostic tests, all of which were scary because I was alone – parents did

not stay in those days and visiting hours were very limited.

When first diagnosed it did not worry me as I did not like sandwiches and steak and kidney pie

anyway. The bread back then was in vacuum packed tins which went pop and they had to be boiled or baked

to revive the loaves which smelled and tasted of chemicals. My parents were good as the meals tended to be

naturally gluten-free as they were home cooked. They adapted meals which were not. In secondary school I

felt very different; packed lunches were not that common and I was the only coeliac and nobody had ever

heard of it. Today food sensitivities are almost a fashion accessory. In the late 70s and early 80s you did

not have ready meals or go out for meals very often so it wasn‟t a problem. When we did go out, it was the no

gravy, sauces, stuffing or breadcrumbs diet. Contaminating additives were not used so much.

Being a coeliac today is easy for me in some ways as I live in Germany and I know I cannot have

cakes and pastries at the traditional teas. The torte and gateaux look superb and I would like to try them but

as I have been a coeliac for most of my life I know I can‟t try them. Eating out is easier as potato starch is the

thickener which is commonly used. Coeliac condition, (disease), is not well known in Germany and I do not

receive any special coeliac care. However, I am fit and healthy and have two young daughters who

understand about coeliac condition to a certain extent. For the last 30 years I have been promising myself a

non-coeliac day to eat all the things I think I have missed, but, that list is getting shorter and I will probably

never do it!

I still have strong reactions on accidentally eating gluten but that‟s life!

If I had to choose, I would prefer not to be a coeliac but I think it is part of my personality – it‟s me as

an individual, it makes me different and sometimes it even makes me special. I do now miss having beer, (I

stopped having the occasional one about ten years ago), and there are now so many real ales around which

my husband raves about. Yes, I would be a coeliac but it must be understood that it is not a fad. It is not an

option but a medical condition that probably will not kill me directly – it is a complex immune disease that is

not fully understood.

67

Case study 3. Nicola diagnosed cœliac December 2002 due to pregnancy

During my pregnancy with my second child there was a nasty sickness (diarrhoea) bug going around

but I could not get rid of it. My daughter was born low birth weight (5lb 11oz) previous one was 8lb and still

suffering for diarrhoea so I went to the doctor and was diagnosed with Irritable bowel. This had no impact on

the problem so I saw a different doctor and reiterated that my sister was a coeliac, she then sent me for the

blood test and endoscopy we both knew what the results would be. I know of 5 other women diagnosed

through pregnancy and have assisted them with their diets. I remember being told by a dietician soon after

being diagnosed that I could always have a jacket potato when I showed concerns about eating out. That was

not the sort of eating out I had in mind and generally have a good experience when eating out.

Case study 4. The children of case study 3 diagnosed cœliac in 2009

Zoe diagnosed February 2009 aged 7

I was a very healthy baby and toddler, then I went to school and started to have school dinners that is when

my Mum noticed I had diarrhoea, she soon realised that because Mum is a Coeliac our meals at home are

generally gluten free, but my school meals are not therefore I was eating a lot more gluten. I had the blood

test and Endoscopy and started a gluten free diet. No more poo in my pants! I had a very good cook at school

and she would make me lots of different things from the gluten free flour, pasta and pizza bases Mum would

take in. The food is not so good now because that cook has left. I would prefer not to be a Coeliac but it is not

so bad because I feel better and I know what things I can eat now.

James diagnosed October 2009 aged 11

My mum and sister are coeliacs, My mum pursued the doctor to give me the 3 blood tests just as a check, it

came back positive much to our surprise and so I had an endoscopy the results were that I was a coeliac but

unlike most coeliacs I didn't have any symptoms it was only then that my Mum realised I was not gaining as

much weight as I should be. For the next few days I was really annoyed as I could not have fish and chips or

chocolate éclairs but we made some Gluten free Chocolate éclairs, they were delicious. After that I got over it

and was aright as we already had half the stuff we needed. On holidays we don't have too much trouble as we

normally we go on cruises and they have special dietary sections. I feel that most restaurants have a very

limited pudding section for coeliacs normally all we can have is ice cream, jelly or fruit we have recently

found out that Weatherspoon‟s is doing a gluten free apple crumble. I also have no choice for school dinners

which is generally dried up plain chicken or fish.

68

Case study 5. The mother of case study 2 and 3

It was in late September 1976 when our eldest daughter was finally admitted to hospital for a biopsy.

When she was about seven years old she started having an upset tummy and she stopped growing – her

younger sister overtook her both in height and weight. Our G.P. acknowledged there was something wrong as

she had always been tall for her age and slightly above average weight but the paediatrician did not agree

and said all children grew at different rates. Unfortunately she always seemed to see him in the summer

holidays after she had returned from camp with a healthy, (in those days tan was healthy!) tan and had put on

a little weight as she was not eating sandwiches etc. Back then we did not realise why she didn‟t want to eat

bread, cakes or pies; obviously, in retrospect, her digestive system was trying to tell us something.

The result of the biopsy confirmed she was a cœliac but we were horrified to be told she had a

disease! Why don‟t diabetics have diabetic disease etc? We were told what the consequences would be – no

apologies to us or our G.P. for disagreeing for nearly four years! Luckily I had studied dietetics on the

catering course which I had earlier done so the diet wasn‟t quite as difficult as it might have been. We

enrolled with the Cœliac Society and found some of the recipes to be quite good, bearing in mind the only

flour available in those days was Rite-diet, followed a couple of years later by Juvela – what an improvement!

Our daughter when diagnosed had just started at secondary school with her new school uniform. She

was nearly 12 years old and was 4‟7” tall and weighed 4st.7lbs. During the course of the first year after

diagnosis she grew to 5‟5” and weighed 7st.7lbs. It cost us a small fortune in new uniforms, clothes and

shoes! As an adult she is 5‟8” and a healthy weight.

One thing that stood out in our minds was the fact we had been told dairy produce was excellent for

her and the advertisement of the day was “Ski – the full of fitness food”, unfortunately it contained wheat flour

in those days!

Some years later, about 7years ago, our middle daughter was also diagnosed as a cœliac following

her second pregnancy. We do wonder, however, if her bowel was damaged following a persistent tummy bug

she picked up in Tunisia when she was 16years old? She had it for a couple of months and after the first path.

Results she was „clear‟ on bugs but was still suffering from diarrhoea. She was 37 when diagnosed.

Subsequently both of her children have also been diagnosed at the ages of 6 and 10. We‟re happy to say all

are otherwise fit and healthy and lead very active lives.

So why is the condition a disease and why do cœliacs have to pay fully for their prescriptions when

diabetics, epileptics etc. have free prescriptions for everything, even for things not related to their condition?

69

Case study 6. The mother and son (now 22) diagnosed in America

I've often said that celiac disease is in part a social disease. One of the things that transcends social

status, generations, religion, culture, politics and any other social-science categories for classifying groups, is

that we humans tend to connect with each other through food - "over the breaking of bread".

Think of all your favourite memories - the moments shared with others that you cherish - I'll bet

"dollars to donuts" that food was involved at some level. Family holidays & traditions, cultural & religious

celebrations, gatherings of friends and colleagues, all tend, at least to some degree; focus on the food shared

together (which is why so many business meetings are catered)

Food is a common language we all share and perhaps the importance of that interaction isn't realized

until a person feels isolated from others due to dietary restriction - especially if that restriction is a recent

occurrence. Feelings of isolation because the "common language" connection was severed can have some

very disturbing consequences that last years.

Maybe that sounds silly, but prior to knowing I had Coeliac disease, I was raising a child was sever

food allergies. Diagnosed as a toddler, he couldn't be expected to understand his food allergies and when that

food allergy is corn - it crops up everywhere. That allergy changed how he interacted with others in school,

play dates, clubs, summer camp, sleep over‟s, school lunches, any treats sent into school, holiday parties and

the list goes on.

If he ate anything with corn his skin blistered, and then peeled off in sheets. He not only looked like a

burn victim, but he felt like heck and was prone to infections due to all the exposed skin. He's now 22. He's still

allergic but to a lesser extent. When he's not careful and has a flare up his skin is a mess and it does affect him

on more than a physical level.

Of course his allergies also affected the rest of the family. It wasn't as easy that long ago without the

internet, specialty foods, etc. I learned to make everything from scratch - remember before fruit only jams,

jellies etc - I even had to make ketchup and bread and butter pickles because I don't want to rely on artificial

sweeteners used to replace the corn syrup. We could use anything with corn starch, modified food starch,

maltodextrin, and again - the list goes on - so much is derived from corn. Lucky for us, I knew my way around

the kitchen and didn't mind always cooking/baking for every event he was involved in. I don't know how we'd

have managed if that were not the case!

Perhaps it's more difficult for young people, or shy people. A good sense of self-confidence goes a

long way when dealing with any type of special dietary concerns, but that is my opinion!

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Case study 7. Jae C Jones

Jae wrote;

“I use to make a million excuses as to why I couldn't go. Now I'm just honest and up front about it. "I

really appreciate the invite and the idea of not having to cook sounds great! However, due to all my allergies,

it's really impossible and unfair to you to have to try to make me a safe meal. Honestly, I would have to make

myself an entire meal and bring it, and I really cannot afford to make enough to go around and I would not

feel right about not sharing. Maybe after all the chaos of the holidays settles down, the two of us can get

together and do something fun." I think honesty is the best policy, and let them down easy! Friends go to a lot

of work and really try hard to include us in things. Many feel bad that we can't have and really want us to feel

included, but seldom do they fully realize how limited we are and how overwhelmingly stressful being included

can be for us! I love my friends, but when it comes to food, I'd rather be home and alone in my kitchen! I very

seldom eat a meal with my family even because I try to minimize cross contamination as much as possible, and

it's really hard to do that if someone is making toast or dripping mayo etc. Plus I get sick at just the smell of

food, so we just take turns in the kitchen. Dinner parties just are not an option for me!”

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8. Notes

8.1 Cœliac Disease useful web pages;

Joseph Murray, M.D., a Mayo Clinic gastroenterologist and specialist in celiac disease, offers an overview of

celiac disease and its symptoms as well as its diagnosis and treatment. Dr. Murray led a recent Mayo Clinic

study of celiac disease, the results of which became public on July 1, 2009.

This video provides background and context for those findings.

http://www.youtube.com/watch?v=VWQT_-6y8WY&NR=1

For guidance on the provisions of allergen information for non pre-packed food which includes catering for

gluten free meals, on the food standards agency (FSA) website

www.food.gov.uk/news/newsarchive/2008/jan/guidall

For a management guide to serving people with cœliac disease:

Understanding gluten free food service,

www.instituteofhospitality.org

Coeliac Chef of the year

http://www.youtube.com/watch?v=qcBWMN9mz-M

For advice about cœliac visit

www.coeliac.org.uk

Direct Quotes

Health Related Quality of Life (HRQoL)

The World Health Organisation has defined HRQoL as:

[…] an individual‟s perception of their position in life in the context of the culture and value systems in which

they live, in relation to their goals, expectations, standards and concerns. It is a broad ranging concept

affected in a complex way by the person‟s physical health, psychological state, and level of independence,

social relationships and their relationships to salient features of the environment

(WHO QOL-group, 1996).

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8.2 Word count

Actual/Guide

Introduction (912+355) 1467 / 1800

Literature review 3743 / 4200

Methodology 1793 / 1500

Analysis 2412 / 1500

Conclusion 1201 / 1000

Total 10,616/10,000

(Due to completing two sets of questionnaires and case studies for triangulation giving a more accurate result,

the word count increased in the analysis section, hence is over by 6%)

-----

“What is food to one man may be fierce poison for others”

Lucretius (99-55bc)

(Source: Food, the key concepts, Balasco,W. 2008)

-----

“History celebrates the battlefields whereon we meet our death,

but scorns to speak of the ploughed fields whereby we thrive,

it knows the names of kings bastards,

but cannot tell us the origins of wheat,

that is the way of human folly.”

Jean Henry Fabre (1825-1915)

(Source: Food, the key concepts, Balasco,W. 2008)

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8.3 Data and answers collected from the survey.

Figure 8-1 Data collected from 'Chefs insight of Food intolerant/allergy guests with a focus on Coeliac.