Author: Herrick, Shannon, K Title: Using Nutrition Education Methods to Increase tire Consumption of Naturally Glutelt­free Grains i1t the Diets of l~tdividua/s with Celiac Disease

The accompanying research report is submitted to the University of Wisconsin-Stout, Graduate School in partial

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Graduate Degree/ Major: MS Food and Nutritional Sciences

Research Adviser: Esther Fahm, Ph.D.

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Number of Pages: 94

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ADVISER:

This section forMS Plan A Thesis or EdS Thesis/Field Project papers only Committee members (other than your adviser who is listed in the section above)

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3. CMTE MEMBER'S NAME: Dr.~ Bud1 j DATE: 5-y-/2-)_WX t ! ,

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2

Herrick, Shannon K. Using Nutrition Education Methods to Increase the Consumption of

Naturally Gluten-free Grains in the Diets of Individuals with Celiac Disease

Abstract

This study aimed to determine the mode of nutrition education that is most effective in

increasing confidence and potential consumption of naturally gluten-free grains among

participants in celiac disease support groups in the Minneapolis-St. Paul and western Wisconsin

regions. The support groups selected for this study were randomized into either a control or an

experimental group in which both groups received the same nutrition education presentation on

naturally gluten-free grains and were asked to complete the same pre-and post-questionnaires. In

addition, the experimental group was given the opportunity to sample the gluten-free grains

discussed throughout the presentation: millet, sorghum, and brown rice. Pre-and post-

questionnaires from both the control and the experimental groups were analyzed to determine

which method of nutrition education was more effective in increasing confidence and potential

consumption of naturally gluten-free grains.

Results indicated that confidence and likelihood of including millet in the diet were

significantly increased following the nutrition education presentation in both control and

experimental groups. Similarly in both the control and experimental group, the nutrition

education presentation significantly increased participant’s likelihood of including millet and

sorghum in their diets. No other significant differences were observed in this study.

3

Acknowledgments

I would first like to thank my research committee, Dr. Esther Fahm, Dr. Kerry Peterson

and Dr. Desiree Budd for the continued support and guidance that they provided me throughout

this endeavor. I would also like to thank each of them for helping me grow as a student as a

researcher. I would like to specifically thank Dr. Fahm for the amount of time that she spent

assisting me in completing this research and for the constant encouragement that she provided to

me.

Secondly, I would like to thank Susan Green for her assistance in computing my data

analysis. You generosity, attention to detail and patience were greatly appreciated. Next, I would

like to thank Kate Kramschuster of the University of Wisconsin-Stout library for your assistance

in helping me complete my research and for sharing your research knowledge with me. I would

also like to thank Ann Woods of the Green Bakery for providing me with the wonderful gluten-

free bread samples for my research. I greatly appreciated your contribution.

Next, I would like to thank my parents for the continuous encouragement and support

that they provided me; I appreciate it more than you know. Last, I would like to thank my fiancé

for dealing so patiently with my frustration and stress, for supporting me and for cheering me on

along the way! I am so thankful to have had such supporting people in my life as I completed

this research.

4

Table of Contents

.................................................................................................................................................... Page

Abstract ............................................................................................................................................2

List of Tables ...................................................................................................................................6

Chapter I: Introduction ....................................................................................................................7

Statement of the Problem ...................................................................................................10

Purpose of the Study ..........................................................................................................10

Assumptions of the Study ..................................................................................................11

Definition of Terms............................................................................................................12

Limitations of the Study.....................................................................................................15

Chapter II: Literature Review ........................................................................................................17

Chapter III: Methodology ..............................................................................................................34

Subject Selection and Description .....................................................................................34

Instrumentation ..................................................................................................................36

Data Collection Procedures ................................................................................................37

Data Analysis .....................................................................................................................40

Limitations .........................................................................................................................41

Chapter IV: Results ........................................................................................................................44

Demographic Characteristics of the Participants ..............................................................44

Confidence Ratings for use of Alternative Grains ............................................................47

Likelihood of Use of Alternative Grains ..........................................................................51

Chapter V: Discussion ...................................................................................................................58

Limitations ........................................................................................................................58

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Conclusions ........................................................................................................................59

Recommendations ..............................................................................................................63

References ......................................................................................................................................66

Appendix A: Appendix A: Allowed, Questionable, and Toxic Grains, Starches and Fours ........69

Appendix B: Schedule of Presentation Dates and Times ..............................................................71

Appendix C: Consent Form: Control Group ..................................................................................72

Appendix D: Consent Form: Experimental Group ........................................................................75

Appendix E: Pre-Questionnaire .....................................................................................................78

Appendix F: Post-Questionnaire: Control Group ..........................................................................80

Appendix G: Post-Questionnaire: Experimental Group ................................................................82

Appendix H: Nutrition Education Presentation .............................................................................85

Appendix I: Green Bakery Samples: List of Ingredients ...............................................................94

6

List of Tables

Table 1: A Comparison of Protein, Iron, Calcium and Fiber Intakes…………..…………..……30 Table 2: Gender and Diagnosis Distribution of Participants…………..…………..………….…45 Table 3: Distribution of Cooking Habits of Participants…………..…………..……………...…46 Table 4: Grocery Shopping Distribution of Participants…………..…………..…………..….…46 Table 5: Average Confidence Ratings of Millet for Control and Experimental Groups……...…48 Table 6: Average Confidence Ratings of Millet for Diagnosed and Undiagnosed Groups ….…48 Table 7: Average Confidence Ratings of Sorghum for Control and Experimental Groups ……49 Table 8: Average Confidence Ratings of Sorghum for Diagnosed and Undiagnosed Groups …50 Table 9: Average Confidence Ratings of Brown Rice for Control and Experimental Groups…50 Table 10: Average Confidence Ratings of Brown Rice for Diagnosed and Undiagnosed Groups……………………………………………………………………………………………51 Table 11: Mean Ranks of Including Millet in the Diet on Pre- and Post-Questionnaires….……52 Table 12: Mean Ranks of Including Millet ……………………………………………………...53 Table 13: Mean Ranks of Including Sorghum in the Diet on Pre- and Post-Questionnaires……54 Table 14: Mean Ranks of Including Sorghum…………………………………………………...55 Table 15: Mean Ranks of Including Brown Rice in the Diet on Pre- and Post-Questionnaires…56 Table 16: Mean Ranks of Including Brown Rice …………………………………………….…57

7

Chapter I: Introduction

Celiac disease was first identified in 1887 by the British physician, Dr. Samuel James

Gee. Dr. Gee reported his observations in a lecture on the clinical symptoms associated with a

specific gastrointestinal disorder, now known as celiac disease. Dr. Gee described the clinical

symptoms of the gastrointestinal disorder as being characterized by gastric cramping and the

presence of loose, watery stools. Dr. Gee declared that the condition experienced by his patients

was “a disease of chronic indigestion.” In addition, Dr. Gee theorized the importance of diet in

the control of the disorder and stated, “If there is cure, it must be by means of the diet” (Dowd &

Walker), cited in (Abel, 2010, p. 82).

During the 1940s and 1950s, the treatment for celiac disease was discovered by a Dutch

pediatrician named Dr. Willem Dicken. Dr. Dicken had noted the negative effects that the

ingestion of bread products and wheat had on his patients with celiac disease and proposed the

elimination of wheat from the diet as a potential treatment option. During the time period in

which Dr. Dicken was performing clinical observations of his patients with celiac disease, his

country, Holland, was under great distress from World War II. Due to the hardships of the war,

the availability of bread in Holland was very limited. While bread was not available to the

individuals with celiac disease, Dr. Dicken noted a great improvement in the symptoms of his

patients. When bread became available, and the patients resumed consuming bread, the

symptoms quickly returned. With this observation, Dr. Dicken proposed that the removal of

wheat from the diet would resolve the clinical symptoms associated with celiac disease (cited in

Abel, 2010).

Since the determination made by Dr. Dicken, an increase in knowledge has led to the

discovery of the gluten-free diet to treat celiac disease. In addition to excluding wheat from the

8

diet, the gluten-free diet also excludes rye and barley (Hadjivassiliou, Grunewald, & Davies-

Jones, 1999). In the 1950s and 1960s, the diagnosis of celiac disease was discovered by using a

small intestine biopsy. This discovery provided a better understanding of the nature and etiology

of celiac disease and has allowed for the development of more effective diagnostic procedures

(Hadjivassiliou & Grunewald, 1999).

During the time periods of Dr. Gee and Dr. Dicken’s work, celiac disease was primarily

considered a rare childhood problem. Over the years, celiac disease has become common in both

children and adults and is no longer considered a childhood disease. Today, celiac disease affects

one in every 330 people in the United States (Celiac Disease Foundation, 2011). The disease is

considered one of the most common immune-related disorders in the world (Alaedin & Green,

2005).

The prevalence of celiac disease has increased dramatically over the past decade. While

the reason for the recent increase in the number of celiac disease cases is unknown, a number of

different theories have been proposed. One theory is that there has been an increase in diagnoses

due to the improvements made in diagnostic testing (Van den Broeck, de Jong, Salentijn,

Dekking, Bosch, Hamer, & Smulders, 2010). Today, very specific tests are done to confirm the

diagnosis of celiac disease and with more efficient testing procedures in place, it is more likely

that individuals will receive a more accurate diagnosis (Beyer, 2008).

A second theory proposed by Van den Broeck et al. (2010) is that there is an increased

awareness of celiac disease. Recently, the term “gluten-free” has caught the attention of both

medical professionals and the general public, due to an increase in the number of celiac disease

research centers in the United States (Abel, 2010). These research centers have caught the

attention of the media and have made the disease more aware to the general public (Abel, 2010).

9

A third theory for the rising prevalence of celiac disease proposes that the consumption of

wheat and gluten has increased in the American diet, making genetically predisposed individuals

more prone to developing the disease (Saturni, Ferretti, & Bacchetti, 2010). Yet another theory

discusses the relationship of early exposure to gluten-containing cereals in infancy as a possible

cause of the increased prevalence of the disease (Rubio-Tapia & Murray, 2010). Lastly, Rubio-

Tapia and Murray (2010) presented an additional theory that proposes there have been changes

in the cultivation of wheat, rye, and barley, leading to changes in the protein structure. The

authors stated that these changes in proteins may appear more toxic to the body’s immune

system and aid in development of celiac disease.

Due to the recent increase in the prevalence of celiac disease, an increased need has

developed for gluten-free food products. “Gluten-free” is a term that has only recently been

introduced on food labels. The United States Food and Drug Administration is currently

proposing that the term “gluten-free” be defined as a food that does not contain a gluten

ingredient, one that is a hybrid or crossbreed of a gluten, or an ingredient that contains no more

than 20 parts per million (ppm) of gluten (Saturni, Ferretti, & Bacchetti, 2010).

Although there has been an increase in food bearing the “gluten-free” claim, the possible

nutritional inadequacies of these foods is of great concern to medical and nutrition professionals.

The development of nutrient deficiencies in celiac disease is one of the major concerns

associated with the diet. Among the most common long-term nutrient deficiencies associated

with celiac disease are deficiencies in fiber, folate, niacin, and vitamin B12 (Saturni, Ferretti, &

Bacchetti, 2010). The reason that many celiac disease patients develop these nutrient deficiencies

is attributed to the damage already caused to their small intestine as well as the poor nutrient

profile of many commercially produced gluten-free foods. Many commercial gluten-free food

10

products are made with refined flours in which many of the nutrients have been removed.

Consequently, many gluten-free products are very low in fiber, vitamins, and minerals.

Consuming these products can lead celiac disease patients to develop severe nutrient deficiencies

(Saturni, Ferretti, & Bacchetti, 2010).

Statement of the Problem

With an increase in the prevalence of celiac disease, there is a growing concern over the

nutritional quality of the gluten-free diet. The gluten-free diet in celiac disease is a very

restrictive diet, which an individual must adhere for the duration of life. Due to the nature of

celiac disease affecting the mucosa of the small intestine, celiac disease patients are put at greater

risk of developing nutrient deficiencies. In addition, many gluten-free foods are also very low in

nutrients plus very high in calories and saturated fats. Because of this combination of

circumstances, the development of nutrient deficiencies in celiac disease is recognized as a

growing area of concern among medical professionals.

Effective nutrition education about the gluten-free diet can lead to fewer possibilities of

consuming gluten-containing foods and to gaining additional information on a variety of food

choices that can be included in the diet. Consequently, nutrition education may help lead to a

better quality of life, fewer nutrition deficiencies, better compliance to the gluten-free diet, a

decreased risk of developing other gastrointestinal diseases, and a decreased risk in early

mortality among celiac disease patients.

Purpose of the Study

The purpose of this study was to determine the mode of nutrition education that is most

effective in increasing confidence and potential consumption of naturally gluten-free grains

11

among participants in celiac disease support groups. Specific research objectives were as

follows:

1. Determine if a nutrition education session including exposure to alternative gluten-

free grains is more effective than such a session without exposure to alternative grains

in increasing participants’ confidence to include alternative grains in their future

diets.

2. Determine if a nutrition education session including exposure to alternative gluten-

free grains is more effective than such a session without exposure to alternative grains

in increasing the likelihood that participants’ will include alternative grains in their

future diets.

3. Determine if participants in celiac disease support groups with a confirmed intestinal

biopsy diagnosis of celiac disease are more likely than participants without a

confirmed diagnosis to include alternative grains into their diets.

Assumptions of the Study

Throughout the development of this study, five assumptions were identified. First, it was

assumed that the participants of the celiac disease support groups would be willing to participate

in the study. This assumption was based on results of a study conducted by Case (2005), which

indicated that the majority of celiac disease patients choose to attend celiac support group

meetings as their primary method of obtaining information about the gluten-free diet.

Secondly, it was assumed that participants in the group who had exposure to the

alternative gluten-free grains during the nutrition education presentation would be more likely to

report being more confident in including the alternative grains into their diets than individuals

without exposure. It also was assumed that these individuals would be more likely report that

12

they would include these grains in their own diets on a more regular basis than individuals

without exposure. This assumption was based on the sensory stimulation theory. This theory

states that effective learning occurs when the senses are stimulated (Dunn, 2002) (Laird), cited in

(Dunn, 2002, p. 1). Dunn (2002) explained that 95% percent of adult learning is achieved

through seeing, 13% is achieved by hearing and 12% percent is achieved by touching, smelling

and tasting. The idea behind this theory is that if a hands-on learning component incorporates

hearing, seeing, touching, smelling and tasting, the learner will be more likely to retain the

information and repeat the behaviors.

The next assumption identified is that both groups would report an increase in confidence

and inclusion of alternative-grains following the nutrition education session. This assumption

was based on the theory of planned behavior. The theory of planned behavior states that if

individuals evaluate a suggested behavior as being a positive experience, and if they think that

their peers want them to perform this behavior, then the individuals will be more likely to carry

out the behavior themselves (Ajzen, 1991). The last assumption was that participants would

answer the pre- and post- questionnaires truthfully and to the best of their ability.

Definition of Terms

The following terms are defined in this section to provide clarity to the content and

information presented throughout this study:

Absorption. The process by which nutrients from foods are transferred from the

gastrointestinal tract into the bloodstream (Wardlaw & Hampl, 2007).

Allergy. Abnormal reactions of the body’s immune system that occur in response to

foreign substances (Mayo Foundation for Medical Education and Research, 2012).

13

Allergic reaction. A hypersensitivity that occurs when allergens come into contact with

the skin, nose, eyes, respiratory tract, and gastrointestinal tract (Dugdale, 2010).

Antibody. A protein found in the blood that helps prevent infection by detecting and

inactivating foreign substances (Wardlaw & Hampl, 2007).

Antigen. Any foreign substance found in the blood that is detected by the immune

system (Wardlaw & Hampl, 2007).

Autoimmune. An immune reaction that occurs against normal cells in the body

(Wardlaw & Hampl, 2007).

Body mass index (BMI). The value used to indicate risk of body-weight related

disorders. BMI is calculated by diving body weight in kilograms by height in meters squared.

Celiac disease. A genetically-inherited disease characterized by a permanent intolerance

to gluten proteins and damage to villi of the small intestine (Beyer, 2008).

Endoscopy. A procedure in which a tube is threaded down the esophagus, through the

stomach and into the small intestine to obtain a tissue sample for a biopsy.

Gastrointestinal tract. The main site in the body where food is broken down and

nutrients are absorbed. The gastrointestinal tract is made up of the following sites: mouth,

esophagus, stomach, small intestine, large intestine, rectum, and anus (Wardlaw & Hampl,

2007).

Gluten. A generic term used to describe the storage proteins in wheat, rye, and barley

(Lee, Zivin, & Green, 2007).

Gluten-free. Foods that do not contain wheat, rye, barley, or their related counterparts

(Beyer, 2008).

14

Inflammatory response. A reaction that occurs in response to an antigen or to injury.

This reaction may cause pain, swelling, itching, redness, heat, and loss of function (Mosby’s

Medical Dictionary, 2008)

Intestinal biopsy. The extraction of a tissue sample from the intestine that is used to

diagnose celiac disease. The tissue is obtained by using an endoscopic procedure.

Leukocyte. A white blood cell (Wardlaw & Hampl, 2007).

Mucosa. The membranes that line the inside of digestive tract organs (Wardlaw &

Hampl, 2007).

Immune system. A system in the body that consists of white blood cells, lymph glands

and vessels that provide defense for the body against foreign substances (Wardlaw & Hampl,

2007).

Immunoglobulin. Proteins that are produced by antibodies in response to the detection

of foreign substances in the blood stream (Wardlaw & Hampl, 2007).

Peptide. A few amino acids bound together (Wardlaw & Hampl, 2007).

Protein. Food and body components that are made up of amino acids and peptides

(Wardlaw & Hampl, 2007).

T- cells. A type of white blood cell in the immune system that interacts with the infected

host cell (Wardlaw & Hampl, 2007).

Villi. Small fingerlike projections on the lining of the small intestine that increase the

amount of surface area of the small intestine and maximize the absorption of nutrients into the

bloodstream (Beyer, 2008).

15

Limitations of the Study

Several limitations were also observed during the development of this study. The first

was that the individuals participating in celiac disease support groups are more likely to be

compliant to the diet than those not participating in support groups. Consequently, the

participants in this study may not be the best representation of the entire population of celiac

disease patients. Secondly, it is possible that the study participants may have already known the

information presented during the nutrition education session. This limitation may have skewed

the results of the study.

A third limitation noted was that the participants of this study were not all exclusively

diagnosed with celiac disease. Some participants of the study attended support groups with a

family member with celiac disease, some attended to obtain information on the gluten-free diet

and others attended because they suspected that they had celiac disease or gluten intolerance.

Because of the wide range of diagnoses, backgrounds and reasons for attending support groups,

the results of this study were not the best representation of the celiac disease population. Another

limitation identified was that participants of this study were asked to self-report the amount of

times that they included alternative gluten-free grains into their current diets and the amount of

times that they planned to include these grains in their future diets. Self-reported data collection

may have led to inaccuracies in the results based on participants over or under-reporting of their

consumption practices and plans. The participants were also asked to complete the pre-and post-

questionnaire while the researcher was present. This also may have resulted in participants over

or under reporting their confidence and potential inclusion of the grains.

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The last limitation that was recognized was that the parameters of the pre-and post-

questionnaires were not able to measure actual changes in confidence and dietary behaviors. The

pre-and post-questionnaires were only designed to measure if the participants planned to include

the grains discussed on a more regular basis. Because of this, it is impossible to infer if actual

dietary changes were made as a result of the intervention.

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Chapter II: Literature Review

This chapter presents an overview of celiac disease, including a description of its

pathophysiology, diagnosis, and common symptoms. The chapter describes the gluten-free diet

used to treat the disease and highlights the main issues, complications, primary nutrition

concerns, and limitations of the gluten-free diet. This chapter concludes by discussing alternative

gluten-free foods that can be incorporated into the diet, as well as the need for enhanced nutrition

education for celiac disease patients.

Celiac Disease Overview

Celiac disease is a genetically-inherited autoimmune disorder that can affect both

children and adults. Some other common names for celiac disease include celiac sprue and

gluten sensitive enteropathy. This disease is characterized by a permanent intolerance to gluten

proteins in individuals who are genetically susceptible. The gluten proteins that are toxic to

celiac disease patients exist primarily in the form of wheat (gliagins), rye (secalins), and barley

(hordeins) (Dickey, 2008).

When individuals with celiac disease ingest gluten, their bodies are unable to break the

proteins down properly, causing the proteins to appear foreign to the body’s immune system.

Their bodies exert an immune-mediated response to the proteins, which in turn, damages the

mucosa of the small intestines and creates a cascade of immunologic responses (Alaedini &

Green, 2005). If left untreated, celiac disease can predispose affected individuals to many other

diseases and complications. Although celiac disease is strongly related to genetic predispositions,

environmental and immunological factors all play a role in the development of this disease

(Alaedini & Green, 2005).

18

It is important to note, that celiac disease is not a type of food allergy. There are several

differences between food allergies and autoimmune disorders such as celiac disease. The main

difference between the two is that in food allergies, the immune system attacks foreign external

substances; whereas in autoimmune disorders, the immune system attacks healthy tissues in the

body. When functioning properly, the body’s immune system works to rid the body of foreign

substances. In food allergies, the immune system mistakenly attacks a food protein thinking that

it is a foreign substance and elicits response to destroy the food protein. Immune responses from

food allergies can range from mild symptoms such as a rash, to severe symptoms such as

difficulty in breathing (The Food Allergy and Anaphylaxis Network, 2011)

In autoimmune disorders, the immune system mistakenly attacks normal tissues in the

body for foreign substances. The immune system is not able to decipher between foreign

antigens and healthy body tissues when an autoimmune disorder is present. When this occurs, the

immune system thinks that a part of the body is the foreign substance and attacks that part of the

body. In celiac disease, the presence of gluten in the body stimulates the production of

immunoglobulins from the immune system to attack the lining of the small intestine. One last

major difference between a food allergy and an autoimmune disorder is that food allergies may

be outgrown with age and autoimmune disorders cannot (American Celiac Disease Alliance,

2012).

Etiology and Pathophysiology of Celiac Disease

The specific cause of celiac disease is unknown. However, many researchers agree that

the development of celiac disease is related to genetic, environmental, and immunologic factors.

Persons with celiac disease have been found to have a close genetic linkage to the class II human

leukocyte (HLA) genes (Aladeini & Green, 2005). Over 99% of celiac disease patients have been

19

found to possess the HLA-DQ2 and HLA-DQ8 genes that bind gluten (Jackson-Allen, 2004).

Ninety-five percent of patients possess the HLA-DQ2 gene, while the remaining 5% possess the

HLA-DQ8 gene (Alaedini & Green, 2005). Approximately one-third of the American population

possesses the HLA-DQ2 and HLA-DQ8 genes, however, possessing these genes does not

indicate that a person will have celiac disease (Celiac Disease Foundation, 2011). When

individuals are found to possess the HLA-DQ2 or HLA-DQ8 genes, they are only genetically

susceptible to developing celiac disease (Alaedini & Green, 2005).

The role that genes play in celiac disease relates to gluten present in the gut. The genes

bind to the gluten peptides, presenting the peptides as a foreign antibody to the T-cells in the

immune system. When the gluten peptides are presented to the immune system, an immune

response immediately is initiated to protect the body. This immune response signals the plasma

cells to produce cytokines. These cytokines initiate an immune response to gluten, and begin to

form antibodies to the gluten peptides (glutenins, gliagins, seculinus, and hordeins). With

antibodies in place, the ingestion of gluten will appear as a foreign threat to the body and will

create an inflammatory immune response in the gut, which then causes damage to the small

intestine.

The small intestine is a very important organ in the body as it is the primary site for the

digestion of foods and absorption of nutrients (Beyer, 2008). The interior lining of the small

intestine is designed to possess folds lined with small fingerlike projections called villi. The role

of the villi on these folds is to aid in the digestion and absorption of nutrients. Specifically, the

villi help to increase the amount of surface area of the small intestine and maximize the

absorption of nutrients into the bloodstream. An inflammatory immune response results from the

ingestion of gluten in celiac disease causes villi to die, which in turn, leads to a cascade of other

20

complications, including gastrointestinal discomfort and the malabsorption of nutrients (Beyer,

2008).

Under normal conditions, the gastrointestinal tracts of individuals without celiac disease

are exposed to numerous antigens during the digestion of food. Still, their gastrointestinal tracts

are protected from these antigens by enzymes present in their guts. Enzymes, along with the

antibodies present in the gut, are able to detect foreign antigens present in the gastrointestinal

tract and create an immune response to protect the gut from potential damage. In celiac disease,

an abnormal immune response is elicited when gluten is introduced into the gastrointestinal tract.

As described above, persons with celiac disease possess the HLA-DQ2 or the HLA-DQ8 genes

which bind gluten peptides and present them to the immune system.

Celiac disease can present itself at any time during a genetically-predisposed person’s

life. Most often, however, adults are diagnosed between the ages of 40 to 60 (Beyer, 2008).

Children are typically diagnosed earlier in their lives after experiencing periods of excessive

vomiting, failure to thrive, and excessive weight loss. These symptoms are generally reported

after a child consumes gluten-containing cereals for the first time (Beyer, 2008).

For adults, celiac disease may go undiagnosed and untreated for a long period time

before the person experiences symptoms, or is tested and diagnosed as having the disease. The

onset of celiac disease in adulthood is not entirely understood. When these adults are genetically-

predisposed to developing celiac disease, it is thought that the disease manifests itself during

periods of major hormonal or cellular changes. Celiac disease is commonly triggered in adults

after a surgery, viral infection, during pregnancy, after child birth or during periods of physical

or emotional stress (Celiac Disease Foundation, 2011).

21

Diagnosis of Celiac Disease

The gold standard for the diagnosis of celiac disease includes a positive blood test and a

positive biopsy of the small intestine. While many people who experience the symptoms of

celiac disease report improvements after adhering to a gluten-free diet, the diagnosis of celiac

disease is not conclusive unless a positive biopsy test is found.

The diagnosis of celiac disease requires a number of different blood tests. Before taking

these blood tests, individuals must be consuming a diet containing gluten for at least four weeks

before the test is administered so that the presence of specific antibodies to gluten are detectable.

The blood tests are conducted to detect various levels of proteins and antibodies that manifest in

celiac disease, specifically, the presence of immunoglobulin IgA and IgG antiendomysial

antibodies or the IgA and IgG antigliadin antbodies. The IgG antigliadin antibodies are reported

to be the antibodies that elicit the immune response when gluten is present in the gut (Beyer,

2008). The blood tests include: the anti-tissue transglutaminase antibody (tTG-IgA + IgG) test,

the anti-endomysial antibody (EMA-IgA) test, the anti-deaminated gliadinpeptide (DGP-IgA +

IgG) test, a total serum IgA test, and the anti-gliadin antibody (AgA-IgG + IgA) test. The anti-

tissue transglutaminase antibody (tTG-IgA + IgG) test is considered the most sensitive test for

celiac disease. If test results from the anti-tissue transglutaminase antibody (tTG-IgA + IgG) or

the anti-endomysial antibody (EMA-IgA) are negative, or if the patient is IgA deficient, the anti-

deaminated gliadinpeptide (DGP-IgA + IgG) test is conducted. The total serum IgA test is then

administered to determine if the patient is IgA deficient. Lastly, the anti-gliadin antibody (AgA-

IgG + IgA) test is the one most commonly utilized in the diagnosis for the disease in children

(Celiac Disease Foundation, 2011).

22

If a patient has a positive antibody test and is found to be IgA deficient, then a biopsy of

the small intestine is conducted. To perform the biopsy, 4-6 pieces of the small intestine are

removed via an endoscopic procedure (Alaedini & Green, 2005). The biopsies then are examined

for the number of villi present as well as for abnormal mucosal damage in the crypts of the small

intestine. If positive blood tests and positive biopsies are found, then a diagnosis of celiac disease

is confirmed. A definitive diagnosis is made if a patient experiences clear clinical improvements

after adhering to a gluten-free diet (Alaedini & Green, 2005).

A statement made by Jackson-Allen (2004) of the North American Society of Pediatric

Gastroenterology Hepatology and Nutrition encourages that all children should be tested for

celiac disease by their primary medical professional if they meet the following criteria: the

children have a first degree relative with celiac disease, Type I diabetes, Down’s syndrome,

Turner’s or William’s syndrome, or if the children have a combination of persistent diarrhea,

have poor weight gain, or experience abnormal weight loss. This statement was made to ensure

that children who are susceptible to developing celiac disease are tested and diagnosed early to

reduce future complications. It is estimated that approximately 3 million Americans have celiac

disease and close to 95% of these individuals are undiagnosed (The University of Chicago Celiac

Disease Center, 2005).

Symptoms of Celiac Disease

The symptoms of celiac disease vary greatly among patients. Patients can range from

asymptomatic to severe malnutrition. Symptoms of celiac disease have been found to differ

based on the age of the patient and the duration of exposure to gluten proteins when the disease

is present. Celiac disease is a multi-system disorder; therefore the symptoms and complications

experienced affect many different parts of the body.

23

Some of the most common symptoms of celiac disease that patients report prior to

diagnosis and treatment include diarrhea, abdominal pain, abdominal bloating, and an increase in

the frequency of bowel movements (Jackson-Allen, 2004; Murray, Watson, Clearman & Mitros,

2004). However, some patients do not experience these classical gastrointestinal symptoms and

instead develop a rare skin disorder called dermatitis herpetiformis. This disorder is experienced

by only 10-20% of patients with celiac disease (Celiac Disease Foundation, 2011). Dermatitis

herpetiformis is characterized by an autoimmune response that results in the development of a

red, blistering, and extremely itchy rash that is symmetric on both sides of the body. This rash

commonly appears on the face, elbows, knees, or buttocks of patients (Celiac Disease

Foundation, 2011). An individual with dermatitis herpetiformis or an asymptomatic form of

celiac disease may still experience small intestine damage, nutritional deficiencies, and other

related complications (Alaedini & Green, 2005).

The classic clinical complication associated with celiac disease is the chronic

inflammation of the intestinal mucosa and the death of the intestinal villi (Saturni, Ferretti, &

Bacchetti, 2010). These lead to many additional complications in the digestion and absorption of

macro and micronutrients. These complications can lead not only to a wide array of nutrient

deficiencies, but can also segway into the manifestation of other complications. Some more

serious complications of celiac disease include weight loss, anemia, delay in puberty onset,

osteoporosis, an increase risk of sepsis, infertility, pneumococcal infections, and non-Hodgkin’s

lymphoma (Saturni, Ferretti, & Bacchetti, 2010).

If celiac disease is untreated, an individual is put at tremendous risk for developing many

nutritional complications and other immune-related disorders. The most common complications

of untreated celiac disease include iron deficiency anemia, vitamin and mineral deficiencies,

24

vitamin K deficiency causing increased hemorrhaging, and gastrointestinal cancers (Celiac

Disease Foundation, 2011).

Within two to eight weeks of adhering to a gluten-free diet, most of the clinical

symptoms of celiac disease will be resolved. Damage to the small intestine and to the immune

system could take up to a few months to a few years for recovery, depending on the amount of

damage caused (Beyer, 2008). If diagnosed early, and started on a gluten-free diet, children will

experience complete recovery of their intestinal mucosa within three to six months; they will re-

gain weight and stature, regain normal amounts of red blood cells, and will experience a

resolution of gastrointestinal symptoms (Jackson-Allen, 2004). While gastrointestinal symptoms

will also disappear in adults, complete intestinal recovery is not achieved (Rubio-Tapia &

Murray, 2010).

Treatment of Celiac Disease

The cornerstone treatment for celiac disease is the adherence to a life-long gluten-free

diet (Stevens & Rashid, 2008). The treatment for celiac disease is quite unique in that it is one of

the few medical interventions for a disease that involves diet and nutrition as the primary

treatment method (Thompson, Dennis, Higgins, Lee, & Sharrett, 2005). Many grains and foods

must be avoided because gluten entails a number of different peptides that exist in wheat, rye,

and barley (Koskinen, Villanen, Korponay-Szabo, Lindfors, Maki, & Kaukinen, 2009).The

typical gluten-free diet consists of naturally gluten-free foods such as fruits, vegetables, rice

unprocessed meat and dairy as well as substitute food products such as gluten-free pastas, breads,

cereals, and snack foods (Lee, Zivin, & Green, 2007).

The general theme of the gluten-free diet is to avoid pastas, cereals, breads, and bread

products. While this restriction may seem very straightforward, it is very difficult to follow and

25

adhere to a gluten-free diet. Many less obvious and more obscure food sources of gluten exist,

which also must be avoided. As described by Saturni, Ferretti, and Bacchetti (2010), the most

common gluten-containing foods to avoid on the gluten-free diet include grains that contain

gluten such as wheat, rye, and barley. Additionally, there are many hybrids of these grains such

as wheat germ, wheat bran, whole wheat, cracked wheat, khorosan wheat, spelt, triticale,

semolina, einkorn, and bulgur that must also be avoided. Because many of these grain

derivatives are not commonly known, it is imperative that persons with celiac disease read food

labels very carefully. If the following less common words appear in a nutrition label, a person

with celiac disease must avoid the food: wheat starch, wheat bran, graham flour, kamut, and

hydrolyzed wheat protein.

Malt is also a toxic food ingredient for patients with celiac disease because it contains

partial components of the peptides present in barley. Derivatives of barley such as malt, malt

syrup, malt extract, and malt flavorings should also be avoided (Saturni, Ferretti, & Bacchetti,

2010). In addition, gluten may be present in pharmaceutical product; patients should check the

ingredients of these products before using them (Celiac Disease Foundation, 2011). Other

common gluten-containing foods that are typically overlooked include baked beans, breaded

meats, processed meats, chocolate bars, communion wafers, croutons, dry roasted nuts, gravy,

icing and frosting, marinades, salad dressings, and soy sauce (Case, 2005). Appendix A presents

a list of allowable, questionable, and toxic grains, starches, and flours in the gluten-free diet.

Because of the numerous hidden forms of gluten in foods, celiac disease patients may

accidently consume foods containing gluten. When this happens, the body’s immune system

detects the gluten and elicits an immune response; damage is caused to the small intestine and

gastrointestinal symptoms occur rapidly. These symptoms include bloating, cramping, flatulence,

26

diarrhea, and vomiting (Beyer, 2008). If an affected person does not adhere to the gluten-free

diet for a long period of time, extensive damage to the small intestine will occur, putting the

individual at an increased risk of developing nutritional deficiencies, other gastrointestinal

complications, and possibly even cancer (Beyer, 2008).

Issues and Complications of the Gluten-Free Diet

Although the gluten-free diet is effective in preventing damage to the small intestine and

preventing gastrointestinal complications, there are many shortcomings to the gluten-free diet.

Among these concerns is the increased rate of celiac disease patients who have nutritional

deficiencies, are overweight, and who are not able to comply with the necessary diet.

Many researchers agree that adherence to a gluten-free diet may create many risks of

developing nutritional deficiencies for the patients. Developing nutritional deficiencies is among

the most common complications associated with celiac disease, and a recent study found 20-38

% of celiac disease patients have a nutritional deficiency as determined by analysis of dietary

intake (Saturni, Ferretti, & Bacchetti, 2010). The most common deficiencies noted include

calories, protein, fiber, iron, calcium, magnesium, vitamin D, zinc, folate, niacin, riboflavin, and

vitamin B12 (Saturni, Ferretti, & Bacchetti, 2010). A study conducted by Lee, Dave, Ciaccio,

and Green (2009) found only 44% of celiac disease patients meet the recommended requirement

for iron, only 46% meet the requirement for fiber, and only 31% meet the requirement for

calcium.

Another major concern with celiac disease is weight gain (Lee, Dave, Ciaccio, & Green,

2009). In addition to the commercial gluten-free foods containing very few nutrients, many of

these foods also contain high levels of fats, sugar, and salt. Many celiac disease patients

compensate for not consuming foods containing gluten by consuming gluten-free foods that are

27

very high in fat, sugar, and calories. The fats present in many of these foods also have been

found to contain high levels of both trans and saturated fats, putting celiac disease patients who

consume them at an increased risk of developing coronary heart disease and becoming

overweight. In the same study conducted by Lee, Dave, Ciaccio and Green (2009), 81% of the

patients surveyed had gained weight from the time their diagnosis was made, while 90% of them

were within normal weight ranges before diagnosis. Because many patients develop nutrition

complications, the nutritional content of gluten-free food is an increasing area of concern

(Saturni, Ferretti, & Bacchetti, 2010).

Another area of concern with the gluten-free diet is the low rate of compliance with the

diet. Non-compliance in celiac disease can result in a number of complications, including

decreased quality of life, nutritional deficiencies, increased risk in developing other immune-

related diseases, increased risk of gastrointestinal cancers, and an increased risk of mortality

(Stevens & Rashid, 2008). Compliance with the gluten-free diet has been found to vary amongst

individuals, again based on the length of time that the individuals have been diagnosed with the

disease and the age of the individual. However, recent research suggests that compliance

amongst teens and adults is decreasing (Stevens & Rashid, 2008). Reasons for low compliance

include the poor palatability of gluten-free food, lack of initial nutrition education about the

gluten-free diet, poor understanding of reading food labels, and lack of knowledge regarding

where to obtain gluten-free products (Stevens & Rashid, 2008). Other issues related to non-

compliance, especially in children, include embarrassment and feeling different among their

peers.

One relevant issue related to the compliance to the gluten-free diet is the cost of gluten-

free foods. A recent study conducted by Stevens and Rashid (2008) compared the prices of 56

28

gluten-free and gluten-containing products at two grocery stores. Foods compared in this study

included bakery products, cereals, cookies and sweets, baking flours and mixes, pasta, soups and

sauces, and snack foods. This study found that the mean price of gluten-free foods was 242%

higher than gluten-containing foods (Stevens & Rashid, 2008).

The economic burden of purchasing gluten-free foods may decrease an individual’s

compliance, and therefore, put many individuals at risk of developing other serious health

complications. A dire need exists for the adoption of alternative methods to decrease the cost of

gluten-free foods and thus enhance the nutritional quality of the gluten-free diet as well as

compliance with the diet.

Alternative Gluten-Free Grains

Although the list of foods that need to be avoided in celiac disease is quite extensive,

there are many other naturally gluten-free foods that can be incorporated into the gluten-free diet

for celiac disease. Specifically, the use of alternative grains is a promising area in decreasing

nutritional complications, increasing variety of food choices, and increasing the overall

compliance of individuals to the gluten-free diet (Saturni, Ferretti, & Bacchetti, 2010).

Some examples of naturally gluten-free grains that can be used in the diet of celiac

disease patients includes brown rice, potato flour, corn flour, sorghum, buckwheat, quinoa

amaranth, flax, millet and teff (Saturni, Ferretti, & Bacchetti, 2010). Most of these grains can be

consumed as a cereal, can be prepared as a side dish, can be ground and used as substitutes for

flours, and can be used variably in baking. A more complete list of grains, starches, and flours

that are allowed in the gluten-free diet can be found in Appendix A.

Most of the naturally gluten-free grains can be purchased at lower costs than

commercially produced gluten-free foods in local grocery stores, health food stores, or at upscale

29

markets. When purchasing and consuming these grains, it is important for celiac disease patients

to ensure that the grains are certified “gluten-free” and that they have not been cross-

contaminated with gluten-containing grains (Beyer, 2008). Consuming a grain that has been

contaminated with gluten can elicit an immune response and cause gastrointestinal

complications.

Naturally gluten-free grains possess many additional qualities that are far more nutrient

rich than commercially-prepared gluten-free products. When commercial gluten-free food

products are produced, the grains are refined to rid the food of gluten, and the process removes

many vitamins and minerals as well. In addition, many gluten-free products are not enriched with

iron or B vitamins. (Case, 2005). In contrast to commercial gluten-free products, naturally

gluten-free grains are rich sources of complex carbohydrates, complete protein, fiber, folate, and

many other vitamins and minerals. The inclusion of these alternative grains may not only help

combat nutritional deficiencies, but also may help control weight gain and provide nutrients

essential for the prevention of disease.

A recent study compared the amount of folic acid present in quinoa, amaranth, and wheat

this study found quinoa and amaranth to contain far more folic acid than wheat (Saturni, Ferretti,

& Bacchetti, 2010). Specifically, 100 grams of quinoa contained 78.1 mcg of folic acid, 100

grams of amaranth contained 102 mcg and 100 grams wheat contained only 40 mcg of folic acid.

In addition, amaranth and quinoa were also found to contain two times more vitamins and

minerals than both wheat and barley (Saturni, Ferretti, & Bacchetti, 2010). Since foalte

deficiency is one of the most common nutrient deficiencies found in celiac disease, the addition

of these alternative grains to the diet could help eliminate these nutrient deficiencies and the

complications associated with it (Saturni, Ferretti, & Bacchetti, 2010).

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In a similar study conducted Lee, Dave, Ciaccio, and Green (2009), the nutrient profiles

of a standard gluten-free diet were compared to an alternative diet containing naturally gluten-

free diet grains. The study was conducted by randomly assigning fifty patients with celiac

disease to either the standard gluten-free diet or the alternative gluten-free diet. The results

showed that the patients adhering to the alternative diet group had a significantly higher nutrient

profile than those adhering to the standard diet. A comparison of protein, iron, calcium, and fiber

intake was conducted and found that the subjects on “alternative diet” consumed higher amounts

of nutrients than the “standard diet.” The results appear in Table 1 below.

Table 1

A Comparison of Protein, Iron, Calcium and Fiber Intakes from Alternative Gluten-free and Standard Gluten-free Diets

Nutrient Alternative Diet Standard Diet

Protein 20.6 grams 11 grams

Iron 18.4 milligrams 1.4 milligrams

Calcium 182 milligrams 0 milligrams

Fiber 12.7 grams 5 grams

Note. Adapted from "The effect of substituting alternative grains in the diet on the nutritional profile of the gluten-free diet," by A. R. Lee et al., 2009, Journal of Human Nutrition &

Dietetics, 22(4), p. 360.

The subjects in the “alternative diet” group were given a list of eight gluten-free grains to

choose from to incorporate into their diets. Those grains included white rice, brown rice, potato

flour, oats, corn, buckwheat, quinoa, and millet. The subjects were asked to consume three of the

grains each day. The majority of the subjects chose to include rice into their diet; only one person

chose to include buckwheat; only one person also chose to include quinoa; and no one chose

millet (Lee, Dave, Ciaccio, & Green, 2009). As discussed by Lee, Dave, Ciaccio, and Green

(2009), these findings suggest a need for nutrition education on the value of alternative grains

31

such as quinoa, amaranth, buckwheat, and millet and on ways in which these grains can be easily

included in the diet.

Nutrition education for Patients with Celiac Disease

Nutrition education is a very important component in counseling a patient with celiac

disease. Because nutrition therapy is the only treatment for celiac disease, it is imperative that

newly diagnosed patients consult with a registered dietitian (Case, 2005). Nutrition education

consultations with registered dietitians are typically centered around providing patients with

information on the gluten-free diet, and educating the patient on ways to identify gluten

containing foods, ways to read food labels, and methods for purchasing and preparing gluten-free

foods (Thompson, Dennis, Higgins, Lee, & Sharrett, 2005). These consultations can be very

effective in helping an individual feel confident and informed about adhering to the gluten-free

diet. Yet, many celiac disease patients do not consult with a registered dietitian for information

on the gluten-free diet and instead rely on various other sources for information. A recent survey

conducted in Canada found that 71% of celiac disease patients obtained information on the

gluten-free diet from books, support groups, from family or friends, or from the internet; 17%

patients received information from their physicians, and only 13% received information from a

registered dietitian (Case, 2005). In a similar survey of 234 celiac disease patients, 88% indicated

that attending a celiac disease support group provided them with the most useful information

about the gluten-free diet (Case, 2005).

To improve the effectiveness of nutrition education sessions with celiac disease patients,

it is recommended that registered dietitians recognize the emotional and psychological stress that

patients may have (Case, 2005). A great need exists for nutrition education focusing on ways to

diversify the standard gluten-free diet (Lee, Dave, Ciaccio, & Green, 2009). As suggested by

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Stevens and Rashid (2008) registered dietitians should recommend alternative grains such as

quinoa, buckwheat, amaranth, and millet to their patients as a means for enhancing the variety to

the diet. These naturally gluten-free grains can be used as a substitute for flours and cereals; they

are extremely rich in nutrients and can be purchased at relatively low cost at regular grocery

stores.

Nutrition education methods

As discussed above, nutrition education is considered to be extremely important for

individuals with celiac disease because of the many complications associated with the disease

that are directly related to the diet. Yet, studies on the effectiveness of nutrition education

methods or food sampling techniques in patients with celiac disease are lacking.

One published study has utilized food tasting as a method of nutrition education for older

adults without celiac disease (Manilla, Keller and Hedley, 2010). Three consecutive monthly

nutrition education displays incorporating food-tasting were created and displayed in a Senior

Center cafeteria. Individuals attending meals at the Senior Center were given the opportunity to

taste the two recipes that were mentioned on each display. After sampling the recipes,

participants were asked to complete a feedback form used to determine their interest in making

the recipes and whether or not having the opportunity to sample the recipes influenced their

interest.

The results showed that of the fifty-four completed feedback forms, 75.9% of the

participants indicated that they intended to prepare the recipes on their own and 70.4% indicated

that they would not have prepared the recipe if they were not given the chance to sample it

(Manilla, Keller, & Hedley, 2010). These results suggest that registered dietitians working with

older adults in a community setting should use food-tasting activities to help educate older adults

33

on important nutrition information. Allowing participants the opportunity to taste foods may help

increase eating enjoyment and increase the likelihood that they will be interested in purchasing,

preparing, and consuming the foods in the future (Manilla, Keller, & Hedley, 2010).

Therefore, the purpose of this study was to determine if using food tasting as a method of

nutrition education is more effective than a nutrition education method without food tasting in

increasing confidence and potential consumption of naturally gluten-free grains among

participants in celiac disease support groups.

34

Chapter III: Methodology

This chapter includes a description of the population and sample recruited for this study

and a description of the instrument and procedures used to collect data. Also, this chapter

provides an explanation of the data analysis procedures and a discussion of the methodological

limitations of the study. This study’s protocol was approved by in the fall of 2011 by the

University of Wisconsin-Stout Institutional Review Board.

Subject Selection and Description

Individuals participating in celiac disease support groups in the western Wisconsin and

Minneapolis-St. Paul metropolitan areas were recruited for this study during the summer of

2011. An email containing a description of the study was sent to all celiac disease support group

leaders in the western Wisconsin and Minneapolis-St. Paul metropolitan areas. Support group

leaders interested in participating in the study were asked to contact the researcher and provide a

schedule of their respective support group’s meeting dates and times. The support group leaders

were also asked to suggest a specific meeting date that was available for the researcher attend

and conduct the research.

Of the nine support groups contacted, four celiac disease support groups agreed to

participate in the study: the Anoka County Celiac Support Group, the St. Croix Valley Celiacs,

the Madison Area Gluten Intolerance Chapter (MAGIC), and the St. Cloud Celiac Support

Group. Membership among the four support groups varied. The largest support group was the

Anoka County support group with 180 members followed by the MAGIC group with 99

members, the St. Croix Valley support group with 55 members and finally the St. Cloud support

group with 50 members. Although support groups consisted of these members, usual attendance

at each monthly support group meeting was estimated by the support group leader to be 25% for

35

the MAGIC, St. Croix Valley, and St. Cloud support groups, and only 8% for the Anoka County

support group.

All members of each cooperating celiac disease support group were considered eligible to

participate in the study. However, members participated in support groups for various reasons.

Many members had celiac disease; however not all of them had a confirmed diagnosis of the

disease. Members of the support groups also included individuals who were gluten-intolerant,

spouses or parents of individuals with celiac disease or gluten-intolerance, and healthcare

providers wishing to obtain information about the gluten-free diet through the support groups.

Prior to beginning the study, the cooperating celiac disease support groups were

randomly assigned to one of two study groups: the control group or the experimental group. The

control group consisted of members from the Anoka County and the St. Cloud support groups

and the experimental group consisted of members from the St. Croix Valley and the MAGIC

support groups. The control and experimental groups were both asked to complete consent forms

and pre- and post-questionnaires, and to participate in a nutrition education presentation. The

only difference between the two groups was that the experimental group was given the

opportunity to sample the naturally gluten-free grains that were discussed in the presentation

whereas the control group did not have this opportunity.

Notification of recruitment of participants was presented through advertisements in the

support group’s newsletter. Once a date was confirmed for the conducting the research at the

support group’s meeting, the researcher asked the support group leader to include a description

of the study in the newsletters to inform the support group members of the study and request

their participation.

36

On the scheduled date for data collection at each site (see Appendix B), the researcher

provided an oral explanation of the study, and participants were asked to read and sign an

informed consent form in order to participate in the study. The consent form provided a detailed

description of the study, identified any potential risks and benefits that the participants may

endure throughout the study, described the time requirements for the study, explained how

confidentiality will be maintained, and provided an explanation of the rights of the participants to

withdraw from the study at any time. The consent form for the control group can be found in

Appendix C and the consent form for the experimental group can be found in Appendix D. A

different consent form was used for the experimental group to inform individuals of the certified

gluten-free product samples that would be offered to them for tasting as a part of the study.

Otherwise, the consent statements for the control and experimental groups were the same.

For children under the age of 18 to be allowed to participate, the signature of the child’s parent

or guardian was also required on the consent form. All individuals and, where applicable

parents/guardians, who signed the consent form were selected as participants in the research.

Instrumentation

Data were collected for this study through the use of a pre-questionnaire presented in

Appendix E, and post- questionnaires in for the control and experimental groups, presented in

Appendices F and G, respectively. These instruments were designed by the researcher

specifically for the purpose of this study. Both the pre- and post- questionnaires were designed to

ensure that the same parameters were able to be measured and analyzed for each research

objective. Both the pre-post-questionnaires were coded to match one another to ensure that they

were able to be analyzed and compared to one another.

37

The pre-questionnaire was the same for both the control and the experimental groups.

This instrument included basic demographic information such as the age, gender, person

responsible for the cooking and grocery shopping in the participant’s home, and a question to

determine whether or not the participant had a confirmed diagnosis of celiac disease. A

confirmed diagnosis of celiac disease was defined by a participant’s self-report of having had the

gold standard method for diagnosing the disease, which is a positive biopsy of the small

intestine. Medical record information was not requested or obtained. In addition, the pre-

questionnaire consisted of itemized questions to identify how often participants consumed

various naturally gluten-free grains and how confident participants felt in including the grains in

their diets. The grains listed on this questionnaire were millet, sorghum and brown rice.

Additional questions included on the questionnaire asked how often subjects included

each of the three grains in their diets each week using a non-parametric scale and how confident

the subjects felt in including each of the three grains in their diet using an ordinal scale.

The content of the post-questionnaire for the control group (Appendix F) was identical to

that of the pre-questionnaire, except the demographic information was excluded. For the

experimental group, the post-questionnaire was the same as the control group with the exception

of additional questions designed to ascertain if the participants sampled the naturally gluten-free

grains examined in the study (Appendix G).

Data Collection Procedures

The researcher attended a regular meeting of each cooperating support group to collect

data. Research methods consisted of administering a pre-questionnaire at the beginning of the

support group meeting, presenting a nutrition education presentation and then administering a

post-questionnaire at the conclusion of the meeting. The nutrition education presentation as well

38

as the pre-and post-questionnaires were designed by the researcher for the purpose of this study.

The content of the nutrition education contained information on common nutrient deficiencies

associated with celiac disease, a list of naturally gluten-free grains that can be included into the

gluten-free diet as well as a detailed description about the health benefits of each grain and tips

for preparing, purchasing and storing for each grain. The naturally gluten-free grains discussed

throughout the presentation included brown rice, millet, sorghum, quinoa, teff and amaranth.

At the beginning of each support group meeting, the researcher described the purpose of

the study and distributed consent forms to all individuals present. The researcher then collected

the consent forms. Members of the support group who chose not to sign the consent form were

not given pre-post questionnaires or food samples but were still given the opportunity to listen to

the nutrition education presentation. After consent forms were collected, the researcher handed

out the pre-questionnaires to each of the subjects who had signed the consent form.

To administer the questionnaires, the researcher asked the participants to complete the

questionnaires individually and to the best of their ability. The researcher allowed five to ten

minutes for the participants to complete each questionnaire and then collected the surveys and

placed them into a locked box.

At the control group sites, the researcher began the nutrition education presentation

which is outlined in Appendix H, immediately after the pre-questionnaires were collected. The

presentation lasted between 20-30 minutes. The presentation included information on common

nutrition deficiencies related to the gluten-free diet. In addition information was presented on six

naturally gluten-free grains: sorghum, brown rice, millet, quinoa, amaranth and teff. This content

included nutritional composition, ways in which the grains can help reduce nutrient deficiencies,

and ways in which the grains can be prepared and incorporated into the diet. Immediately

39

following the presentation, the post-questionnaire was distributed by the researcher to each

subject who had also signed the consent forms and completed the pre-questionnaires.

At the experimental group sites, the nutrition education presentation was conducted

following the pre-questionnaire in a similar manner as described above for the control group.

However, participants were given the opportunity during the nutrition education presentation to

sample a bread product prepared from each of three gluten-free grains discussed: sorghum,

brown rice and millet breads. After discussing each grain during the presentation, the researcher

handed out one small bread sample to each subject who had signed the consent form and invited

the subjects to sample the food. Subjects were offered each sample, but they were given the

option to decline to taste the products. After completing the nutrition education session and the

product sampling process, post-questionnaires were administered in the same manner as

described above for the control group.

Prior to the beginning each data collection session, the researcher cut the bread products

into small bite size samples and placed the samples into individual dixie cups. The bread

products were provided by the Green Bakery located in Colfax, Wisconsin. The Green Bakery is

a certified gluten-free bakery which ensures that all of its products will be certified gluten-free. A

detailed list of ingredients in the products can be found in Appendix I. The gluten-free product

samples were obtained from the Green Bakery pre-packaged and were not opened until the data

collection period at each experimental site. To prevent contamination, the researcher was the

only individual handling the gluten-free samples. The researcher followed standard hand

washing procedures and handled the products using a sterile knife, a sterile cutting board, and

clean dixie cups.

40

Data analysis

A number of statistical analyses were used in this study. The Statistical Program for

Social Sciences version 19.0 was used to analyze the data and statistical significance was

determined at probability values of less than 0.05.

A Mixed Method ANOVA test was used to analyze the first objective: to determine if a

nutrition education session including exposure to alternative gluten-free grains is more effective

than such a session without exposure to alternative grains in increasing participants’ confidence

to include alternative grains in their future diets. This test was utilized because both between

subjects and within subjects independent variables existed. The within subjects factor was the

pre-and post-questionnaires and the between subjects factor was the experimental and control

groups. The Mixed Method ANOVA test specially measured if there were differences in the

average confidence ratings between pre-and post-questionnaires (within subjects factor), if there

were differences in the average confidence ratings between the experimental and control group

(between subjects factor) and whether or not there was a differential effect in the average

confidence ratings between pre-and post-questionnaires depending on group membership in

either the experimental or control groups (interaction effect)Mann-Whitney and Wilcoxon tests

were used to analyze the second research objective: to determine if a nutrition education session

including exposure to alternative gluten-free grains is more effective than such a session without

exposure to alternative grains in increasing the likelihood that participants’ will include

alternative grains in their future diets. These non-parametric tests are used to analyze the

distributions between ranked scores. Mann-Whitney tests were used to analyze the independent

samples and measured if there were differences in the likelihood of consuming the naturally

gluten-free grains between the experimental and control groups as noted on the pre- and post-

41

questionnaires. Wilcoxon tests were used to analyze the two related samples and measured if

there were difference in the likelihood of consuming the naturally gluten-free grains for the

experimental and the control group between the pre-and post-questionnaires.

A Mixed Method ANOVA test was also used to analyze research objective number three:

to determine if participants in celiac disease support groups with a confirmed intestinal biopsy

diagnosis of celiac disease are more likely than participants without a confirmed diagnosis to

include alternative grains into their diets. This objective was examined to determine if

individuals who undergo an intestinal biopsy to diagnosis celiac disease rather than self-diagnose

themselves are more confident and more likely to include new grains in their diets. The evidence

from these results could be used as evidence as to why or why not receiving an intestinal biopsy

is important in celiac disease and if receiving an intestinal biopsy causes individuals to be more

confident and more likely to try new gluten-free foods. For this research objective, the within

subjects factor was the pre-and post-questionnaires; however the between subjects factor was the

diagnosed and undiagnosed groups. The Mixed Method ANOVA test specially measured if there

were differences in the average confidence ratings from the pre-questionnaire to the post-

questionnaire (within subjects factor), if there were differences in the average confidence ratings

between the diagnosed and the undiagnosed groups (between subjects factor) and whether or not

there was a differential effect in the average confidence ratings pre-and post- depending on group

membership in either the diagnosed or the undiagnosed groups (interaction effect).

Limitations

Several limitations were noted during this study. The first limitation related to the sample

of participants in the study. Additional variables may have existed within the sample that may

have skewed the results found. All individuals attending celiac disease support groups meetings

42

on the day of data collection were eligible to participate in the study. Among the support group

attendees were individuals with celiac disease, individuals who did not follow a gluten-free diet

such as spouses or parents of individuals with celiac disease, individuals who were following a

gluten-free diet for reasons other than for celiac disease, healthcare providers, and individuals

who were not diagnosed with celiac disease but claimed to be gluten-intolerant. Consequently,

the participants selected for the study may have had a wide range of knowledge or experience

with the gluten-free diet. The different reasons for attending the support group were considered

“uncontrolled variables” and may have therefore skewed the results. Individuals who were

diagnosed with celiac disease may have been more exposed and had a greater acceptance for

trying gluten-free food samples than the individuals who were attending the support group for

other reasons.

A second limitation to this study was that many individuals did not fully complete the

post-questionnaires. Of the 64 participants, 80% percent completed both the pre- and post-

questionnaires fully. If the survey would have been designed to be shorter or to be completed

online using Qualtrics, it is possible that a higher response rate would have been observed.

A third limitation to this study was that post-questionnaires were administered

immediately following the nutrition education presentation. The individuals may have over or

under reported their confidence and likelihood of including the grains discussed because the

researcher was present when the participants were asked to complete their post-questionnaires. In

addition, because the post-questionnaires were administered immediately following the

presentation, it was not possible to measure if the individuals made changes in their diets based

on the nutrition education that they received. Future research on this topic should consider

43

examining the effects of nutrition education involving taste testing over time to determine the

changes were made to the diet over time.

44

Chapter IV: Results

Within this chapter, the demographic information of the participants is reported.

Information pertaining to who does the grocery shopping and cooking within the participant’s

household, and participants with a confirmed diagnosis of celiac disease are described.

Additionally, mean confidence levels and the likelihoods of including millet, sorghum and brown

rice are presented. Lastly, statistical analyses of the differences in confidence levels and

likelihoods of including the three grains between the control and experimental groups and

between the diagnosed and undiagnosed groups are presented.

Demographic Characteristics of the Participants

Of the sixty-four participants who attended the celiac support group nutrition education

presentations and completed the pre- and post-questionnaires, 12% were males (n = 8), and 88%

were females (n = 56). The ages of the participants ranged from 10 to 87 years old. The mean

age of participants with standard deviation was 55.53 ± 18.17 years, with a median age of 58

years. Of the 64 total participants, 59% (n = 38) noted having a confirmed diagnosis of celiac

disease while 41% (n = 26) indicated that they did not. Of the 38 participants who reported a

confirmed diagnosis, 11% (n = 4) were males and 89% (n = 34) were females. Of the 26

participants who were undiagnosed, 15% (n = 4) were males and 85% (n = 22) were females. A

distribution of these demographics is presented in Table 2.

45

Table 2

Gender and Diagnosis Distribution of Participants (n = 64)

Gender Diagnosed Undiagnosed Total

Male 4 4 8

Female 34 22 56

Total 38 26 64

Cooking and Grocery Shopping Habits. The pre-questionnaires were used to describe

the frequencies of grocery shopping and cooking habits amongst participants. Most participants

indicated that they completed the cooking and grocery shopping in their households by

themselves. Of the 64 participants, 70.3 % (n = 45) indicated that they completed cooking tasks

by themselves, and 78.1 % (n = 50) indicated that they completed the grocery shopping by

themselves. A distribution of subjects by cooking habits is presented in Table 3 while a

distribution for grocery shopping habits is presented in Table 4.

46

Table 3

Distribution of Cooking Habits of Participants

Response Frequency

( n=64)

Percentage

(%)

Self 45 70.3

Spouse 4 6.3

Self and Spouse 10 15.6

Parents 2 3.1

Mother and Self 2 3.1

Mother 1 1.6

Table 4

Grocery Shopping Distribution of Participants

Response Frequency

( n = 64)

Percentage

(%)

Self 50 78.1

Spouse 4 6.3

Self and Spouse 5 7.8

Parents 3 4.7

Mother and Self 1 1.6

Mother 1 1.6

47

Confidence Ratings for Use of Alternative Grains

Questions pertaining to confidence of including millet, sorghum and brown rice were

presented as interval questions on a scale from 1 (not at all confident) to 7 (extremely confident).

Participants were asked to circle their rating of confidence for each grain identified on the

questionnaires. Analyses were run to compare the difference between confidence levels amongst

participants in the control and experimental group and amongst participants with and without a

confirmed celiac disease diagnosis. While participants in both the control and the experimental

groups participated in the nutrition education presentation on naturally gluten-free grains, only

participants in the experimental group were given the opportunity to sample naturally gluten-free

grains.

Confidence Ratings of Millet. The descriptive statistics for confidence in millet are

presented in Table 5. On average, the experimental group rated higher than the control group in

their confidence of including millet in their diets both pre and post; however, this difference was

not statistically higher, F(1,54) = 0.61, p > 0.05. Overall, post- confidence in using millet (M =

4.63) was higher than pre- confidence (M = 3.37) by 1.26 points, and these were significant

differences, F( 1,54) = 16.5, p< 0.05, ηp2= 0.23. The interaction effect was not significant,

F(1,54) = 0.15, p > 0.05.

48

Table 5

Average Confidence Ratings of Millet for Control and Experimental Groups

Control Group

( n = 20)

Experimental Group

(n = 36)

Overall

(n = 56)

Pre-Questionnaire 3.20 3.47 3.37

Post-Questionnaire 4.30* 4.81* 4.63

*Significant at the p<0.05 level, compared to pre-questionnaire

Mean confidence ratings for millet as indicated from the pre-and post-questionnaires

were also analyzed to determine if participants with a confirmed diagnosis of celiac disease were

more likely than participants without a confirmed diagnosis of the disease to increase their

confidence of including millet in their diet from the pre-to the post-questionnaire. These results

are presented in Table 6. The results were not found to be statistically higher, F(1,55) = 1.90, p >

0.05. On the other hand, overall post confidence ratings of using millet (M = 4.63) were on

average higher than pre confidence ratings (M = 3.37) by 1.26 points, and these were also

significant differences, F(1,54) = 17.22, p < 0.05, ηp2= 0.242. The interaction effect was also not

found to be significant, F(1,54) = 0.74, p > 0.05.

Table 6

Average Confidence Ratings of Millet for Diagnosed and Undiagnosed Participants

Diagnosed Group

(n = 33)

Undiagnosed Group

(n =23)

Overall

(n =56)

Pre-Questionnaire 3.00 3.91 3.37

Post-Questionnaire 4.45* 4.87* 4.63

*Significant at the p<0.05 level, compared to pre-questionnaire

49

Confidence Ratings of Sorghum. Table 7 below displays the mean confidence ratings

for the pre- and post-questionnaires for sorghum. The results indicate that there were no

differences between the control and the experimental group in their confidence ratings of

sorghum, F (1,55) = 0.20, p > 0.05. Overall, post confidence ratings for sorghum (M = 4.53)

were found to be higher than pre confidence ratings (M = 4.04); however this difference was not

significantly higher, F(1,55) = 2.39, p > 0.05, and no differences were found. Statistically

significant results were also not found between pre- or post-confidence ratings. Similarly,

significant results were not found for the interaction effect F(1,55) = 0.02, p > 0.05.

Table 7

Average Confidence Ratings of Sorghum for Control and Experimental Groups

Control Group

(n = 22)

Experimental Group

(n = 35)

Overall

(n =57)

Pre-Questionnaire 4.14 3.97 4.04

Post-Questionnaire 4.68 4.43 4.53

Mean confidence ratings of sorghum from pre-to post-questionnaire for diagnosed and

undiagnosed groups are presented in Table 8. Analyses show that overall ratings for the post-

questionnaire (M = 4.53) were not significantly higher than ratings from the pre-questionnaire (M

= 4.04) within the diagnosed or undiagnosed groups, F(1,55) = 2.45, p > 0.05. Similarly, no

statistically significant differences were found between participants in the diagnosed group than

the undiagnosed group, F(1,54) = 0.87, p > 0.05. No significant interaction effects F(1,55) =

0.04, p > 0.05 were found for the diagnosed and the undiagnosed groups or between the pre-and

post-questionnaires for confidence ratings of sorghum.

50

Table 8

Average Confidence Ratings of Sorghum for Diagnosed and Undiagnosed Participants

Diagnosed Group

(n = 34)

Undiagnosed Group

(n = 23)

Overall

(n =57)

Pre-Questionnaire 4.24 3.74 4.04

Post-Questionnaire 4.68 4.30 4.53

Confidence Ratings of Brown Rice. Table 9 presents the mean confidence ratings for

brown rice on the pre-and post-questionnaires for the control and experimental groups. The

results showed that the overall ratings for the post-questionnaire (M = 5.74), were not

significantly higher than ratings for the pre-questionnaire (M = 5.84), for neither the control nor

the experimental group, F(1,56) = 0.02, p > 0.05. Similarly, no statistically significant

differences were found between the control and the experimental groups in their confidence

ratings of brown rice, F(1,56) = 0.09, p > 0.05. No statistically significant results were found for

the interaction effect F(1,54) = 2.65, p > 0.05.

Table 9

Average Confidence Ratings of Brown Rice for Control and Experimental Groups

Control Group

(n =24)

Experimental Group

(n =34)

Overall

(n = 58)

Pre-Questionnaire 5.54 6.06 5.84

Post-Questionnaire 5.92 5.62 5.74

51

The mean confidence ratings for brown rice as indicated on pre-and post-questionnaires

are displayed below in Table 10 for participants in the undiagnosed and diagnosed groups. The

analysis showed that for both the overall confidence ratings on the post-questionnaires (M =

5.74) were not significantly higher than confidence ratings on the pre-questionnaire (M = 5.84),

F(1,56) = 0.18,p > 0.05. Similarly, no statistically significant results were found for confidence

ratings between the diagnosed and undiagnosed groups, F(1,56) = 1.00, p> 0.05, and no

significant interaction effects, were found, F(1,56) = 0.01, p > 0.05.

Table 10

Average Confidence Ratings of Brown Rice for Diagnosed and Undiagnosed Participants

Diagnosed Group

(n =36)

Undiagnosed Group

(n =22)

Overall

(n =58)

Pre-Questionnaire 5.69 6.06 5.84

Post-Questionnaire 5.61 5.95 5.74

Likelihood of Use of Alternative Grains

Questions pertaining to the likelihood of including millet, sorghum and brown rice were

presented as ordinal questions. Participants were asked to indicate how often they were likely to

consume the specific grains during the week. The options were as follows: never, 1-2 times per

week, 3-4 times per week and 5 of more times per week.

Likelihood of Inclusion of Millet. Table 11 displays the differences in the likelihood of

consumption of millet between the control and the experimental groups from both the pre-and

the post-questionnaires. Results of the analyses indicate that there was not a statistical difference

in the likelihood of including millet in the diet of the groups prior to the nutrition education

52

presentation as indicated in the pre-questionnaire (p > 0.05). From this data it can be concluded

that there is not a statistically significant difference between the control and the experimental

group’s likelihood of including millet prior to the nutrition education presentation.

However, statistically significant results were found on the post-questionnaires. Results

show that the experimental group was more likely to include millet in the diet than the control

group on the post-questionnaires (p < 0.05). The analyses indicate that the experimental group

had a statistically significant greater likelihood than the control group of including millet in their

diets after participating in the nutrition education presentation and sampling millet than before

the presentation.

Table 11

Mean Ranks of Including Millet in the Diet on Pre-and Post-Questionnaires

Control Group

(Mean Rank)

Experimental

Group

(Mean Rank)

Z

Pre-Questionnaire 30.13

( n = 26)

34.12

(n = 38)

-1.24

Post-Questionnaire 26.72

(n = 25)

33.90

(n = 37)

-2.20*

* Significant at the p<0.05 level

Participant’s responses to being more likely to include millet before or after the nutrition

education presentation on the pre-and-post-questionnaires were analyzed for both the control and

the experimental groups. For the control group, the results indicated a significant difference, (z =

53

-3.74, p < 0.05) suggesting that participation in the nutrition education session without the food

sampling components significantly altered participants likelihood to include millet in their diets.

As indicated in Table 12, no participants from the control group reported being more likely to

include millet prior to the nutrition education presentation, 14 participants from the control group

reported being more likely to include millet after the presentation and 11 participants from the

control group saw no change in their likelihood of including millet.

Similarly, the results from the experimental group also indicated a significant difference,

(z = -4.75, p < 0.05) suggesting that participation in the nutrition education session that includes

a food sampling component also significantly alters participants likelihood to include millet in

their diets. For the experimental group, one participant reported being less likely to include millet

after the presentation while 26 participants reported being more likely to include millet on the

post-questionnaire and 10 participants did not report a change in likelihood of including millet.

Table 12

Mean Ranks of Including Millet

Negative

Ranks

Negative

Mean

Ranks

Positive

Ranks

Positive

Mean

Ranks

Z

Control 0 0.00 14 7.50 -3.74*

Experimental 1 13.50 26 14.02 -4.75*

* Significant at the p<0.05 level

Likelihood of Inclusion of Sorghum. The differences in the likelihood of consumption

of sorghum between the control and the experimental groups from both the pre-and the post-

questionnaires were analyzed and are displayed below in Table 13. Analyses indicate that there

54

was not a statistically significant difference in the likelihood of including sorghum prior to the

nutrition education presentation in the diet of either group as indicated in the pre-questionnaire (p

> 0.05).

Similarly, no statistically significant results were found in the likelihood of consumption

of sorghum between the control and the experimental groups following the nutrition education

presentation (z = 0.05, p >0.05). This finding indicates that neither the control nor the

experimental group was more or less likely to include sorghum in their diet prior to or after the

nutrition education presentation.

Table 13

Mean Ranks of Including Sorghum in the Diet on Pre-and Post-Questionnaires

Control Group

(Mean Rank)

Experimental

Group

(Mean Rank)

Z

Pre-Questionnaire 33.90

( n =26)

31.54

(n = 38)

-0.57

Post-Questionnaire 33.90

( n = 25)

30.31

(n = 37)

-0.73

Participant’s likelihoods of including sorghum on the pre-and post-questionnaires for

both the control and the experimental groups were also examined. Table 14 displays the

differences in the likelihood of consumption of sorghum on the pre-and post-questionnaires for

55

the control group. Results suggest that participation in the nutrition education session without

the food sampling component significantly altered participants likelihood to include sorghum in

their diet (z = -2.84, p < 0.05). Only one participant from the control group reported being more

likely to include sorghum prior to the nutrition education presentation, 11 participants from the

control group reported being more likely to include sorghum after the presentation and 13

participants from the control group saw no change in their likelihood of including sorghum.

Similar results were also found for the experimental group. The results from the

experimental group also indicated a significant difference, (z = -2.60, p < 0.05) suggesting that

participation in the nutrition education session that includes a food sampling component also

significantly alters participants likelihood to include sorghum in their diets. Again, only one

participant indicated being more likely to include sorghum prior to the presentation, 16

participants indicated being more likely to include sorghum after the presentation and 18

indicated that their likelihood of including sorghum did not change.

Table 14

Mean Ranks of Including Sorghum

Negative

Ranks

Negative

Mean

Ranks

Positive

Ranks

Positive

Mean

Ranks

Z

Control 1 6.00 11 6.55 -2.84*

Experimental 3 12.00 16 9.63 -2.60*

* Significant at the p<0.05 level

Likelihood of Inclusion of Brown Rice. Differences between the control and the

experimental group’s responses to their indicated amount of inclusion of brown rice were

56

analyzed and are displayed in Table 15. Similar to the results found for sorghum, results indicate

no statistical difference in the likelihood of including brown rice in the diet prior to the nutrition

education presentation in either the control or the experimental groups (p > 0.05). Significant

results were also not found for the likelihood of consumption of brown rice between the control

and the experimental groups following the nutrition education presentation (p > 0.05).

Table 15

Mean Ranks of Including Brown Rice in the Diet on Pre-and Post-Questionnaires

Control Group

(Mean Rank)

Experimental

Group

(Mean Rank)

Z

Pre-Questionnaire 34.10

( n = 26)

31.41

( n = 38)

-0.60

Post-Questionnaire 32.19

(n =24)

28.50

( n =35)

-0.88

Mean rank of likelihood of including brown rice in the diet for pre-and post-

questionnaires are presented in Table 16. Analyses show no significant differences for the

control group, (z = -0.45, p > 0.05); or for the experimental group (z= -1.50, p > 0.05).

Participation in the nutrition education sessions with and without the food sampling components

did not significantly alter participant’s likelihood to include brown rice in their diets

57

Table 16

Mean Ranks of Including Brown Rice

Negative

Ranks

Negative

Mean

Ranks

Positive

Ranks

Positive

Mean

Ranks

Z

Control 3 3.00 2 3.00 -0.45

Experimental 9 8.33 5 6.00 -1.50

58

Chapter V: Discussion

This study examined the effects of nutrition education including exposure to alternative

gluten-free grains in increasing the likelihood and confidence of including alternative gluten-free

grains in the diet. This chapter includes a description of the limitations to the study, a discussion

of the results in comparison to previous research, a summary of the conclusions and

recommendations for future research.

Limitations

Several limitations were observed during this study. The first limitation observed was

that membership of the participating celiac disease support groups was not exclusive to

participants with a diagnosis of celiac disease. Many participants in this study attended support

group meetings for different reasons. A number of participants of this study did indeed have a

confirmed diagnosis of celiac disease; however some were merely gluten-intolerant, some had

family members with celiac disease and attended for their support, and others attended simply to

gain information about the gluten-free diet. Subsequently, many uncontrolled variables such as

knowledge and experience of the gluten-free diet existed which may have skewed the results.

A second limitation to this study was that a 100% response rate on pre-post

questionnaires was not obtained from the participants. The post-questionnaire was designed to be

printed doubled sided and because of the design, some of the participants did not complete the

back side. Subsequently, the response rate was lower than expected and only 80% of the

participants completed both the pre- and post-questionnaires fully.

A third limitation to this study was that post-questionnaires were administered

immediately following the nutrition education presentation while the researcher was still present.

Consequently, participants may have over or under reported their confidence and likelihood of

59

including the grains. In addition, participants were asked to self-report their intake and level of

confidence of including naturally gluten-free grains. Because the method of data collection relied

on self-report; inaccuracy or over or under-reporting may have existed. Another major limitation

to this study related to study and instrument design. The nature of the pre-and post-

questionnaires did not allow for actual increases in confidence or dietary changes to be

measured.

The last limitation noted was that the sample was not a good overall representative of the

celiac disease population. Individuals attending support groups are likely to be more motivated

than individuals whom do not attend support groups. Therefore, these participants may have

been more confident and more likely to incorporate new foods into their gluten-free diets than

individuals whom do not attend support groups. Additionally, individuals who attend support

groups may also have a greater knowledge base about the gluten-free diet than individuals who

do not attend support groups.

Conclusions

Given the limitations of the sample described above, certain demographic characteristics

appear to mimic that of the US population for celiac disease. The University of Chicago Celiac

Disease Center (2005), celiac disease affects 1% of the United States population, or

approximately 3 million individuals. Interestingly, The National Foundation for Celiac

Awareness (2012) reported 30% of individuals who are newly diagnosed with celiac disease are

over the age of sixty and the average age of diagnosis is between the ages of forty and fifty. The

mean age of the participants in this study was 55, with a median age of 58. This age value

correlates closely with the documented mean age of individuals with celiac disease in the United

States.

60

Similarly, the gender distribution of the celiac disease population in the United States is

also comparable to the present study. As discussed by Holmes, Catassi and Fasano (2009),

women are three times more likely to have celiac disease than men. The gender distribution of

the present study was comparable to this value as 88% of the participants of this study were

female and only 12% were male.

An interesting comparison also exists between the number of undiagnosed individuals

that participated in the present study and the average number of undiagnosed individuals in the

Unites States. In the present study, only 59% of the participants admitted to having a confirmed

diagnosis of celiac disease. Twenty-six percent of individuals in this study were undiagnosed. Of

the nearly 3 million individuals in the United States with celiac disease, an estimated 95% are

living with celiac disease and have not been diagnosed (The University of Chicago Celiac

Disease Center, 2005).

The demographics of this study also compare to a recent study conducted in Canada by

Manilla, Keller and Hedley (2010) on food sampling and nutrition education for older adults.

Although specific percentages and ages were not identified, participants in this study were all

over 55 years of age. The gender distribution was also similar, with 9.3% of the participant’s

males, 61 % females and 29.6% of the participants unidentified.

In addition to the demographics between the present study and the study conducted by

Manilla, Keller and Hedley (2010), the nutrition education implications of this study compare

closely to the results of the study conducted on nutrition education for elderly results. In this

study, 75.9% of the participants indicated that they intended to prepare the recipes on their own

and 70.4% indicated that they would not have prepared the recipe if they were not given the

61

chance to sample it (Manilla, Keller, & Hedley, 2010). The results of this study suggest that taste

testing is a cost-effective strategy to translate nutrition messages into dietary behaviors.

In a recent study conducted by Saturni, Ferretti & Bacchetti (2010), it was suggested that

recommending alternative grains in the diets of individuals is a promising area for nutrition

education, to combat nutrition complications, to increase variety of gluten-free food choices and

to increase compliance of individuals on the gluten-free diet. The results of this study confirm

this recommendation and suggest that education for celiac disease support group participants on

the nutritional benefits of millet, sorghum and brown may help increase confidence and

consumption of naturally gluten-free grains in the future. In the present study, participants who

had the opportunity to sample millet, sorghum and brown rice indicated being significantly more

confident in including millet in their diet following the nutrition education presentation than

participants who did not have the opportunity to sample the alternative grains.

Interestingly, the results of the present study found different results from a study

conducted by Lee, Dave, Ciaccio & Green (2009). The participants in the study conducted by

Lee, Dave, Ciaccio & Green, 2009 were given a list of eight gluten-free grains including: white

rice, brown rice, potato flour, oats, corn, buckwheat, quinoa, and millet to choose from to include

in their diets. The majority of the subjects chose to include brown rice into their diet; only one

person chose to include buckwheat; only one person also chose to include quinoa; and no one

chose millet. In the present study, millet was the grain that was found to be the most likely grain

for participants to include in their diets. Following the nutrition education presentation, 26

participants reported being more likely to include millet, 16 participants reported being more

likely to include sorghum and only five participants reported being more likely to include brown

rice after the nutrition education presentation (Lee, Dave, Ciaccio & Green (2009).

62

In the comparison between the likelihood of including grains in the diet between

participants in the control group that did not sample alternative grains and participants in the

experimental group who did sample the alternative grains, the participants in the experimental

group elicited a statistically significant greater likelihood of including millet in their diets after

participating in the nutrition education presentation. The results of this present study suggest that

increasing confidence and inclusion of millet in the diet may be achieved by participating in

either a nutrition education presentation that does or does not provide the opportunity to sample

alternative grains.

Statistically significant differences were also observed in participant’s confidence of

including millet into their diet from pre-questionnaire to post-questionnaire regardless of having

a confirmed diagnosis of celiac disease. Similar to differences amongst participants who did and

did not have the opportunity to sample the alternative grains, statistically significant results were

not observed for confidence of including sorghum or brown rice from pre- to post-questionnaire.

These results suggest that individuals who have confirmed diagnoses of celiac disease are more

confident in including millet in their diets following the nutrition education presentation than

those who do not have a confirmed diagnosis. Having a diagnosis of celiac disease however had

no effect on confidence of including sorghum or brown rice.

The results of this study suggest that a nutrition education presentation on naturally

gluten-free grains may increase participant’s confidence of including millet in the diet, likelihood

of including millet and likelihood of including sorghum regardless of having the opportunity to

sample alternative grains and regardless of having a diagnosis of celiac disease. Additionally

these results indicate that the nutrition education presentation that included food sampling was

more effective than the nutrition education presentation without food sampling in increasing the

63

likelihood of including millet in the diet. In addition, the results of this study suggest confidence

or likelihood of including brown rice was not affected by the nutrition education presentation.

Recommendations

Several recommendations for further research have been identified following the

completion of this research. These recommendations are suggested for use in future research to

obtain a greater degree of compliance, to measure dietary changes over time and to obtain a

clearer interpretation of the results that could better represent the celiac disease population.

The first recommendation for further research is to examine the effects of nutrition

education for celiac disease patients in a longitudinal study. The present study was not able to

measure the direct effects of the nutrition education presentation over time, and was therefore not

able to measure if actual dietary changes were made by participants. Future research on this topic

should consider contacting participants one or more months after the nutrition education

intervention to determine if participants did indeed make changes in their diet based on

participating in the nutrition education presentation.

Another important recommendation is to use a larger sample size when conducting

research. Although the total sample size of the present study was 64 participants, only four celiac

disease support groups were included in this study. Conducting research with more participants,

from a greater number of support groups would aid in developing more sound research that

would better represent the celiac disease population.

The third recommendation resulting from this study is to consider examining the effects

of nutrition education on individuals who do and do not attend support groups. As mentioned in

the limitations section, many of the participants of this study may have been more motivated than

individuals who do not attend support group meetings. In addition, many participants may have

64

already had previous knowledge about the grains that were presented from previous celiac

disease support group meetings. Examining the effects of nutrition education on individuals who

attend versus those who do not attend may help to shed light of the effectiveness and benefits of

attending a celiac disease support group.

Based on the results, another important recommendation would be to omit brown rice

from the study and focus on another naturally gluten-free grain that is not as well-known as

brown rice. Participants indicated using brown rice most often of the three grains prior to the

nutrition education presentation and no statistically significant results were found in changes in

confidence or inclusion of the grain. It is likely that a ceiling effect was present and that

participants had already rated their confidence and likelihood of including brown rice higher

prior to the nutrition education presentation. In addition, the study conducted by Lee, Dave,

Ciaccio, & Green (2009), found that when offered eight different gluten-free grains, the majority

of participants chose to include brown rice. Including a lesser known grain would allow for a

better analysis between the confidence and potential inclusion of alternative gluten-free grains.

Additionally, further research is to change the form of the naturally gluten-free food

sample and to offer the grains in “whole grain” form rather than in bread form. The millet,

sorghum and brown rice samples offered in this study were in a bread form making it difficult to

see what the grains looked like, felt like or tasted like intact and on their own. Additional

ingredients in the breads may have skewed participant’s tastes and perceptions of the grains

themselves.

The final recommendation for further research is to analyze the diets of participants with

celiac disease when including alternative gluten-free grains in their diets. Analyzing the actual

nutrient contents of diets with and without alternative gluten-free grains would allow for

65

alternative gluten-free grain intake recommendations to be made and to provide a clearer

explanation on how alternative gluten-free grains can affect and potentially benefit the diet and

health of individuals with celiac disease.

66

References

American Celiac Disease Alliance. (2012). Retrieved April 12, 2012, from:

http://americanceliac.org/celiac-disease/

Abel, E. K. (2010). The rise and fall of celiac disease in the United States. Journal of the History

of Medicine & Allied Sciences, 65(1), 81-105. doi: 10.1093/jhmas/jrp018

Alaedini, A., & Green, P. H. (2005). Narrative review: Celiac disease: Understanding a complex

autoimmune disorder. Annals of Internal Medicine, 142(4), 289-W-37.

"Allergies." Mayo Clinic: Health Information. Mayo Foundation for Medical Education and

Research, 20 Jan. 2012. Web. 1 Feb. 2012.

Ajzen, I. (1991). The theory of planned behavior. Organizational Behavior and Human Decision

Processes, 50, 179-211.

Beyer, P. (2008). Medical nutrition therapy for lower gastrointestinal tract disorders. In Mahan,

K., Escott-Stump, S. (Eds.), Krause's food and nutrition therapy (12th ed.; pp. 673-706). St.

Loius, Missouri: Saunders Elsevier.

Case, S. (2005). The gluten-free diet: How to provide effective education and resources.

Gastroenterology, 128(4), S128-S134.

Celiac Disease Foundation. (2011). Retrieved April 12, 2011, from: www.celiac.org/

Dugdale, D. “Allergic Reaction.” 2 May. 2010. University of Maryland Medical Center. Web. 5

Mar. 2012.

Dunn, L. (2002). Theories of learning. Oxford Center for Staff and Learning Development:

Learning and Teaching Briefing Paper Series, 1-3.

Dickey, W. (2008). Making oats safer for patients with coeliac disease. European Journal of

Gastroenterology & Hepatology, 20(6), 494-495.

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Dowd, B., & Walker-Smith, J. (1974). Samuel Gee, aretaeus, and the coeliac affection. British

Medical Journal, 2(5909), 45-47.

Hadjivassiliou, M., Grünewald, R., & Davies-Jones, G. (1999). Gluten sensitivity: A many

headed hydra. BMJ (Clinical Research Ed.), 318(7200), 1710-1711.

Holmes, G., Catassi, C. & Fasano, A. (2009). Fast Facts: Celiac Disease (2nd ed.). Oxford, UK:

Health Press Unlimited.

"Inflammatory Response." Mosby’s Medical Dictionary. 8th ed. 2008. Print.

Jackson-Allen, P. (2004). Guidelines for the diagnosis and treatment of celiac disease in

children. Pediatric Nursing, 30(6), 473-476.

Koskinen, O., Villanen, M., Korponay-Szabo, I., Lindfors, K., Maki, M., & Kaukinen, K. (2009).

Oats do not induce systemic or mucosal autoantibody response in children with coeliac

disease. Journal of Pediatric Gastroenterology & Nutrition, 48(5), 559-565.

Lee, A. R., Dave, E., Ciaccio, E. J., & Green, P. H. R. (2009). The effect of substituting

alternative grains in the diet on the nutritional profile of the gluten-free diet. Journal of

Human Nutrition & Dietetics, 22(4), 359-363. doi: 10.1111/j.1365-277X.2009.00970.x

Lee, A. R., Zivin, J., & Green, P. H. R. (2007). Economic burden of a gluten-free diet. Journal of

Human Nutrition & Dietetics, 20(5), 423-430. doi: 10.1111/j.1365-277X.2007.00763.x

Manilla, B., Keller, H. & Hedley, M (2010). Food tasting as nutrition education for older adults.

Canadian Journal of Dietetic Practice and Research, 71(2), 99-102.

Murray, J., Watson, T., Clearman, B., & Mitros, F. (2004). Effect of a gluten-free diet on

gastrointestinal symptoms in celiac disease. The American Journal of Clinical Nutrition, 79,

669-673.

National Foundation for Celiac Awareness. (2012). Celiac disease in the older adult.

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Rubio-Tapia, A., & Murray, J. A. (2010). Celiac disease. Current Opinion in Gastroenterology,

26(2), 116-122.

Saturni, L., Ferretti, G., & Bacchetti, T. (2010). The gluten-free diet: Safety and nutritional

quality. Nutrients, 2(1), 16-34. doi: 10.3390/nu2010016

Stevens, L., & Rashid, M. (2008). Gluten-free and regular foods: A cost comparison. Canadian

Journal of Dietetic Practice & Research, 69(3), 147-150.

The Food Allergy and Anaphylaxis Network. (2011). Retrieved April 12, 2012, from:

http://www.foodallergy.org/section/about-food-allergy

The University of Chicago Celiac Disease Center. (2005). Celiac disease facts and figures.

Chicago, IL.

Thompson, T., Dennis, M., Higgins, L. A., Lee, A. R., & Sharrett, M. K. (2005). Gluten-free diet

survey: Are Americans with coeliac disease consuming recommended amounts of fibre,

iron, calcium and grain foods? Journal of Human Nutrition and Dietetics: The Official

Journal of the British Dietetic Association, 18(3), 163-169.

Van den Broeck, H.,C., de Jong, H.,C., Salentijn, E. M. J., Dekking, L., Bosch, D., Hamer, R. J.,

& Smulders, M. J. M. (2010). Presence of celiac disease epitopes in modern and old

hexaploid wheat varieties: Wheat breeding may have contributed to increased prevalence of

celiac disease. TAG.Theoretical and Applied Genetics.Theoretische Und Angewandte

Genetik, 121(8), 1527-1539.

Wardlaw, G., & Hampl, J. (2007). Perspectives in nutrition (7th ed.). New York, NY: McGraw

Hill.

69

Appendix A: Allowed, Questionable, and Toxic Grains, Starches and Fours

Allowed, Questionable, and Toxic Grains, Starches and Flours for a Gluten-Free Diet Toxic Grains, Starches, and

Flours Not Allowed

Allowed Grains, Starches,

and Flours

Questionable Ingredients

Barley Arrowroot Dextrin-may contain wheat

Bran Amaranth Flavorings

Bulgar Buckwheat Modified food starch

Couscous Flax “Starch” in pharmaceuticals

Durum flour

Einkorn

Emmer

Farina

Farro

Gluten, gluten flour

Graham flour

Kamut

Malt, malt extract, malt

syrup

Oats, oat bran, oat syrup

Orzo

Semolina

Spelt

Triticale

Corn (maize)

Legume flours

Millet

Montiana

Nut flours (almond,

hazelnut, pecan)

Quinoa

Rice (brown, white, wild,

Basmati)

Rice bran

Potato starch, potato flour

Sago

Seed flours (sesame)

Sorghum

Soy (soya)

Unidentified hydrolyzed

plant proteins

Hydrolyzed vegetable

protein

70

Wheat germ, wheat starch,

wheat bran

Tapioca

Teff (ref)

71

Appendix B: Schedule of Data Collection at Cooperating Support Groups

Study Title: Using Nutrition Education Methods to Increase the Consumption of Naturally

Gluten-free Grains in the Diets of Individuals with Celiac Disease

Support Group Schedule

Anoka County Celiac Disease Support Group o Location: Grace Lutheran Church

13655 Round Lake Blvd Andover, MN o Saturday, January 14th; 11:00 AM

Madison Area Gluten Intolerance Chapter (M.A.G.I.C) o Location: Prairie Park Apartments

6530 Schroeder Road Madison, WI o Date: Saturday, February 11th; 10:00 AM

St. Croix Valley Celiac Disease Support Group o Location: Family Fresh Market

2351 Coulee Road Hudson, WI o Date: Monday, February 11th; 6: 30 PM

St. Cloud Support Group o Location: St. Cloud Public Library

1300 West Saint Germain Street St. Cloud, MN o Date: Tuesday, April 3rd; 6: 30 PM

72

Appendix C: Consent Form: Control Group

Consent to Participate In UW-Stout Approved Research

Title: Using Nutrition Education Methods to Increase the Consumption of Naturally Gluten-free Grains in the Diets of Individuals with Celiac Disease

Investigator: Shannon Herrick Research Sponsor: Dr. Esther Fahm herricks6839@my.uwstout.edu fahme@uwstout.edu 262-443-3944 715-232-2550

Description:

This study aims to determine which mode of nutrition education is most effective in increasing celiac disease support group participant’s consumption of naturally gluten-free grains. All celiac disease support group participants are invited to participate in this study. Risks and Benefits:

There is little risk in the participation in this study. During this study, you will be asked to complete a pre and post questionnaire and will be asked to participate in a nutrition education presentation on naturally gluten-free grains. On the questionnaire, you will be asked questions about your age, gender, current knowledge and consumption of naturally gluten-free grains and whether or not you have received a confirmed diagnosis of celiac disease from your medical provider. To keep your identity private, you will NOT include your name or any related information (address, ID number, ect.) on the papers. The results of this study will be used to help nutrition educators and celiac disease support group leaders design nutrition education programs that are effective in increasing healthy behavior changes. In addition, the nutrition education presentation will expose participants to information on gluten-free grains. Special Populations:

If you are under 18 you are eligible to participate in this study if consent is provided by your parent or guardian. All participants attending the celiac disease support groups who volunteer to participate and provide signed consent will be selected to participate in this study.

Time Commitment and Payment:

The time it takes to complete this study is short and will be completed in the time allotted for the celiac disease support group meeting. You will be asked to complete a short, eleven-question pre-questionnaire prior to the nutrition education presentation, which will take 5 minutes of your time. After the pre-questionnaire is completed you will be asked to participate in a 20-30 minute nutrition education presentation. Following the presentation you will be asked to complete a short, nine-question post-questionnaire, which will again take only 5 minutes of your time.

Confidentiality:

73

You will NOT include your name or any related information (address, ID number, ect) on the papers distributed. The pre and post questionnaires will be coded using a number coding system to allow for the two documents to be matched and analyzed following the study. We do not believe that you can be identified from any of this information. This consent form will not be kept with any of the other documents completed with this project. Right to Withdraw:

Participation in this study is completely voluntary. If at any time during the study you wish you withdraw from the study you are welcomed to do so without receiving any consequences. However, should you complete and return the pre and post questionnaires and then wish to withdraw from the study you will be unable to do so because there will be no way to identify your questionnaire. IRB Approval:

This study has been reviewed and approved by The University of Wisconsin-Stout's Institutional Review Board (IRB). The IRB has determined that this study meets the ethical obligations required by federal law and University policies. If you have questions or concerns regarding this study please contact the Investigator or Advisor. If you have any questions, concerns, or reports regarding your rights as a research subject, please contact the IRB Administrator. Investigator: Shannon Herrick IRB Administrator

262-443-3944 Sue Foxwell, Director, Research Services herricks6839@my.uwstout.edu 152 Vocational Rehabilitation Bldg. UW-Stout Advisor: Dr. Esther Fahm Menomonie, WI. 54724 715-232-2550 715-232-2477 fahme@uwstout.edu foxwells@uwstout.edu

74

Statement of Consent:

By signing this consent form you agree to participate in the project entitled, “Using Nutrition Education Methods to Increase the Consumption of Naturally Gluten-free Grains in the Diets of Individuals with Celiac Disease.” _________________________________________________ Signature Date _________________________________________________ Signature of parent or guardian Date (If under 18 years of age)

75

Appendix D: Consent Form: Experimental Group

Consent to Participate In UW-Stout Approved Research

Title: Using Nutrition Education Methods to Increase the Consumption of Naturally Gluten-free Grains in the Diets of Individuals with Celiac Disease

Investigator: Shannon Herrick Research Sponsor: Dr. Esther Fahm herricks6839@my.uwstout.edu fahme@uwstout.edu 262-443-3944 715-232-2550

Description:

This study aims to determine which mode of nutrition education is most effective in increasing celiac disease support group participant’s consumption of naturally gluten-free grains. All celiac disease support group participants are invited to participate in this study. Risks and Benefits:

There is little risk in the participation in this study. During the presentation you will have the option to sample gluten-free products. These products have been provided by the Green Bakery and are certified gluten-free products. You will have the option to not sample the products if you wish to do so. In addition, you will also be asked to complete a pre and post questionnaire and will be asked to participate in a nutrition education presentation on naturally gluten-free grains during the study. On the questionnaire, you will be asked questions about your age, gender, current knowledge and consumption of naturally gluten-free grains and whether or not you have received a confirmed diagnosis of celiac disease from your medical provider. To keep your identity private, you will NOT include your name or any related information (address, ID number, ect.) on the papers. The results of this study will be used to help nutrition educators and celiac disease support group leaders design nutrition education programs that are effective in increasing healthy behavior changes. In addition, the nutrition education presentation will expose participants to information on gluten-free grains. Special Populations:

If you are under 18 you are eligible to participate in this study if consent is provided by your parent or guardian. All participants attending the celiac disease support groups who volunteer to participate and provide signed consent will be selected to participate in this study.

Time Commitment and Payment:

The time it takes to complete this study is short and will be completed in the time allotted for the celiac disease support group meeting. You will be asked to complete a short, eleven-question pre-questionnaire prior to the nutrition education presentation, which will take 5 minutes of your time. After the pre-questionnaire is completed you will be asked to participate in a 20-30 minute nutrition education presentation. Following the presentation you will be asked to complete a short, fifteen-question post-questionnaire, which will again take only 5 minutes of your time.

76

Confidentiality:

You will NOT include your name or any related information (address, ID number, ect) on the papers distributed. The pre and post questionnaires will be coded using a number coding system to allow for the two documents to be matched and analyzed following the study. We do not believe that you can be identified from any of this information. This consent form will not be kept with any of the other documents completed with this project. Right to Withdraw:

Participation in this study is completely voluntary. If at any time during the study you wish you withdraw from the study you are welcomed to do so without receiving any consequences. However, should you complete and return the pre and post questionnaires and then wish to withdraw from the study you will be unable to do so because there will be no way to identify your questionnaire. IRB Approval:

This study has been reviewed and approved by The University of Wisconsin-Stout's Institutional Review Board (IRB). The IRB has determined that this study meets the ethical obligations required by federal law and University policies. If you have questions or concerns regarding this study please contact the Investigator or Advisor. If you have any questions, concerns, or reports regarding your rights as a research subject, please contact the IRB Administrator. Investigator: Shannon Herrick IRB Administrator

262-443-3944 Sue Foxwell, Director, Research Services herricks6839@my.uwstout.edu 152 Vocational Rehabilitation Bldg. UW-Stout Advisor: Dr. Esther Fahm Menomonie, WI. 54724 715-232-2550 715-232-2477 fahme@uwstout.edu foxwells@uwstout.edu

77

Statement of Consent:

By signing this consent form you agree to participate in the project entitled, “Using Nutrition Education Methods to Increase the Consumption of Naturally Gluten-free Grains in the Diets of Individuals with Celiac Disease.” _________________________________________________ Signature Date _________________________________________________ Signature of parent or guardian Date (If under 18 years of age)

78

Appendix E: Pre-Questionnaire

Naturally Gluten-Free Grains Pre-Questionnaire Study Title: Using Nutrition Education Methods to Increase the Consumption of Naturally

Gluten-free Grains in the Diets of Individuals with Celiac Disease

1. What is your age? ________ years 2. What is your gender? Check one

______ Male ______ Female 3. Who Does the Cooking in your house?

________________________________________________

4. Who Does the Grocery Shopping in your

house?________________________________________

5. Have you been diagnosed with celiac disease by your medical provider? Please choose the best answer

_____Yes, I received a small intestine biopsy to confirm celiac disease _____No, I did not receive a small intestine biopsy to confirm celiac disease

6. On average, how often do you include Millet in your diet each week?

_____Never _____1-2 times per week _____3-4 times per week _____5 or more times per week

7. How confident do you feel in including Millet in your diet? 1 2 3 4 5 6

7

Not at all confident Extremely confident 8. On average, how often do you include Sorghum in your diet each week?

_____Never _____1-2 times per week _____3-4 times per week _____5 or more times per week

9. How confident do you feel in including Sorghum in your diet?

1 2 3 4 5 6

7

Not at all confident Extremely confident

10. On average, how often do you include Brown Rice in your diet each week?

_____Never _____1-2 times per week _____3-4 times per week _____5 or more times per week

79

11. How confident do you feel in including Brown Rice in your diet?

1 2 3 4 5 6

7

Not at all confident Extremely confident

80

Appendix F: Post-Questionnaire: Control Group

Naturally Gluten-Free Grains Post-Questionnaire Study Title: Using Nutrition Education Methods to Increase Consumption of Naturally

Gluten-free Grains in the Diets of Individuals with Celiac Disease

1. After viewing the presentation, and assuming that you like millet, how often do

you plan on including Millet in your diet each week?

_____Never _____1-2 times per week _____3-4 times per week _____5 or more times per week

2. How confident are you that you will actually include the amount of Millet you

specified in question number 1 in your diet?

1 2 3 4 5 6

7

Not at all confident Extremely confident 3. How confident are you that you will actually include any amount of Millet in

your diet?

1 2 3 4 5 6

7

Not at all confident Extremely confident 4. After viewing the presentation, and assuming that you like sorghum, how often

do you plan on including Sorghum in your diet each week?

_____Never _____1-2 times per week _____3-4 times per week _____5 or more times per week

5. How confident are you that you will actually include the amount of

Sorghum you specified in question number 4 in your diet?

1 2 3 4 5 6

7

Not at all confident Extremely confident 6. How confident are you that you will actually include any amount of

Sorghum in your diet?

1 2 3 4 5 6

7

Not at all confident Extremely confident

81

7. After viewing the presentation, and assuming that you like brown rice, how often

do you plan on including Brown Rice in your diet each week?

_____Never _____1-2 times per week _____3-4 times per week _____5 or more times per week

8. How confident are you that you will actually include the amount of Brown

Rice you specified in question number 7 in your diet?

1 2 3 4 5 6

7

Not at all confident Extremely confident

9. How confident are you that you will actually include any amount of Brown

Rice in your diet?

1 2 3 4 5 6

7

Not at all confident Extremely confident

Thank you for your time!

Please Return this Questionnaire to the Researcher

82

Appendix G: Post-Questionnaire: Experimental Group

Naturally Gluten-Free Grains Post-Questionnaire Study Title: Using Nutrition Education Methods to Increase the Consumption of Naturally

Gluten-free Grains in the Diets of Individuals with Celiac Disease

1. Did you sample the Millet product?

_____ Yes _____No

2. If you tasted the Millet product, how much did you like how it tasted?

1 2 3 4 5 6

7

Not at all A Lot

3. After viewing the presentation, how often do you plan on including Millet in

your diet each week?

_____Never _____1-2 times per week _____3-4 times per week _____5 or more times per week

4. How confident are you that you will actually include the amount of Millet you

specified in question number 3 in your diet?

1 2 3 4 5 6

7

Not at all confident Extremely confident

5. How confident are you that you will actually include any amount of Millet in

your diet?

1 2 3 4 5 6

7

Not at all confident Extremely confident

6. Did you sample the Sorghum product?

_____ Yes _____No

7. If you tasted the Sorghum product, how much did you like how it tasted?

1 2 3 4 5 6

7

Not at all A Lot 8. After viewing the presentation, how often do you plan on including

Sorghum in your diet each week?

_____Never

83

_____1-2 times per week _____3-4 times per week _____5 or more times per week

9. How confident are you that you will actually include the amount of

Sorghum you specified in question number 8 in your diet?

1 2 3 4 5 6

7

Not at all confident Extremely confident

10. How confident are you that you will actually include any amount of

Sorghum in your diet?

1 2 3 4 5 6

7

Not at all confident Extremely confident

11. Did you sample the Brown Rice product?

_____ Yes _____No

12. If you tasted the Brown Rice product, how much did you like how it tasted?

1 2 3 4 5 6

7

Not at all A Lot 13. After viewing the presentation, how often do you plan on including Brown

Rice in your diet each week?

_____Never _____1-2 times per week _____3-4 times per week _____5 or more times per week

14. How confident are you that you will actually include the amount of Brown

Rice you specified in question number 13 in your diet?

1 2 3 4 5 6

7

Not at all confident Extremely confident

15. How confident are you that you will actually include any amount of Brown

Rice in your diet?

84

1 2 3 4 5 6

7

Not at all confident Extremely confident

Thank you for your time!

Please Return this Questionnaire to the Researcher

85

Appendix H: Nutrition Education Presentation

Slide 1

Presented by:Shannon Herrick

University of Wisconsin-Stout

Slide 2

Introduction to the Study Nutrient Deficiencies & Celiac Disease Grains & Gluten-Free Grains Nutrients & Gluten-Free Grains Preparing Gluten-Free Grains Shopping for Gluten-Free Grains Conclusion Questions

Outline

Slide 3

Purpose of Study

This study aims to determine which mode of nutritional education is most effective in increasing celiac disease support group participant’s consumption of naturally gluten-free grains. All celiac disease support group participants are invited to participate in this study.

Introduction

85

Appendix H: Nutrition Education Presentation

Slide 1

Presented by:Shannon Herrick

University of Wisconsin-Stout

Slide 2

Introduction to the Study Nutrient Deficiencies & Celiac Disease Grains & Gluten-Free Grains Nutrients & Gluten-Free Grains Preparing Gluten-Free Grains Shopping for Gluten-Free Grains Conclusion Questions

Outline

Slide 3

Purpose of Study

This study aims to determine which mode of nutritional education is most effective in increasing celiac disease support group participant’s consumption of naturally gluten-free grains. All celiac disease support group participants are invited to participate in this study.

Introduction

86

Slide 4 Participation

Pre Questionnaire 20-30 minute presentation Post Questionnaire

Children Under 18 Must obtain signed consent from parent/guardian

Confidentiality Do not write your name on pre/post questionnaire

Right to Withdraw Participation in this study is completely voluntary Can withdraw from the study at any time

Slide 5

Lining of the small intestine is damaged

Associated with Nutrient Deficiencies Less absorption of vitamins and minerals Less absorption of calcium and vitamin D

GI symptoms of celiac disease may be associated with the loss of fat soluble nutrients Vitamins A, D, E and K

Celiac Disease

Slide 6

Common Nutrient Deficiencies in Celiac Disease

Fiber Calorie/Protein Vitamin D Vitamin B12 Folic Acid Iron

Nutrient Deficiencies

Slide 7

Protein-Muscle development, Growth Folate- Cell development, important for women

during pregnancy Fiber- Digestion, weight control, cholesterol health

and heart disease prevention Calcium-Bone Growth Iron-Growth, reproduction, wound healing, fight

infection

Importance of the Nutrients

87

Slide 8

Vitamin A-Bone Growth, Vision, Fight infections Vitamin D-Bone Growth Vitamin E-Immune system, Protect cells from

damage Vitamin K-Blood Clotting, Deficiency can result in

bleeding problems

Importance of these Nutrients

Slide 9

AKA Cereals

Edible seeds or grains of the grass family Wheat and rice are the most common

Account for over 50% of the worlds cereal production

What are Grains

Slide 10

Whole Grains

Must have all three layers of the grain: Outer Bran (Fiber) Endosperm Inner Germ (Vitamins

and Minerals)

Slide 11

When grains are refined, everything is removed except the

endosperm (ie. white bread & rice) Loses nutrients Cooks faster

Still can be easy to prepare Most cook in less than 1 hour Boil water in pot, stir once, Enjoy

Diets rich in whole grains have been found to decrease: Heart disease Diabetes Obesity Cancer

What are Whole Grains

88

Slide 12

More than rice, corn and potatoes

Lacking in nutrients, flavor, taste and imagination Ancestors had a varied diet

Native American consumed 1,000 different types of plants Gluten-Free Grains AKA “Ancient Grains”

Brown Rice Millet Sorghum Quinoa Teff Amaranth

Gluten-Free Grains

Slide 13

Loaded with Nutrients, Taste and Flavor Gluten- free grains are important nutrients in the

diet Contain vitamins, minerals, protein and fiber Higher in protein and lower in fat

Gluten-Free Grains

Slide 14

Only the outer hull is removed

The bran layer exists which holds all the nutrients Major Nutrients

Niacin Vitamin B6 Magnesium Vitamin E

Brown Rice

Slide 15

Endless Possibilities! May take longer than white rice to cook

Prepare extra and freeze Instant brown rice exists

Substitute brown rice for white rice Stir fry’s, Taco Night, Casseroles

Enjoy with beans, poultry or beef Sweeten and enjoy as rice pudding

Preparing Brown Rice

89

Slide 16

2 ½ cups Brown Rice: 1 cup Water

Bring rice and water to a boil Decrease heat to low and simmer/covered Simmer until most liquid has been absorbed

40-50 minutes

Yields: 2 ½ cups

Preparing Brown Rice

Slide 17

Cereal Grass Most “Ancient” Grain

Dietary staple in Asian and African Regions Old dietary staple in Italy before corn was introduced

Small yellowish kernels Sweet, corn-like flavor As simple to cook as rice

Can be made into either sweet or savory dishes

Millet

Slide 18

Protein Rich! Calcium Magnesium Potassium Phosphorus Antioxidants

Millet Nutrition Facts

Slide 19

2 ½ cups Millet: 1 cup Water

Bring millet and water to a simmer Decrease heat to low and simmer/covered Simmer until most liquid has been absorbed

25-30 minutes

Yields: 3 cups

Preparing Millet

90

Slide 20

Major grain in semi-arid tropics in Africa, India and

South America Chewy, dense texture Sorghum is consumed in various forms around the

world: baked bread, porridge, tortillas, and in alcoholic and non-alcoholic beverages (malted)

Sorghum Flour: Made from grass that is ground: neutral taste, pale

color: perfect for baked goods

Sorghum

Slide 21

Excellent source of starch, fiber & protein

Not as high in protein as other grains Fat soluble vitamins: D, E and K Antioxidants

Inhibit tumor development

Sorghum

Slide 22

Very Versatile!

Boiled like rice Popped like popcorn Malted like barley for beer Baked like wheat in breads

Preparing Sorghum

Slide 23

Heat a deep-bottomed vessel with 1 tbsp. of cooking

oil and let it smoke. Reduce heat and add 2 oz. of sorghum grain Cover the vessel with a lid and allow the grains to

pop Serve with a light sprinkling of

salt or cayenne pepper.

Preparing Sorghum

91

Slide 24

Quinoa

Teff

Amaranth

Additional Gluten-Free Grains

Slide 25

Pronounced “Keen-wah” Super Grain Known as the “Mother Grain” in South American Now cultivated in North American Rocky Mountains Mild, nutty flavor Takes about 10-15 minutes to cook

1/2 the time of rice Use in place of rice in cereals, main dishes, soups, salads

and desserts Top Quinoa with black beans, salsa, avocado, shredded

romaine and corn

Quinoa

Slide 26

Nutrients:

Higher in unsaturated (healthy) fats and lower in Carbohydrates than most grains

Contains All 8 Amino Acids = Complete Protein Fiber Calcium Iron Phosphorus

Quinoa

Slide 27

2 cups Quinoa: 1 cup Water or Broth

Bring Quinoa and water to a Boil Decrease heat to low and simmer/covered Simmer until most liquid has been absorbed

12-15 minutes Let stand 5 minutes

Yields: 3 cups

Preparing Quinoa

92

Slide 28

Originated in Ethiopia Mild nutty, sweet flavor Very small beige seeds Available in whole grain or flour form

Teff

Slide 29

Nutrients

High quality protein Good source of Calcium and iron

5 times richer in calcium, iron and potassium than any other grain

Fiber Prepare

Serve as a breakfast porridge-top with fruit and maple syrup

Use as a thickening agent in soups/stews

Teff

Slide 30

3 cups Teff: 1 cup Water

Bring water to a boil Sprinkle in Teff grains Simmer, uncovered Stir frequently until mixture

has thickened 15-20 minutes

Yields: 2 ¾ cups

Preparing Teff

Slide 31

Technically not a “grain”

Seed of an Herb Considered sacred by the Aztecs in 15th century Staple food of the Incas Loaded with protein, fiber and iron Pleasant, nutty flavor Nutrients

High in Protein and Fiber Calcium, Iron, Potassium, Phosphorus and Vitamins A

and E

Amaranth

93

Slide 32

3 cups Amaranth: 1 cup Water or Broth

Bring Amaranth and water to a Boil Decrease heat to low and simmer/covered Simmer until most liquid has

been absorbed 20-25 minutes

Yields: 3 cups

Preparing Amaranth

Slide 33

Grains in Bulk Bins may not be Gluten-Free

Order Online www.bobredmill.com www.mannaharvest.net

Gluten-free sections of stores Storage

The germ contains oil-may becomerancid

Store in air-tight container Cool, dry place

Make a double batch Keeps in fridge for up to 3 days Keeps in freezer for up to 4 months

Gluten-Free Grains Shopping Tips

Slide 34

Many nutrient deficiencies are associated with celiac

disease and the gluten-free diet

Gluten-free grains do exist

Gluten-free grains are packed with nutrients, are delicious and are easy to prepare

Conclusion

Slide 35

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Appendix I: Green Bakery Samples: List of Ingredients

Study Title: Using Nutrition Education Methods to Increase the Consumption of Naturally

Gluten-free Grains in the Diets of Individuals with Celiac Disease

Gluten-Free Food Sample Provider:

The Green Bakery

N9564 County Road G Colfax, WI 54730

Contact Information:

Bakery Owner: Ann Woods woods@organic.org http://greenbakery.net/home

Samples Provided:

All samples provided are gluten-free, vegan, dairy free, nut free, soy free and egg

free

Sorghum Bread

Ingredients:

Flour (Organic Sorghum, Organic White Rice, Organic Potato Starch), Water, Organic Cane Sugar, Organic Olive Oil, Yeast, Xanthan Gum, Organic Apple Cider Vinegar, Salt

Millet Bread

Ingredients:

Flour (Organic Millet, Organic Brown Rice, Organic Tapioca), Water, Organic Flax Seeds, Organic Millet Seeds, Organic Olive Oil, Yeast, Organic Cane Sugar, Xanthan Gum, Organic Apple Cider Vinegar, Salt

Basic Brown Bread

Ingredients:

Flour (Organic Brown Rice, Potato Starch, Organic Tapioca), Water, Organic Flax, Organic Raisins, Organic Olive Oil, Yeast, Xanthan Gum, Salt, Organic Apple Cider Vinegar

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Slide 4 Participation

Pre Questionnaire 20-30 minute presentation Post Questionnaire

Children Under 18 Must obtain signed consent from parent/guardian

Confidentiality Do not write your name on pre/post questionnaire

Right to Withdraw Participation in this study is completely voluntary Can withdraw from the study at any time

Slide 5

Lining of the small intestine is damaged

Associated with Nutrient Deficiencies Less absorption of vitamins and minerals Less absorption of calcium and vitamin D

GI symptoms of celiac disease may be associated with the loss of fat soluble nutrients Vitamins A, D, E and K

Celiac Disease

Slide 6

Common Nutrient Deficiencies in Celiac Disease

Fiber Calorie/Protein Vitamin D Vitamin B12 Folic Acid Iron

Nutrient Deficiencies

Slide 7

Protein-Muscle development, Growth Folate- Cell development, important for women

during pregnancy Fiber- Digestion, weight control, cholesterol health

and heart disease prevention Calcium-Bone Growth Iron-Growth, reproduction, wound healing, fight

infection

Importance of the Nutrients

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Slide 8

Vitamin A-Bone Growth, Vision, Fight infections Vitamin D-Bone Growth Vitamin E-Immune system, Protect cells from

damage Vitamin K-Blood Clotting, Deficiency can result in

bleeding problems

Importance of these Nutrients

Slide 9

AKA Cereals

Edible seeds or grains of the grass family Wheat and rice are the most common

Account for over 50% of the worlds cereal production

What are Grains

Slide 10

Whole Grains

Must have all three layers of the grain: Outer Bran (Fiber) Endosperm Inner Germ (Vitamins

and Minerals)

Slide 11

When grains are refined, everything is removed except the

endosperm (ie. white bread & rice) Loses nutrients Cooks faster

Still can be easy to prepare Most cook in less than 1 hour Boil water in pot, stir once, Enjoy

Diets rich in whole grains have been found to decrease: Heart disease Diabetes Obesity Cancer

What are Whole Grains

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Slide 12

More than rice, corn and potatoes

Lacking in nutrients, flavor, taste and imagination Ancestors had a varied diet

Native American consumed 1,000 different types of plants Gluten-Free Grains AKA “Ancient Grains”

Brown Rice Millet Sorghum Quinoa Teff Amaranth

Gluten-Free Grains

Slide 13

Loaded with Nutrients, Taste and Flavor Gluten- free grains are important nutrients in the

diet Contain vitamins, minerals, protein and fiber Higher in protein and lower in fat

Gluten-Free Grains

Slide 14

Only the outer hull is removed

The bran layer exists which holds all the nutrients Major Nutrients

Niacin Vitamin B6 Magnesium Vitamin E

Brown Rice

Slide 15

Endless Possibilities! May take longer than white rice to cook

Prepare extra and freeze Instant brown rice exists

Substitute brown rice for white rice Stir fry’s, Taco Night, Casseroles

Enjoy with beans, poultry or beef Sweeten and enjoy as rice pudding

Preparing Brown Rice

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Slide 16

2 ½ cups Brown Rice: 1 cup Water

Bring rice and water to a boil Decrease heat to low and simmer/covered Simmer until most liquid has been absorbed

40-50 minutes

Yields: 2 ½ cups

Preparing Brown Rice

Slide 17

Cereal Grass Most “Ancient” Grain

Dietary staple in Asian and African Regions Old dietary staple in Italy before corn was introduced

Small yellowish kernels Sweet, corn-like flavor As simple to cook as rice

Can be made into either sweet or savory dishes

Millet

Slide 18

Protein Rich! Calcium Magnesium Potassium Phosphorus Antioxidants

Millet Nutrition Facts

Slide 19

2 ½ cups Millet: 1 cup Water

Bring millet and water to a simmer Decrease heat to low and simmer/covered Simmer until most liquid has been absorbed

25-30 minutes

Yields: 3 cups

Preparing Millet

90

Slide 20

Major grain in semi-arid tropics in Africa, India and

South America Chewy, dense texture Sorghum is consumed in various forms around the

world: baked bread, porridge, tortillas, and in alcoholic and non-alcoholic beverages (malted)

Sorghum Flour: Made from grass that is ground: neutral taste, pale

color: perfect for baked goods

Sorghum

Slide 21

Excellent source of starch, fiber & protein

Not as high in protein as other grains Fat soluble vitamins: D, E and K Antioxidants

Inhibit tumor development

Sorghum

Slide 22

Very Versatile!

Boiled like rice Popped like popcorn Malted like barley for beer Baked like wheat in breads

Preparing Sorghum

Slide 23

Heat a deep-bottomed vessel with 1 tbsp. of cooking

oil and let it smoke. Reduce heat and add 2 oz. of sorghum grain Cover the vessel with a lid and allow the grains to

pop Serve with a light sprinkling of

salt or cayenne pepper.

Preparing Sorghum

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Slide 24

Quinoa

Teff

Amaranth

Additional Gluten-Free Grains

Slide 25

Pronounced “Keen-wah” Super Grain Known as the “Mother Grain” in South American Now cultivated in North American Rocky Mountains Mild, nutty flavor Takes about 10-15 minutes to cook

1/2 the time of rice Use in place of rice in cereals, main dishes, soups, salads

and desserts Top Quinoa with black beans, salsa, avocado, shredded

romaine and corn

Quinoa

Slide 26

Nutrients:

Higher in unsaturated (healthy) fats and lower in Carbohydrates than most grains

Contains All 8 Amino Acids = Complete Protein Fiber Calcium Iron Phosphorus

Quinoa

Slide 27

2 cups Quinoa: 1 cup Water or Broth

Bring Quinoa and water to a Boil Decrease heat to low and simmer/covered Simmer until most liquid has been absorbed

12-15 minutes Let stand 5 minutes

Yields: 3 cups

Preparing Quinoa

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Slide 28

Originated in Ethiopia Mild nutty, sweet flavor Very small beige seeds Available in whole grain or flour form

Teff

Slide 29

Nutrients

High quality protein Good source of Calcium and iron

5 times richer in calcium, iron and potassium than any other grain

Fiber Prepare

Serve as a breakfast porridge-top with fruit and maple syrup

Use as a thickening agent in soups/stews

Teff

Slide 30

3 cups Teff: 1 cup Water

Bring water to a boil Sprinkle in Teff grains Simmer, uncovered Stir frequently until mixture

has thickened 15-20 minutes

Yields: 2 ¾ cups

Preparing Teff

Slide 31

Technically not a “grain”

Seed of an Herb Considered sacred by the Aztecs in 15th century Staple food of the Incas Loaded with protein, fiber and iron Pleasant, nutty flavor Nutrients

High in Protein and Fiber Calcium, Iron, Potassium, Phosphorus and Vitamins A

and E

Amaranth

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Slide 32

3 cups Amaranth: 1 cup Water or Broth

Bring Amaranth and water to a Boil Decrease heat to low and simmer/covered Simmer until most liquid has

been absorbed 20-25 minutes

Yields: 3 cups

Preparing Amaranth

Slide 33

Grains in Bulk Bins may not be Gluten-Free

Order Online www.bobredmill.com www.mannaharvest.net

Gluten-free sections of stores Storage

The germ contains oil-may becomerancid

Store in air-tight container Cool, dry place

Make a double batch Keeps in fridge for up to 3 days Keeps in freezer for up to 4 months

Gluten-Free Grains Shopping Tips

Slide 34

Many nutrient deficiencies are associated with celiac

disease and the gluten-free diet

Gluten-free grains do exist

Gluten-free grains are packed with nutrients, are delicious and are easy to prepare

Conclusion

Slide 35