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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
completion of the requirements for the
Graduate Degree/ Major: MS Food and Nutritional Sciences
Research Adviser: Esther Fahm, Ph.D.
Submission Term/Year: Spring, 2012
Number of Pages: 94
Style Manual Used: American Psychological Association, 6tb edition
-dr understand that this research report must be officially approved by the Graduate School and l't;';;; an electronic copy of the approved version will be made available through the University L'b ry website
attest that the research report is my original work (that any copyrightable materials have been with the permission of the original authors), and as such, it is automatically protected by the
~· rules, and regulations of the U.S. Copyright Office. ~ My research adviser has approved the content and quality of this paper.
STUDENT:
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)
DATE: tf ~// - /2.,_
3. CMTE MEMBER'S NAME: Dr.~ Bud1 j DATE: 5-y-/2-)_WX t ! ,
This section to be completed by the Graduate School This final research report bas been approved by the Graduate School.
Director, Office of Graduate Studies: DATE:
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
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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
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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
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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
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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
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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).
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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).
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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).
30
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
32
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.
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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.
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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 [email protected] [email protected] 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 [email protected] 152 Vocational Rehabilitation Bldg. UW-Stout Advisor: Dr. Esther Fahm Menomonie, WI. 54724 715-232-2550 715-232-2477 [email protected] [email protected]
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 [email protected] [email protected] 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 [email protected] 152 Vocational Rehabilitation Bldg. UW-Stout Advisor: Dr. Esther Fahm Menomonie, WI. 54724 715-232-2550 715-232-2477 [email protected] [email protected]
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
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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
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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 [email protected] 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
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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
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Common Nutrient Deficiencies in Celiac Disease
Fiber Calorie/Protein Vitamin D Vitamin B12 Folic Acid Iron
Nutrient Deficiencies
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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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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
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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
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Whole Grains
Must have all three layers of the grain: Outer Bran (Fiber) Endosperm Inner Germ (Vitamins
and Minerals)
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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
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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
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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
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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
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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
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Protein Rich! Calcium Magnesium Potassium Phosphorus Antioxidants
Millet Nutrition Facts
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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
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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
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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
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Very Versatile!
Boiled like rice Popped like popcorn Malted like barley for beer Baked like wheat in breads
Preparing Sorghum
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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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Quinoa
Teff
Amaranth
Additional Gluten-Free Grains
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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
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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
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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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Originated in Ethiopia Mild nutty, sweet flavor Very small beige seeds Available in whole grain or flour form
Teff
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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
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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
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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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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
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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
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