Influence of Celiac Disease on Diet Satisfaction and Quality of Life
Corinne Magoon
NFSC 429
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Influence of Celiac Disease on Diet Satisfaction & Quality of Life
ABSTRACT
Background:
Celiac disease is an autoimmune disease that affects the villi of the gastrointestinal tract and
inhibits nutrient absorption. The only treatment for celiac disease is to follow a strict gluten-free
diet for the rest of an individual’s lifetime. The restrictive diet can relieve pain and discomfort
but it can also cause individuals stress and anxiety from limited food options.
Methods:
Four individuals following a gluten-free diet for the alleviation of celiac disease participated in
approximately 15 minute qualitative interviews. Participants were asked about the effects of their
lifestyle change, stress about food options, overcoming that stress, emotions when eating around
others, and the effect of their diet on others. Edge coding was done on the field notes written for
each interview, and the major and minor themes that arose from the edge coding were entered
into a code matrix, figure 1.
Results:
Each of the four individuals experienced physical improvements during the first year of their
lifestyle change that resulted in an overall improvement in quality of life. The participants
experienced emotions such as guilt, frustration, and stress while adjusting to their gluten-free
diet, but experienced such great physical relief that these emotions were tolerable.
Conclusions:
While a gluten-free diet followed to treat celiac disease can be restrictive and in some cases
bland, the participants each expressed that their physical improvements far outweigh the stress of
eating gluten-free.
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INTRODUCTION
Celiac disease is an autoimmune disease that affects the gastrointestinal health of millions
of Americans. The only treatment for celiac disease is to follow a strict gluten-free diet to
prevent inflammation and degradation of intestinal villi and restore nutrient absorbtion. The
dietary changes that are required for individuals with celiac disease have been found to cause
emotional distress and anxiety following diagnosis, as seen in the research article, Living with
Coeliac Disease: a Grounded Theory Study by C. Rose & R. Howard. Individual’s may have
trouble adjusting to a diet that cuts out many of their favorite foods or ingredients. Grocery
shopping and meal planning can become anxiety-inducing activities when certain foods become
unavailable to a person with celiac disease.
The anxiety associated with a strict restrictive diet and have a negative effect on an
individual’s quality of life, seen in the article ‘Controlled by Food’-Lived Experiences of Celiac
Disease by Sverker, Hensing, and Hallert. While an individual may experience physical relief
following their diagnosis, they may feel trapped by their restrictive diet, causing anxiety and
depression. Qualitative interviews are an opportunity to learn more about how a definitive
diagnosis can affect the life of a person with celiac disease.
As celiac disease has become more prevalent throughout American culture, a wide
variety of gluten-free products have become popular in grocery stores, making it easier for
individuals with celiac disease to enjoy gluten-free versions of their favorite foods. This study
aims to evaluate the influence of celiac disease on an individual’s overall quality of life.
METHODS
In order to collect a variety of opinions from persons with celiac disease, interviews were
conducted with four individuals who have been diagnosed with celiac disease and are adjusting
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to living on a gluten-free diet. The individuals participating in the interviews range in age from
mid-twenties to mid-fifties; three females and one male participated. All of the interview
participants live with family members, some of whom have not been diagnosed with celiac
disease.
In order to collect information about the subjects’ dietary habits and experiences, four
qualitative interviews were conducted at approximately fifteen minutes each. Subjects answered
a number of mostly open-ended questions about their adjustment to living with celiac disease.
Questions asked during the interviews are found in the “Interview Guide” following figure 1.
Field notes were written during each interview, and edge coding was done to identify major and
minor themes among the participants. The major and minor themes were organized in a code
matrix (figure 1) to show similarities and differences among the participants.
RESULTS
From the four interviews conducted with individuals with celiac disease, it was found that
while gluten-free diets are restrictive, individuals experience such a great amount of relief from
physical distress that they adjust to and even enjoy their gluten-free diet.
Results of Diet Change
All of the participants experienced physical changes within the first few weeks of
changing their diet that improved their quality of life. Three of four of the participants mentioned
a reduction in pain, and two of the participants experienced a marked decrease in bloating after
meals. Participant one explained how the decrease in bloating affected her eating habits, “I can
finish my meals, whereas before I had to eat small meals and would feel really bloated
afterwards. I was accommodating the illness for many years, eating smaller meals and eating
more often”.
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Participant four found the most significant change during the few weeks immediately
following the diet change to be a decrease in energy, but explained how her quality of life
improved in the few weeks following,“initially the symptoms were increased fatigue, but...within
6 weeks I was off my antidepressants”. Participant two experienced what she termed “gluten
withdrawals” during the first few weeks of changing her diet, describing herself as, “having
withdrawals from gluten, like feeling of hunger after eating a meal.”
A long-term effect that many of the participants noticed was that they did not go out to
eat as often because the gluten-free options offered in restaurants lacked appeal. Participant one
recounted a disappointing experience at a restaurant, “I will ask for a gluten-free salad and they
will bring it out with croutons on it, and take it back to the kitchen and just take the croutons off
but leave the crumbs and expect me to eat it”. Participant three explained that when he was
diagnosed over six years ago, there were minimal gluten-free options, “The change in diet left
me eating a lot less, I am insanely picky... And, well, gluten free foods were very bland 6 years
ago, but over the years the quality of food and flavor in gluten free meals has improved
drastically”.
Participants one and four, the two participants over 40 years of age, experienced
significant weight gain following their diet change, due to the increased nutrient absorption.
Participant one explained the weight gain as a negative side effect of the diet, “of course one of
the problems with eating more is weight gain, from eating larger meals and actually getting the
nutrients”; participant four thought of her 25 pound weight gain as a somewhat positive change,
“My metabolism is finally now after three years starting to stabilize and I’m working on
establishing a healthy weight”.
As an endurance athlete, participant four saw an increase in her abilities, “As a Triathlete
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it has improved my ability to perform at a level I simply struggled to achieve years prior”.
Similarly, participant four found herself feeling more energetic, “I feel not as weighed down
from food. Generally feel my body is not so sluggish”.
All of the participants experienced cravings for foods that contain gluten, but feel as
though the cravings have lessened or gone away as such a large number of foods are now
available in gluten-free options.
Stress About Food Options
The interviews revealed that everyday tasks became more difficult when first adjusting to
a gluten-free diet. Participant one found that grocery shopping produced a large amount of
anxiety, “it would take me an hour and a half to go grocery shopping because I would have to
read all the labels; now I have a better idea of what it is I can buy and products that are safe”.
Participant three found himself skipping lunch after changing his diet, “When I switched over to
my new diet, I stopped eating lunch. I missed my sandwiches”. Participant three has found that
as celiac disease has become more prevalent, more gluten-free products are becoming available,
“the choice of gluten free products, has drastically improved in the last 6 years and I no longer
feel anxious when shopping”.
Participant four did not feel anxiety but disrespect when she was first adjusting to a
gluten-free diet, “What bugs me the most is having others not understand or respect my
nutritional needs. Such as cleaning off surfaces that have been contaminated. Using my toaster,
etcetera.”.
Bland and boring dishes were found to be a problem among a number of the interview
participants, noting that often if restaurants do offer gluten-free options, they often lack flavor.
Participant one noted that at restaurants, “the dishes are very bland a lot of the time, restaurants
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are afraid to put seasonings in the dishes because they don’t know if they have gluten”.
Participant one has also found that eating gluten-free has limited the number of restaurants she
can choose from, “I’ve found the chains have more information on it, and the mom and pop
stores either do not have the information or just do not carry gluten-free options because they
have a smaller selection”.
Overcoming Stress
While each of the participants felt stress and anxiety while adjusting to their gluten-free
diets, they were each in their own way able to overcome that stress. Participant one uses the
internet to research products and ingredients that are safe to eat, “the internet is hugely helpful,
probably the tool I use most to figure out what ingredients are safe are what are not”. Participant
two found that looking up new ingredient substitutions made the adjustment easier, “I didn’t
think I could eat a normal diet, especially due to also being dairy free, but I have learned to
substitute different flours or wheat flour”.
Participant three found that the easiest way to make sure food and ingredients were safe
was to learn to cook for himself. Participant three uses meat and other ingredients to bulk up the
sometimes boring gluten-free foods, “Gluten free pre-made meals, are below sub par, so to
compensate for that I cook a lot of pastas, and meaty dishes”. Participant four also found it
easier to cook for herself, already being familiar with the gluten-free diet, “At home it was quite
easy as my sport dietician had me on a near gluten-free diet to begin with leading up to my
diagnosis”.
Participant one stated that she tries to be prepared when eating out of the house,
“planning or calling ahead to a restaurant to ask if they have gluten-free options on their menu.
Just have to ask”. Participant one stated that overall her health improvements are too great to
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worry, “the reality is my health is much better so it’s not worth worrying much about it I just
have to change my idea of what I want to eat”.
Emotions When Eating Around Others
Individuals with celiac disease often feel uncomfortable or guilty when eating in public,
out at restaurants or at friend’s homes, overcoming this stress helps to improve their experience
adjusting to their new diet. The participant one found that bringing food to her friend’s homes
made dining with others easier, “I have learned that if I tell them I will bring my own food, it
makes it less stressful”.
Participant two found that while some peers get upset that she cannot eat their food, most
friends are very accommodating, “Some get annoyed that I won’t eat foods, even though they
know I can’t have it, they usually aren’t mindful of my allergies and get upset. Some people are
very understanding and give me the ingredients of everything in everything they are serving”.
Participant three found that shortly after his diagnosis when the disease was not as
popular, many people were unsure of foods or ingredients that contained gluten, “When eating
with others, it can sometimes be hilarious at how many things they ask whether it has gluten or
not. No matter how many times you tell someone ‘It's just wheat and flour based products... Yes,
corn is ok. Yes, rice is ok. YES STEAK IS OK!’”.
Participant four admitted that most of the time she feels frustration when eating around
others, “Either they don’t understand the significance of the disease or they think Im just simply
a gluten free Fan and it’s not serious. I also hate being picky over food, especially in public”.
Diet’s Effect on Family
When individuals with celiac disease are responsible for preparing the majority of family
meals, it can be difficult for family members to adjust to a gluten-free diet along with their celiac
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family member. Participants one and two stated that family meals remain for the most part the
same; participant one cooks for her husband and her self, but keeps most of the ingredients the
same, “Meals are 2/3 the same, I’ve found there’s certain condiments I can use that are gluten
free for things like burgers or pastas”. Participant two has four children and a husband who also
has a lactose intolerance; she tries to keep her meals fairly similar to maintain simplicity,
“Mostly just make myself a gluten-free version of what I make the rest of the family. Sometimes
I have everyone eat the gluten-free food I make”.
After discovering his celiac disease, participant three persuaded his family to get tested
for celiac disease because they were suffering from a variety of symptoms. Participant three
incorporated his gluten-free diet into his family’s lifestyle explaining, “my diagnosis of Celiacs
lead to discovering that every female on my mother’s side of the family had Celiacs. The diet in
my household changed as well. There are very few products in my home at this point that are not
gluten free”.
Participant four has found her family to be helpful in her adjustment to a gluten-free
lifestyle, “My family is particularly helpful. Even when they purchase items they are careful to
read the ingredients and manufacturing to be certain it’s something I can or cannot have”. She
explained that many of her gluten-free meals are well accepted by her family, “Some things are a
constant battle but we choose them wisely. But for everyone its been positive. And for the most
part they like the GF options better”.
Participant one has noticed frustration from her husband, stating that eating with friends
can turn into a discussion about celiac disease, “[My husband] is probably frustrated, he feels
like any time we go out to dinner, the conversation revolves around me and my condition. But
after a while when we go to restaurants and I say I need gluten free, and he’ll say I need some
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gluten please”.
Discussion
The effects of celiac disease reach far beyond gastrointestinal discomfort, as seen from
the four qualitative interviews conducted. From figure 1, the code matrix compiled from the
participant’s interviews, it is observed that while there are similarities, each of the individuals
has had a different experience in adjusting to their gluten-free diet.
Although it can be stressful to receive a diagnosis of celiac disease and difficult to adjust
to a gluten-free lifestyle, the four individuals who participated experienced vast improvements in
quality of life. The physical improvements and piece of mind that come with a definitive celiac
disease diagnosis seem to be worth the change in lifestyle, and cravings seem to dissipate as
patients adjust to a gluten-free diet.
Figure 1
Participant
A
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Short-Term Effects of Diet
Change
-stomach felt better
-reduction of bloating
-gluten withdrawal
-pain relief
-decreased inflammation
-fatigue
-weaned off of anti-depressants
-difficult to eat out
Long-Term Effects of Diet
Change
-weight gain
-increased absorption
X
X
Participant Participant
B
C
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Participant
D
49
X
X
X
X
X
X
X
X
X
X
X
X
X
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-able to eat more
-picky about foods
-more energy
-increased performance
Stress about food options
-worry about choices
-grocery shopping
-restaurants
-friends’ homes/parties
-cross-contamination
Overcoming Stress
-Planning ahead
---calling ahead
---bring own food
-Internet to look up options
-Substitutions
-learned to cook
-increase in GF options
-label ingredients/cookware
Feelings while Eating w/
Others
-guilt of putting others out
-Feel too good now to worry
-hilarious to eat w/ others
-feel disrespected by others
-frustration
Diet’s effect on Others
-Annoyed
-Frustrated
-Understanding
-joke about it
-family/friends helpful
-family enjoys GF foods
-family adopted GF diet
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
Interview Guide
● How long have you been following a gluten-free?
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● Were there immediate effects of changing your diet? If so, what effects did you feel in
the first week or two?
● What are the long-term results of changing your diet? (after a year or so)
● How has changing your diet/eating habits affected your quality of life?
● Describe your level of satisfaction with your current gluten-free diet and the foods
available to you.
● Do you feel stress/anxiety when it comes to choosing what to eat? Does Meal planning
for gluten-free meals cause stress?
● How do you overcome the stress/anxiety associated with your condition?
● What emotions results from eating a gluten-free diet around others?
● What effect has your gluten-free diet had on family or friends?
● Have you encouraged or incorporated a GF diet into your family’s diet? Was their
reaction positive or negative? Did they make change willingly or resist the change to their
diet?
● Do you, or did you when first starting a GF diet, find yourself missing/craving any foods
or ingredients that may cause you discomfort now?
REFERENCES
● A. Sverker, G. Hensing, C. Hallert. ‘Controlled by Food’-Lived Experiences of Coeliac
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Disease. Journal of Human Nutrition and Dietetics. 18, 171-180.
● P. Fletcher, M. Schneider. Is There Any Food I Can Eat? Living with Inflammatory
Bowel Disease and/or Irritable Bowel Syndrome. Clinical Nurse Specialist. 2006. 20(5)
241-247.
● Rose C. & Howard R. (2014) Living with coeliac disease: a grounded theory study. J
Hum Nutr Diet. 27, 30–40 doi:10.1111/jhn.1206
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