Evaluation of Physical and Emotional Complications in Celiac Disease Patients
Amber Bowitz
Research in Allied Health
December 2, 2011
Chapter 1:
Introduction
Background
By definition, Celiac disease is “a permanent intolerance to gluten…characterized by a chronic inflammatory state of the proximal small intestinal mucosa, which can impair digestion and absorption of macronutrients and micronutrients and results in increased net secretion of water and [solids]” (Rostom, Murray, & Kagnoff, 2006).
Celiac disease is becoming more recognized in America and Europe, growing from the 1% that are currently diagnosed (Freeman, 2009). Although only this small percentage of people know about their disease, it could be as common as 1 in 100 individuals (See & Murray, 2006). It has also been estimated that “for every new patient diagnosed with celiac disease, between 2 and 7 cases could go undiagnosed, and the average period of evolution of symptoms in adults prior to being diagnosed is calculated to be 11 years” (Garcia-Manzanares & Lucendo, 2011). Because it is so underdiagnosed, it is important in the dietetic field to understand the complications associated with the disease in order to express the urgency and severity to the public.
Purpose
The purpose of this study is to examine the effects of Celiac disease on patients, including an evaluation of both the physical and emotional complications caused by the disease in hopes to increase general understanding as well as improve the quality of life for Celiac disease patients.
Significance
Celiac disease is more prevalent than ever thought before. All of the health effects involved with Celiac disease are strongly correlated with malnutrition and lower quality of life. The hidden nature of this disease along with the overall ignorance of it are causing thousands pain and improper nutrition. A better understand of the disease, and its effects on the body as well as mind will help both health care workers as well as the general public to better understand their potential risk of the intolerance as well as how to cope with the disease, whether it be themselves that have it or a loved one.
Research Question
The main focus is evaluating the complications, both physical and emotional, that Celiac disease is responsible for. Through this research, other questions are expected to be answered as well:
1. What the diet of a Celiac disease patient includes.
2. Difficulties of the diet.
3. The effect of Celiac disease on pregnancy.
4. The effect of breastfeeding on the development of Celiac disease.
Assumptions
1. Most of the complications are physical; as these are more easily recorded.
2. Adhering to the diet is very difficult, and the relapses are frequent.
3. The patients will be eager to participate in the study, as the idea of Celiac disease being examined and more information gathered is appreciated.
Limitations
1. The research is based on the word of the subject which may not be honest because the researcher cannot actually follow them and witness their physical and emotional reactions.
Chapter 2
Literature Review
When hearing the phrase “Celiac Disease” or “gluten-free diet,” most people are puzzled at what that entails. This isn’t surprising at all, as most people don’t know what it is until they are diagnosed with it. However, celiac disease was actually described in I CE by Aretaeus de Cappadocia (Garcia-Manzanares & Lucendo, 2011). It was then made a disease and called “Celiac affection” in 1887 by Dr. Samuel Gee, and finally in 1953, pediatrician Willem Dicke connected the disease with wheat. The postwar period that brought wheat supply shortages actually caused many people to see an improvement in health (Garcia-Manzanares & Lucendo, 2011).
The specifics of exactly what happens when gluten is ingested are found in the following excerpt from an article in Nutrition in Clinical Practice.
“Celiac Disease affects the proximal small intestine, which sees the highest concentration of grain peptides. It is the partially digested peptides derived from the stored proteins of wheat, barley, and rye that induce a potent immune response in the proximal small intestine. This immune response only occurs in individuals who carry a certain human leucocyte antigen (HLA) type, that is, DQ2 or DQ8. The potent immune response to gluten consists of both adaptive and innate immune responses. Innate responses occur early, within hours of exposure to gluten, and consist of activation of the lymphocytes in the surface epithelium, changes or alterations in the epithelial cells themselves producing certain cytokines, particularly interleukin (IL)-15, that further condition the immune response to continued gluten exposure, and changes in permeability. It is, however, the role of the adaptive immune response that is crucial in perpetuating the gluten sensitivity that results in loss of immune tolerance and the development of chronic inflammation within the small intestine. It is CD4-positive T-cells that are specifically reacting to gluten in a manner that is restricted by DQ2 or DQ8 that results in inflammation.” (See & Murray, 2006)
The immunological response following gluten exposure has now been described; but how exactly does this affect the person’s well-being?
Individuals with celiac have the risk of malabsorption (Garcia-Manzanares & Lucendo, 2011). Anomalies in the structure of the intestine can lead to various absorption problems of vitamins and dietary minerals. Side effects of this include diarrhea, steatorrhea, lack of appetite, growth retardation, and fat-soluble vitamin, iron, calcium, and folic acid deficiencies. In young children, there is a risk of digestive bleeding due to the deficiency in the synthesis of vitamin K. Rarely, patients will experience something much like an “abdominal crisis such as intestinal obstruction, perforation, or partial obstruction” (See & Murray, 2006). Still, other patients will present with non-gastrointestinal consequences such as infertility, neurological abnormalities, epilepsy, dermatitis, oral ulcers, and dental enamel anomalies. Celiac disease sometimes has mild and nonspecific symptoms in adults, which causes many to go undiagnosed for years. Celiac disease also affects women more predominantly at a ratio of 2:1 (Garcia-Manzanares & Lucendo, 2011), and is more common in European countries or white populations and rare in African-Americans and individuals from Southeast Asia (See & Murray, 2006).
“Celiac disease is the most under-diagnosed common chronic condition” and is “difficult to diagnose because its symptoms are non-specific, and…present atypically” (Kostopoulou, Devereaux-Walsh, & Delaney, 2009). There are two main methods of diagnosing celiac disease. First, the suspected patient should begin with a blood test to determine if specific antibodies are present.
Serological test, or blood tests, are very useful to identify if the patient needs to “undergo a biopsy of the small intestine” (Garcia-Manzanares & Lucendo, 2011). It is also common for adult patients with celiac disease to have negative test results, and therefore a biopsy is usually suggested anyway. The antibodies that are associated with celiac disease are IgA-class antigliadin antibodies, antiendomysial antibodies, and IgA anti-tissue transglutaminase antibodies. The latter, IgA anti-tissue transglutaminase antibodies have proven to be the most useful marker for celiac disease screenings (Garcia-Manzanares & Lucendo, 2011).
When performing a biopsy of the small intestine, a flexible endoscope is used to directly view the mucosa to look for changes such as “notching” or “scalloping” of the small bowel folds, or lesions (such as “ulcers, esophagitis, gastritis, or duodenitis”) (Pietzak, Catassi, Drago, Fornaroli, & Fasano, 2001). Usually four or five samples are taken in a biopsy as well, because celiac disease can be patchy.
Unlike a lactose intolerance, where a pill can simply be taken along with dairy products, the only treatment at this time for celiac disease is strictly and permanently eliminating gluten from the diet (Garcia-Manzanares & Lucendo, 2011). The goal of this treatment plan is to “relieve symptoms, heal the intestine, and reverse the consequences of malabsorption, while enabling the patient to maintain a healthy, interesting, practical gluten free diet” (See & Murray, 2006).
A gluten free diet is based on two fundamental principles; “the elimination of all products containing wheat, barley, spelt, rye, and oats” and “the elimination of any products deriving from these cereals such as starch, flour, semolina, bread, pasta, pastries, and cakes…[as well as] the byproducts of these grains in food products, beverages, and medications” (Garcia-Manzanares & Lucendo, 2011). Gluten can be found in common items such as cold cuts, canned fish, yogurts, some ice creams, jellies, chocolate, candies, and condiments along with the more obvious flour, bread, pasta, cakes, and oats. In the Western world, “70% of manufactured food products may contain gluten” (Garcia-Manzanares & Lucendo, 2011).
However, it is very difficult to follow a gluten free diet, and “noncompliance is very frequent, with rates between 50% and 80%” (Garcia-Manzanares & Lucendo, 2011). Even small amounts of gluten can lead to mucosal alterations and many of the previous symptoms, including malabsorption. Staying on a gluten free diet is crucial; it not only keeps the body from malabsorption, but also leads to a significant improvement in bone density, iron deficiency, restores growth in children, and improves glycemic control in patients with diabetes (See & Murray, 2006). After two weeks of a gluten free diet, “between 70% and 95% of patients with celiac disease show rapid clinical improvement and disappearance of symptoms;…the serum antibody titers can take from 6 to 12 weeks to normalize and complete histological resolution may not occur until the …diet has been followed for 2 years.”
Common reasons for failure to adhere to the diet include but are not limited to: (1) poor adaptation to the disease because of certain foods being eliminated in the daily diet, (2) accidental consumption of gluten that triggers a clinical relapse, and (3) difficulty following the gluten free diet for life (Garcia-Manzanares & Lucendo, 2011). Some suggestions that are given to celiac disease patients are to consume natural foods, take precautions to avoid cross contamination, speak with managers at food establishments, check pharmaceutical products, and do not use a product if there is any doubt about containing gluten (Garcia-Manzanares & Lucendo, 2011).
Women with celiac disease have more difficulty becoming pregnant, and are “8.9 times [at a] higher risk for spontaneous abortions” (Pietzak, Catassi, Drago, Fornaroli, & Fasano, 2001). (Men also experience infertility with celiac disease as well). Women have a shortened reproductive period with delayed menarche and early menopause, as well as menstrual irregularities (Carolis, et al., 2004).
There are adverse pregnancy outcomes as well; such as recurrent miscarriage (recurrent spontaneous abortion, RSA), intrauterine growth retardation (IUGR), low birth weight (LBW), and shorter duration of breast feeding. These conditions are improved by following a gluten free diet, but are still present at higher occurrences in women with celiac disease.
Breastfeeding also affects celiac disease. It influences the presentation of celiac disease, and for those children who are breastfed, the age at onset of symptoms and the age at diagnosis were significantly greater than the children who were not exclusively breastfed (D'Amico, et al., 2005). Below are the findings from a study on breastfeeding and the age of onset of celiac disease in children (D'Amico, et al., 2005).
“Breastfed children have less classic presentations, including less diarrhea, growth disturbance, vomiting, and abdominal pain or distension. However, they had a longer duration of symptoms before diagnosis, they had more visits to physicians, and they saw a greater number of physicians and specialists before the diagnosis was made. These findings are evidence that the diagnosis was not simply delayed but that the clinical disease presented later and differently, corroborating others’ suggestion that breastfeeding has an altering, if not protective, effect on the development of celiac disease.”
Many patients describe “an awareness of being different from others that was produced by meal appearance and the poor availability of gluten free food” (Olsson, Lyon, Hornell, Ivarsson, & Sydner, 2009). Many times this leads to regular or occasional deviance from compliance of the gluten free diet, and that “adherence to the gluten free diet complicated social relationships when it made their condition visible to others.” It is feared that “an unplanned revelation of some aspect of one’s self not previously known to others might permanently, and negatively, change the way one is viewed” (Olsson, Lyon, Hornell, Ivarsson, & Sydner, 2009). Adolescents specifically reported that there was a stigma associated with celiac disease.
A stigma is a “direct visible sign of something unusual enough to disqualify a person from full social acceptance, and subsequent use to include invisible personal characteristics that would be discrediting if they were made evident” (Olsson, Lyon, Hornell, Ivarsson, & Sydner, 2009). There was little thoughts about eating at home, however, in public, following a gluten free diet attracted attention. It causes patients to feel “awkward”, and gives them a sense of “inequality to embarrassment, anger, alienation, and guilt”; there is a “sense of being discriminated against…when other people either amplified or minimized the importance of their medical condition and dietary needs”; it was “demanding and embarrassing to be seen as ‘special’ in the eyes of others” (Olsson, Lyon, Hornell, Ivarsson, & Sydner, 2009). Below are multiple quotes from adolescents in a focus group study about dealing with celiac disease and what they commonly feel.
“The hard thing is not really the food. It’s just that you can’t be like everyone else, that’s just heavy.”
“Sometimes, when I take my food, it’s as if everyone stares at me… ‘What kind of strange and disgusting food are you eating?’ Most likely, they don’t think so but that’s how I feel.”
“Then, sometimes, if you can’t eat…or if you’re somewhere were you can’t find anything to eat, it feels like people [are thinking], ‘Well, why don’t you eat? Isn’t our food good enough for you?’”
“I don’t want other people to feel sorry for me because I have celiac disease…they make such a big deal of it, those who feel sorry. It’s just a burden.”
“I feel like everyone has to make sacrifices and buy other food, more expensive food. That I found hard…and you just can’t eat what you like…then you feel like a bother.”
Many patients with celiac disease are at a constant risk of social devaluation. Not only was the visibility of their special dietary needs undesired, but also the invisibility that accompanied the diet too. It made passing easy, but it also had a negative effect when others could not see their condition, so they could think “the adolescent was making it up or being self-important about something that did not actually matter” (Olsson, Lyon, Hornell, Ivarsson, & Sydner, 2009).
Because celiac disease is regarded as a “substantial burden,” it is not surprising that adherence to the diet is not uniform among patients with celiac disease (Tennyson, Lewis, & Green, 2009). Those who have a thorough understanding of the diet and participate in a celiac disease advocacy group are much more likely to follow the strict gluten free diet. However, there are numerous reasons why there is a low adherence to the diet. This includes palatability, cost and availability, inadequate food labeling, and social pressures and quality-of-life issues (Tennyson, Lewis, & Green, 2009).
Due to the “rapid expansion in the knowledge of the pathological mechanisms of the damage induced by gluten in celiac disease…the concept of the development of a pharmaceutical agent to treat celiac disease has become a reality” being explored (Tennyson, Lewis, & Green, 2009). If a pharmaceutical agent could help patients with the gluten free diet, or even the ingestion of gluten, it would be a huge breakthrough. Non-dietary therapies focus on three main objectives: to decrease gluten exposure, to modify intestinal permeability, and to modulate immune activation.
In order to reduce gluten exposure, grains could be genetically engineered to eliminate immunogenic gluten fragments. This would be challenging, however, because of the large number of peptide epitopes located in different genetic loci of the wheat genome. Also, genetic modification would be difficult since it is controversial and not regarded favorably by the public.
“A major approach that has been explored is the enzymatic degradation of the large, immunogenic gliadin peptides into small nontoxic fragments. This can be performed by prolyl endopeptidases (PEPs). These are proteases, found primarily in plants and microorganisms, able to degrade the proline-rich gluten peptides into smaller, less immunogenic fragments. This can be achieved by bacterial, or fungal enzymes that lend themselves to large-scale manufacturing. Alternatively, probiotics have been demonstrated to degrade gluten and exert a protective effect on the damage exerted by gluten on cell cultures.”
Enzyme therapy is attractive because physicians are familiar with using enzymes to treat lactose intolerance and pancreatic insufficiency.
The next, decreasing intestinal permeability, targets the prevention of luminal gluten peptides migrating across the intestinal epithelium. “Zonulin, an endogenous peptide involved in tight junction regulation, is amplified in celiac disease and increases intestinal permeability” (Tennyson, Lewis, & Green, 2009). When given AT-1001, a peptide that inhibits the action of zonulin, there was no increase in permeability compared to the placebo, which had a 70% increase in permeability.
Finally, decreasing immune activation may be achieved by “preventing gliadin deamidation through the inhibition of tissue transglutaminase, by preventing HLA presentation through blocking the HLA DQ2 or DQ8 molecules, or by modulating cytokine production” (Tennyson, Lewis, & Green, 2009). There are also other proposed methods such as vaccine development and hookworm infection, which may decrease the gluten sensitivity in celiac disease individuals.
Chapter 3
Research Method
Research Design
The study is intended to gather information regarding physical as well as emotional complications of Celiac disease in effort to enhance treatment and support. Current research will be gathered and assessed. Also, any current studies will be taken into account while interpreting and sorting the data. Doctors will also be asked to give their Celiac patients a survey. The survey will cover nutritional information regarding the disease as well as questions regarding their feelings towards the diet and concerning how other people make them feel. The students will be expected to answer each question truthfully and completely as possible, and the survey will be anonymous so the participants will feel more comfortable answering honestly.
Research Questions
The survey will have both open-ended and multiple choice questions. The first survey will consist of questions regarding Celiac disease in general. Questions will be asked regarding diet, how strict the patient follows it, and how long they have known about the condition. The survey will also cover questions concerning emotional and social influences on their feelings towards themselves and the disease. These questions will ask about their comfort level, feelings of acceptance, and overall good or bad responses the patients wish to share. This survey will aid the research in discovering if there is a connection between length of time of disease, strict adherence to diet, and positive or negative association with the disease.
Participants
All patients participating in the study will be those of Candee Spence and also Janet Skates, two dietitians that have agreed to participate and are located in the Johnson City and Kingsport areas. The patients will be between the ages of 12 and 40, and although their name is not required on the surveys, their age will be asked. The only physical requirement for the patients is that they have been diagnosed with Celiac disease.
Data Collection Methods
The survey will be collected once the patients have completed them. The first part of the survey is intended to gather an understanding of the extent to which the patients follow the gluten free diet and how strongly they adhere to it. The second part of the survey is concerned with emotional and psychological effects, and the patients will be asked about how others treat them, how they feel in public situations, and how they feel having Celiac disease has impacted their life. By comparing the level of adherence to the gluten free diet to the amount of time diagnosed along with the emotional response, pinpointing and improving diets along with therapy and treatment is possible.
Data Analysis
After the survey has been conducted and relevant studies and research collected, the information will be analyzed and categorized. The patients’ answers will be primarily investigated on four different correlation patterns:
· Age groups and length of diagnosis.
· Age groups and adherence to diet.
· Correlations between diet adherence and emotional impact.
· Correlations between age groups and emotional impact.
References
Carolis, S., Botta, A., Fatigante, G., Garofalo, S., Ferrazzani, S., Gasbarrini, A., et al. (2004). Celiac Disease and Inflammatory Bowel Disease in Pregnancy. Lupus, 653-658.
D'Amico, M., Holmes, J., Stabropoulos, S., Frederick, M., Levy, J., DeFelice, A., et al. (2005). Presentation of Pediatric Celiac Disease in the United States: Prominent Effect of Breastfeeding. Clinical Pediatrics, 249-258.
Garcia-Manzanares, A., & Lucendo, A. (2011). Nutritional and Dietary Aspects of Celiac Disease. Nutrition in Cilnical Practice, 163-173.
Kostopoulou, O., Devereaux-Walsh, C., & Delaney, B. (2009). Missing Celiac Disease in Family Medicine: The Importance of Hypothesis Generation. Decision Making in Clinical Practice, 282-290.
Olsson, C., Lyon, P., Hornell, A., Ivarsson, A., & Sydner, Y. (2009). Food that Makes You Different: The Stigma Experienced by Adolescents with Celiac Disease. Qualitatitve Health Research, 976-984.
Pietzak, M., Catassi, C., Drago, S., Fornaroli, F., & Fasano, A. (2001). Celiac Disease: Going Against the Grains. Nutrition in Clinical Practice, 335-344.
See, J., & Murray, J. (2006). Gluten-Free Diet: The Medical and Nutrition Management of Celiac Disease. Nutrition in Clinical Practice, 1-15.
Tennyson, C., Lewis, S., & Green, P. (2009). New and Developing Therapies for Celiac Disease. Therapeutic Advances in Gastroenterology, 303-309.