Celiac disease is an autoimmune disease.1–3 In patients with celiac disease, gluten ingestion causes chronic intestinal inflammation.1–3 This chronic inflammation damages the intestinal lining and may lead to malabsorption of nutrients, vitamins, and minerals, and result in numerous other health concerns.4 Celiac disease is 1.5 to 2 times more prevalent in women than men.3 The prevalence of celiac disease in the United States is rising. Studies suggest the prevalence of the disease experienced a five-fold increase during the past 25 years2,5 and for each person diagnosed as having celiac disease, an additional 3 to 10 people may remain undiagnosed.1,5,6
Currently, the only treatment for celiac disease is a gluten-free diet.7–15 Gluten is a protein found primarily in grains such as wheat, rye, and barley. However, gluten is often used as an ingredient binder; therefore, it is found in many traditionally wheat-free foods and personal care items, which can be unexpected to consumers. Due to the pervasiveness of wheat in manufactured products, adherence to the diet is difficult. Strict compliance with a gluten-free diet ranges from 42% to 91%.16–19 Additional known barriers to maintaining a gluten-free diet include the availability, quality, and cost of gluten-free food and inadequate product labeling (eg, mislabeled, vague labels, or no ingredient labels).16,18,20,21
Non-compliance with a gluten-free diet may cause both acute and chronic issues. Acutely, individuals may experience gastrointestinal symptoms, such as diarrhea and abdominal distention.3 Over time, chronic exposure to gluten may result in the malabsorption of key vitamins and minerals. This malnourishment may present in a variety of disorders, including osteoporosis secondary to the lack of calcium and vitamin D4, iron-deficient and/or vitamin-deficient anemia due to the lack of iron, vitamin B12, and folic acid,22 and an increased risk for infertility, cancer, and death.23–27
Celiac disease is classified as an “invisible disability” or a disability that is not immediately apparent.28,29 Invisible disabilities are included in the protections of the Americans with Disabilities Act (ADA).30 This protection “prohibits discrimination and ensures equal opportunity for persons with disabilities in employment, state and local government services, public accommodations, commercial facilities, and transportation.”30 The ADA requires a “reasonable accommodation” must be provided by the institution.30 However, these protections are not always implemented. In 2012, a group of students brought a lawsuit against Leslie University (Cambridge, MA) for lack of accommodations for students with celiac disease.28,29 In the settlement, Leslie University was ordered to provide gluten-free dining options, display food allergy signage, and label food containing specific allergens in all dining halls. In addition, they were required to provide educational programming with a focus on food intolerances for all food service and university staff and pay $50,000 in damages to the plaintiff.28,29 It is unknown if this was an isolated event or if the lack of reasonable accommodation for students with celiac disease is more widespread among college campuses. The prevalence of celiac disease among college students and the typical accommodations provided for these students by institutions of higher education is unknown. However, a survey by the New England Celiac Organization reported 60% of college students “were unlikely to recommend their university to others with celiac disease.”31
Although all college students depend on campus dining services to a varying extent, student-athletes with celiac disease may be particularly affected by a lack of available options due to the physical and time demands of their sport. Ayers et al.32 reported student-athletes recorded in a daily journal spending an average of 31.25 hours per week participating in team-related activities during the competitive season. For many student-athletes, these activities are not limited to the playing field. Many universities require student-athletes to attend additional events such as strength and conditioning sessions, team meetings, service commitments, and study hall. For student-athletes with celiac disease, these additional athletic-related commitments result in less time available for meal planning and preparation. Traveling to competitions may also present a unique challenge for student-athletes due to the lack of access to refrigeration/microwaves, the availability of gluten-free food options at restaurants, and time required for travel.
The aim of this study was to describe the student-athlete's perception of and experience with the existing accommodations and support provided by the educational institution and, specifically, by the athletic medical staff. An example of an accommodation may include providing gluten-free food alternatives. An example of support may include psychosocial assistance (ie, counseling), health care referral, or guidance with university services. A secondary aim of the study was to determine any desired accommodations and support, not currently provided, to assist in maintaining a gluten-free diet. The potential outcomes of this study could affect the overall health of student-athletes with celiac disease, which, in turn, may affect individual athletic performance.
A phenomenological, qualitative approach was used to explore the experience of collegiate student-athletes with celiac disease to better understand how they think and feel about the current level of accommodations and support provided by the university and the desired level of accommodations and support needed to maintain a gluten-free diet. This type of approach was selected for its ability to investigate the lived experience of people and to develop patterns and relationships of meaning.33
Purposive sampling methods were used to select participants (n = 11; 2 male, 9 female) who could address the research study's questions and aims.13 The inclusion criteria for participation were: formal diagnosis of celiac disease by a physician and current member of a varsity sports team competing at the National Collegiate Athletic Association (NCAA) Division I, II, or III level. Non–English-speaking individuals were excluded. A consecutive sampling technique was used to enroll participants. The initial 6 student-athletes enrolled in the study were interviewed using a semi-structured interview guide and asked to complete reflective journal entries throughout the course of the study. Reflective journal entries were completed by 5 of the 6 interview participants.34 Data were collected and analyzed using a spiral approach that included collecting data, analyzing and assessing the data for new information, recruiting new participants, and collecting and analyzing data until no new data were found. Saturation of data occurred when data became redundant.34 Saturation of data was reached when no new data were found. An additional 5 student-athletes were recruited and enrolled for participation in a focus group. One student-athlete chose to participate in both the semi-structured interview and focus group for a total of 6 focus group participants. The student-athletes represented a variety of sports and all three NCAA membership divisions: I (n = 3), II (n = 4), and III (n = 4) (Table 1). Institutional review board approval was obtained from Rocky Mountain University of Health Professions before recruiting participants and all participants signed an informed consent document prior to data collection.
Demographic Information by Participant
The primary researcher (JS) collected data via semi-structured interviews, reflexive journals, and a focus group. The semi-structured interview guide and journal questions (Table A, available in the online version of this article) were developed based on the research objectives and a review of the literature. Participants were assigned a pseudonym to maintain confidentiality. All interviews were digitally recorded and transcribed verbatim. Following each interview, participants were asked to complete four journal entries (2 times a month for 2 months) to document the specific day-to-day challenges faced by student-athletes with celiac disease.
Interview Guides and Journal Questions
After data saturation was achieved, the results of the semi-structured interviews and journal entries were used to develop a focus group interview guide (Table A) to collect a wide array of views on the accommodations and support provided to students by their universities, determine what additional accommodations and/or support the student-athletes desire, and strengthen the trustworthiness and credibility of this study.33 The focus group was conducted via an online videoconference platform ( gotomeeting.com) to accommodate participants from various geographic locations. The focus group was digitally recorded and transcribed verbatim.
A content analysis approach was used to analyze all text documents; data analysis was completed by the primary researcher using qualitative software (NVivo for Mac; QSR International Inc., Cambridge, MA).35 Data from the semi-structured individual interviews, journal entries, and focus group were organized into units of analysis using open coding.35 Similar units of analysis were grouped into categories.35 Related categories were clustered together to form main categories and illustrated in a concept map. A researcher who was not involved with this study but with an athletic training background performed a peer review of the data. Member-checks allowed participants to review the transcriptions of the semi-structured interviews and the coded interviews and journals after the external review of the data. Participants were allowed to make corrections, clarify, or delete any data provided.
Overall, participants reported various levels of accommodation and/or support provided by their university. A summary of the participants' reports of the accommodations and support received is listed in Table 2. Accommodations received were primarily from dining services and athletic department personnel (eg, coaches or athletic trainers), whereas support was provided by a variety of sources, including the health center staff, peers and parents, and coaches, athletic trainers, and other athletic department staff. Participants also reported using independent strategies such as supplying their own food, self-advocacy, and educating the athletic department staff. Accommodations and support not provided but desired include gluten-free alternatives for food provided by the athletic department, education related to celiac disease for university/athletic personnel, and improved gluten-free options in dining halls or financial reimbursement for food.
Frequency of Positive and Negative Responses for Each Category
Current Accommodations and Support
Students discussed accommodations provided by dining and other, non-athletic, university services. Some participants reported their dining services offered a gluten-free section. These participants were grateful for this accommodation and expressed less food insecurity. Sarah responded: “one of our main dining halls on campus has a gluten-free section which, it's not huge, but it's a section where there's always things that are gluten free. I know there's always food there.”
Another accommodation provided by some institutions was the ability to call ahead to order gluten-free meals. Karen described this accommodation:
. . .at the beginning of the year, they (the dining hall managers) gave me their phone numbers, they're like if you ever have a craving for something or you want to come in and you want us to make something ahead of time, give us a call. I've asked them to make me a plate of gluten-free pasta [telling them] I'll be in at 5:30 with a couple friends and they have it ready for me.
At some institutions, the dining services staff provided psychosocial support for the students. Karen described her experience receiving counseling from the head nutritionist as an incoming freshman: “I was in contact with one of the head nutritionists for the school, who is also the manager of the dining halls and we were talking very regularly. This gave me the feel for what I could have, and what I couldn't have and what I shouldn't really have.”
Food labeling for allergens was also helpful. Amy stated: “They [dining services] would make sure they labeled all the food for any allergens and they had at least some gluten-free options, always a gluten-free protein, carbohydrate, and a salad bar.” Karen reported her dining hall offered several types of accommodations, including: gluten-free options, call ahead meals, procedures to decrease cross-contact, labeling for allergens, and support provided by the dieticians and dining hall managers. This was the most reported by any participant.
Regardless of the amount of accommodations provided, participants appreciated all efforts of dining services and discussed how these modifications provided a sense of normalcy. Mary said: “When I was informed, they would make me a gluten free plate, have it ready for me, and make the situation less dramatic, I felt more comfortable and not like an outsider.”
Another place on campus where students found support was the health center. Georgia reported receiving additional support after experiencing symptoms from cross-contact with gluten in the dining halls. This chronic exposure from cross-contact resulted in severe illness and she moved out of the dormitory 1 month after school started as a result of the illness. The health center staff directed her to the kitchen supervisors and dietician to help solve the issue.
The assistance provided by the university, especially by the dining services, helped reduce the participants' stress. Students felt secure with the food options available and the ability to eat with their friends provided a sense of normalcy. When these accommodations were not provided, the student-athletes were forced to search for alternative options, which they described as costly in both time and money.
Participants reported good support from their social network (eg, parents and roommates). Sarah commented: “My roomie, her sister is gluten sensitive, so she has a background in it and she knows what I can and can't have. She doesn't really offer me things that I can't have.” Sam also reported having supportive roommates. He stated: “They are all good about it. In our room, I have my own toaster. They understand. They respect that. They know that it's something I need to do.” Sam also shared that he is still receiving support from his parents: “My baseball team was [traveling] and we went out to dinner at a Pizza Hut, who did not have gluten-free options. My parents bought me gluten-free food elsewhere and brought it to me at Pizza Hut. So, I could eat with my team.”
Because the participants were student-athletes, they were eligible for services provided by the athletic department staff (eg, coaches and athletic trainers). Amy reported receiving support from her coaches: “My coaches constantly ask me, ‘Did you get enough to eat?’ One time we went to a hotel that said for breakfast they would have gluten-free options and it turned out that they didn't. My coaches, like three of them, offered to take me out to breakfast but I brought my own.” When traveling for athletic events (ie, competitions), it is common practice for student-athletes to receive either an allotted amount of money, known as per diem, from the athletic department to purchase food while away from campus or be provided a dollar limit per entrée when dining as a team. Because gluten-free food often costs more and is less readily available, these practices can be tricky for those with celiac disease. Elizabeth described how her coaches accommodated her by allowing her to exceed her food stipend due to the increased cost of gluten-free food. In addition to meals, the department typically provides snacks for the student-athletes when traveling to away events. Heather said her coaches are supportive by asking what kind of snacks and food she would like for road trips.
Some participants reported receiving support from their athletic trainers. Athletic trainers are charged with providing “preventative and emergency care of injuries and other medical conditions through either clinical diagnosis or referral as well as provide strategies for therapeutic intervention and rehabilitation.”36 This includes the dietary needs of the athlete.37 Amy reported her athletic trainer gained knowledge of celiac disease as a result of working with a previous athlete and providing assistance by helping to educate her coaches. Mary's athletic trainer provided a referral to a nutritionist after she was first diagnosed as having celiac disease. The nutritionist was able to provide information about foods containing gluten, foods to avoid, and foods to eat to help with Mary's nutritional deficiencies resulting from the celiac disease.
Participants also reported receiving assistance from other members of the athletic staff. In her journal, Karen wrote about how a member of the athletic department staff accommodated her:
As an athlete, I am required to go to monthly life skills meetings. Sometimes, dinner is served at these presentations. Because there would not have been any gluten-free options for me, I contacted the organizer of the event before the first meeting to let her know that I had celiac. She made sure that the catering staff had something prepared and waiting for me, which I was incredibly thankful for.
With the support of their coaches and athletic trainers, student-athletes experienced less food insecurity and, as a result, were able to focus more on their sport. In addition, student-athletes are more likely to receive the recommended nutrition while traveling and therefore minimize the risk of decreased performance. However, this is not always the case. Some participants cited times when they were not able to eat properly before a sporting event and, as a result, it negatively affected their performance. Cole described how the lack of gluten-free food affected his swimming performance:
We would usually go for a place like (a pasta restaurant). . .everybody would be getting a lot of carbohydrates, pastas and something like that and I would be eating chicken Caesar salad. The first day (of the meet), I performed really well, and I ate pretty well in the days prior. . . . By the last day my body was a little worn out because of the level of swimming but I also feel like the food that I was receiving also played a role. I wasn't fed as well as I would've liked. It's tough to say if food choices played a role but I feel like it kind of put me at a slight disadvantage because I wasn't getting the food that everybody else was getting to perform at a high level.
Traveling for away events can be stressful for all student-athletes; however, this stress is magnified for student-athletes with celiac disease because of the lack of control of food options. To combat this, some student-athletes choose to pack their own food for trips. This preparation may relieve their food insecurity, but it adds the stress of allocating already limited resources to buy, prepare, and pack their provisions.
Many participants described self-support strategies to fulfill their needs. These included providing their own food, advocating for themselves, and educating the athletic department staff regarding needed accommodations and support. Elizabeth stated she provided her own food on road trips due to the lack of options at restaurants and concerns of cross-contact. Amy spoke about providing her own food for team dinners: “I cook almost all my own meals even when we have team dinners. If they are in town, if they are supposed be at someone's house, team organized dinners not organized by the coaches or anything, I still prepare my own food.”
The participants spoke about how they had to advocate for themselves to make sure their needs were met. Amy explained her strategy for eating on road trips:
I meet with our director of operations and she's the person who plans our meals and what we are going to eat on travel trips. She always sends out menu options to the entire team and I go and sit with her to make sure that the restaurants have been called and that I have options. And if there aren't any options at the place that we're going, I help her find a place that does have gluten-free options that is pretty close. She'll help me go pick up the food and come back and eat with the team.
Sometimes participants found success by educating those who are providing the services. Elizabeth discussed how speaking to the manager of dining services helped to increase the available food choices: “When I started in 2013, they didn't have much [options] but then I started talking to the manager. And he started bringing in gluten-free bagels, gluten-free bread. He had a lot of options—just simple things.” Karen discussed a similar meeting with the school dietician: “As a student athlete, I visited campus for a weekend over the summer for practice. During the weekend, I requested to meet with the university dietician to discuss my concerns and dietary needs.” Finally, Ann explained how she had to advocate for herself to her coaches: “My coach will try to remember and try to plan ahead but a lot of people don't really understand it entirely. It ends up being me having to speak up or my coach will take me to [the grocery store] and get snacks.” The same was true for the athletic training staff. Ann, who is majoring in athletic training, spoke about educating the athletic training staff about celiac disease and how to accommodate athletes with celiac disease. However, this was not always easy for our participants. Several journal entries described the difficulties of advocating for themselves and how uncomfortable it made them feel. For example, Karen wrote: “During new student orientation, lines in the dining halls were extremely long. Because of this, I felt very rushed and overwhelmed. I was afraid to ask the questions I needed to in order to find out what was safe for me to eat.”
Desired Accommodations and Support
Student-athletes also discussed desired accommodations and support options to help with their disease. These include increased gluten-free choices, additional education for university/athletics staff, and/or financial accommodations.
Increased Gluten-free Options.
Participants were frustrated by the lack of gluten-free options available. They described the availability of gluten-free options provided either by dining services or the athletic department as unreliable. This created a sense of food insecurity and forced the participants to plan ahead, which resulted in increased stress both financially and on their limited amount of time. Cole's ideas for improving the dining hall options were to offer more than the traditional salad bar and include one option at every meal for those with dietary restrictions. Additionally, many athletic programs provide snacks for student-athletes throughout the day. Diane addressed the desire for options available for all athletes: “We don't get our meals as athletes, but we have a snack station basically in our weight room. It has a bunch of sandwiches and stuff that people eat for their lunch, but I can't have the bread. So, to have separate stuff that I can eat would be awesome.”
The student-athletes felt the athletic training staff should plan and provide snacks for student-athletes with dietary restrictions. This would help ensure the nutritional quality of the snacks and reduce the risk of cross-contact. In addition, the athletic trainers would become familiar with the dietary restrictions of their student-athletes.
Education of University/Athletics Staff.
Participants felt university and athletic employees need an increased knowledge of celiac disease. Cole discussed how dining service employees could benefit from increased education: “I would definitely recommend they're a little bit more knowledgeable about providing meals to the kids on campus that can't eat regular food, not only would that encompass celiac disease but other disorders as well.” Sarah agreed: “I keep trying to understand that it's not everyone's knowledge [base], but I think that there should be some degree of knowledge if you're working in the food service industry, especially on college campuses, about things like celiac disease. Because there are some people [who] are severely affected by [gluten].” Ann referred to the education of the athletic trainers: “I think it would be awesome if it was part of the athletic trainers' educational background, if they were educated more on nutrition and different situations like celiac disease.”
Students with celiac disease are charged for a standard meal plan but have a decreased number of food options. As a result, many students with celiac disease are forced to provide their own food. Participants in this study expressed a need for financial assistance to help offset the high cost of gluten-free food, especially if the lack of gluten-free options in the dining halls did not change. This assistance could be in the form of a reduced rate for a standard meal plan or reimbursement for groceries if they are unable to eat at the dining halls. Diane thought a monthly stipend might help: “It would be nice to get like a small stipend or something. I know it's difficult with scholarships and stuff, like whether they're on scholarship or not but regardless of whether you're on scholarship, you need to eat.”
Overall, our participants reported varied levels of accommodations and support provided by their institutions. This gap in services resulted in food insecurity. Some participants initiated coping techniques to overcome their food insecurities, which stressed their limited resources of time and money. Despite all participants reporting some level of assistance, student-athletes expressed more accommodations and support are needed to better manage their celiac disease.
In this study, student-athletes with celiac disease required support on multiple levels due to their difficulty adhering to the gluten-free diet and the resulting medical issues from dietary non compliance. All participants reported receiving some level of accommodation and support from their institution. These included university support, athletic department support, social support, and self-strategies. The amount of assistance provided varied greatly among participants. Desired additional accommodations and support included more gluten-free options, increased education of university/athletics staff, and financial assistance.
To date, there is no published report of the accommodations and support provided by universities to their student-athletes with celiac disease. This study's findings are similar to Panzer et al.'s38 survey of multiple institutions of higher education, which found limited labeling of ingredients and a varied offering of gluten-free alternatives by dining services. Although celiac disease is a disability recognized by the ADA, only four states (Massachusetts, Michigan, Rhode Island, and Virginia) mandate allergen training in the food industry. However, this mandated training may not be specific to celiac disease because it is an autoimmune disease and not a food allergy. Therefore, gluten is not recognized as a known allergen.39
All of the institutions represented in this study provided some level of accommodation or support to their student-athletes, yet participants were still challenged by their condition and desired additional support. One solution student-athletes used to overcome their challenges was to provide their own food. As a result, these participants reported increased expenses compared to their peers. Additionally, participants were forced to advocate for services and sometimes educate members of the athletic department (eg, coaches and athletic trainers) and dining services about the disease. This often made participants feel uncomfortable, which is consistent among those who are forced to advocate for themselves.38 Opportunities exist for institutions to increase their services to students with dietary restrictions. One recommendation is for universities to consider offering organized tours of the dining halls with food service managers and/or staff dieticians to assist students with food restrictions better navigate their dining options.
Social support provided by peers was high. This is encouraging because Olsson et al.40 reported compliance with the gluten-free diet was dependent on several factors, one of which was a social support network. For the collegiate student-athlete, this network may include roommates, teammates, coaches, athletic trainers, and dining hall staff. Additionally, knowledge and acceptance of the diagnosis of celiac disease may affect compliance with the gluten-free diet.40 University staff can play a vital role helping newly diagnosed students learn about celiac disease, a gluten-free diet, and developing a support network.
Participants described their ideal accommodations and support. One of the main themes for ideal accommodations and/or support was more gluten-free options and increased education of university staff. These findings are consistent with the literature.38 Students also expressed the desire for financial accommodations and support to offset the cost associated with buying gluten-free food when acceptable options were not available through dining services. When this occurs, the student-athletes experience food insecurity and are forced to find other options or not eat. Gluten-free food is expensive; Lee et al.41 found gluten-free products cost 240% more than their wheat counterparts.
Implications for Clinical Practice
Participants expected university staff, including the sports medicine staff, to be knowledgeable of and equipped to provide the support necessary for student-athletes with celiac disease. Education may reduce the potential for cross-contact of foods, which is linked to accidental exposure to gluten. For a person with celiac disease, exposure to even small amounts of gluten can result in inflammation in the intestines. This inflammation can cause physical symptoms such as bloating, nausea, and diarrhea, as well as damage to the intestines, which can decrease the absorption of nutrients.4 Accidental exposure to gluten and the associated symptoms is one of the primary reasons participants believe they must buy and prepare their own food. Providing education for members of the athletic department, primarily the coaching staff, would help decrease the stress student-athletes experience during athletic-related travel. Including the sports medicine staff in this training may increase the detection of celiac disease in undiagnosed individuals, prevent cross-contact/accidental gluten exposure, and reduce medical errors such as recommending medications containing gluten.
An increased awareness of the accommodations and support services currently offered by the institution and considering ways the university may respond to the desired needs of its student body may allow university administration to design protocols to better assist its students, including student-athletes, to manage their celiac disease. Creating a university-wide support system may reduce stress, improve compliance with the gluten-free diet, prevent unnecessary health problems, and assist the university in becoming ADA compliant.
Limitations and Future Directions
Although our study provided some meaningful findings regarding current and desired accommodations and support for collegiate student-athletes with celiac disease, it is not without limitations. First, the sample was small and consisted of participants from universities who compete within the NCAA. It did not include student-athletes who participate in club sports or other athletic associations. Additionally, the accommodations and support received were self-reported by participants and may not be an accurate reflection of the services offered by the institution.
Future research should explore whether the accommodations and support provided affect compliance with the gluten-free diet, student-athlete knowledge of ADA regulations, and how institutions may consider altering their accommodations and support based on student feedback. Conversely, it may be worthwhile to examine whether accommodations and support vary between NCAA membership divisions or sports (ie, revenue-generating vs non–revenue-generating). It would also be prudent to investigate whether the accommodations and support provided by the institution affected student performance, both athletically and academically. Finally, university officials may wish to explore how the level of accommodations and support provided, as well as their responsiveness to student feedback, affect the recruitment and retention of student-athletes.
Universities provide accommodations and support of varying degrees for student-athletes with celiac disease. This study's findings describe the current accommodations and support received, as well as additional desires of a limited number of student-athletes of NCAA member schools. Areas of current accommodations and support include university support, social support, support by the athletic department, and self-support. All student-athletes reported using some level of self-support due to limited accommodations and support provided by their institution. Desired accommodations and support included improved gluten-free options, education of the university/athletic department staff, and financial support. An awareness of the desired accommodations and support of student-athletes with celiac disease may assist university staff to design protocols that better allow all students, including student-athletes, to successfully maintain a gluten-free diet.
- Lionetti E, Gatti S, Pulvirenti A, Catassi C. Celiac disease from a global perspective. Best Pract Res Clin Gastroenterol. 2015;29:365–379. doi:10.1016/j.bpg.2015.05.004 [CrossRef]
- Catassi C, Kryszak D, Bhatti B, et al. Natural history of celiac disease autoimmunity in a USA cohort followed since 1974. Ann Med. 2010;42:530–538. doi:10.3109/07853890.2010.514285 [CrossRef]
- Fasano A, Catassi C. Celiac disease. N Engl J Med. 2012;367:2419–2426. doi:10.1056/NEJMcp1113994 [CrossRef]
- Martin S. Against the grain: an overview of celiac disease. J Am Acad Nurse Pract. 2008;20:243–250. doi:10.1111/j.1745-7599.2008.00314.x [CrossRef]
- Catassi C, Gatti S, Fasano A. The new epidemiology of celiac disease. J Pediatr Gastroenterol Nutr. 2014;59(suppl 1):S7–S9. doi:10.1097/01.mpg.0000450393.23156.59 [CrossRef]
- Fasano A, Catassi C. Current approaches to diagnosis and treatment of celiac disease: an evolving spectrum. Gastroenterology. 2001;120:636–651. doi:10.1053/gast.2001.22123 [CrossRef]
- Lionetti E, Catassi C. New clues in celiac disease epidemiology, pathogenesis, clinical manifestations, and treatment. Int Rev Immunol. 2011;30:219–231. doi:10.3109/08830185.2011.602443 [CrossRef]
- Arnone J, Fitzsimons V. Adolescents with celiac disease. Gastroenterol Nurs. 2012;35:248–254. doi:10.1097/SGA.0b013e31825f990c [CrossRef]
- Thompson T, Dennis M, Higgins L, Lee A, Sharrett M. Gluten-free diet survey: are Americans with coeliac disease consuming recommended amounts of fibre, iron, calcium and grain foods?J Hum Nutr Dietet. 2005;18:163–169. doi:10.1111/j.1365-277X.2005.00607.x [CrossRef]
- Hlywiak K. Hidden sources of gluten. Pract Gastroenterol. 2008;September:27–39.
- Dennis M, Case S. Going gluten-free: a primer for clinicians. Pract Gastroenterol. 2004;April:86–104.
- Shepherd SJ, Gibson PR. Nutritional inadequacies of the gluten-free diet in both recently-diagnosed and long-term patients with coeliac disease. J Hum Nutr Diet. 2013;26:349–358. doi:10.1111/jhn.12018 [CrossRef]
- Kautto E, Rydén PJ, Ivarsson A, et al. What happens to food choices when a gluten-free diet is required? A prospective longitudinal population-based study among Swedish adolescent with coeliac disease and their peers. J Nutr Sci. 2014;3:e2. doi:10.1017/jns.2013.24 [CrossRef]
- Case S. The gluten-free diet: how to provide effective education and resources. Gastroenterology. 2005;128:S128–S134. doi:10.1053/j.gastro.2005.02.020 [CrossRef]
- Szaflarska-Poplawska A. Non-dietary methods in the treatment of celiac disease. Prz Gastroenterol. 2015;10:12–17.
- Hall NJ, Rubin G, Charnock A. Systematic review: adherence to a gluten-free diet in adult patients with coeliac disease. Aliment Pharmacol Ther. 2009;30:315–330. doi:10.1111/j.1365-2036.2009.04053.x [CrossRef]
- Kumar P W-SJ, Harris M, Colyer J, Halliday R. The teenage coeliac: follow up study of 102 patients. Arch Dis Child. 1988;63:916–920. doi:10.1136/adc.63.8.916 [CrossRef]
- Villafuerte-Galvez J, Vanga RR, Dennis M, et al. Factors governing long-term adherence to a gluten-free diet in adult patients with coeliac disease. Aliment Pharmacol Ther. 2015;42:753–760. doi:10.1111/apt.13319 [CrossRef]
- Kurppa K, Lauronen O, Collin P, et al. Factors associated with dietary adherence in celiac disease: a nationwide study. Digestion. 2012;86:309–314. doi:10.1159/000341416 [CrossRef]
- MacCulloch K, Rashid M. Factors affecting adherence to a gluten-free diet in children with celiac disease. Paediatr Child Health. 2014;19:305–309. doi:10.1093/pch/19.6.305 [CrossRef]
- Shah S, Akbari M, Vanga R, et al. Patient perception of treatment burden is high in celiac disease compared with other common conditions. Am J Gastroenterol. 2014;109:1304–1311. doi:10.1038/ajg.2014.29 [CrossRef]
- American Society of Hematology. Anemia. American Society of Hematology. www.hematology.org. Published 2015. Accessed August 18, 2018.
- Schuppan D, Zimmer KP. The diagnosis and treatment of celiac disease. Dtsch Arztebl Int. 2013;110:835–846.
- Lasa J, Zubiaurre I, Soifer L. Risk of infertility in patients with celiac disease: a meta-analysis of observational studies. Arq Gastroenterol. 2014;51:144–150. doi:10.1590/S0004-28032014000200014 [CrossRef]
- Rubio-Tapia A, Kyle RA, Kaplan EL, et al. Increased prevalence and mortality in undiagnosed celiac disease. Gastroenterology. 2009;137:88–93. doi:10.1053/j.gastro.2009.03.059 [CrossRef]
- Ludvigsson JF, Montgomery SM, Ekbom A, Brandt L, Granath F. Small-intestinal histopathology and mortality risk in celiac disease. JAMA. 2009;302:1171–1178. doi:10.1001/jama.2009.1320 [CrossRef]
- Peters U, Askling J, Gridley G, Ekbom A, Linet M. Causes of death in patients with celiac disease in a population-based Swedish cohort. Arch Intern Med. 2003;163:1566–1572. doi:10.1001/archinte.163.13.1566 [CrossRef]
- Johnson A. Colleges must now serve up gluten-free fare. Boston Globe. 2013;Metro.
- Settlement agreement between the United States of America and Lesley University, December 20, 2012 (2012).
- United States Department of Justice. United States Department of Justice. www.ada.gov. Published 2015. Accessed August 18, 2018, 2018.
- New England Celiac Organization. Overview of findings: New England Celiac Organization (NECO) Spring 2016 college survey. www.nationalceliac.org: New England Celiac Organization; 2016.
- Ayers K, Pazmino-Cevallos M, Dobose C. The 20-hour rule: student-athlete time commitment to athletics and academics. VAHPERD Journal. 2012;33:22–27.
- Bloomberg LD, Volpe M. Completing Your Qualitative Dissertation: A Road Map from Beginning to End, 2nd ed. Thousand Oaks, CA: SAGE Publications; 2012.
- Hennink M, Hutter I, Bailey A. Qualitative Research Methods. London, UK: SAGE Publications; 2012.
- Elo S, Kyngas H. The qualitative content analysis process. J Adv Nurs. 2008;62:107–115. doi:10.1111/j.1365-2648.2007.04569.x [CrossRef]
- National Athletic Trainers' Association. Who are athletic trainers? National Athletic Trainers' Association. www.nata.org. Published 2016. Accessed August 18, 2018, 2018.
- National Athletic Trainers' Association. Athletic Training Education Competencies. Carrollton, TX; Author: 2011.
- Panzer RM, Dennis M, Kelly CP, Weir D, Leichtner A, Leffler DA. Navigating the gluten-free diet in college. J Pediatr Gastroenterol Nutr. 2012;55:740–744. doi:10.1097/MPG.0b013e3182653c85 [CrossRef]
- Food Allergy Research & Education, Inc. Food allergies and restaurants. www.foodallergy.org/advocacy/restaurants. Published 2016. Updated February 5, 2016. Accessed August 18, 2018.
- Olsson C, Hörnell A, Ivarsson A, Sydner Y. The everyday life of adolescent coeliacs: issues of importance for compliance with the gluten-free diet. J Hum Nutr Diet. 2008;21:359–367. doi:10.1111/j.1365-277X.2008.00867.x [CrossRef]
- Lee A, Ng D, Zivin J, Green P. Economic burden of a gluten-free diet. J Hum Nutr Diet. 2007;20:423–430. doi:10.1111/j.1365-277X.2007.00763.x [CrossRef]
Demographic Information by Participant
School Size (Division)
Year in School
Frequency of Positive and Negative Responses for Each Category
Accommodation/Support Not Availablea
| Accommodation by dining services
| Health center
| Athletic trainers
| Athletic department
| Providing own food
| Educating athletic department staff
Interview Guides and Journal Questions
Semi-structured Individual Interview Guide
How did you manage your celiac disease prior to coming to college?
What were your concerns about coming to college as a student-athlete with celiac disease?
Did these concerns affect your decision of which university to attend?
Talk to me about how you manage your celiac disease while at college.
What are some of the challenges you have experienced as a college athlete with celiac disease?
What challenges did you experience trying to maintain a GFD?
What type of accommodations/support, if any, did your university provide to help you deal with celiac disease?
What type of accommodations/support do you feel you need(ed) or want(ed) from the university?
Did you have to request accommodations or were they already in place?
Can you talk to me about how the university responded to your requests for accommodations?
Can you explain the role and involvement of the university medical staff in assisting you with celiac disease?
Do you feel like you need support managing your celiac disease?
Can you explain the role your coaches, teammates, roommates, and friends had/have in helping you manage your celiac disease?
Can you talk to me about how celiac disease has affected your athletic performance?
If you could make any changes in how the university including the athletic medical staff and coaches provides care to student-athletes with celiac disease, what would they be?
What would be your ideal description of how a university may service a student with celiac disease?
Is there anything you like to add that I might have missed?
What questions do you have for me?
Focus Group Interview Guide
Please describe any challenges you have encountered in the university setting as a result of your celiac disease.
Please describe a recent event or interaction where support was given or needed.
How has this event or interaction affected you (emotionally, mentally, physically, financially)?
How did these issues affect your athletic performance?
Can you tell me about the challenges you face while trying to manage your celiac disease while travelling for your sport?
–Probes: Coach's priority?
What are the current accommodations and support that are offered to you by athletics to help manage your celiac disease? I am looking for any information about the accommodations and support offered to you by anybody involved with your sport that would mean coaches, athletic trainers, physicians, strength and conditioning coaches, the athletic dept. or anybody else involved with your team.
What type of accommodations or support has your athletic trainer offered to you? If no support has been given, have you asked your athletic trainer for any?
What accommodations and support would you like to see provided to you as an athlete?
What types of accommodations and support would you like to see to help with the increased cost of gluten-free food?