Product Details

Author Information

Corresponding Author
Debby Walser-Kuntz
Carleton College
One North College St.
Northfield, MN 55057
United States
p: 507-222-5756
dwalser@carleton.edu

Authors (listed in order of authorship):
Debby Walser-Kuntz
Carleton College

Emiri Matsuda
Carleton College

Phuoc "Tien" Tran
Carleton College

Julie Salato
Celiac Center of Minnesota

Jody Friedow
Can't Eat Wheat Group

Product Description and Application Narrative Submitted by Corresponding Author

What general topics does your product address?

Biological Sciences, Public Health

What specific topics does your product address?

Advocacy, Chronic disease, Community engagement, Curriculum development, Health education , Service-learning

Does your product focus on a specific population(s)?

NA

What methodological approaches were used in the development of your product, or are discussed in your product?

Community-academic partnership, Service-learning

What resource type(s) best describe(s) your product?

Curriculum, Service learning material

Application Narrative

1. Please provide a 1600 character abstract describing your product, its intended use and the audiences for which it would be appropriate.*

Students enrolled in an Immunology course collaborated with their partners in the Celiac Disease (CD) community to build “Celiac and Me”, a website which aims to engage, educate, explore, and empower. Community partners identified the need for CD-related materials as education empowers those living with CD to advocate for themselves. As part of the course, students developed scientifically accurate materials for the site, including a model of the small intestine, a picture book, and a movie with an associated PowerPoint presentation. These age-appropriate resources engage and educate CD patients, family members, friends, and health educators. The gut model encourages the exploration of the function of the small intestine and introduces the immune response that occurs when individuals with CD eat gluten. Similarly, picture books facilitate dialogue within families by creating a shared reading experience and empower children by providing coping mechanisms and letting them know they are not alone. Because many people do not understand the science behind the requirement for a strict gluten-free diet, kids with CD must often self-advocate when not at home. The PowerPoint template and its linked movie, both developed in consultation with kids living with CD, encourage such self-advocacy. This community-based academic civic engagement (ACE) project allowed students to explore both a public health issue with close ties to the immune system and strategies to translate scientific knowledge for a non-scientist audience.

2. What are the goals of the product?

The goals of the “Celiac and Me” website are to educate, engage, empower, and explore. A website allows us to adapt to the changing needs of our community partners and to compile celiac resources in a central location easily accessed from any device with an Internet connection.

Educate: The website educates readers about the immunology behind CD by
· translating complex scientific information for individuals with little scientific background,
· functioning as a central hub to increase CD scientific literacy by adding new materials and linking to existing websites, and
· providing up-to date information based on current research.

Engage: The user-friendly interface engages the site visitor with images and videos and fosters effective learning about celiac disease by
· accommodating a range of ages and needs,
· allowing readers to share information with others, and
· making pictures, infographics, and printable handouts available.

Empower: The “Celiac and Me” site empowers those diagnosed with CD by
· providing access to resources and tools that encourage self-advocacy in healthcare, school, and social settings,
· facilitating active dialogue between kids, parents, and school staff to raise awareness in an educational setting, and
· clearing up misconceptions for patients and non-patients that portray CD as an allergy or a gluten-free diet as a fad.

Explore: Website visitors will explore a variety of educational materials and different types of media (e.g. 3D models, movies, picture books) suitable to use in either individual or group settings.

Through individual or combined activities, visitors to the site will:
gain a basic understanding of the role of the immune system in CD (Educate)
be inspired to discover more (Explore) and share awareness with others (Engage)
find tools to cope, accept, and self-advocate if diagnosed with CD (Empower)
find tools to help advocate and build a supportive community if a family member or friend (Empower)

Each activity addresses more than one of these learning objectives. The gut model stresses education and exploration, conveying scientific background in an accessible format to be shared and applied. The picture book empowers children by providing coping mechanisms in an engaging manner, while the PowerPoint template and movie empowers self-advocacy and raises awareness through education.

3. Who are the intended audiences or expected users of the product?

“Celiac and Me” is intended for children and adolescents diagnosed with CD, their families or friends, health educators, and CD support groups. Additionally, health professionals may direct patients to the site to aid in understanding the disease and coping with the diagnosis. The site includes activities for pre-K+ children (picture book), grade school children (model building, picture book, and movie), and teens (movie, PowerPoint, and scientific background). Adult interaction is likely needed for the picture book, model, or PowerPoint presentation revision.

In addition, our project and product may inform faculty members interested in providing “real-world” assignments in collaboration with community partners and may spark ideas for developing new academic civic engagement projects.

4. Please provide any special instructions for successful use of the product, if necessary. If your product has been previously published, please provide the appropriate citation below.

We intended for the “Celiac and Me” website to be as user-friendly as possible. We have incorporated a “Welcome” tab that provides instructions for adults, an overview of targeted age groups, picture icons that serve as links to allow kids to easily navigate the page, and individual tabs to link to the book, movie, model or scientific background. The “Meet Our Team” tab provides background on the Carleton and community partnership, as well as information on each contributor. The multi-component nature of our webpage provides flexibility allowing for self-education or its use in a support or other group setting. While most components of the site are self-explanatory, the directions for building the gut model are built into the website and supported by images and video clips.

5. Please describe how your product or the project that resulted in the product builds on a relevant field, discipline or prior work. You may cite the literature and provide a bibliography in the next question if appropriate.

The Liberal Education and America’s Promise (LEAP) initiative calls for a set of undergraduate learning outcomes that encourage students to “engage in learning that seeks inter-and multidisciplinary answers to unscripted real-world problems.” Toward this goal, a high-impact teaching practice identified by LEAP is academic civic engagement (1). Evidence indicates that learning with and in community in a reciprocal manner deepens the learning of students within a course, is “personally meaningful to participants”, and allows for the integration of community and academic knowledge (2, 3). In addition, the Institute of Medicine recommends all undergraduates have the opportunity to study public health because public health literacy is essential for all citizens (4). LEAP’s learning outcomes and the study of public health - an interdisciplinary field - align well. Already, one best practice encouraged for public health programs across the country is the inclusion of community-based projects to support student engagement in complex, real-world issues (2). In the Immunology course, students work on public health-related academic civic engagement, and the celiac project generated a great deal of student interest and produced high quality work.

CD is caused by an inappropriate immune response triggered by exposure to dietary gluten in genetically predisposed people (5, 6). Although the majority of cases remain undiagnosed, the prevalence of CD in the US population is about 1% and increasing, thus constituting a major public health concern (7,8). Strict adherence to a gluten free diet (GFD) is the only approved treatment for CD. Both the diagnosis and the process of adapting to a strict GFD lifestyle pose psychosocial challenges (5). Many people negatively perceive themselves as being different, and it is common for children and young adults to have low compliance to GFD in social settings due to peer pressure or lack of awareness among the general public. There is a positive psychological effect of support groups in CD management (personal communication, “Can’t Eat Wheat” group members). One study reported improved self-perception and emotional outlook in children after spending one week in a gluten-free camp (9). The CD project thus arises from the need to tackle this public health concern through a partnership between Carleton and celiac community members.

6. Please provide a bibliography for work cited above or in other parts of this application. Provide full references, in the order sited in the text (i.e. according to number order). .

1. Brownell, JE and Swaner LE. Five High-Impact Practices: Research on Learning Outcomes, Completion, and Quality. Washington DC: Association of American Colleges and Universities; 2010.

2. Cashman, SB and Seifer, SD. Service-Learning: An integral part of undergraduate public health. American Journal of Preventive Medicine 2008;35:273-278.

3. Kilgo CA, Pasquesi, K, Sheets, JK, and Pascarella, ET. The estimated effects of participation in service-learning on liberal arts outcomes. International Journal of Research on Service-Learning and Community Engagement. 2014; 2:18-31.

4. Petersen, D, Albertine S, Plepys, C, and Calhoun, J. Developing an educated citizenry: the undergraduate public health learning outcomes project. Public Health Rep. 2013; 128:425-30.

5. Ludvigsson, J, Leffler, D, Bai, J, Biagi, F, Fasano, A, Green, P, Hadjivassiliou, M, Kaukinen, K, Kelly, C, and Leonard, J. The Oslo definitions for coeliac disease and related terms. Gut 2012; 62:43-52.

6. Abadie, V, Discepolo, V, and Jabri, B. Intraepithelial lymphocytes in celiac disease immunopathology. Semin Immunopathol 2012; 34:551-566.

7. Rubio-Tapia, A, Ludvigsson, J, Brantner, T, Murray, J, and Everhart, J.The Prevalence of Celiac Disease in the United States. The American Journal Of Gastroenterology 2012; 107:1538-1544.

8. Catassi, C, Gatti, S, and Fasano, A. The New Epidemiology of Celiac Disease. Journal Of Pediatric Gastroenterology And Nutrition 2014;59:S7-S9.

9. Bongiovanni, T, Clark, A, Garnett, E, Wojcicki, J, and Heyman, M. Impact of Gluten-free Camp on Quality of Life of Children and Adolescents with Celiac Disease. Pediatrics 2010; 125:e525-e529.

10. Silverthorn, D, Johnson, B, Ober, W, Garrison, C, and Silverthorn, A. Human physiology. Boston: Pearson Education; 2013.

11. Elliott, DE. The Pathophysiology of Celiac Disease. In: Rampertab, SD and Mullin, GE, editors. Clinical Gastroenterology. New York: Springer Science+Business Media; 2014. p. 39-52.

12. Bransford JD, Brown AL, and Cocking RR. How People Learn: Brain, Mind, Experience, and School. Washington, D.C.: National Academy Press; 2000.

13. Martin DJ. Elementary Science Methods: A Constructivist Approach. 4th ed. Belmont, CA: Thomson/Wadsworth; 2006.

14. Ganea PA, Canfield CF, Simons-Ghafari K, Chou T. Do cavies talk? The effect of anthropomorphic picture books on children's knowledge about animals. Front Psychol 2014;5:283.

15. Holzheimer L, Mohay H, Masters IB. Educating young children about asthma: comparing the effectiveness of a developmentally appropriate asthma education video tape and picture book. Child Care Health Dev 1998;24:85-99.

16. Khu M, Graham SA, Ganea PA. Learning from picture books: Infants' use of naming information. Front Psychol 2014;5:144.

17. Osmar K, Webb D. From idea to implementation: creation of an educational picture book for radiation therapy patients. J Cancer Educ 2015;30:193-196.

18. Tare M, Chiong C, Ganea P, Deloache J. Less is More: How manipulative features affect children's learning from picture books. J Appl Dev Psychol 2010;31:395-400.

19. Huang X, Lee S, Hu Y, Gao H, O'Connor M. Talking About Maternal Breast Cancer With Young Children: A Content Analysis of Text in Children's Books. J Pediatr Psychol 2014.

20. Ohgi S, Loo KK, Mizuike C. Frontal brain activation in young children during picture book reading with their mothers. Acta Paediatr 2010;99:225-229.

21. Hayford, B, Blomstrom, S and DeBoer, B. STEM and service-learning: Does service-learning increase STEM literacy? International Journal of Research on Service-Learning and Community Engagement. 2014; 2:32-43.

22. Bornstein, MH and Putnick, DL. Cognitive and socioemotional caregiving in developing countries. Child development 2012;83:46-61

7. Please describe the project or body of work from which the submitted product developed. Describe the ways that community and academic/institutional expertise contributed to the project. Pay particular attention to demonstrating the quality or rigor of the work:

• For research-related work, describe (if relevant) study aims, design, sample, measurement instruments, and analysis and interpretation. Discuss how you verified the accuracy of your data.
• For education-related work, describe (if relevant) any needs assessment conducted, learning objectives, educational strategies incorporated, and evaluation of learning.
• For other types of work, discuss how the project was developed and reasons for the methodological choices made.

The Immunology course is an upper level biology course that enrolls about 35 students each year. Students in the course select a community-engaged academic civic engagement project based on brief descriptions in the course syllabus. These projects connect to the academic core concepts of the course and provide students the opportunity to apply what they have learned to a public-health related, real-world issue. Although students provide the partners with a product, they also learn from these community members, thus building a reciprocal relationship (see response to #5 for details). In all cases, the community partner first identified the project needs and the details were then worked out jointly to ensure the projects met the academic learning goals of the course.

The following learning outcomes are shared with students prior to their beginning the civic engagement projects:
-gain experience with immunology-related aspects of public health practice or research,
-articulate how course material relates to the world outside of the classroom,
-problem solve in a practical way,
-gain experience working on ambiguous and complex problems,
-translate scientific ideas for nonscientific audiences,
-work on leadership skills,
-experience interacting with a diverse group of people, including community partners and, in some cases, local residents,
-improve and demonstrate ability to work collaboratively with other Carleton students, and
-improve writing and oral presentation skills.

Developing celiac disease-related educational materials has been a popular student choice. One key community partner, Julie Salato, founded and directs the Celiac Center of MN, a nonprofit organization located in Bloomington, MN. In addition to informational classes for adults, the Celiac Center runs monthly Gluten Detective meetings for kids diagnosed with CD as well as a week-long summer camp. The learning objectives for the Gluten Detective program are encapsulated in their motto “Investigate, Advocate, and Celebrate”. Salato requested that students in the Immunology course develop curricular materials for the program; the timing was fortuitous as the Celiac Center was in the process of expanding the Gluten Detectives to communities outside of the Twin Cities area. One site selected was our own city, which led us to the opportunity to work with a second key community partner, Stephanie Aman, the Outreach Coordinator for our local food co-op, Just Foods. She was responsible for organizing the new Gluten Detective group and she worked closely with students to provide feedback on age appropriate activities. Aman requested student help with preparing a presentation to help educate school administrators and food service personnel about cross contamination when preparing food in a K-12 school setting. Both partners shared background on CD and living gluten-free with the students as they launched their projects.

A third community partnership was forged with Jody Friedow who organizes the local “Can’t Eat Wheat” support group. This group invited the Immunology students to a meeting where they listened to first-hand accounts of the process of being diagnosed with CD and what it means to live gluten-free. Many students shared that this meeting not only inspired them, but also helped them fully appreciate the impact of the immune system on people’s everyday lives. In addition, they gained a newfound appreciation for the role of food in our society and how food choices particularly impact children and teenagers. Thus, the students could draw on several sources of community and lived wisdom as they worked on their projects (see #8 and 10 for research-based decisions on why particular educational materials were developed).

8. Please describe the process of developing the product, including the ways that community and academic/institutional expertise were integrated in the development of this product.

The heart of our project involves the synthesis of community-based with academic forms of knowledge and the translation of complex scientific concepts into everyday, engaging language for a general audience. An initial review of the scientific literature allowed the Carleton students to identify key points about CD that needed to be addressed while developing educational materials:

1)Most nutrient absorption occurs in the small intestine. This process depends on the surface area provided by the villi, which are fingerlike projections consisting of epithelial cells lining the opening of the intestine (10).
2)Celiac disease is an immune-mediated disorder occurring in genetically susceptible people and that is triggered by exposure to gluten. The protein products of the HLA genes function by presenting pieces of foreign bacteria or viruses to T cells of the immune system to alert them to danger. We all have HLA genes, but there are several “flavors” of these genes that exist in a variety of combinations within the population. HLA proteins are picky about which antigen pieces they can present, and two particular versions, DQ2 and DQ8, bind gluten and present it to T cells as though it were a dangerous microbial antigen. These two HLA “flavors” are found in almost all celiac cases (6).
3)Individuals who inherit the high-risk HLA genes are able to present fragments of ingested gluten to activate T cells, triggering an immunological cascade that leads to inflammation within the small intestine. Immune cells called intraepithelial lymphocytes are recruited to the site; these cells possess the ability to destroy other cells and are called cytotoxic T lymphocytes. When triggered by gluten, they target the epithelial cells resulting in damaged and shortened villi (6,11). Gluten in the gut also activates B cells to produce antibodies that bind to self proteins. The antibodies contribute to villi damage and also serve a diagnostic purpose.
4) The flattened villi can be visualized by endoscopy, the gold standard for CD diagnosis. The decreased surface area impedes nutrient absorption and leads to the symptoms of CD. CD patients may have gas, diarrhea, infertility, and neurologic symptoms. Removing gluten from the diet causes the immune cells to go back to a resting state and often the villi recover, relieving the individual’s symptoms (6).

Research on learning drove curriculum development. The gut model follows a celebrated approach of model-based reasoning where children explore real phenomena by making and evaluating models that resemble them (12). Physical models in particular are powerful visual representations that draw on a child’s spatial intelligence to acquire new knowledge (12,13). The model was thus developed with interactive features that allow children to make predictions about the effect of CD on nutrient absorption. Children can make connections with the scientific information while following the instructions to make their own gut model, thus acquiring a deeper understanding.

Research also shows that picture books foster both language development and social literacy in children (14-18). Children with mothers affected by breast cancer demonstrate increased knowledge about cancer, treatment, and coping strategies through reading picture books (19). Reading a book with a parent has also been shown to enhance communication skills by encouraging dialogue and addressing children's concerns (20). Inspired by this scholarship on picture books, "What's Up With My Gut?" aims to educate readers about CD and the emotional aspect of living with a chronic disease. It addresses psychosocial concerns of celiac patients and encourages self-care. The book is printed in landscape to better facilitate shared reading experiences between multiple individuals, such as child-parent pairs.

Although a great deal could be learned from the published literature, students did not begin to design their products until after they had met with community partners to learn about the lived experience of CD. The web page and its components are the result of the synthesis of both forms of knowledge. Students shared rough drafts with community partners, and their feedback was incorporated into the final products. The instructor met with all community partners following the course to talk about the process and together they brainstormed ideas for the upcoming year. The model of the gut was used in the summer Gluten Detective Agency camp, and the summer intern reported its success with the kids attending camp: “I thought that for my kids (5-6 year-olds) it was a really great way to visualize what happens to their bodies when they eat foods with gluten and to start building an understanding of the scientific underpinnings of celiac disease.” We also received feedback that the scientific background associated with the gut model and supplied for the adults should be strengthened; we have incorporated this change into the set of model instructions.

Throughout the arc of the project, the Carleton students completed a series of reflections that asked them to explicitly make connections between the academic content of the course and their ACE projects; reflection is recognized as being key for the learning benefits of academic civic engagement (service learning) (21). In their final reflection, students summarized their project as either an entry for a resume or a personal statement for graduate school.

9. Please discuss the significance and impact of your product. In your response, discuss ways your product has added to existing knowledge and benefited the community; ways others may have utilized your product; and any relevant evaluation data about impact, if available. If the impact of the product is not yet known, discuss its potential significance.

We envisioned a frame of “Engage, Educate, Explore, and Empower” as we developed our “Celiac and Me” website. Through these 4Es, the site impacts three populations: users, community partners, and site developers. The flexible nature of the website helps us adapt to the changing needs of our community partners and allows for additions to be developed by future Immunology students. In addition, the webpage format allows partners to easily share activities with their members.

Educate and Empower: The educational materials found on the “Celiac and Me” site provides information for people living with CD that is directly related to what is happening within their bodies, which is empowering. Increased understanding of the immune response to gluten and the need for a strict gluten-free diet allows people to self-advocate.

Being able to explain a topic in an engaging and straightforward manner requires a deep understanding, and therefore development of the materials also educates the Immunology students. Many of these students will pursue health professions and, thus, benefit from the skill of being able to clearly communicate complicated scientific ideas (as will their patients!).

Engage and explore: Our interactive website engages users with public health content; links to multiple activities allows for exploration and minimizes time accessing multiple sites. Users may be inspired to share information with others, and each activity is either printable or downloadable for free. User accessibility was a priority throughout development. We recognized that not everyone has home Internet access and felt that smartphone accessibility would be a great way to expand our reach. By selecting a responsive website theme, our page is mobile-friendly and automatically adjusts to a smartphone or computer/tablet.

Development of the materials engaged Immunology students as they had the opportunity to showcase their creativity while still focusing on rigorous learning and application of scientific knowledge. Learning and engagement is evident in the following excerpts from student reflections:

"I think this project helped me get an idea of the “bigger picture”; I was able to relate the specific scientific facts behind celiac to the larger impact of the disease. My group had to think critically about how to highlight the most important scientific points while still making sure that a general audience could understand the material. Explaining the disease to other people solidified my own understanding of the mechanisms behind celiac. Additionally, interviewing children about the emotional impact of having celiac put the disease itself in context and answered the big question: why should we care that this autoimmune disease is occurring?"

"I loved the science translation aspect of this project. It’s probably something I’m particularly interested in, which is why I enjoyed it so much, but still, this project was as excellent way to practice this skill. I definitely think that I was able to find a connection between class material and how it applies directly to public health and policy, which is awesome, since it all too often feels as though a lot of biology has little “real-world” use outside of a research lab."

"I gained a new appreciation of research science. It is not simply sitting in a lab or pondering at a chalk board writing experiments, it is making a concrete difference and contribution to the scientific and general community."

One potential outcome of this project is that other faculty members may be inspired to incorporate community-based projects in their own courses to support student learning. We have yet to fully evaluate the impact and reach of our educational materials. Our partners have used the materials locally and the activities have been modified based on feedback. We intend to continue the collaborations and future work will be informed by community responses and suggestions.

10. Please describe why you chose the presentation format you did.

As a hub for our activities, the “Celiac and Me” website serves as an ideal vehicle for maximizing dissemination of educational materials to the public in an accessible, user-friendly format. The gut model reinforces information about CD through its emphasis on model-based reasoning. Its interactive features and the action of building the model engage children in an intellectual process by encouraging them to make connections between the model and facts about the gut and CD. Similarly, a child's interaction with a picture book is not only enjoyable, but also useful. In addition to stimulating the imagination, several recent studies point to the role of picture books in the development of attention, memory, socio-emotional processes, as well as language skills (20,22). Because chronic diseases such as CD may cause emotional stress and confusion, it is valuable to investigate the potential of picture books as a tool to encourage both emotional and scientific literacy. Finally, the PowerPoint tool serves as a scientifically accurate framework for a customizable presentation that can be modified based on context and audience. Advocacy is an essential component of the Gluten Detectives program, and kids will be able to modify and develop the existing PowerPoint template into their own effective presentation. The accompanying video stands alone as an educational product, yet also provides guidance for children as they modify the presentation template. The tabs direct the user to age-appropriate materials, and the format allows us to add new sub-products as they are developed.

11. Please reflect on the strengths and limitations of your product. In what ways did community and academic/institutional collaborators provide feedback and how was such feedback used? Include relevant evaluation data about strengths and limitations if available.

Julie Salato of the Celiac Center of Minnesota presented both the book, “What’s Up With My Gut” and the intestinal model to 45 celiac children enrolled in their summer camp. The campers found the story captivating, and the content reinforced information they had received at camp regarding their disease. She also provided the camp leaders with the intestinal model and asked them to lead the campers through building their own models. It was determined that the project of building the intestinal model was outside the abilities of the kindergarten and 1st graders, and required more time than anticipated. As a result, it was determined that assembling the model was not a practical exercise for these campers, and the value of utilizing the intestinal model was in the ability to demonstrate how the intestinal lining was damaged when gluten was ingested. The children responded to the demonstration of removing the Velcro “villi” with interest and comprehension. This successful incorporation of these products in the celiac summer camp was shared through a discussion between Professor Walser-Kuntz and Julie Salato in a post-camp meeting later in the year.

Several modifications resulted from this feedback that should make it easier for implementation of the model building in the future. For those who would like to build their own model, we generated more detailed instructions, which now include online images to walk the user through important features of the model, more detailed scientific notes for leaders, and an estimated time frame required for the activity. In addition, we included options for users who do not want to invest as much time. One option is to simply use a pre-made model as a demonstration with the youngest children Salato outlined above. Another option is to have adult leaders prepare the majority of the model for younger children prior to the activity. In this case, the children receive the basic body of the model and simply need to attach their own “villi”, thus simplifying the process and reducing the time needed to devote to the activity.

In a follow-up set of activities, one Carleton student used the model in a newly developed Girl Scout STEM activity - "Gluten Explorers" - designed for both Brownies (grades 1-3) and Juniors (grades 4-5). She developed a lesson plan that included use of the premade gut model to demonstrate how the intestine looks and how we absorb food; the girls put gluten free Goldfish Puffs into the intestines with and without the villi to demonstrate the effect of the immune response. This leads to a discussion: “How do you feel when you’re very hungry? Irritable, tired, headache, stomachache, etc. These are like the symptoms of celiac! When your intestines are angry, you don’t absorb all your food and then your body gets hungry for nutrients.” In a brief survey assessment at the end of each of the programs, the overwhelming majority of the girls in both age groups responded favorably to the gut model, and in an open-ended question, “What was your favorite activity today?” many girls referred to the gut model in their response. The lesson plan for the "Gluten Explorers" Girl Scout activity is available to download on the Celiac and Me site.

12. Please describe ways that the project resulting in the product involved collaboration that embodied principles of mutual respect, shared work and shared credit. If different, describe ways that the product itself involved collaboration that embodied principles of mutual respect, shared work and shared credit. Have all collaborators on the product been notified of and approved submission of the product to CES4Health.info? If not, why not? Please indicate whether the project resulting in the product was approved by an Institutional Review Board (IRB) and/or community-based review mechanism, if applicable, and provide the name(s) of the IRB/mechanism.

The students in the Immunology course did not begin designing the educational materials until after they had met with all of the community partners. In those meetings, the students learned about the basics of living gluten free with celiac disease and the challenges that could be faced by individuals. Many students credit the initial visit to the “Can’t Eat Wheat” group as being an inspiration and helping to make the project feel more “real”. They learned about the history of the Gluten Detectives from the Celiac Center of MN director, who was clear in her goals for the program articulating the “Investigate, Advocate, and Celebrate” message she wanted the children to hear. Two of the community partners were parents of children who are gluten-free and they were involved in the process of launching new Gluten Detectives program in additional communities. They shared their perspectives with the Immunology course students, describing their need for new curriculum and providing advice as ideas developed. Each partner provided timely feedback on rough drafts midway through the project.

Professor Walser-Kuntz met with the community partners to deliver the final products and to assess the partnership and process at the end of the course, and they met again a few months later to plan for the upcoming year. As Stephanie Aman and a handful of other Gluten Detective Agencies had now begun their launch, new ideas for the following year’s Immunology course surfaced. One outcome of these discussions was production by the Immunology students of a movie and an associated PowerPoint presentation template designed to help young people advocate for a gluten-free lunch option at their schools - part of the “advocate” aspect of the group’s goals. Aman played a key role in guiding the Immunology students and connecting them to children living with celiac disease to help plan their presentation. One twelve year old Gluten Detective was particularly involved in meeting with the Carleton students as they designed their movie and PowerPoint. Salato helped coordinate a filming session to include children talking about their experiences and handled the parent permissions for filming. The children interviewed and shown in the movie ranged in age from 6 to 9 years old (1-3 grade). And again, just as it had the previous year, a visit to the “Can’t Eat Wheat” group made visible the need for such self-advocacy tools, as both a teenager from the group and the parents of an elementary aged child talked about the fear kids have of eating at school and the challenges of navigating lunch, both socially and mentally.

The “Celiac and Me” website acknowledges the role of each of the community partners as we include photos and short biographies of each collaborator. In addition, in public talks about the project given by Professor Walser-Kuntz, the partners have been credited with playing an essential role in being co-educators for the Carleton students. All community partners read and commented on the manuscript and their feedback has been incorporated into the final draft. The website was also shared with all partners and they were provided the opportunity to comment on its design.