Affinity Groups for Students with Food Allergies and Intolerances Can Help Foster Inclusion & Community

Parents and students know that school is not just about what happens in the classroom. To that end, it is worth considering that school communities might be well served by offering affinity groups for students with food allergies and intolerances (including Celiac Disease), as well as for their parents.

What is an Affinity Group?
An “affinity group” is a group of people with common interests, background, and experience that gather together to support each other. In other words, the term affinity group refers to people who share a similar identity. Some examples of affinity groups at schools may include the “Girls Varsity Soccer Team,” which is structured around gender, a “Second Grade Classroom,” which is structured around age, or the Parents of Students of Color Affinity Group, which is structured around the racial affiliation of the children attending a specific school. All of these groups share some type of a common identity, such as gender, age, race, affiliation, etc.

For example, in a school setting with children who may be associated with a minoritized or potentially marginalized group, an affinity group can provide a safe space where students can build connections, discuss challenging moments that occur in the classroom, on the playground, or in the cafeteria, and receive support in a setting with other children who have similar experiences. Primarily, the goals of an affinity group are to facilitate positive development by helping children advocate for themselves, educate the community to their backgrounds, facilitate empathy and understanding of their needs, and develop leadership in their communities.

The Prevalence of Food Allergies and Intolerances are a Growing Food Safety and Public Health Concern
According to the CDC, “Food allergies are a growing food safety and public health concern that affect an estimated 8.0% of children in the United States. That’s 1 in 13 children, or about 2 students per classroom.”

In addition to the 8.0%, about 1.0% of school children have Celiac Disease and must adhere to a lifelong strict Gluten Free diet.  By estimate, an additional 6.0% to 7.0% of school children have Non-Celiac Gluten Sensitivity, and should also avoid the consumption of Gluten. In other words, by estimate, about 8.0 of school children cannot consume Gluten.

The bottom line is that an estimated 2 in 13 children, or about 4 students per classroom, have some type of food allergy or intolerance to the Top 9 allergens and intolerances: Milk, Eggs, Peanuts, Tree Nuts (such as almonds, cashews, walnuts), Fish (such as bass, cod, flounder), Shellfish (such as crab, lobster, shrimp), Soy, Wheat and Gluten.

Living with Food Allergies and Celiac Disease is Challenging for Students and Parents
According to the CDC, “Many studies have shown that food allergies have a significant effect on the psychosocial well-being of children with food allergies and their families.”[1] According to the University of Chicago, “Living healthily with Celiac Disease requires skill in negotiating the everyday environment — especially for children and teens, where most positive social encounters, from school lunches to prom, is organized around food.”[2]

Unfortunately, these findings are not news to many students with food allergies and intolerances and to their parents.  As it pertains to Celiac Disease, Children’s National Hospital’s Celiac Disease Program has found the following about the experiences of students and parents:

  • Exclusion and Isolation – The Gluten Free diet, which is the only available treatment option for Celiac which is a lifelong chronic disease, can interfere with academic and social activities, which can result in a sense of exclusion and isolation. It is challenging to participate in class lessons involving food or materials containing Gluten, eat meals with peers, partake in celebratory treats, and travel on class trips. This can interfere with academic and social-emotional development in students.
  • Bullying and Discrimination – Students and their parents have reported bullying and discrimination because of their Celiac Disease, and its management with the strict Gluten Free diet. For example, students may attract negative attention from others by eating different foods, asking questions, or having symptoms that are noticeable to others. To that end, students without any visible symptoms may be judged by individuals who doubt the validity of their diagnosis and may not take it seriously. In any event, students may experience teasing, taunting, harassment, or bullying by peers, teachers, coaches, and other adults. As a result, many students and their parents find it difficult, if not impossible, to advocate for their needs.
  • Physical Symptoms Disrupt Learning – Students with Celiac Disease can experience a number of different physical and emotional symptoms that may negatively impact their ability to learn and grow academically and socially. Symptoms can be anxiety-provoking, embarrassing, painful and distracting. Physical and emotional symptoms negatively impact a student’s ability to focus, learn, and perform at their usual level, and may have additional negative consequences due to absences.

Addressing the Needs of Students and Parents of Students with Food Allergies & Intolerances
In addition to students with food allergies and intolerances (including Celiac Disease) sometimes experiencing feelings of isolation and exclusion, these students sometimes describe hearing insensitive comments about those who face these medically necessary dietary restrictions. To that end, school communities would be well served as part of comprehensive health, wellness, nutrition, diversity and inclusion programs to offer the following:

Student Affinity Group for Food Allergies and Intolerances
Some forward thinking and inclusive schools have offered student affinity groups focused on food allergies and intolerances, and to those ends, other schools would benefit by emulating these. From anecdotal feedback from students who have started and/or participated in an affinity group for students with food allergies and intolerances, it has been shared that these groups can be comprised of students with food allergies and intolerances (as well as their friends who do not have food allergies and intolerances) who provide a supportive and empathetic community to them through fellowship.

Fostering these new student affinity groups may need some assistance and encouragement from teachers and parents in order to get students to participate. However, once underway, these groups can help organically educate the next generation of adults to better empathize, accommodate and include those with medically necessary dietary restrictions.

Parent Affinity Group for Students with Food Allergies and Intolerances
In addition to an affinity group for students, it would also be valuable for schools to start a separate parents of students with food allergies and intolerances affinity group whereby issues could be discussed and fellowship created among those parents of students with similar challenges faced through medically diagnosed dietary diversity.

Given that food allergies and intolerances such as Celiac Disease are invisible illnesses, it would be helpful to have the school take the lead on this in terms of communicating it to everyone in the community with the hope that those who are interested will be informed, respond and participate.

Rethinking Go To Comfort Foods and Treats Served to Groups at School Events
By observation and experience, our children’s school often has several go to comfort food and treats that are served to the community at school events: cookies, donuts, soft pretzels and pizza. Given that these Go To foods are prevalent at many schools for certain events, it would be beneficial if school administrators and teachers, along with diversity and inclusion leaders, would rethink these go to foods and treats served to groups.

As a first step in doing so, when serving one food item at an event, they should see if there are any students in the community who have food allergies and intolerances. In turn, if there are members of the group who have food allergies and intolerances, schools should accommodate them by replacing those allergen containing go to food(s) with a safe food option that can be enjoyed by an entire group, grade, division. In the alternative, if soft pretzels or pizza are served for example, then Gluten Free soft pretzels and pizza should also be available for those who need them. But ideally, some food/snack choice that everyone can equally enjoy together.

Food for thought!

Sources:
[1] U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, “Voluntary Guidelines for Managing Food Allergies in schools and Early Care and Education Programs” (footnotes 39-45).
[2] University of Chicago Celiac Disease Center, 2018 Year End Report.

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