Celiac - A Day in the Life
Watch this video and imagine if the little girl with a Gluten allergy playing soccer was your child!
When you are a parent of a child with Celiac, the journey can be incredibly challenging and emotional. It’s heartbreaking to watch your child suffer, and the constant anxiety and fear with food can be overwhelming.
One of the toughest challenges that we have continually faced with Celiac is trying to make sure that our 10 year old son Jax can be safely included in life's daily activities that involve food. Prior to Jax's diagnosis in 2018, we never appreciated our food privilege and enjoyed eating what we wanted, when we wanted and where we wanted with no worries over a potentially life-threatening and life-debilitating food allergy.
It can be very hard to explain to others what it feels like to have food insecurity with a Gluten allergy, and the emotional toll that is caused from the loss of food freedom, including the exclusion from many spontaneous activities that involve food. So let me show you.
Three cheers to the filmmaker Hayley Repton for her "Curing Celiac: A Short Story." In Repton's film produced for the Celiac Disease Foundation's iCure Celiac Patient Registry, Repton captures a youth soccer practice that we have seen play out many times in real-life for Jax at school, at sports, at camp, away from home, etc. #whileceliac
Repton's Rhythmic Masterpiece
The video starts with a little girl who is suffering from being Glutened and her father trying to comfort her, even though there is not really much that he can do since there is no rescue medicine (i.e., adrenaline or antihistamine) to take in case of accidental Gluten ingestion. In Repton's rhythmic masterpiece, she tells the ups and downs of Celiac by depicting the little girl rebounding from being sick and having a great time at soccer practice with her teammates, and the girl's dad on the sidelines engaging with the other parents who are all enjoying watching their kids play.
Everyone is having a fun time, and then out of the corner of the father's eye, he sees another parent getting a box of donuts ready to give the kids as they run off the field. Repton also shows the father's dismay with what he knows is about to transpire. I have been that dad, and the feeling really sucks! It is a sinking feeling that here we go again, another time when my kid is left out, and there is nothing in that moment that I can do about it. Celiac sucks!
All of the other kids are so excited with the donuts! Meanwhile Repton shows the disappointment in the girl's eyes and body language when she slowly walks off of the field and averts her gaze in a dejected manner, as she sees and hears the elation of her friends eating donuts. Celiac really sucks!
While the mom's gesture with getting the donuts appears sweet, the unintended consequence is that this little girl who deals with Celiac each and every day is once again excluded from life's daily activities that involve food.
In a nod to Celiacs and their parents who often bring their own food everywhere they go (just as my wife does), Repton shows the dad looking into a backpack he's carrying, almost as if he is searching for a magical Gluten Free donut to appear.
What's the Big Deal? Hint: It's Not About the Donuts
Some will read this and say, "So what's the big deal? The girl did not get to eat a donut - she'll live." She will live, but to those who still don't get it after watching Repton's short story, I say, check your food privilege and watch it again.
It's not about the donuts. It's about the constant, depressing and exhausting feeling of being left out at nearly every social event and watching your friends and family eat when you cannot.
Life is about adaptability, and that's one of the hard lessons that is continually taught to Celiacs, and one that we have been instilling in Jax since he was 5 years old. Celiac kids lose the privilege of a carefree childhood. That's what chronic disease does, especially one like Celiac that is so misunderstood and not accommodated by our society. But these are not isolated incidents given life's daily activities that involve food. To a Celiac child or parent, this is just one in a series of society's microaggressions towards those with Celiac.
As a parent, it can be frustrating and heartbreaking when your child can't just spontaneously eat whatever other kids are eating, and you see the disappointment in your child's eyes and hear it in their voice.
The Biological Mechanisms At Play
When Jax sees his friends eating certain foods (i.e., pizza, donuts, ice cream, soft pretzels) and smells those foods, that triggers a biological response of appetite and an emotional response of craving. Imagine if you walk by a bakery and smell the aroma of the fresh baked goods, it makes your mouth water.
So while it may not be a big deal to once in a while to miss out on some treat, Celiac is an every bite, every day experience. There are no breaks and no cheating on the strict Gluten Free diet. Celiac can often be exhausting.
The lifetime treatment burden of the Gluten Free diet is perceived by patients to be second only to end-stage renal disease, and by caregivers, comparable to caring for a patient with cancer. People with Celiac report a higher negative impact on their quality of life (treatment burden) than do people with Type 2 diabetes, congestive heart failure, hypertension, and inflammatory bowel disease. [1]
Embracing Our New Normal & Driving Change
As parents of a child with Celiac, our entire family has embraced its new normal. Since 2018, we have been working tirelessly to foster greater understanding and inclusion of those who suffer from Celiac in life's daily activities that involve food.
For example, at soccer, we have shared with the coach and other families that Jax has a severe Gluten allergy and asked them to be mindful of that when they bring in treats for the team. Sometimes it works, but sometimes it doesn't. At birthday parties, there have been several families which have gone out of their way to offer Jax Celiac-safe Gluten Free items such as pizza, cupcakes and candy. When this happens, it has been so appreciated by us, especially Jax, who does occasionally get self-conscious about bringing his own food everywhere we go.
We have worked with Jax's school to think about what food items are served in the cafeteria and catered at special events. We have shared that the ideal situation is when everyone can enjoy the same food product(s) together as a community. For example, if it is pizza day in the cafeteria, we would like Jax to be able to order Gluten Free pizza so that he can eat pizza with his friends and not just smell and crave the pizza that his friends are eating.
We have also attempted to educate the educators that it is not OK to offer donuts to all of Jax's classmates and give Jax potato chips. It is not OK to serve pizza to the grade and give Jax fruit. It is not OK to have a buffet with bagels, donuts, pastries, fruit, and quiche while just providing a Gluten Free offering of fruit (and on a buffet which could be a potential source of cross contact with Gluten - see images below). And yes all of those situations have unfortunately played out in front of our eyes. At those times, it has felt exclusionary and made Jax and us feel different and sad.
Early on during our Celiac journey in 2019, there was a special recognition reception at our kids' school which featured a beautiful spread with various sandwiches (with your choice of protein), breads, crackers, cakes, pastries and fruit etc. For those with a Gluten allergy, there was one Gluten Free basket with few lemon poppy seed muffins and a few bags of popcorn. Jax ate just popcorn, and we felt awful for him! Jax could not even have the fruit since it was displayed in a buffet and it was not wrapped to prevent cross contact. We would not eat when he could not eat!
I took pictures of the buffet and the Gluten Free basket. It was only after I showed these pictures to compare and contrast the two different offerings that our feedback seemed to finally resonate with school leadership. They then realized that more advance thought had to go into accommodating all members of our school community with food allergies.
Things started to change for the better, and by sharing the images, our head of school really saw how bad things were. In his words, they needed to provide "a gracious plenty" to all and make it much more inclusive for those with food allergies since they had been failing to provide a gracious plenty.
Taking the side by side pictures of the disparities in the food offerings reminds me of the 2021 March Madness story about inequality between the men's and women's college basketball teams. As you may recall, this story came to light when the juxtaposition was on full display looking at the disparities in the gyms and training facilities provided to the men and women. Shorty after these images made their way through social media, the NCAA finally changed things to be more equitable.
Call Disparities Out
The lesson that we have learned is to call disparities out when you see them and when you do, use photos and videos. It is up to you whether you feel that it is better to call out these situations in private and/or on social media, but call it out.
The Ups and Downs on the Celiac Roller Coaster
We have had many ups and downs with Jax's school on food service in the cafeteria and at special events. His school has about 1,000 children from Pre-K to 12th grade, and statistically, there are about 10 kids similarly situated with a Gluten allergy in addition to an estimated 90 kids with other food allergies to the top 9 Major Food Allergens.
However, certain comments from the school administration have previously suggested that since there were no other people providing similar feedback on accommodating kids with food allergies, Jax was the only child with Celiac for which food equity was an issue. In response, we shared that our lived experience has informed us that while often times there may be silence from those who cannot partake in school events or eat in the cafeteria because of food allergies, that does not necessarily mean that they are OK with just watching other friends enjoy something that they cannot eat.
Just as we thought we were making progress, we received an email from the parent community organizing a special year-end celebration event for the entire school which said, "The Parent Community is offering lunch for all students after they race... Note: If your child has special dietary restrictions, please plan to send lunch from home with them that day."
The content and tone of the email was so off-putting and suggested that it was written by someone who has no knowledge about food allergies and the impact that these can have on kids feeling excluded. We were so taken aback by this email, and after we brought it to the school's attention, they then figured out how to safely include all kids with food allergies at the lunch following the special event.
Like I said, there are many ups and downs on the Celiac coaster.
The Guiding Question for Inclusive Event Planning
We believe that one of the key guiding questions for catered events (especially at school) should be whether just having fruit or chips (including GF chips), for example, would be enough for everyone in attendance if that was the entirety of the food offering at a particular event. If the answer is yes, then that is fine. If the answer is no, then that indicates there are not enough inclusive food options (allergen free) being offered.
In other words, if you are planning to serve everyone else a choice of soft pretzels, donuts, hot dogs, hoagies, pizza, waffles and ice cream, etc., and the only Gluten Free items will be potato chips and popcorn, then the food offering is not comparable and therefore exclusionary. As we have explained, it's just unfair to Jax and other students similarly situated to not provide some type of comparable options with at least a couple of entrées and deserts being offered.
Through the Lens of Diversity, Equity, Inclusion and Belonging
Since Jax attends an independent school, he has a Medical Plan and not a 504 Plan. That said, we have encouraged the school to lean into Celiac Disease and food allergies through the school's ethos of diversity, equity, inclusion and belonging. To that end, we have never wanted any of this to be viewed as a "Jax issue" and have very clearly communicated that. Rather, we have always wanted this viewed through the lens of the right thing to do by everyone. We have also never asked for everything to be Gluten Free (at the cafeteria or at school events) or every item served to have a comparable Gluten Free alternative, but instead to provide a meaningful and inclusive choice of Gluten Free food options.
As we strive to be an ever-more inclusive community, I think that this is something that can be addressed culturally through more awareness and thought around what food allergies those in our community have and providing some comparable safe items in a parallel offering that allows everyone to eat the same or similar foods together as a community.
Repton's Masterful Storytelling
Repton's film segues from the disappointment of the little girl and her father on the soccer field to them both working to help change the world for Celiacs through iCure Celiac.
Similarly, Jax shows his grit and resilience by channeling his Celiac lived experience to get Gluten labeled as a Major Food Allergen just like it is in more than 85 other countries, to increase funding for research to provide treatment options other than a Gluten Free diet, and ideally a cure.
In addition to the great iCure Celiac short story, Repton also presented a powerful personal narrative in Glutened, "a rhythmic short film which expresses the impact everyday life has on a newly diagnosed" person with Celiac Disease.
After watching Glutened in February 2021, I had thought how powerful it would be to make a short film like Glutened, but looking at the world through a child's eyes who cannot eat pizza and cake at friends' birthday parties; who cannot eat soft pretzels with his teammates at soccer practice; who cannot readily order food in his school's cafeteria like his classmates; who cannot fully partake in the joy associated with the spontaneity of food in everyday life; who has to bring his own food often when we travel or eat out; who cannot easily find food at the beach on the boardwalk or at the amusement park; who cannot find Celiac safe food in most airports; who just watches other children enjoy foods that he cannot have; who walks through the supermarket and sees "eye candy" with all of the foods that he cannot eat; etc.
Thank you Hayley for making such a great film though a child's eyes!
Celiac Impacts Life's Major Activities
For someone with Celiac Disease, eating, sleeping, thinking, learning and working are major life activities that can be impacted on a daily basis, and there are various bodily systems which can be impacted including: gastrointestinal (digestive), nervous (anxiety, ataxia and neuropathy), skeletal, reproductive (infertility) and integumentary (body's outer layer made up of skin, nails, hair and the glands and nerves on your skin). This is the long-shadow of Celiac.
According to the Biden-Harris Administration National Strategy on Hunger, Nutrition, and Health as part of the White House Conference on Hunger, Nutrition, and Health, "diet-related diseases are some of the leading causes of death and disability in the U.S."
So, I encourage you to call out and speak up and seek accommodations for those with Celiac Disease to be better and more meaningfully included in life's every day activities that involve food.
We have found strength in having a supportive community by our side. We are grateful for the friends we have met along the journey. We appreciate the empathy, understanding, and advice that we have received from others who are going through the same experiences in their lives. To that end, I dedicate this article to my wife Leslie, Hayley Repton, and all of you.
Notes
[1] "Patient Perception of Treatment Burden is High in Celiac Disease Compared to Other Common Conditions," PMC, National Library of Medicine, National Institutes of Health, Shah, S., Akbari, M., Vanga, R., Kelly, C. P., Hansen, J., Theethira, T., Tariq, S., Dennis, M., & Leffler, D. A. (2014). The American journal of gastroenterology, 109(9), 13041311. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4159418/ https://doi.org/10.1038/ajg.2014.29 ; and "What is Celiac Disease?", Celiac Disease Foundation, https://celiac.org/about-celiac-disease/what-is-celiac-disease/ ; https://www.beyondceliac.org/invisible-illness-infographic/
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