In what has been billed as “a rhythmic short film which expresses the impact everyday life has on a newly diagnosed” person with Celiac Disease, “Glutened” by Hayley Repton presents a powerful personal narrative.
This cinematic masterpiece fosters empathy for members of the Celiac community by allowing others to step into their shoes, aiming to understand their needs, feelings and perspectives. While “Glutened” follows the day to day life of Repton as a young adult in the United Kingdom, she has captured the essence of our family’s Celiac journey for our 7 year old son (Jax) who was diagnosed 2 years ago:
- the exclusion from life’s daily activities that involve food;
- the constant concern over cross contamination and being glutened with every bite;
- the permanent state of food insecurity;
- the frustration with the societal and scientific bias that a Gluten Free diet is all that is needed to treat Celiac Disease, as opposed to all that has ever been historically available;
- that our only available treatment option – a strict GF Diet for life – is a medical requirement and not a dietary choice;
- that Celiac Disease must be treated as seriously as nut allergies;
- the food labeling challenges, especially in the US where Gluten is not a required disclosure as a top food allergen (in contrast to the UK which recognizes “Cereals containing gluten” as a top food allergen); and
- when Gluten Free foods are a medical requirement, then this must be viewed through the lens of a citizen’s human right to adequate food.
Since Jax was diagnosed with Celiac Disease, I have often thought of making a film like Glutened 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 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.
Glutened shows how those with food allergies and intolerances often silently suffer with their disability, and how this can be exacerbated by those around them who do not necessarily appreciate their limitations, how those with Celiac Disease often just say “thanks, but no thanks” to offers of food and fun, and what reasonable accommodations could be made to allow them to be included in a meaningful manner.
Having said that, our family has adjusted to our new normal which Leslie and Jax chronicle on Instagram @Glutenfreefinds_pa, and our son has been amazing in his adaptability. Until such time as other treatments and a cure are found, we hope others will check their food privilege and understand that reasonable, common sense and low impact accommodations foster inclusion to help those with Celiac Disease and food allergies, especially children, safely and successfully navigate a gluten filled world.
They say that a picture is worth a thousand words, and to that end, Glutened communicates the patient impact and treatment burden of maintaining a strict Gluten Free diet for life. Glutened underscores why the United States Federal government and the National Institutes of Health must allocate significant funding increases to find new treatment options and a cure for Celiac Disease.