Food Insecurity in the Context of Celiac Disease
While food insecurity has often been associated with socio-economic and geo-political issues, the USDA’s definition of food insecurity can apply to the lived experience of many with food allergies including Celiac Disease (which is a Non-IgE-Mediated food allergy to Gluten),
“Food insecurity is the limited or uncertain availability of nutritionally adequate and safe foods or limited or uncertain ability to acquire acceptable foods in socially acceptable ways.”
In addition to the nutritional aspects of eating (including eating at home, at school, in restaurants, on the go, etc.), there is the all-important social aspect of eating and inclusion which is more challenging for those with food allergies, including those with Celiac Disease, because the Celiac community must worry about the limited or uncertain availability of safe foods, cross-contamination with Gluten, food that is nutritionally adequate and food that is affordable. These factors are compounded by the fact that Gluten is not required to be labeled on all packaged foods in the U.S.
Up until August 2018 when our son Jax was diagnosed with Celiac Disease, we took our food freedom for granted. We enjoyed our food privilege of being able to eat whatever and wherever we wanted. Now, as parents of a child with Celiac Disease, our family has embraced its new normal every day with every bite.
For Celiac families, this is real and can present ongoing challenges multiple times per day, especially when eating away from home (i.e., visiting the US Open). Eating away from home often feels like a food desert whereby there is limited availability and access to Celiac safe Gluten Free foods in terms of ingredients and preparation to avoid cross contact. To that end, we often bring along a parallel pantry of pre-packaged foods when we are away from home, but that can be quite challenging and limiting.
As Celiac Disease researchers have found, “[t]here is no such thing as a Gluten-Free diet because of the constant risk of cross-contact with Gluten, and Gluten is in 80% of our foodstuffs.”
"Eating without fear is our hope! Food insecurity happens everyday for Celiacs because of the constant threat of cross contact with Gluten, 80% of foods have Gluten in them, the high price of Gluten Free food, and Gluten is not required to be labeled on packaged foods in the U.S." -- Jax Bari
The Economic Burden of a Strict Gluten Free Diet is Significant
The treatment burden for Celiac Disease is compounded by the increased cost of a “market basket” of Gluten Free products against a comparable market basket of Gluten containing products whereby research indicates that Gluten Free products were 183% more expensive nationwide. For the average family with Celiac Disease, that additional cost represents an incredible expense, and one that can contribute to poor adherence to maintaining a strict Gluten Free diet, which in turn can cause more serious health issues.
According to the 2019 Columbia University study, “The study market basket was based on the food and beverage portion of the USDA market basket which includes breakfast cereal, bread, milk, coffee, wine, chicken, service meals, and snacks based on national consumption data from the United States Department of Labor statistics.”
According to the U.S. Department of Labor, Bureau of Labor Statistics, “The market basket is a package of goods and services that consumers purchase for day-to-day living. The weight of each item is based on the amount of expenditure reported by a sample of households.”
My wife and I can attest to the treatment burden including the continuous concern over intestinal healing, proper nutrition, cross contact, and inclusion of our son in life’s numerous daily activities that involve food at home, at school and away from home in daily life. Research from the NIH has shown that the treatment burden of Celiac Disease is comparable to end-stage renal disease, and the parent (caretaker) burden is comparable to caring for a patient with cancer. According to Columbia University’s “Persistent Economic Burden of the Gluten Free Diet” that was published on February 14, 2019, “Diabetes, hypertension and congestive heart failure patients ranked their overall treatment burden below the participants with Celiac Disease.”
According to Yvonne Vissing Ph.D. and Christopher Moore-Vissing in their article entitled, “Going Gluten Free as a Human Rights Issue,”
“The issue of gluten contamination contributes to a constant situation of food and nutritional insecurity to holders of this special dietary need. The celiac diet must be completely gluten-free, which allows people to have a life relatively free of major pathological complications. Maintaining a totally gluten-free diet is not an easy task because the violation of the diet may occur voluntarily or involuntarily, and range from incorrect information on food labels to the gluten contamination of processed products. Difficulties in the availability and access to food without gluten violates the principle of the [United Nations] human right to adequate food. The condition of being a celiac individual exposes one to permanent food and nutrition insecurity, which could cause loss of quality of life, socialization, and health of the individual, both in the short and long term.”
The bottom line is that Food Insecurity in the context of Celiac Disease is real and tangible and must be understood and addressed accordingly.