Katarina Mollo, MEd, RDN, LDN
Registered Dietitian/Director of Education, National Celiac Association
Ever heard the term “gluten-free” and thought of it as just another annoying fad diet? Think again, because for those with celiac disease, it is not a lifestyle choice, but a medical necessity that presents with many challenges.
About 1 percent, or roughly 3 million people, are living with celiac disease in the United States. Celiac disease is a genetic autoimmune disorder that primarily affects the small intestine. When gluten is ingested, it elicits an immune response that damages the lining of the small intestine, interfering with the body’s ability to absorb nutrients. This can lead to malnutrition and other serious complications, even cancer.
Currently, the only treatment available for celiac disease is a gluten-free diet. On the surface, this might sound easy; just remove gluten from the diet. However, there are many challenges to staying gluten-free. Gluten is everywhere, and very small amounts — just crumbs — can make someone with celiac disease sick.
Gluten everywhere
Gluten is a protein that can be found in wheat, barley, and rye. It is commonly found in foods like pasta, cereal, bread, and baked goods. It can also be hidden in many foods in the form of thickeners, binders, and flavorings. It can even be found in some supplements and medications, making label-reading a lifeline for those with celiac disease.
Additionally, those with celiac disease need to be aware of cross-contact from gluten while prepping and serving food. This can happen anywhere, such as your own kitchen, at a friend’s house, a restaurant, or during family celebrations. With celiac disease, enjoyable family celebrations and holidays can suddenly become gluten minefields.
Staying away from gluten and keeping sane is a balancing act. Studies have revealed that those who are hypervigilant with the gluten-free diet have a lower quality of life, indicating the need for psychosocial support. In addition, the treatment burden of a gluten-free diet is cumbersome, and has been found to be comparable to congestive heart failure and end stage renal disease.
Finally, being on a gluten-free diet can be a huge economic burden. A recent study found that gluten-free foods are overall 189 percent more expensive than regular versions of the food. Often staple foods, such as gluten-free breads and pasta, are three times more expensive than their gluten-containing counterparts.
Increasing access
Compounding the problem, gluten-free foods are rarely available at food pantries, leaving few options for safe food assistance. The COVID-19 pandemic has increased the need for gluten-free food assistance three-fold in some areas.
In response, the National Celiac Association started Feeding Gluten-Free, a national initiative helping food assistance organizations and individuals get access to gluten-free foods.
For those with celiac disease, the gluten-free diet is lifesaving, but presents with many challenges. The hope is that everyone with a need will have access to safe, gluten-free foods until there are other treatment options. Until then, gluten-free food is all we have.