Last Summer, my wife and I were blissfully unaware about Celiac Disease’s prevalence and significance. As kids head back to school, I want to share with you our family’s perspective gained over this past year in helping our 6 year old son adjust to his life changing diagnosis and navigate a Gluten filled world on a strict, medically necessary Gluten Free diet. Ideally some of the lessons learned along our journey can move the ball forward with understanding, accommodation and inclusion, especially for children afflicted with Celiac Disease.
Celiac Disease is a serious genetic autoimmune disorder that afflicts 3+ million Americans. When a person who has Celiac Disease consumes Gluten, a protein found in wheat, rye and barley, the individual’s immune system responds by attacking the small intestine.
While going Gluten Free has become a lifestyle choice among some health-conscious people over the last several years, for Celiac Disease sufferers such as our First Grader, the Gluten protein (even in trace amounts such a crumb) can pose a severe risk for long term damage to his small intestine which affects his ability to absorb nutrients required for proper growth and development, and short term sickness including abdominal pain, gas, diarrhea and vomiting. Other Celiac complications can include thyroiditis, liver disease, inflammatory bowel disease, osteoporosis, infertility, neurological conditions, cancer (lymphoma), and immunological scarring.
It has been suggested that there has never been a better time to be Gluten Free than now, since there are many more Gluten Free food alternatives available than there were, even just a couple of years ago. It’s certainly easier today, but it’s not easy. Gluten is omnipresent in food items.
While thankfully there are many more choices today (we still try to eat out and travel), there are still many more limitations, and it is not just limited to finding foods that are Gluten Free ingredients-wise. In addition to certain foods being Gluten Free in terms of their ingredients, the food cannot come in contact with Gluten containing foods in the preparation and serving of that food. For Celiac Disease sufferers and their families, it involves the constant concern over cross contact with the preparation and service of food as well as ingredients therein. It’s a disease, not a diet!
The Research Paradigm Must Evolve
In 1952, it was first discovered that Gluten was the trigger of Celiac Disease. To cure Celiac Disease, we need to fundamentally shift how our society and government leaders, including in Congress and at the National Institutes of Health (NIH), are educated on this disease. Why? Because the current research paradigm for Celiac Disease, one that has existed for many decades, has not delivered a cure, in part because NIH has seriously underfunded Celiac Disease research. There is no medicine or surgery available to treat Celiac Disease, and a person cannot outgrow Celiac Disease. To date, Celiac Disease research has produced only a single approved treatment — strict adherence to a lifelong Gluten Free diet with no exceptions!
However, 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.” Additionally, for up to 30% of patients, diet alone is inadequate for remission in that it alleviates some symptoms, but does not necessarily heal and resolve intestinal damage caused by Celiac Disease.
My wife and I are so proud of how adaptable and resilient our son has been in embracing a Gluten Free diet and learning to advocate for himself. That said, we can attest to the treatment burden including the continuous concern over 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.”
Food Allergies/Intolerances Significantly Impact the Psychosocial Well-Being of Children
According to the University of Chicago’s 2018 Year End Report, “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.” According to 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), “Many studies have shown that food allergies have a significant effect on the psychosocial well-being of children with food allergies and their families.”
For all intents and purposes, Gluten is poison to our son’s body, and it is analogous to the serious danger that peanuts pose to someone who is afflicted with severe peanut allergies. Eating Gluten does not initiate an anaphylactic cascade reaction in Celiac Disease patients. However, the ingestion of Gluten, even accidental ingestion of a trace amount of Gluten, can sicken and endanger the healing of a Celiac patient’s small intestine enabled through a person’s strict adherence to a Gluten Free diet, and/or trigger new damage to the small intestine that could take additional years to heal (if it does heal at all). There is also no medicine available (i.e., epinephrine pen for nut allergies) to take to treat any accidental ingestion of Gluten.
Fortunately, a growing number of food service providers and schools have recognized the gravitas of food allergies with creating common sense, low impact solutions and policies to keep kids safe and included. This recognition of food allergies and policies related thereto serve as a model for many other food service providers and schools to use in ascribing the same level of seriousness for the safety and inclusion of those who suffer from Celiac Disease so that kids like our son have a healthy and safe environment in which to learn, grow, and thrive.
Food Insecurity and A Need for Inclusion
Food insecurity has principally been associated with socio-economic and geo-political issues, however food allergies and intolerances such as Celiac Disease arguably fall into the USDA’s definition of food insecurity,
“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), there is the all-important social aspect of eating and inclusion which is more challenging for those with food allergies/intolerances, including those with Celiac Disease, because they must worry about the limited or uncertain availability of safe foods, free of cross-contact and nutritionally adequate foods, including in many school’s cafeterias and at class events/parties where food is a focal point.
Kids want to fit in and without a selection of comparable Gluten Free foods readily available in their daily lives, there are many challenges to feeling, let alone being, included, and for parents feeling that their kids are safe.
Sally Kuzemchak, MS, RD published a timely back to school article on Parents.com, “What’s The Deal With School-Approved Snack Lists?” in which she explored how the snacks parents are allowed to bring into school for class parties can seem random — and even unhealthy. But they serve an important purpose.
The empathy and accommodation of many in our child’s community has been great, but we have nonetheless experienced the insensitivity and downplaying of the importance of our son’s Celiac Disease, even questioning the seriousness of Celiac Disease.
Personal Significance – We Want Food Freedom Again!
Up until last Summer, we took 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. That said, we are working to drive change in the research ecosystem so that hopefully in the short run, a cure can be found, and we can return to our pre-Celiac life.
It is important to us because some day we want to be able to enjoy a worry-free meal with our family, have our family be able to break bread together at home or at any restaurant we choose, have our son eat whatever foods he wants (including pizza and cake at friends’ birthday parties), have our son enjoy the spontaneity of any food throughout day to day life and at special occasions, have our son always feel socially included at meal time with his friends and family by not having to eat special foods, have our son never experience food insecurity, have our son be able to purchase lunch at his school’s cafeteria with comparable Gluten Free menu options to the Gluten filled menu, have us never have to worry about cross contact, have us never have to plan to bring along “safe food” (parallel pantry) for him, have us never worry about carefully scrutinizing all food labels, have him be able to enjoy a full array of tasteful foods, all so that our son can grow and develop fully, normally and in a healthy manner, physically and emotionally.
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 a sense of diversity
and inclusion to help those with Celiac Disease and food allergies, especially
children, safely and successfully navigate a gluten filled world.
 Beyond Celiac, Fast Facts about Celiac Disease Infographic, www.beyondceliac.org , and https://www.beyondceliac.org/60forceliac/Fast-Facts-about-Celiac-Disease-Infographic/1448/
 Celiac Disease Foundation, “Chronic Inflammation Permanently Alters Immune Cells in Celiac Patients,” https://celiac.org/about-the-foundation/featured-news/2019/02/chronic-inflammation-permanently-alters-immune-cells-in-celiac-patients/
 “From Mussels to Bananas to Gluten: Celebrating Samuel Gee & Advances in celiac Disease Research,” Beyond Celiac, August 27, 2018, https://www.beyondceliac.org/celiac-disease-news/celebrating-celiac-awareness-day-2018/
 Testimony of Marilyn G. Geller, CEO, Celiac Disease Foundation (Los Angeles, CA), to the U.S. House of Representatives Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, April 9, 2019, https://celiac.org/april-2019-congressional-testimony-by-ceo-marilyn-g-geller/?
 Celiac Disease Foundation, https://celiac.org/about-celiac-disease/poorly-responsive-celiac-disease/
 “Patient Perception of Treatment Burden is High in Celiac Disease Compared to Other Common Conditions,” PMC, National Library of Medicine, National Institutes of Health, July 1, 2014, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4159418/ , and “What is Celiac Disease?”, Celiac Disease Foundation, https://celiac.org/about-celiac-disease/what-is-celiac-disease/ .
 University of Chicago Celiac Disease Center, 2018 Year End Report, https://www.cureceliacdisease.org/wp-content/uploads/CdC_YearEnd_Report_18_WEB.pdf
 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),
 United States Department of Agriculture, Economic Research Service, Measurement, Food Insecurity, https://www.ers.usda.gov/topics/food-nutrition-assistance/food-security-in-the-us/measurement.aspx#insecurity