Gluten Free & Vegan Are Not The Same: Let's Stop Conflating a Food Allergy with a Food Preference

Jon and Leslie Bari at the White House Conference on Hunger, Nutrition, and Health

My wife and I were honored to attend the White House Conference on Hunger, Nutrition, and Health ("White House Conference") last September and share our lived experience with Jax's diet-related disease. However, I would be remiss if I did not call out the organizers and food service providers for the White House Conference lunch who conflated a food allergy with a food preference.

There is an irony to this story with the lunch provided considering the focus on hunger, nutrition, and health at the White House Conference. Unfortunately though, this blind spot for the medically required dietary needs of 3.3 million American Celiacs suggests a pattern by the Biden-Harris Administration. For example, in addition to the lunch fiasco, the Administration's National Strategy on Hunger, Nutrition, and Health ("National Strategy") omitted any reference Celiac Disease, Gluten and Food Allergies. [1] Additionally, the White House Easter Egg Roll fell short in accommodating kids with Celiac and other food allergies. #WHConfHungerHealth

In Solidarity with My 10 Year Old Son

It's really hard to know what's safe for Celiacs to eat since Gluten is not required to be labeled on all food products in the United States like it is in 85+ countries around the world. That's why we advocate to label Gluten on all food products in the U.S. That's also why I often act in solidarity with Jax when buying food products, scrutinizing food labels and ordering food out of the house.

For example, when I registered for the White House Conference, there was a prompt asking me about whether I had any food allergies. That was a good start. In experiencing the world through Jax's needs, I said that I had a Gluten allergy with Celiac Disease, and I ordered a Gluten Free lunch.

When my wife and I finished the morning session and our meetings with Senator Cory Booker and Rep. Jim McGovern, we had worked up our appetite for lunch. As we approached the central area of the Ronald Reagan Building where people were eating and talking in small groups, it appeared that the main entrée that had been served to most people was chicken. Lunch looked and smelled great.

When I asked one of the food servers about my Gluten Free meal, I was directed to a table with a sign that read:

"Ginger-Soy, Plant-Based Tuna Poke on Butter Lettuce; Quinoa with Coriander Leaf and Pickled Ginger; Late-Summer Vegetables. This menu is dairy, gluten free, Vegan and Vegetarian. Ok for Halal, as there is no meat. Sesame seeds will be on the side in a shaker if guests want to add at the Chef [Houman ] Gohary's table."

Hmm. I wanted chicken just like almost everyone else. I did not want a Vegan, Vegetarian, Dairy Free, and Halal Meal. I ordered a Gluten Free meal. I did not order a Vegan meal, I did not order a Vegetarian meal. I did not order a Dairy Free meal. I did not order a Halal meal.

I wanted a Gluten Free meal with a similar entrée to what most people were eating. I wanted meat for my protein. I then asked for a plate with the chicken, and I was told that they had run out already. Again, another irony at the White House Conference that they ran out of food.

"In developing this national strategy, my [Biden-Harris] Administration has listened to and learned from many remarkable advocates, including people who have experienced hunger and diet-related diseases themselves. To all of you, I am grateful for your unwavering commitment to meet this moment." -- Biden-Harris National Strategy

One Size Does Not Fill All

Even at the White House Conference which embraced diversity, equity and inclusion for underserved communities including persons with disabilities (i.e., 3.3 million Americans with Celiac), it seems that my meal was along the lines of one size fits all.

Celiac is limiting enough when it comes to safe Gluten Free food choices and availability, and as such, it's a false equivalency to think that a request for a Gluten Free meal is the same as a request for a Vegan meal. It is ignorant and insulting.

Being Gluten Free for those with Celiac Disease is not a choice. A strict GF diet is the only medical treatment available for Celiac which is a potentially life-threatening and life-debilitating food allergy, auto-immune disease and digestive disease that is triggered by eating Gluten, a protein found in Wheat, Barley, Rye and most Oats.

In my lived experience, it's really important to not conflate Gluten Free with Vegan and Vegetarian, and to assume that Celiacs are simply OK with eating Vegan or Vegetarian, both of which are dietary choices.

For Celiacs, it's not about the chicken or lunch at the White House Conference. It's really about the constant, depressing and exhausting feeling of being left out at nearly every social or work event and watching your friends and family eat when you cannot. It's about your needs not being met.

According to the Vegan Foundry, "Vegan and gluten-free are not the same at all. Being a vegan means that you don't consume or use animal products such as meat, dairy, honey, eggs, and non-edibles like leather and wool. Being gluten-free means that you do not consume gluten, which is found in some cereal products."

The Vegan Society describes veganism as "A lifestyle that avoids all animal foods such as meat, dairy, eggs and honey; animal derived products like leather; and, as far as possible, products tested on animals."

Dietary Spectrum - Celiac Disease Food Allergy Must Be Treated as Seriously as IgE-Mediated Food Allergies; Celiac Disease Must Not Be Conflated with Gluten Intolerance (Non-Celiac Gluten Sensitivity) or a Voluntarily Chosen Gluten Free Lifestyle

Dietary Spectrum Chart: The Differences Between Food Preferences, Food Intolerances and Food Allergies (IgE-Mediated and Non-IgE-Mediated with Celiac Disease)

It would seem to me that Houman Gohary, Executive Chef, Ronald Reagan Building and International Trade Center, should know better than to conflate a food allergy with a food preference.

Medical News Today published a thought-provoking article on Veganism and discussed "why should one person’s dietary choice make anyone else angry?" I am all for food choice, and that people should be able to be a Vegan or Vegetarian. My issue is when food allergy with Celiac is lumped together with food preference with Veganism or Vegetarianism. While I wish that the lunch at the White House Conference was an isolated incident, it speaks to how far we still have to travel as a nation to respect the rights of those with Celiac and provide the accommodations needed.

The Guiding Question for Inclusive Event Planning

We believe that one of the key guiding questions for catered events (especially at a public event about hunger, health and nutrition involving diet-related diseases) should be whether just having ginger-soy, plant-based tuna Poke on butter lettuce; quinoa with coriander leaf and pickled ginger with vegetables would have been enough for everyone in attendance at the White House Conference on Hunger, Nutrition, and Health. If the answer is no, then that indicates there were not enough inclusive food options (allergen free) being offered.

In other words, if you are planning to serve everyone else a choice of chicken and salads, etc., and the only Gluten Free items will be ginger-soy, plant-based tuna Poke on butter lettuce; quinoa with coriander leaf and pickled ginger with vegetables, then the food offering is not comparable and therefore exclusionary. As we have explained, it's just unfair to Jax and other Celiacs similarly situated to not provide some type of comparable options with at least a couple of entrées and deserts being offered to everyone else.

Notes

[1] While the authors of this article and Memo to Secretary Becerra recognize that the National Strategy is a framework, many in the food allergy community, including the authors, had provided comments to help inform the National Strategy, and were thus very disappointed that there was no express reference to "food allergies" including Celiac Disease, in the National Strategy. We were also disappointed in the placement of food labels only in Pillar 3 in the context of making “healthy choices,” in addition to looking at it through the lens of nutrition and health in Pillar 2. For example, there was only one reference in the National Strategy to food allergens (i.e., "ingredient, and allergen information"), and this was in the context of online sales, "Facilitate making nutrition information easily available when grocery shopping online. While consumers increasingly use e-commerce to shop for groceries, nutrition information is not uniformly presented or always made easily accessible. HHS FDA will publish a request for information to gather public input regarding industry practices, technology, and current challenges to inform guidance for the food industry on nutrition, ingredient, and allergen information that should be available for groceries sold online." (National Strategy, page 22) This suggests at least two biases against Celiacs: A) The list of Major Food Allergens currently required to be labeled is finite (already established) and adequately informs and safeguards the public about potentially life-threatening food allergens on the product labels themselves, notwithstanding the FDA asking for public comments in April 2022 on evaluating the public health importance of food allergens other than the Major Food Allergens (FDA Docket FDA-2021-N-0553). In total, there were 1,907 comments submitted to the FDA, and 1,576 comments mentioned Celiac and/or Gluten as a food allergen (82.6%). B) This goal in the National Strategy is a retailing/IT issue in terms of digital merchandising of content (i.e., label contents for nutritional and allergen information), as opposed to a food manufacturer issue. Putting labeling in just Pillar 3 of the National Strategy, and the manner in which it was done, suggests that this is more about nutrition than ingredients including allergens, and as such, it appears to be more about a “nice to have” or "should have" as opposed to a "must have." Nutrition is fundamental for everyone, and it is important to understand nutritional elements (i.e., sodium, trans fat, sugar, etc.). However, for those with food allergies, the concept of making healthy choices is secondary to making safe choices that are free of the said allergen to which their immune system mounts a potentially life-threatening and life-debilitating response. In other words, before even worrying about the nutritional value, those with food allergies must cross a safety threshold as to safe ingredients. Just because some food may be healthy for some, that does not mean that these are safe choices for the those with food allergies. As U.S. Senator Royal S. Copeland, MD (D, NY, 1923-1938) said, "What is food for one is poison for another." (Source: "Hearing Before the Senate Comm. on Commerce, 73d Cong. (1934), reprinted in Charles Wesley Dunn, Federal Food, Drug, and Cosmetic Act: A Statement of Its Legislative Record 1176 (1987).], at 1176." For example, while a Non-IgE-Mediated food allergy does not trigger anaphylaxis and is not immediately life-threatening, people with Celiac Disease face potentially life-threatening and severe adverse health effects that can arise through Gluten ingestion including by way of example: anemia, cancer, heart disease, immunological scarring, intestinal damage and malnutrition. Personally, my son Jax had severe intestinal damage at age 5 from eating Gluten for some extended period of time (we just do not know how long he had Celiac for prior to be diagnosed) which caused malnutrition and anemia. The ingestion of Gluten also caused to failure to thrive, and his intestine took years to heal (although he is still anemic), but every time he accidentally gets Glutened (like he was on April 1, 2023 as illustrated on the cover of this Memo), he gets violently ill (like food poisoning) and the auto-immune response repeats to attack his small intestine. Adding labeling of Gluten to the National Strategy in Pillar #2 makes more sense for those with a Celiac Disease, "Integrate nutrition and health: Prioritize the role of nutrition and food security in overall health, including disease prevention and management, and ensure that our health care system addresses the nutrition needs of all people."