By The Numbers: Food Allergies & Celiac Disease
- Jon Bari
- 2 days ago
- 8 min read
Updated: 11 minutes ago
Facts, Stats & Public Policy
When the White House released the Make Our Children Healthy Again Assessment on May 22, 2025, the MAHA Report declared that "the health of American children is in crisis" and cited that:
"Today, over 1 in 4 American children suffers from allergies, including seasonal allergies, eczema, and food allergies."
"Between 1997 and 2018, childhood food‑allergy prevalence rose 88%."
"Celiac disease rates have increased 5-fold in American children since the 1980s."
Food Allergies By the Numbers (IgE Mediated Food Allergies)
According to Food Allergy Research & Education (FARE):
33 Million Americans have food allergies (mostly to the Top 9 Major Food Allergens: Milk, Eggs, Fish, Crustacean Shellfish, Tree Nuts, Peanuts, Wheat, Soybeans & Sesame)
1 in 10 adults
1 in 13 children (about 2 in every U.S. classroom)
Every 10 seconds, a food allergy reaction sends a patient to an Emergency Room.
2.4 million Americans are allergic to Wheat (Non-Celiac); wheat allergic individuals "often react to closely related cereals like barley and rye, less frequently to the more distant relative, oats."
Quantifying Gluten Allergies & Intolerances: Impact of Public Policy
It's estimated that about 25.7 million Americans have some type of food allergy or intolerance to eating Gluten, a protein found in Wheat, Barley, Rye and most Oats (through cross-contamination with Wheat, Barley and Rye).
2.4 million Americans - IgE-Mediated food allergy to Wheat and cross reactivity to Barley, Rye and Oats (potentially life-threatening)
3.3 million Americans with Celiac Disease, Non-IgE Mediated food allergy to Gluten (potentially life-threatening)
20+ million Americans with Non-Celiac Gluten Sensitivity (NCGS) or intolerance (non life-threatening). It's important to note that NCGS is a digestive response and not an immunological response.
Since 2006, only Wheat has been required to be labeled in the United States, but not Barley, Rye and Oats.
For the health and well-being of 25+ million Americans who have a food allergy or intolerance to Gluten, the Secretary of Health and Human Services must now prioritize a public health problem long overdue for robust action: reducing chronic diet-related disease by requiring the labeling of Gluten-containing grains as Major Food Allergens on all packaged foods in the United States, just like Gluten must be declared on all food labels in 87 other countries.
What is Celiac Disease? (Non-IgE Mediated Food Allergy)
Celiac Disease is a potentially life-threatening food allergy and auto-immune disease that is triggered by eating Gluten, a protein found in Wheat, Barley, Rye and most Oats. In addition to vomiting and diarrhea, individuals with Celiac may experience many adverse health effects from eating Gluten including anemia, immunological scarring, additional auto-immune diseases, intestinal damage, malnutrition and cancer. A 100% Gluten Free diet is the only existing treatment for Celiac Disease.
Unlike an IgE-Mediated food allergy when the body's immune system attacks the offending food protein, Celiac is characterized as a Non-IgE Mediated food allergy. When someone with Celiac ingests even a trace amount of Gluten, the body's immune system responds and initiates an auto-immune cascade whereby the body attacks itself (i.e., the small intestine causing villous atrophy).
Celiac Disease By the Numbers
Celiac is a disease, not a diet:
Greater than 1% of the general population have Celiac in the United States
3.3+ Million Americans have Celiac Disease, including 729,0000 Children
No Medications - there are no pharmaceutical treatments or cures for Celiac Disease
No Rescue Medicines - Unlike traditional food allergies with IgE-Mediated mechanisms, there is no rescue medicine (i.e., adrenaline or antihistamine) to treat accidental ingestion of Gluten and the start of the auto-immune cascade in food allergy with Non-IgE-Mediated mechanisms
87 other countries require the labeling of Gluten grains (Wheat, Barley, Rye & Oats), not including the United States
44% of people with Celiac Disease who follow a strict Gluten Free diet still get glutened once a month. That's why we need mandatory labeling of all Gluten grains in the United States. Since 2006, only Wheat has been required to be labeled in the US, but Barley, Rye and Oats have not been required to be declared.
2x-6x Greater Cost - Celiacs spend 2x-6x more on Gluten Free food products when compared to the food products’ Gluten containing counterparts, on both a per unit price and per ounce price.
Non-Celiac Gluten Sensitivity (Gluten Intolerance)
According to the Cleveland Clinic, it's estimated that about 6% of the United States population is Gluten intolerant and that amounts to about 20 million Americans who cannot eat Wheat, Barley, Rye and most Oats. While Gluten intolerance or Non-Celiac Gluten Sensitivity can be used interchangeably, it is important to note that these conditions are not potentially life threatening. Non-Celiac Gluten Sensitivity is not the same as IgE-Medicated food allergies or Non-IgE-Mediated food allergies like Celiac Disease, which are both potentially life-threatening.
American Celiacs are Forced to Rely on Ultra-Processed Foods in the Absence of Mandatory Labeling of Gluten
Since Gluten is not declared as a Major Food Allergen in the United States, Celiacs are forced to rely on products that are voluntarily labeled Gluten Free. Often times, these products are Ultra-Processed Foods that have been specifically created to be marketed in a premium marketplace of high-priced Gluten Free food items.
According to The New York Times, "because use of the gluten-free claim is voluntary, many foods that are in fact gluten-free might not be labeled as such." The Celiac community just wants to know whether Barley, Rye and Oats are in food products so that we can make informed and safe choices.
What is Food Allergy? The Similarities and Differences Between Non-IgE-Mediated Mechanisms with Celiac Disease & Typical IgE-Mediated Mechanisms
According to the National Academies of Sciences, Engineering, and Medicine, Committee on Food Allergies, "Food allergy has two key classifications: immunoglobulin E (IgE)-mediated or non-IgE-mediated."
There are several very important near-peer similarities between a Celiac food allergy with Non-IgE-Mediated Mechanisms (Gluten) and typical IgE-Mediated Mechanisms (Milk, Eggs, Fin Fish, Crustacean Shellfish, Tree Nuts, Peanuts, Wheat, Soybeans & Sesame): potentially life-threatening, the only treatment is to strictly avoid the food allergen(s), and consumers’ reliance on food labels to know what is safe to eat. Importantly, unlike traditional food allergies with IgE-Mediated mechanisms, there is no rescue medicine (i.e., adrenaline or antihistamine) to treat accidental ingestion of Gluten and the start of the auto-immune cascade in food allergy with Non-IgE-Mediated mechanisms such as Celiac Disease. Additionally, those with a Non-IgE-Mediated food allergy to Gluten cannot outgrow their food allergy – Celiac is lifelong (until such time as any treatments or a cure may be developed).
Supporting Comments to Require Gluten Labeling from Dr. Virginia Stallings
It is instructive to read Dr. Virginia Stallings' supporting comments to the FDA dated November 29, 2023 and her comments dated August 4, 2022. Dr. Stallings is board-certified nutrition pediatrician, Professor of Pediatrics and Director of the Nutrition Center at the Children’s Hospital of Philadelphia. In addition, Dr. Stallings served as the Editor and Chair of the National Academies of Sciences, Engineering, and Medicine, Committee on Food Allergies: "Finding a Path to Safety in Food Allergy: Assessment of the Global Burden, Causes, Prevention, Management and Public Policy." This was published by the National Academies Press, 2016 and cited as FDA Ref. 2 in the FDA’s Final Guidance.
According to Dr. Stallings’ comments to the FDA,
"While U.S. consumers' reactions to a top 9 Major Food Allergens and Gluten vary, their consumer habits are the same, they avoid purchasing foods that contain the allergen(s) that cause a potentially life-threatening immunological adverse reaction. They rely on food labels to know what is safe to eat.
However, the key difference from a consumer protection standpoint is that under FALCPA, the labeling scheme for the top 9 Major Food Allergens in the U.S. is mandatory, but the labeling of Gluten is voluntary. Just because something is Wheat free does not mean its Gluten Free. In other words, whereas sufferers of the current top 9 Major Food Allergens in the U.S. rely on what ingredients are expressly included in required labeling disclosures of packaged foods, the Celiac community cannot rely on manufacturers to declare Gluten on food labels. This must change.
I believe that a Gluten Free diet is not all that is needed to treat Celiac Disease; rather a Gluten Free diet is all that has ever been historically available to treat Celiac Disease. Additionally, with respect to labeling food products in the United States, the voluntary Gluten Free labeling scheme does not sufficiently protect consumers who are on medically required and very restrictive Gluten Free diets. I am respectfully requesting that the FDA change the voluntary labeling rule to a mandatory labeling rule to keep 3.3 million Americans with Celiac safer."
Supporting Comments to Require Gluten Labeling from Dr. Kirsi Jarvinen-Seppo
It is instructive to read the supporting comments from Kirsi Jarvinen-Seppo, MD, PhD, Chief, Founders' Distinguished Professorship in Pediatric Allergy and Immunology, Professor of Pediatrics, Medicine, Microbiology and Immunology, Director, Center for Food Allergy, Golisano Children's Hospital, University of Rochester Medical Center. Dr. Jarvinen-Seppo is also the author of UpToDate's "Grain allergy: Allergens and grain classification" and "Grain allergy: Clinical features, diagnosis, and management."
"I am writing to express my enthusiastic support for Jax Bari's FDA Citizen Petition... I have close to 3 decades of clinical experience in treating children with food allergy to cereals including wheat, barley, rye and oat... Throughout my clinical training I have learned that many wheat-allergic children are also sensitized by skin and serum specific IgE testing as well as clinically reactive to other cross-reactive grains in the Graminae grass family including barley, rye and sometimes oat. This is due to the similarity of the protein structure of these related grains... Wheat allergy is often responsible for severe, life-threatening allergic and anaphylactic reactions and therefore strict avoidance of any amounts including cross-contact to wheat and related grains is recommended and strongly urged in patients allergic to wheat."
Courage at Congress
In March 2024, FARE hosted Courage at Congress: Advocate for a Cure fly-in and welcomed more than 250 food allergy advocates from 42 states to Washington, DC. It was an amazing experience!
Hearing the families share their lived experiences was both powerful and heartbreaking at times. The families spoke passionately and reminded us how fragile life can be, even from just a crumb. Perhaps the most meaningful part for Jax was being surrounded by children who are also going through some type of food allergy journey. While the attendees had various food allergies and dietary restrictions, the common denominator was that everyone had lost their food freedom and the ability to eat without fear what they want, where they want and when they want.
The simple pleasure of eating from a buffet that was free of the Top 9 Major Food Allergens and Gluten Free was so meaningful for Jax and the other children and parents in attendance. Often times, buffets are a no-go zone for people with food allergies because of unknown ingredients and the potential for cross contact with food allergens. FARE and the Park Hyatt in Washington, DC made sure that all of the buffet-style food served was safe and delicious! That sense of community empowered the attendees to bring their Courage at Congress and appeal for common sense solutions for food allergen labeling, food allergy medication and food allergy education including:
The ADINA Act, H.R.4263. S.2079 – Require the labeling of Gluten and the Top 9 Major Food Allergens on all prescription and over-the-counter medicines in the U.S.
The EPIPEN Act, H.R.6965, S.69655 – Cap the price of epinephrine auto-injectors at $60.
Dillon's Law, H.R. 3910, S.3575 – Encourage states to enactor EpiPen training programs and protect good Samaritans
We were grateful to have attended Courage at Congress and for FARE welcoming children Non-IgE Mediated food allergies including Celiac and Eosinophilic Esophagitis (EoE)!
Additional Resources
University of Manchester - "Individuals with wheat allergy often react to closely related cereals like barley and rye, less frequently to the more distant relative, oats."
Thermo Fisher - "Allergens from rye show profound cross-reactivity with other cereal grains like wheat, barley, and limited cross-reactivity with oat and even potato extracts... Sensitized individuals are advised to avoid rye flour in diet and strict labeling laws to label gluten-containing cereals have been established in various countries.
