by Gayle Rigione, CEO of Allergy Force
Over the course of the two-day Food Allergy Symposium for Industry 3.0 hosted by Betsy Craig and MenuTrinfo , attendees increased their food allergy IQ and EQ, learning from presentations by experts in food manufacturing, food services, allergen training and certification, immunology, education/student dining services, disability rights and advocacy.
Allergist, Division of Allergy & Immunology
A presentation by Dr. S. Shahzad Mustafa gave conference attendees a healthy dose of perspective on food allergy prevalence and its impact on quality of life.
“Take the science, merge it with personal preferences and that leads to patient-centric care.”
Dr. Mustafa sees patients out of the Rochester Regional Health System and is involved with the allergy/immunology training program at the University of Rochester, where he is Clinical Assistant Professor of Medicine. He also serves as the Medical Advisory Board Chair for FAACT.“You can’t be distracted by the noise of misinformation,” he cautioned at the outset, quoting James Daly, an American actor best known for his role in the hospital drama series Medical Center. (…even though the food allergy space is rife with misinformation.)
So, setting the record straight…
“Do you want to guide your life by an uncommon event?”
Food allergies affect up to 32 million Americans, approximately 8% of those younger than 18. The incidence of food allergy has risen dramatically since the end of the 1900’s and early 2000’s. In fact, allergic conditions — food allergy, asthma, eczema, environmental allergies — are on the rise throughout the US, Canada, Europe and Australia.
Dr. Mustafa shared that his own son has food allergies, so while he cares for people with the condition for a living, he also lives it personally. On a spectrum of mortality risk, he shared that his son “is more likely to be murdered than to die of his food allergies.” You can see from the graph below (shared with permission from Dr. Mustafa {Umasunthar. Clin Exp All 2013; 43:1333.} ) that death by food allergy is not a common event.
The takeaway? Fatal food anaphylaxis is an extremely rare event, and although this does not assuage the grief felt by parents and families who have lost loved ones to anaphylaxis, or the fears of parents sending their child with food allergies off to college, it is important to keep in mind as we manage food allergies for individuals and in the community.
“We do studies on populations, but treat individuals.”
According to Dr. Mustafa, food allergy is over-diagnosed. Evaluation of data from Dr. David Fleischer and colleagues (Citation: J Pediatr 2011; 158: 578-83) showed overdiagnosis by 93% when patients had avoided suspected allergens with no reaction history, and 84% when patients avoided suspected allergens due to a previous ‘reaction’.
Approximately 170 foods have been reported to cause food allergies, of which 9 account for 95% of reactions — eggs, crustacean shellfish, fish, milk, peanuts, seeds (e.g., sesame), soy, tree nuts and wheat.
Diagnosing food allergy is an imperfect process and food allergy diagnostics are evolving.
Physicians use a combination of patient histories, skin testing, blood testing, and sometimes oral food challenges to diagnose food allergy. The gold standard for diagnosing food allergy is the oral food challenge during which a patient is dosed with a suspected (or known) allergen over a period of hours until either a reaction occurs, or not. This test can be a nail-biting experience for patients and their families. Imagine being tasked to repeatedly consume small amounts of a food you believe could make you extremely ill, or has actually made you extremely ill in the past?
Regardless of whether a challenge is passed or failed, a challenge provides patients and their families with invaluable clarity that can improve the overall quality of life for both the patient and their family.
“ ‘The Goldilock’s Principle’ — Not too hot, not too cold, but just right.”
In his practice, Dr. Mustafa cares for people who range from ‘the invincible’, to those who want to live ‘life in a bubble’.
Neither extreme is ideal. The above graph shows that living in a state of ‘relaxed readiness’ — the midpoint of the graph — is an optimal state of food allergy anxiety. Being in this zone helps people cope and manage the condition without taking dangerous risks or being exhaustingly hyper-vigilant. Dr. Mustafa calls this the “Goldilock’s Principle” — not too hot, not too cold, but just right.
In general, the more allergies a person manages, the greater the impact on their overall quality of life.
In their work on campuses across the country, nursing staff on college campuses see many anxious high responders — students and parents — with eye opening lists of food allergies.
Some Hope and Some Considerations for College Dining Services and Nursing Staff
(1) Longer term, positive developments are on the horizon. While colleges have the early 2000’s bubble of children born with food allergies headed their way, developments in the food allergy space…
- Advances in food allergy treatments such as immunotherapies (oral, sublingual, patch), and new treatment options being studied (Omalizumab (Xolair), Dupilumab (Dupixent))
- Children outgrowing allergies over years
- Early introduction of allergenic foods, particularly peanut and egg, (validated by the 2015 LEAP Study) to individuals at higher risk of developing food allergy
…may lessen the burden on the higher ed system over time.
(2) Communication is key. Open and informed communication between students, parents and the school is critical.
(3) The daily burden of managing food allergies can significantly affect overall quality of life. Mental health is a big part of food allergies. Food allergies can significantly impact a student’s on campus quality of life, from dining choices and housing & roommate situations, to athletics and socializing.
(4) Some students’ diagnoses may be outdated, or even inaccurate. Though all reported food allergies must be taken seriously and handled with the greatest care, some students may have diagnoses that are outdated, or even inaccurate. Correct diagnosis of a student’s food allergies can dramatically improve a student’s overall campus experience.
(5) Immediate access to epinephrine can save lives. Epinephrine is the only treatment for systemic reactions. Any time there is any doubt, it’s time to epi. Access to epinephrine can save a life.
Student-centric care takes time, conversation, building relationships and translating a food allergy diagnosis into a full and meaningful college experience.
Betsy Craig and the MenuTrinfo team organized the Food Allergy Symposium for Industry (FASI 3.0) in February’21, offering a jam-packed agenda with speakers from the food manufacturing, food services, healthcare, higher education, non-profit & advocacy, government and legal sectors. This meeting of the minds showcased the latest and greatest food safety, advocacy, regulatory and healthcare initiatives to protect consumers with food allergies and Celiac disease from accidental exposure to foods that could make them sick.
About the Author: Gayle Rigione is CEO of Allergy Force, the food allergy management app. She’s also an allergy mom. She’s lived the heart stopping moments when her son ate the wrong thing, second guessed reactions and raced to the ER. These experiences inspire her to draw on her strategy, business development and digital know-how to create tech tools for people with food allergies. Mark Twain once said, “The two most important days in your life are the day you are born and the day you find out why.” Allergy Force is her ‘why’. Whatever you do, do it with a full heart. Audentes Fortuna Iuvat
