Reactions to Airborne Alpha-gal

A Guide for People With Alpha-gal Syndrome

Though not widely recognized, food hypersensitivity by inhalation can cause major morbidity in affected individuals. The exposure is usually more obvious and often substantial in occupational environments but frequently occurs in non-occupational settings, such as homes, schools, restaurants, grocery stores, and commercial flights. The exposure can be trivial, as in mere smelling or being in the vicinity of the food. The clinical manifestations can vary from a benign respiratory or cutaneous reaction to a systemic one that can be life-threatening. In addition to strict avoidance, such highly-sensitive subjects should carry self-injectable epinephrine and wear MedicAlert® identification. (115)

Daniel A Ramirez, MD and Sami L Bahna, MD, DrPH

Louisiana State University University School of Medicine

Patients do report symptoms with exposure to fumes from mammalian meats/fats being cooked; however, no blinded challenges have been published to definitively document the airborne (droplet) route of exposure. Interestingly, experience suggests fumes may pose a more potent risk to reactive patients than moderate levels of pet dander exposure (57).

Scott Commins, MD, PhD

University of North Carolina

There are no published data on the percentage of people with alpha-gal syndrome (AGS) who react after exposure to airborne alpha-gal, but the informal estimates of experts range from 10-30% (113, 114). People with AGS who react to airborne alpha-gal report that these reactions often start within minutes of exposure, progress quickly, and can be severe.

  • Until you know whether you react to airborne alpha-gal, exercise caution around possible sources of exposure, especially barbecues and other types of cooking that generate aerosolized droplets of mammalian fat.
  • If you experience dizziness, breathing difficulty or other symptoms, remove yourself immediately from the source of exposure!
  • Some people with AGS report that fume reactions are the most dangerous reactions that they experience, leading rapidly to anaphylaxis, airway issues, drops in blood pressure, and/or unconsciousness.

Sources of Airborne Alpha-gal

Fumes (airborne droplets) from cooking meat

Suspended fat droplets in smoke or fumes from cooking meat, especially from grills, barbeques, and less often frying meat, are by far the most commonly reported airborne trigger of reactions (57).

Other possible sources of airborne exposure

People with AGS have also reported reactions to:

  • Emissions from mammalian waste, especially from large quantities of waste on farms
  • Fumes from cooking milk or dairy products
  • Powdered dairy products
  • Pet dander
  • Dryer exhaust when dryer sheets made with lanolin are used
  • Candles made with tallow or stearic acid from mammals
  • Air fresheners, especially plug-in ones (some contain carrageenan)

There are also reports of reactions to perfumes, scents, and many other products. Because many people with AGS go on to develop mast cell disorders (see below), it isn’t clear in all cases if these reactions are related to AGS or mast cell issues. More research is needed.

Symptoms

In the majority of patients, food particle inhalation induces respiratory symptoms that can be nasal (rhinorrhea, sneezing, nasal congestion), ocular (tearing, redness, irritation), or lower respiratory (cough, wheeze). In addition, skin manifestations and even, although much more rarely, anaphylaxis can occur.

Daniel A Ramirez, MD and Sami L Bahna, MD, DrPH

Allergy & Immunology Section, Louisiana State University Health Science Center

People with AGS have reported all of the following symptoms to meat fumes and other airborne exposures:

  • Itching
  • Runny nose
  • Hives, rash or flushing
  • Angioedema (swelling)
  • Nausea or other GI issues
  • Tingling throat
  • Breathing issues like coughing, wheezing, shortness of breath
  • Dizziness
  • Changes in blood pressure or heart rate
  • Brain fog or confusion
  • A sense of impending doom
  • Lightheadedness
  • Loss of Consciousness
  • Other symptoms of anaphylaxis

Read about patients’ reactions to fumes from cooking meat and other sources of alpha-gal here.

    Managing Reactions to Airborne Alpha-gal

    People with AGS report that the following approaches to managing reactions to airborne alpha-gal have helped them:

    • Remove yourself immediately from the source of exposure!
    • Wash your hands and face as soon as possible after exposure.
    • Seek the advice of your doctor.  Drugs such as inhaled beta-agonists, and even omalizumab, can be helpful in the management of airborne alpha-gal reactions (57).
    • Work with your doctor to develop a Food Allergy and Anaphylaxis Emergency Care Plan.
    • Avoid situations where you might be exposed to airborne alpha-gal, such as barbecues and restaurants that grill meat.
    • Buy some well-fitting N95 or similar masks. Cambridge masks are a popular, reusable option.
    • If your physician is unable to help, consider making an appointment with Dr. Scott Commins at UNC. He has seen over 2,500 patients with AGS and is familiar with the full-spectrum of alpha-gal reactions, including fume reactions.

     

    Masks

    Patients who react to airborne alpha-gal report that high quality, well-fitting N95 or similar masks can help in situations where exposure to airborne particles of alpha-gal cannot be avoided.

    One situation in which many people with alpha-gal syndrome wear, or at least bring, a mask is airplane travel. On a plane you may not be able to move away from the source of fumes. Some patients also find them helpful during hospitalization.

    Patient-recommended Masks

    Note that not all these masks will necessarily provide protection against airborne viruses and other airborne pathogens.

    Cambridge Masks

    Cloth masks

    Vogmasks

    Cloth masks

    Project N95

    A reliable source of N95 masks

    For the Skeptics

    Unfortunately, it is not uncommon for patients with fume reactions to encounter skepticism, not just from their friends and family, but also from physicians, who may tell them that they are just experiencing anxiety. Alpha-gal syndrome is a recently discovered allergy with many paradigm-shifting features that are difficult for old-school allergists and other physicians to process. They are more comfortable dealing with protein allergies that follow the rules they learned in medical school. However, many come around if you are patient and provide information. These steps may help:

    1. Encourage your physician to read expert Dr. Scott Commins’ Diagnosis and Management of Alpha-gal Syndrome: lessons from 2,500 patients in which he discusses reactions to airborne alpha-gal.

    2. Australian expert Dr. Sheila van Nunen, who first recognized alpha-gal syndrome, has never published anything about fume reactions, but in this presentation (@ 1:09:20) she discusses them, states that they affect approximately 30% of patients, and describes their impact.

    3. Explain that unlike protein allergens, the primary antigenic form of alpha-gal is thought to be lipids (fat). While proteins can be denatured by cooking and do not typically become aerosolized, alpha-gal is heat stabile (70) and, as all cooks know, fat is aerosolized during cooking. Aerosolized fat droplets can be inhaled deep into the lungs where they can trigger reactions, just like pollen, pet-dander, and other non-food allergens that your physician may be more familiar with. For reasons that aren’t clear, reactions to airborne alpha-gal tend to be more severe than reactions to these more familiar airborne allergens. However, a quick Google Scholar search will turn up numerous papers about anaphylactic reactions to various airborne allergens.

    4. Document your reactions. Doctors are less likely to dismiss your reports of reactions if you have notes, photos, videos, eyewitness accounts, and other data. Some at-home blood pressure monitors will record readings.  People with severe reactions to airborne alpha-gal have found that recording drops in blood pressure associated with fume reactions can be helpful when dealing with skeptical physicians.

    Mast Cell Syndromes

    Approximately 3-5% of patients also appear to develop signs/symptoms consistent with a mast cell syndrome, which could be related to mast cell releasing factors present in tick saliva or the significant increase in total IgE leading to increased mast cell reactivity. Alternatively, emergence of a plasmablast-like, IgE-secreting B cell compartment with specific expansion of CCR6+ cells in subjects within 3 weeks of an attached A. americanum or I. scapularis tick bite may explain the new-onset urticaria and possible mast cell activation symptoms (57).

    Scott Commins, MD, PhD

    University of North Carolina

    3-5% of people with alpha-gal syndrome go on to develop symptoms consistent with a mast cell syndrome (57). In addition, AGS can unmask indolent systemic mastocytosis (62). If you begin to develop sensitivity to a wide range of airborne exposures, including scents, perfumes, etc., especially if it’s not clear that they all contain alpha-gal, this may be a red flag suggesting that a mast cell issue needs to be ruled out.

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