Reactions to Airborne Alpha-gal

A Guide for People With Alpha-gal Syndrome

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.

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 the most commonly reported airborne trigger of reactions (57, 117)

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 saliva and dander
• Various other emissions from mammals
• 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.

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.

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.

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.

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, mentions reactions to airborne reactions in her paper Managing mammalian meat allergy and tick anaphylaxis and in this presentation (@ 1:09:20) in which she 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 stable (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.

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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