Our Reactions to Airborne Alpha-gal

People think I’m crazy when I tell them I can’t breath when I smell the fumes for meat cooking. Some days all I want to do is cry. 

I’m reactive to bacon. Rash on my chest and I feel flushed.

When I walk past a grill cooking hamburgers or walk by a barbecue place I start to get dizzy and pass out due to the fumes. Learned this lesson at an amusement park

I have fume reactions all the time. 

1. My first fume reaction was a week after additional lone star tick bites. I was cooking beef gravy at work. My throat began to close and tickle, and I had shortness of breath and nausea. It was a mild airborne reaction, but the beginning of many to come. It is also when the smell of heated beef, pork, or dairy was no longer appealing, and it felt like I had a new superpower of smell. I could smell alpha-gal allergen offenders much more strongly from here on, and even in and household and bathing products.

2. While driving near Cook-Out or Burger King as their smoke billows out, my throat tickles and I cough in my closed up car. One time I was riding with others and we stopped at a light. I felt the tickle and shortness of breath. I asked if there was a burger place nearby. Everyone looked around and found one behind us.

3. The most serious fume reaction I’ve had was to my apartment neighbor’s grill. My dog needed to go outside, so I had to walk through the grill smoke, once on the way out, and on the way back in. Shortly after, he needed to go back outside, so I walked back through it twice more. I became very dizzy and fatigued, and also very weak. I lied down on the couch. I could not keep myself awake. I passed out. My dog woke me up later by barking and growling at me, which he never does. I knew something wasn’t right. No one else was home with me. I picked up my phone and wondered if I should call for help, but I was so weak no words would come out when I tried to speak to my dog, so I gave up and I dropped the phone back on the table. I could not focus or concentrate to dial for help. It was no use. I was too weak to get an epi-pen. My mind was also not thinking straight and I gave in to the worst that could happen, and accepted it, and fell back asleep/passed out again. Only later did I realize how serious this could have been.

4. I was at work and someone brought in fresh food with still steaming ground beef. They needed to talk to me, but meanwhile the smell of the hot beef was beginning to affect me. I began slurring, then losing balance and stumbling, then talking unnecessarily much, but with some confusion. I noticed my coordination was off. I felt a tingle on the top of my head, which is strangely my personal warning that my symptoms will progress. I was exposed for maybe 15 minutes total before I left. Driving home I noticed my cheeks became tight, eyes watering, a migraine starting, shortness of breath and cough, and my depth perception was hindered. I also began to feel nauseated, lightheaded, and weak. I felt some paranoia and panic setting in which I could not control. I knew it was the histamine increase and the way my body responds. I needed to get home safely, but I was so afraid it was too late. It took all I had to make it home safely. Looking back, I should not have been driving. The entire day following I was fatigued with aches and a migraine, and had to minimize my activities at work.

5. I volunteer at the animal shelter. Everytime I leave, after only being there an hour, I feel a thick tickle in my throat and shortness of breath. Sometimes my cheeks turn red. Up to 24 hours later I have symptoms related to this exposure, mostly consisting of migraines and extreme fatigue and aches.

Before I knew what alpha gal was, I noticed that every time my husband cooked ham, I would be on the front porch sick as a dog. We thought it was psychosomatic since I did not like country ham. As time went by, I started getting sicker whenever I was around any pork at all. Eventually I became disoriented, my heart would beat out of my chest. My heart rate would sky rocket. My vision would get cloudy to the point I couldn’t see. My throat would get tight and I would cough. Eventually I started having asthma attacks. I have since developed fume reactions to smells other than just meats. A certain perfume will bring me to my knees. I have been laid out sick on the couch for days following a reaction. I have to wear a mask nearly everywhere I go (unless I know it is safe.)

I react to fumes from the bbq the sausages are the most severe my throat closes up.
It becomes difficult as we are campers and bbq smoke comes from other camp site.

There have been so many times, but I’ll share a couple of the worst for me. My husband opened a bag of pork rinds. The next thing I knew, my friend was helping me up off of the floor. It took a couple of days to get past the brain fog and weakness. Another reaction was to an unopened bag of dog food that was in my vehicle. My husband was driving and suddenly I was coughing, then lost my breath (throat was closing). He grabbed the epipen and stabbed me. I immediately could breath but was shaking terribly. The ER was not much help, because they didn’t have a clue about Alpha Gal. For three days, I could barely function. In both of these cases, I never smelled the culprit. It was in the air, and I didn’t even know I was in danger.

I’m reactive to fumes.  Whether it’s a restaurant, grocery store, or family gathering.. I will get dizzy, act like I’m intoxicated with alcohol ( slurred words, extreme confusion and disorientation.) I will pass out within 15 minutes if I don’t get fresh air.

 I was determined I would not be “one of those people” that reacted to airborne mammal. Yet it would start getting hard to breathe whenever I went grocery shopping (there’s a grill outside and deli and meat area inside that cooks burgers, hot dogs and pizza.) I’d race through the store to get my few things, get into my car and halfway home my face would go numb. I’d look in the rear view mirror and one side of my face would be swollen and I’d be slurring (and should not have been driving.) I’d begun to suspect fume issues but it wasnt until my coworkers ordered pizza (we work in a small closed-in area) and I went into anaphylaxis. But unlike “typical” anaphylaxis, mine is atypical. I would start slurring, get confused, walk into things like walls and start passing out. I no longer drink alcohol because I feel my anaphylactic symptoms are similar to a drunk person’s.

The fumes from cooking beef is my kryptonite… I get severe brain fog, confusion and coordination issues. 3 weeks ago at work a colleague ate beef lo mein at her desk which she just heated up in a microwave – it was like someone hit me in the face with a baseball bat… nearly fell off my chair and then, while trying to get out of the immediate area, was stumbling around and walking into cabinets and walls. Immediately took a Sleep Melt and was only able to clear my head after 3 totally unproductive hours. Felt as if my brain misfires and I could not clearly articulate words – I saw a previous post where someone referred to it as having “moose mouth”. This is a regular experience and I had to get our medical department involved to get a seat assignment away from kitchenettes/pantries in our office and to have a warning poster put up close to my work area. 

I have had one fume reaction, several months ago. My daughter made french toast on a griddle which had previously had sausage cooked on it. The griddle was clean, but the non-stick coating stores the molecules from previous things and re-releases them during heating. Within 15 minutes of sitting in the room when she was cooking the toast, my skin began to feel like it was on FIRE. Literally BURNING. And I began to turn beet red from head to toe. I went outside, but it didn’t help. I had to double dose on anti-histamines to get it to calm down.

At first, I thought that I was one of the lucky ones that didn’t experience fume reactions. Granted, my sense of smell seems to be on “high alert” since being diagnosed, but I had no reactions in the beginning. However, that changed one evening when I went to a movie with friends while on a girls’ trip. One ordered popcorn, but the other wanted to try out the new dining feature in this particular theater and ordered a cheeseburger and cheese fries. I sat in the middle and the smell from the burger and fries was overwhelming. Soon, my face was beginning to itch and about an hour into the movie, I realized that I had hives on my cheeks. I was able to take my Unisom and stop the reaction, but it wasn’t fun. Since that time, I find that I don’t have problems if I am in an open-air setting, but I try to avoid being in closed spaces with meat being cooked. 

 I thought people who wrote about fume reactions in the group were a little bit crazy. Then it happened to me. It was a Saturday and my husband and I had just eaten lunch at the food court in the mall. The ventilation system was somehow malfunctioning, so it smelled a lot. I started coughing a bit. Then it got more intense. I had to walk really slowly or I would feel like I wasn’t able to breathe right. Since I had read about fume reactions, I pretty quickly understood what was happening.

Fume reactions can be a huge problem. Sometimes you can’t control your environment. Or… whenever you go outside, you have to be prepared that it might happen.

I had a severe fume reaction to my husband’s beef pot pie. It was cooked in an oven and when the top of the pot pie was opened to cool, the steam escaped. I sat across from him at the table eating my salad and 15 minutes later I had horrible abdominal pain and nausea. I used my epi pen and we were otw to the ER. I had vomiting and diarrhea, and reddened skin, on the verge of passing out. The ER doctor told my husband it was good we got there when we did because my blood pressure had dropped so low.  

I too reacted to meat fumes from a grill in the hospital cafeteria. When I was also diagnosed with mast cell activation syndrome, my allergist put me on Allegra and Pepcid twice a day. After a few weeks my fume reactions disappeared. I don’t know if this might help with alpha gal only, but it might be worth a try. Just check with your doctor about safety of the meds. I know that many people with mast cell activation syndrome can take up to four Allegra a day.

I react to cooking bacon and beef I manage a restaurant I get hives and shortness of breath I run away as soon as it starts never waited around after that to see what happens 

May 2019: The fumes bothered me for about 5 months. I couldn’t drive by a BBQ restaurant near my house when they were cooking. Dr Commins said the fume reactions would eventually go away and finally they did. I hope that’s true for you. Hang in there!

October 2019: Unfortunately, it has come back. Not as severe of a reaction but it’s back.

I react severely to fumes of any meat OR warm dairy product. I react walking through parking lots if the restaurants nearby are cooking any meats, cheese, pork, etc…. My daughter heated up a bag of buttered popcorn in the microwave one day that sent me into one of the worst anaphylactic episodes yet, in ER again, struggling to breathe. Even briefly smelling my neighbors cooking meat on their grill outside will cause me to react big time. It all really sucks and people don’t think it’s real which makes it even worse. It’s the very worst part of this awful allergy for me. The isolation and unexpected reactions I can’t control bc it’s very limiting in my family’s life and in mind.

It’s been a week since I was diagnosed. Who knew that a crockpot created enough fumes to make me sick! Last night my family cooked a beef roast in the crockpot. I was baking in the kitchen when I started coughing and sneezing, eyes running, nose streaming. Turned off the crockpot- luckily their food was done. Went outside for fresh air and recovered. Didn’t have a full blown need the epipen event, but scared me! What do you do when your family is planning on cooking red meat? This whole thing is making me crazy!