Our Reactions to Airborne Alpha-gal
People with Alpha-gal Syndrome Describe Their Reactions to Airborne Alpha-gal
“Fumes are the worst. I have to sell my restaurant and end my 25 year career at 35 years old because of a stupid tick bite. I can’t taste anything I make. I can’t eat any gelatin or byproducts. It’s just a sad thing.”
I stopped at Hyvee yesterday before work and I accidentally locked my purse and keys in my car. Went in and used their phone to call Lynnette (who is coincidentally my emergency contact) and got no answer. So I left her a message, called Pop-A-Lock and the receptionist told me to wait outside. I hesitated because there’s a big meat smoker and barbecue out there and every time I walk by them, it feels like I get punched in the chest. But I went out there anyway because the Pop-A-Lock guy needed to see me in front of the large store. So I lounged on their For Sale patio chairs, trying to look like I was just chilling. Nothin’ to see here, people….just taking this Potential Patio Purchase for a test drive.
After 20 minutes, I started feeling my upper chest get tight..I could smell meat cooking, but I’m outside, right? I should be fine! I began debating my options before my thought processes got fuzzy.
Ten minutes later, my forehead and palms itched and my face was burning. I began debating the merits of going to their Pharmacy and asking for an Epi pen or some Unisom melts (essentially safe Benadryl) but…my money was locked in the car, along with all my meds. So taking an Epi that wasn’t mine would be theft. I could go sit inside, but there were cooking burgers and pizza by the seating area. I tried lurking near the liquor store door but then I couldn’t see the cars going in and out of the parking lot properly. I decided I’d stay where I was and if I got “really bad,” I’d have a passerby call 911.
Right then, I saw Pop-A-Lock, thank God. I pointed at him like I was a General in the Army Of One and stood up. The world tilted. Uh-oh….not good. I made it to my car, trying to catch my breath. I couldn’t. Why not? Pop-A-Lock Dude came around the car with a very official-looking clipboard, and by then I knew I was sunk, we were beyond Benadryl. I managed to croak out, “Open the car. Need my Epi. Epi. Now. Epi.” He looked at me blankly for a second and then started hustling and as he worked to unlock my car he said, “Do I need to dial 911?” I managed to get out, “Not. (Wheeze) Yet.”
At this point I…could…not…breathe…I was making sounds like a dying squeaky toy….none of which were good. Every wheezy breath I took was like a one-note accordion on its last leg. I just couldn’t get enough air. And thank you, sweet Lord…he got the door unlocked. I dumped out my backpack, found the Epi, hiked up my skirt and Epi’d myself in the thigh muscle while holding the passenger side door of my car open.
The elderly ladies in the Old Lady Car parked next to mine had been backing out and when I Epi’d, the car stopped. As I was counting…I looked up and the ladies inside stared at me like I’d sprouted a second head, their mouths both perfect “O”s, Buick Lucerne stopped halfway out of the parking space and blocking the world. 15 seconds, 20….35….airway open….I could hear the parking lot sounds again….okay….I can breathe.
I turn to Pop-A-Lock and say, “So what do I owe ya?” He looked absolutely mystified. He said, “Um, shouldn’t you sit down or something?” Oh. Yeah, good idea.
Lynnette and Kate arrived on scene with my keys. Upon assessing the situation, I informed Lynnette “I’m probably going to go in to work.” She looks at me and knowing I’m bi-phasic (I normally have a secondary reaction after Epi-ing and after the Epi, you must seek ER treatment for this very reason) she says, “We’ll see.” (Which incidentally, is what you should say to a nearly 6 feet tall anaphylactic person when you’re her 5’4 inch tall “keeper.”)
She and Kate took me to the ER instead (Kate drove, I wasn’t allowed to) and I called in to work, feeling awful and pissed off that my plan of GOING to work was completely out the window. On the way to the ER, I begin to have a secondary reaction.
At the ER and the check-in nurse asked me what I was allergic to but at that point, I could barely talk. “Mammal.” “Huh?” Mammal.” “Animal?” “MAMMAL!!!!” I squeaky-shouted….I think…I didn’t have much voice at that point and things were getting a little fuzzy and hazy so I was really not feeling the 20 questions game. Lynnette (who had been parking the car) once again motored up to the desk, shoved my wobbly butt into a wheelchair (surprisingly easily for a 5’4 person) and quickly explained my situation to the nurse. The nurse said, “I dont know about that allergy, but you obviously have something going on…” and got me to the doctor ASAP. THANK you.
This particular ER doctor had never been on my super-fun, Anaphylaxis Carnival Ride before and he didn’t seem to know what AGS was either, but at least he listened to Lynnette (or he was properly intimidated by her knowledge and the fact that she was wielding a computer tablet of all medical AGS data…let’s go with the latter.) Thank goodness, because I was completely out of it at that point. They pumped me full of Benadryl and steroids. The Benadryl makes me coherent and the steroids make me want Braum’s French fries….because…duh…who doesn’t? The medical staff was busy, but got me the meds, I came to and was my “normalish” self.
We waited three years to get discharged and by the time I was home with my steroids, it was 9:30 at night, I had the Epi hangover headache, every joint in my body hurt, but I was alive….with a fistful of Braum’s fries.
So here are the lessons: I really do have to keep that Epi on me. And I always, always have to go to the ER afterwards.
I’ve also learned I can Epi myself. I wasn’t sure I’d be coherent enough…and there is a possibility that I may not be. I always have an Epi with me, at work and at home.
And lastly, somewhere there is a nurse I yelled at, two old ladies from the HyVee parking lot that I probably flashed upon Epi-ing and a traumatized Pop-A-Lock guy I owe a huge apology to. (Lynnette said I had “completely freaked him out.”)
The scariest part of this whole thing for me has been the fume (aka airborne reactions).
One day I was volunteering at my sons school. I was in there for well over an hour–in and out. They were cooking pork.
When I left and walked to my car, nothing seemed out of place, but after sitting down and starting to drive, I felt very odd–light headed and tingly. I remember looking to my friend, telling her I think I am going to pass out, trying to get to the side of the road, and that is it. She managed to put the car in park before the car went off into the woods.
The next thing I knew, I was in the ER at Duke University. I was admitted to the hospital and had every test in the book. MRIs, brain scans, echos, heart tests. An otherwise very healthy person does not just have syncopy. It was all caused by a rapid drop in my blood pressure.
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 start to feel nauseous within about 30 seconds of coming in contact with fumes. This is followed by dizziness, swelling of my face, eyes and fingers, extreme pain in my joints, and hours of diarrhea.
I react to animals as well. The dander actually. Found this out the hard way while dusting from the dog dander. I ended up at the hospital with esophageal spasms, elevated blood pressure, elevated heart rate and what they called the start of an anaphylactic reaction. No more dusting right? Lol
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.
The first fume reaction I had was while using a cooking spray. My nose hurt, face numbness and tingling, quickly turning into swelling of tongue, throat, and esophagus. I also started reacting to other cooking fumes, perfumes, cleaning products, and cat dander.
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!
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