Anyone diagnosed with alpha-Gal syndrome?

@jen3854. Welcome to Mayo Clinic Connect! I’m glad you found this group. I’ve never heard of Alpha-Gal Syndrome. And I’m glad that your doctor recognized it! I’m sure that others with like symptoms will join the discussion soon.

I came down with tick borne illness about 55 years ago as a pre-teen. Back then no one knew Lymes or alpha-gal. They knew it was a tick (embedded) and just figured it was Rocky Mountain fever because that was the only tick disease they knew of back then. Not long before I couldn’t stomach red meat anymore. Jump ahead more years and I ended up in the hospital after eating something maybe fried in lard (common back then) and passed out from dehydration due to vomiting, diarrhea, rapid fluid loss. The doc said to just not eat what makes me sick (meat, dairy) but no diagnosis.
I didn’t get diagnosed with late stage Lyme for decades. My history included blood/other tests that indicated some unknown parasite, periodic heart diseases (transient pericarditis, others no one was sure of), arthritis that wasn’t arthritis, repeated Bell’s Palsy, various skin rashes (erythema nodosum, and others), and things I can't even remember. All while running ultras and biking around the world and being super healthy otherwise. Pregnancy did me in though because it changed my immune system. I was blessed that I also have conditions that require prophylactic antibiotics (doxy and minocycline) which probably helped me stay healthy.
Back to alpha gal. I have eaten meat when it would be socially unacceptable to not (alone in foreign countries where I can’t explain that I can’t eat meat for instance) and mostly it is just gastro, vomiting, blockage or diarrhea depending on something - I don’t know. My gut shuts down. Not diagnosed but the history fits. In some ways it has been a blessing as my diet (mostly veg) has helped me outlive my family and many peers.
Good luck and try to see the bright side. I still crave meat sometimes, but it could be worse.

@jen3840
My daughter was diagnosed with Alpha- Gal a couple of years ago. First, she couldn’t eat beef and later on pork.
She even reacts to particles in the air when it’s being cooked.
It’s a potentially dangerous allergy and she carries an Epi-Pen.

https://www.mayoclinic.org/diseases-conditions/alpha-gal-syndrome/symptoms-causes/syc-20428608
Here is information on Alpha-Gal from Mayo Clinic

@jen3840, I add my welcome. You may also be interested in this related discussion:
- Hives at night: Alpha-gal syndrome? https://connect.mayoclinic.org/discussion/hives-at-night/

I agree with @astaingegerdm that reactions can be scary and potentially dangerous. Were you prescribed an epinephrine autoinjector (Epi-pen)?

I was prescribed an Epi-pen. I also was told by my doc to take Zyrtec once daily. Have prednisone as well. Last night I realized some of my reactions were from previously baking beef or pork. The residue from that I am guessing is causing my mouth, tongue and cheeks to swell when I bake anything now (unless it is tightly covered). Time to deep clean oven.

These comments are super helpful. Before I moved away from my husband, I would often get hives and swollen face and hands without knowing why. I thought they may be tied to preceding fevers but now I wonder if maybe due to using the same cast iron pans he used for meats. And maybe the aromatics from his meat. He only ate red meats and carbs - fresh fruits and veg never crossed his lips. I eat mostly vegetables (eggs, fish, poultry okay) No hives since living away from him. And no - I don’t think I was just allergic to the husband - LOL.

I have had alpha gal for about 5 years and it has been a huge adjustment. You have to change your entire life! All the products you use have to change, including shampoo, laundry detergent, toothpaste etc... I have done a ton of research and learned a lot but learn more every day. Make sure you have epi pens, benadryl, steroids, pepcid and an inhaler! Ask me anything and if I don't know I will be honest

I had awful situation yesterday. I had eaten something that said vegan but wasn't completely vegan on Sunday. Monday at 4 a.m. woke up to no voice, and felt my cheek begin to swell. Losing my voice was a new symptom for me. I took prednisone and Benadryl. This morning cheek still red and a tiny bit swollen but my voice is back. What a scare. You literally have to read every single ingredient on everything you put in your mouth. If it was only a simple allergy of not eating beef or pork it would be easy. I even found that bone char is used to make bleached flour and sugar. It causes symptoms in me at least. Yuck. I was so close to going to the ER.