Anyone diagnosed with alpha-Gal syndrome?

Posted by jen3840 @jen3840, 1 day ago

Diagnosed in June. Alpha-Gal is a tick-borne illness. Wow, life changing. Thought if I stayed away from pork, beef, and venison I would be fine, but made tiramisu donuts with my grandson and the heavy cream has an ingredient (carrageenan) which has properties of the alpha-Gal sugars (or something like that) .... My tongue and throat swelled up a bit and I was almost ready to go to the ER. Scary and frustrating.

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Becky, Volunteer Mentor | @becsbuddy | 19 hours ago

@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.

mayo99824 | @mayo99824 | 9 hours ago

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.

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | 7 hours ago

@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.