Anyone diagnosed with alpha-Gal syndrome?

I have had Alpha Gal Syndrome for eight years. I now have a torn rotator cuff and torn bicep that really needs surgery. However, most hospitals use heparin and other "pork or beef" related drugs during surgeries and I not only have Alpha Gal but also have, "Pork Cat Syndrome" which will make my throat close almost instantly if consumed. So I am terrified of surgery. In Maryland, most hospitals haven't a clue what I am talking about, including all of my physicians from cardiologists down to primary care. I am 78 years old and very active, still teach at the college, bowl, walk, etc., but now my right arm which is my dominant side, is in constant pain and I am too frightened to have a shoulder cuff "replacement." Any comments negative or positive?

That is awful! I have that Pork Cat Syndrome as well and my tongue and throat swell up terribly. I haven't had my colonoscopy as nurses in GI area don't know what AGS is and everything seems too unfamiliar, and it makes me terribly nervous about any of it. Made an appointment with Dr. Scott Commins in NC as he is top doc in the field. Maybe try to get in to see him? I totally get where you are coming from. Looked for referral from my Mayo allergy dept as they didn't even know much about AGS. The allergy dept could not help me as there is no allergy doc in all of Mayo that specializes in it. Very unfortunate. Good luck with finding someone.

@donnamac I was officially diagnosed with Alpha Gal in September of this year. I've been struggling with the inability to eat meat since 2020. My symptoms have been gastrointestinal only, cramps, bloating, gas, and diarrhea. It typically takes 7 to 10 days to run its course. However what I wanted to share was I had reverse shoulder replacement of my right shoulder in May 2025. I personally had no side effects of any medications. Since I didn't know I had Alpha Gal it was not part of the conversation with my doctor. I am a active 70 year old male.

@donnamac Hello, I have had alpha gal for 15 years. I had hip replacement surgery in May 2025 at Maine Medical Center in Portland, Maine. My surgeon and staff (anesthesiologist and pharmacy) researched for 4 months on what medications and anesthesia would be safe for them to use for my surgery. They did a spreadsheet and are submitting it for a peer review paper to help other patients like you so other surgeons know what to use. Perhaps your surgical staff could contact the pharmacy at Maine Medical Center to see what they used. I totally understand your fear but my surgery went extremely well; I woke up in the recovery room after 90 minutes and wasn't groggy or in pain and went home the next day. I am 75 and completely recovered; I was in a lot of pain like you with arthritis and bone spurs. If you could find a surgical group who could do this kind of research to assure you that they know what to use that will be safe for you. For example, propofol, an anesthesia, can be made with and without animal proteins. They need to research and find those types of meds for you. There is a dr. in Virginia, Dr. Thomas Platts-Mills, UVA-Charlottesville, who has done tons of research on Alpha gal and a place to go for information. Good luck! I hope this helps you 😀

@2sk4ths
What brand of inhaler? Most contain lactose and I can't have that due to the alpha gal syndrome:(
Sorry you have it too!

Hi, I’ve recently been diagnosed with Alpha gal in the UK, and despite cutting everything out I’m still experiencing lots of symptoms (hives on face, fatigue, nausea and arthritic pain). It would be great to know from others experience if they are symptom free after cutting meat and mammalian products out? I have not tested positive for lymes but was bitten 6 months ago and would be grateful to understand if others have had tests for other tick related infections? Thanks

@donnamac2 Have you gotten any closer to having surgery?

It could be smells of meat, using body lotions or even lip balm. I was getting symptoms from using mascara with ingredients that are questionable. Had to completely change makeup, creams, household cleaners, hand soaps, etc. Hopefully that may help!!

I would ask a pharmacist or your allergy doc. My pharmacist has been extremely helpful.

@becsbuddy
Yes I had it Sept.25 2025
I've never felt better