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Anyone diagnosed with alpha-Gal syndrome?

Posted by jen3840 @jen3840, Aug 17 7:36am

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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Ms. Mac | @donnamac | Nov 5 10:11am

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?

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jen3840 | @jen3840 | Nov 5 10:52am

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.

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uh1h | @uh1h | 3 days ago
In reply to @donnamac "I have had Alpha Gal Syndrome for eight years. I now have a torn rotator cuff..." + (show)
Profile picture for Ms. Mac @donnamac

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?

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@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.

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