Anyone diagnosed with alpha-Gal syndrome?

Posted by jen3840 @jen3840, Aug 17, 2025

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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dberkhahn58 | @dberkhahn58 | Mar 10 7:43pm

I have AGS since 2007(19 years). It took 7 years before I was properly diagnosed. Don’t believe all the hype you hear about cures, SAAT, and home remedies. THERE IS NO CURE at this time. Until Dr Cummins says there is a cure I won’t believe it. I’m not trying to be a Debbie downer but facts are facts. Watch cross contamination it will get you every time. Best rule to live by is Fins, Feathers, and Scales are good, Gives live birth and nurses it’s young Bad
I wish you all luck on this crazy journey.

jen3840 | @jen3840 | Mar 11 3:04am

I am seeing Dr. Commins in May. Hopefully will get some answers. Unfortunate that Mayo Allergy Dept does not have any specialists in this specific allergy yet. Am hopeful there will be one in the near future. Am doing a cheese challenge soon. Crossing my fingers!!