Anyone else with alpha-gal develop cardiac or lung issues?
M, alpha-gal positive since 2019. Total IgE has been elevated for years, alpha-gal-specific IgE has bounced between 56 and >100 kU/L over the last 5 years despite avoidance.
Over the last 18 months, my health has declined — diagnosed with cardiac sarcoidosis, pulmonary sarcoidosis, HFpEF, and tons of PVCs . Now on prednisone + methotrexate. Trying to figure out if anyone else here has experienced something similar, or if it's just bad luck overlapping with my alpha-gal.
I'm aware of the Wilson 2018 ATVB paper on alpha-gal & coronary plaque, the Vernon 2022 BioHEART data, and the ACC 2025 article on alpha-gal cardiac implications — so the vascular link is on my radar. What I'm trying to find: anyone else in this community with granulomatous (sarcoid-style) lung or heart issues alongside alpha-gal? Or unexplained cardiomyopathy or recurrent arrhythmias?
Also, I urge people to read those articles.. links below.. I was about to have heart surgery and an implanted defibrillator.. and it very likely could have ended me.. The doctors were not looking into or taking my Alpha-Gal seriously. Please read "ACC Feature Article July 2025 -- The Overlooked Cardiac Implications of Alpha-Gal Syndrome" if nothing else..
ACC Feature Article. July 2025. The Overlooked Cardiac Implications of Alpha-Gal Syndrome. American College of Cardiology. https://www.acc.org/Latest-in-Cardiology/Articles/2025/07/01/01/Feature-The-Overlooked-Cardiac-Implications-of-Alpha-Gal-Syndrome
Wilson JM et al. 2018. IgE to the Mammalian Oligosaccharide Galactose-α-1,3-Galactose Is Associated With Increased Atheroma Volume and Plaques With Unstable Characteristics. Arteriosclerosis, Thrombosis, and Vascular Biology. 38:1665-1669. https://www.ahajournals.org/doi/10.1161/atvbaha.118.311222
Vernon ST et al. 2022. Immunoglobulin E Sensitization to Mammalian Oligosaccharide Galactose-α-1,3 (α-Gal) Is Associated With Noncalcified Plaque, Obstructive Coronary Artery Disease, and ST-Segment-Elevated Myocardial Infarction. Arteriosclerosis, Thrombosis, and Vascular Biology. 42:e121-e131. https://www.ahajournals.org/doi/10.1161/ATVBAHA.121.316878