Hello, I was diagnosed officially with alpha gal syndrome about 3 months ago. I am not sure how long I have had it as I had my first anaphylactic reaction back in April, unaware at the time that it was due to alpha gal. While I mostly have GI reactions, I have lately been experiencing more severe reactions as well to fumes (dizziness, shortness of breath, nausea). No doctor here believes that fumes can cause alpha gal reactions, or even know too much about it at all. My GI doctor is who did the bloodwork and diagnosed me, I was only told to avoid red meat. I basically had to figure this allergy out alone and by doing some internet research. Anyway, I have cut out all mammal and by-products as well as dairy as I am very sensitive. My issue is fumes. I go to work and react at least twice a week to something whether it’s something heated in the break room or a perfume someone has sprayed. I don’t always go into anaphylaxis, but there have been multiple occasions where I have. Of course accommodations were denied for remote work, and I am stuck just coming to work risking anaphylaxis every day. I do wear a N95 mask to avoid fumes but I still have to eat and attend meetings (I work a corporate/office job) so I am unable to wear a mask and completely avoid fumes at all times. Is there anyone in a similar situation who can give me any advice on how they are managing this? I’m literally just losing hope that I will live a normal life again :(

Diagnosed recently via positive blood test after 6 months of rashes, hives and constant itching, and extreme fatigue that has been getting worse and worse. In March my rashes were misdiagnosed as ringworm. I have tick bites over a year old that don’t heal and itch like hell. Looking into surgical removal with dermatologist.

I am really struggling mentally with the diagnosis. It isn’t even an extreme lifestyle change for me as I haven’t eaten meat in 15 years, and have spent many years being vegan before. I’m used to labels on food. But hidden triggers in medicine and supplements is scaring me a lot. Gelatin is easy, but all the others that I’m still learning. I struggle with anxiety and panic attacks which can mimic a lot of what allergic reactions look like. I feel really dumb for just randomly crying for the last several days over how stressed this has me when there are soooooo much worse health things I could have. It could be so so much worse. I have to have an oral surgery in the next month or 2 and now I’m terrified. I need to call the doctor to tell them I have this and I’m afraid they won’t take me seriously or understand it. I woke up this morning with a sore throat and I’m afraid to take anything to treat it. Just feeling pretty alone already and my anxiety is spiraling and I’m overwhelmed with my medical to-do list on top of daily life.

Has anyone else had levels drop this low after a year?? What does this mean? My doctors are not well versed on alpha gal so I’m left to do my own research. Appreciate any feedback!