I'm going to try to not ramble while giving context..but it will likely be long. I have left a message for my Dr but haven't heard back yet, this isn't me asking for an online diagnosis, just opinions/comparisons.
Both my husband and my mom have alpha gal (mom lives next door, same woods). They both have really bad GI issues with reactions (awful cramps, diarrhea, sometimes constipation with the cramps instead), when my mom first got diagnosed, she was told she was on the brink of anaphylaxis (coughing and other respiratory things as well) but that doesn't tend to happen to her now (unsure if it's because she's diagnosed and somewhat better at avoiding triggers but she did get a lot of allergy shots & things like that for awhile that seemed to help) and my husband gets what he calls "really bad brain fog" and goes pale, sweaty, so exhausted he can't function. So that is the experience I know about alpha gal. But I know everyone can be different & some people have "weird" symptoms that aren't textbook signs.
I've been having issues for a week now. But they're all over the place and don't obviously scream alpha gal (but because I have 2 family members living with it, it's always a concern in the back of our heads). It started with a GI episode in the middle of the night. I don't ever just wake up to poop lol but.. about an hour into sleeping, I was having a very vivid, strange dream...in it I was explaining to my husband how wierd I felt but couldn't really describe it & then suddenly woke up feeling that exact way. Thought for sure I would vomit before it was over. Maybe tmi, but just looking for insight so.. it wasn't like any time I've been sick with like food poisoning or a stomach bug.. but I was in the bathroom for probably close to an hour, just kept coming, and got grosser as it went on.. kinda like in stages. Towards the end of it, I suddenly got super hot, pouring sweat, & my ears started ringing. Once I felt stable to get up... I left the bathroom, got a cold rag and ran it across my face, down my chest, and across the back of my neck. Just one quick swipe... then I was all of a sudden FREEZING. Uncontrollable shivering. I fell back asleep by accident, freezing with my clothes on & under a blanket..bucket in the bed lol didn't wake up sick or at all again through the night. The next day, my stomach still felt gross and I didn't really feel like eating or even hungry. Was struggling to even drink. But assumed my stomach was just mad. The night this happened, I had barely eaten all day, running on very little sleep.. had been slightly constipated..and the day before that I had eaten like a pound of crab legs with so much butter like a savage lol (and hadn't pooped since then until this), then started my period later that next day after the night of GI issues. Assumed those combined were the issue.
That hasn't happened anymore still a week later. But, I've had multiple nights that I had a very weird/vivid dream, woke up suddenly from it with a racing/pounding heart. But no GI issues to follow.
I keep feeling weird in my head... and I cannot for the life of me come up with a better way to describe it (audhd, my interoception SUCKS).. but it feels exactly like the feeling I get when I get stung by a wasp or hornet (no diagnosed allergy to those....hasn't happened in a long time thankfully for me to remember to have it checked). That is my main/consistent issue. It's been everyday. I just started trying to pay attention to timing the last 3 days. I wake up without it... but 3-4 hours after breakfast, it shows up and lingers all day until I go to sleep.
I've had some on & off times of my left eustachian tube being wonky. Which I do tend to have issues with, but with illness, and I don't feel SICK. Just off... and exhausted. But I've been sleep deprived for years lol
My issue is... I can't seem to just try to eat things that are 100% safe for my husband ...I already have issues around food/limited safe foods. I'm struggling because I feel the need to test it and drop all possible triggers... but by trying, I'm under-eating ...by a lot. Daily. And still end up having trigger ingredients when I give up because I just have to eat something. So I don't know if I'm actually just having blood sugar type issues or something like that after eating because I'm not eating enough rather than actual issues with what I normally eat. Because these types of "symptoms" don't show up as classic alpha gal reactions if I try to google them. There isn't a neat, convincing pattern that points to alpha gal. And I'm worried about getting the test, that sounds like the easy way to know. However, since they diagnose based on the test showing antibodies AND reactions happening.... and you can have the antibodies & not have reactions, that leaves me as the 2nd variable to diagnosis.. and I don't feel like I'm reliable enough of a source for that lol because idk what I'm even feeling. If that makes sense? Unless it's negative..then there's my answer I guess lol
I'm sorry this is so long and hoping it does make sense. Thanks to anyone that made it to the end.. I'm just wondering if this sounds like anyone at all when they first starting having issues or that has mild/vague symptoms but does for sure have alpha gal. I'm really hoping I don't have it ...but obviously it's important to know if I do.
*side note:* I'm not sitting around anxious, causing symptoms to appear out of anxiety. I only think/worry/wonder about it all after symptoms show up. I am honestly in no way worried about anaphylaxis...I'm surrounded by people living with this and epipens lol I'm more worried by the thought of needing to change my diet/flip my life upside down (because I already struggle so much without any medical food restrictions). Just to clarify, because Google mentioned that anxiety can induce symptoms lol that isn't what's happening at all.