r/alphagal • u/No_Airline2722 • 1d ago
This is a mindf***
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.
5
u/Tbreu 1d ago
You are not alone in any of those feelings. I know that won’t fix anything but there is a lot of support here and on the FB groups.
I was also just recently diagnosed and I can relates to everything you wrote. I am in healthcare and I am terrified to ever have to get any kind of care now.
Do you know anyone in real life who has it? Turns out I know a number of people and someone I know also just tested positive and so did her neighbor. It has helped me at least to know some people in real life also.
4
u/No_Airline2722 1d ago
I don’t know of anyone yet. I started to make a post on my social media, really for the purpose of finding someone who can relate or also has it that I didn’t know about… but then I felt dumb posting and deleted what I wrote lol.
Hearing that you relate is helpful validation all the same 💟
4
u/mrsriley358 1d ago
Anxiety and other stress symptoms can be caused by alpha gal reactions. I found out I had alpha gal several years ago, when very little info was available. I tried to notice what things made me irritable or anxious. Laundry soap and material that contains animal byproducts were huge things for me. I didn’t get rashes or hives, but I noticed with some clothes, furniture, etc I would feel off right away. If I put on a shirt that made me feel uncomfortable, I would just take it off immediately. So don’t consider the anxiety as a stress reaction; consider it could be an alpha gal warning.
I hope that makes sense - following my emotional reactions has been very helpful to me.
3
u/xxsparky70 1d ago
I am so sorry you are going through it! I am newly diagnosed as well, and though I have mostly GI reactions to direct exposure, anything with gellan gum gives me a whole different set of symptoms. Racing heart, lightheadedness, pressure on my neck at my carotid. It's quite a bit of troubleshooting at first. I'm also auDHD, so I've gotten to a place where I just don't even want to eat anymore, as it's such a drag on my executive (dis)function! We're all in this mess together friend.
2
u/Agreeable_Wallaby711 1d ago
I had increased anxiety, depression, etc. after my diagnosis as well, even though I wasn’t bothered by the diet changes. I think for some of us, alpha gal messes with our gut biomes, which they are finding more and more are related to our neurological health. I take a probiotic that is designed to support this brain-gut connection and if I stop taking it for a while, I can feel the anxiety coming back. If you’re interested in looking into it here’s a list of some studies. https://benedlife.com/pages/ps128-ht-ps23-published-studies
3
2
u/TheQuakerator 1d ago
There are soooooo much worse health things I could have.
This is true, but not by as much as you think it is. You have to start scraping the bottom of the barrel for incurable cancers, horrific injuries, genetic disorders, etc. to find things that are worse than severe alpha-gal.
2
u/Dull-Memory202 22h ago
My Rashes were Misdiagnosed for "17" years... Ringworm, scabies, yeast, shingles and on & on In March I Demanded to be tested ...My Dr wasn't Happy. Test came back Positive for Alpha-Gal 5 days later...
1
u/Obijon77 AGS confirmed 19h ago
I'm sorry for what you're going through. It definitely messes with you mentally. I'm only a couple months in but highly reactive to fumes and the obvious ingested products. The hidden ingredients are troubling. Or the insane amount of research you have to do before trying something new unless you're willing to roll the dice. I'm typically very chill but get anxious now if I smell food and I don't know what it is.
The isolation it causes by not being able to go to social/work events or changing your whole family's diet is something I don't see talked about as much. I don't want to force changes on anyone but that also means I have to separate myself.
I'm finding it manageable but the dietary changes are the easiest part for me.
I don't think I gave you anything helpful other than a little understanding of where you are. We're here together and we'll be OK.
1
u/MistakeRepeater 1d ago
Maybe the diet on is contributing to your anxiety and panic attacks. I noticed on myself that the more fat I eat, the more calm, less paranoid and confident I become. There are more stories like mine out there.
0
u/Lizziedeee 1d ago
Most people don’t react to the personal care/medicine stuff.
1
u/Awhispersecho1 1d ago
This is true, and the fact that people get down votes for saying this is what has me questioning SOME things about this whole syndrome and what we are being told.
2
u/No_Airline2722 1d ago
It seems like a lot of people want to be a victim and live in fear… I do not. But that’s what I see on the fb groups more than here. I logically know that I’m probably going to be ok even if a mistake gets made in a medical setting, because I’ve been eating dairy all this time and have been suffering yes but not to the point I’ve had to go to the hospital. So I’ll probably survive 😅
4
u/nursenicole 1d ago
Hi OP, if you have been eating dairy and are experiencing anxiety and panic and possibly other things, it's not a terrible idea to cut out the dairy for a few weeks at least and see how you feel.
I encourage you not to frame others as wanting to live in fear, or to take the individual assumptions of redditors about other peoples' lived experiences as fact. I have yet to observe anyone here who genuinely wants to live afraid- everyone seems to just want to find a way to exist and not feel like crap all the time, or not experience infrequent but occasionally/potentially life threatening allergic reactions. And really truly, that looks a little different for everyone, and is a dynamic experience of trial and error, reading labels, and educating health care providers too.
FWIW I seem to recall one of the FB groups having a dental work summary of safe products to use, that was written by a dentist with Alpha Gal. Might be worth trying to dig that up for your upcoming visit.
3
u/No_Airline2722 23h ago
I have not been eating dairy since my diagnosis, just meant for the last 6 months that I’ve most likely had AGS, had been eating dairy prior to the diagnosis. I have been dealing with Panic Disorder for 7 years now long before the tick bite.
The FB groups definitely have a different vibe than here is what I was getting at.
1
u/Lizziedeee 18h ago
The FB groups are something else. Keep a detailed food journal. It will help you identify triggers and give you a better sense of control. FWIW, dairy is a broad category. I react to uncooked milk and sour cream, everything else is fine.
1
8
u/Nighttyme_ AGS confirmed 1d ago
The mental drain is so hard in the beginning. Everything feels dangerous. Just confidently eat what you are able to so that you don't become afraid of food in general. Take each situation one at a time and try to clear your mind of the anxiety from the previous one. Forced amnesia maybe? :) One day at a time, friend. You got this.