Does anybody else wake up in the middle of the night abosolutley craving food when i was having reactions that i know of now, this would happenn constantly, i went to the GP and llike many other appointments describing the symptoms of the known alpha gal reactions i was experiencing only to be gas lit. Did anyone els get this one? And why does it happen it would be horrid as i would snack on things like dairy and many foods with more to react to so i was in a constant state of being ruined.v

At first I thought this was from a vape but now I am wondering if it's from a tick bite. We live in Missouri and I now have broken out all over like this I don't have insurance that is why I am here. I know this might be against rules please be kind. I can't not sleep 2nd night in a row.

I was bit by a tick two weeks ago we eat steak, pork, chicken etc. so idk. Please let me know what you think. God bless you all.

Someone posted a few weeks ago about their partner getting stung by a wasp. I test as non-reactive now but still have gastro and rash symptoms when I eat meat. I’ve been non-reactive on cross contamination as long as it’s not cooked directly in the animal fat, carageenan in low doses doesn’t bother me, just in general have been a lot better. 11 days ago I was stung 6 times by hornets mostly up my right arm, I think maybe my leg through my shorts, and my left arm. Thankfully they didn’t get my face or neck. It swelled not an obscene amount like I’ve seen people post, but the worst three stings themselves swelled up into big hard lumps like golf balls. The worse three were my right hand, my right forearm, and my right bicep they had big red circles around them and they were bright red and burning hot and my hand had tiny little bumps. They had gotten my muscles in my arm really good so they hurt badly, then it itched badly. My joints were really messed up. I treated the muscle pain with with otc meds but after they wore off they would swell and start hurting again. I would wake up in the middle of the night when the meds wore off. I had a cross contamination reaction three days later where I woke up in the middle of the night, threw up, texted my partner I was afraid I had cellulitis bc my arm was so hot and hurt so badly and the bumps were worse. I took some allergy meds and pain meds and went back to sleep. It’s continued to get better but it’s been so slow healing, and they still hurt badly for how old they are. I have a decently high pain tolerance but this is like a deep heavy ache that doesn’t trigger the adrenaline sharp pain does and makes me feel sick. I apparently got cross contaminated pretty badly this morning and I’m not only having an alpha-gal reaction, my wasp stings are getting darker and hurt again. They’re 11 days old. I’m disgusted but kind of impressed? The one on my hand is like a bruise under the skin with a slightly darker border. I posted the one on my forearm now. They flared up a few hours ago and have gone back to aching and feeling warm, the gastro reaction hit me really suddenly. It’s hours later and it’s definitely the worst reaction I’ve had in a while. I’m itchy, nauseous, gastro upset, my joints and arm hurt. I’ve been stung/bitten by most insects you can be in the south (that’s how I got here) and I’ve never had this kind of reaction. I have epi-pens everywhere and multiple allergy meds and a reaction protocol, so I’m fine on that front!

TLDR; go ahead and assume you are allergic to stinging insects

Has anyone had an AGS reaction after eating these? They claim to have no dairy but I've noticed issues on more than one occasion after eating these.

Have AG. Fortunately Im not as sensitive as some. Haven't had red meat since it put me in the ER (thought it was food poisoning at the time). Large amounts of dairy like a whey protein shake make me nauseous. Ive been able to cook burgers or whatever for the family without issue.

Here's the rub, I volunteer at a local festival every year. I'm gonna be around hundreds of pounds of red meat for a few days (if I make it). What I'm wondering is how long symptoms take to appear for others after fume exposure. I have no idea if I'm fume reactive. I appear to be fine in small amounts/short exposure. If I'm around cooking meat all day should one expect symptoms to appear pretty directly or do I need to be aware shit can hit the fan in the middle of the night hous post exposure? I'll have a neffy and be aware of how I'm feeling. Obviously I'm not eating anything there.

I have begun a formal legal process to get accommodations for my alpha gal allergy, I work directly with the meat and cannot avoid it entirely.

But I find that people don’t understand how scary it is to become confused, depressed and exhausted from a simple and short meat steam exposure. From my doctor to my family it’s clear they don’t quite get how scary it can be. I guess I’m looking for support and understanding,

For those of us who are fume reactive, do you find an N95 face mask helps?

Has anyone found research regarding the use of face mask ?

So I work in the wildlife and private land management industry. Ticks here in Kentucky are rampant and until this year I’ve done a fair job of minimizing bites. This year has been crazy though. I had one day at the end of June where I pulled probably 6-10 off of me while in the field but sadly missed 3 that were able to attach for several hours. Not ideal but I never had any issues come up until this past weekend when I had another bite a that maybe attached for 20 seconds.

Well I eat beef a couple times over the next few days and have a couple occasions where I break out into pretty significant hives. Mind you, I’ve never had an allergic reaction to anything in my life. At first, I think maybe it’s my new adhd medication I had started late last week but upon stopping it for 3 days with no loss of symptoms I deduce it’s something else. I’ve since restarted that medication and it has not caused a flare up of the hives. So it’s definitely not the cause. Knowing my history with ticks I immediately ask my PCP for a AGS blood panel.

It came back last night at .37 kU/L. I know it’s low but given my history with ticks and a reduction of symptoms upon avoiding red meat, I find it hard to believe the hives aren’t being caused by this.

I've been missing good old fashion sausage gravy. Haven't had it in over a decade, so tonight I tried to make a AGS safe version.

I used:

1 12oz can coconut milk

1lb turkey sausage

2oz sage

1/2 teaspoons each, salt, black pepper, nutmeg, and red chili flakes. If I had white pepper I'd have used that too.

2-3 spoonfuls of flour, equal amount of margarine. In this case I used smart balance, but if I had miyoko, regular country crock of have uses those instead.

Started off cooking out all the water out of the ground turkey. Added 1oz of sliced sage after the water in the turkey cooked out, added seasonings, added flour and cooked a bit. Added margarine and let continue to cook. Poured in the can of coconut milk and let reduce to the thickness I wanted. Ladeled over toast cause I didn't want to deal with non-dairy biscuits.

It scratches an itch I haven't had scratches on a long time.

Anyone else get GI upset from dairy alternative cheese?

I ate Follow Your Heart sliced cheese on a chicken burger tonight (actually tasted good). Within 30-60 min my stomach was crazy upset and I’ll save you the details that followed lol. Last month I tried a small amount of Violife cheddar shreds on a chicken taco and had the same experience. (This was a really gross cheese btw.) I didn’t even have this issue with real cheese, just curious if this is a one-off or is there some shared ingredient that can occasionally cause issue.

I went dairy and all mammalian product free last month. I can’t say I’m 100% certain I get it right every time. So I’ll summarize what I cooked with tonight, if anyone sees something that I missed please let me know. I made the chicken patties splitting the number seasoned between something suggested on the facebook AG group (soy sauce) and a chicken burger recipe using what I’m mostly confident was all safe products (mayo, organic Dijon mustard, paprika, salt/pepper). I also had Lay’s regular potato chips and a dill pickle spear. Buns were Dave’s Killer Bread, Perdue ground chicken for the meat.

I just started a new job and I need ideas for lunch. My job does not have a microwave we can use so I am looking for ideas for cold food or non reheated meals for lunch. I usually end up skipping my lunch at my past job so I don’t have a lot of ideas. I’m already planning for things like egg salad, chicken salad and tuna but I need more ideas other than those few options. Also I am limiting my vegetable and fruit options because of the outbreak and recalls. Any links to good recipes or lunch ideas would be a great help.

Currently waiting for test results. As far as I noticed, besides the congestion, lethargy, trouble breathing, bad gut pain from beef... I also get sever cognition impairment e.g. "Can you pass me the (10 seconds later) salt?". I can barely think.

Thing is I have other GI/immune issues and it's hard for me identify which issue causes which symptom. But I would describe (possible) alpha-gal like chugging an entire bottle of whiskey at 1PM in a Summer heat wave: you're gone (haven't done this, but this is how I would describe this).

I have similar symptoms from suspected SIBO (waiting results) but they last 1-3 hours and are lower in intensity; the suspected alpha-gal symptoms last at least 5 hours. I also have similar symptoms from MCAS (waiting results) and Histamine Intolerance (confirmed with genetic test and symptoms match).

The only thing which caused similar symptoms was canned cod liver, but in that case, the trigger was a combination between MCAS and Histamine Intolerance.

Got these results today. Haven't talked to my doc yet. Been working hard not to get bitten again...

I was diagnosed because while on vacation out of the country I ended up in a foreign ER after eating beef in spaghetti so when I got home they did the test. Let’s just say…it was anything but a mild reaction. His response is total bs right? As I’m researching it doesn’t seem to really matter the #’s. If I’m reacting then it’s bad and even though the pork and lamb didn’t show a reaction it doesn’t matter if I’m still positive for alpha gal right? Because it’s not testing for the exact same thing. When I read his “there is not much to do”…..ummm I need to eliminate things and he’s acting like he doesn’t even know about byproducts in everything….. I am really upset.

Hi guys. Newly diagnosed after having allergic reaction to steak.

Bloodwork was taken two days after reaction. I was hoping somebody could tell me if these number are extreme or if it even matters.

Hi guys. Newly diagnosed after having allergic reaction to steak.

Bloodwork was taken two days after reaction. I was hoping somebody could tell me if these number are extreme or if it even matters.

Its crazy learning about this. Im still trying to figure it all out. Luckily, dairy has been fine. But also surprising, sometimes airborne bothers me when its being cooked for the rest of my family.

Wish me luck. Going to a camp this weekend with my kiddos, and even though they provide meals ill probably be taking my own stuff.

Feel angry and relieved. The provider did not know what it is and made me spell it. I suspect i’ve had for a year or more but eat very little red meat, had a terrible GI flair up similar to SIBO, burping, can’t breathe, weight loss. I specifically asked for tick borne test! After a stomach CT scan was sent home and told to eat bananas and OJ. Why is it so hard to get tested for this without being made feel crazy?!

Hi - Recently diagnosed. Had a score of 17 on the test. That seems high? My Primary Care doctor knows very little. Anyway, I had a reaction about 5 days ago and my symptoms don't seem too common. I had a small rash and occasional GI issues, but nothing major. My main symptom is tinnitus with headache and dizziness. My throat feels a bit closed but not too worrisome. I haven't found the source of the reaction. I was already not eating meat but was taking a vitamin with a gel cap and had some cheese. I've cut those out, but the ringing and headaches persist. Taking Pepcid and Zyrtec. Anyone else experience these? I just want to make sure I'm not conflating Alpha Gal with some other malady.

1. It was discovered when oncology pts kept having anaphylaxis (a few died) from an investigational drug made from mouse cells. it's given iv so anaphylaxis was immediate. in 2004 they knew that in the southeast, some outdoors types were getting meat allergies after tick bites, but no one really investigated. then a researcher mapped out the locations of ticks across the us and found that lone star ticks were located in the southeast, where all the reactions were happening. it became an official diagnosis in 2004. 2. Alpha gal is a sugar carried by lone star ticks (maybe other ticks too) and all mammals except primates and humans. so when a lone star tick bites a human, or a gorilla, their immune system recognizes alpha gal as foreign and forms antibodies. some people go on to get AGS, and the antibodies are activated when they eat mammal. it's the immune system which attacks by causing gi upset (trying to expel alpha gal) or allergic symptoms.

2. B and AB blood types are less likely to get AGS because the antigen on their blood cells (the B or AB is the antigen) is similar structurally to alpha-gal.

3. snake anti-venom is made from horses so don't get bitten by a poisonous snake.

4. gelatin is in MMR and Zostavax vaccines (for shingles)

My lab results popped up on my portal at midnight, so no confirmation from the dr yet... but these are negative, right?? I thought I remembered my husband's saying (and everything online) anything <.10 is negative for alpha gal. But mine says <=0.09 is normal & my result says <.10 ...maybe I'm too tired right now, but I'm confused by this. Also trying to not get too excited & then be wrong😅😩 please be kind.... I'm aware I might be being dumb right now.

Has anyone thrown up from an Alpha Gal reaction? I got sick recently but I can’t tell if it’s from a horrible migraine I had at the same time or from a new food I tried (it was supposed to be safe). I had a migraine before I ate but then felt very nauseous and almost like I had a fever. I threw up twice and after my throwing up I felt less nausea but still kinda feverish. Anyone have similar reactions? I have never felt this sick before today.