r/alphagal

I just got a class 2 positive for alpha gal antibodies. I do not remember a tick bite but I do go to the Midwest to visit family every couple years. Had stomach issues for the past 2 years. I’m 40f and am perimenopausal as well so this is all so overwhelming. I don’t even know where to begin adjusting my lifestyle. I just want to cry.

The confusing part is that I thought it was gluten and eggs this whole time. I spent a year stressing and avoiding gluten and eggs and I was so sure it was what was causing my issues. Doctor thinks that mammalian products were messing with my system and maybe my GI tract is so messed up to the point that I react to other foods as well. She recommended stopping mammalian foods for a month, let things heal, then reintroducing gluten and eggs one at a time.

Has anyone thought it was gluten or something else? Were you able to reintroduce other foods you mistook as an allergy but it was alpha gal the whole time? It would be so nice to at the very least have gluten again. Still kinda scared to eat it though.

Hi there.

I was bit by a LST in May and from that point forward (The Day Of Bite) I used the fig app and only ate an alpha gal diet because I was super scared of anaphylactic shock, hives, ETC.

8 weeks post bite I ordered an alpha gal IGE which was under 0 and undetectable.

Think I could start testing my food now?

I just had a really bad gastro attack. The kind where your intestines spasm really bad and put you on the floor.

I have eaten very little today, but I did drink a fountain Dr. Pepper. Upon research, it contains Phenylalanine. According to Google, it is found in Mammal milk. It is also present in meat, poultry, and fish.

Can you guys give me thoughts/experiences with this...chemical.

Side note:Dr. Pepper now evidently has aspartame in it. I have always been allergic to it, even before AG.

I am in the midst of the biggest flare up I've had in weeks. I've only known for maybe three weeks, but as far as painful, stressful, fatiguing, diarrhea that makes you wish for end days, its been a minute. I don't eat red meat often anyway, and I think thats what made it harder to track down for me. I couldn't really track my flareups in a food journal.

I've been terrified of the dairy allergy. Idk what I'll do if I have that part. I can deal with the meat better than dairy.

I've not been reactive to string cheese and a couple other dairy items, but I know some can eat cheese and be fine but it they eat ice cream they have to use the pen.

My food test...So last night (total since lunch, 25 hours) I ate a handful of crunchy cheese curls, a very, very, thin tomato sandwich with mayo on cheap white bread, about five Oz of coffee with powder creamer (I did change brands, as the other one was definitely hurting me. This one had not so far) and drank a bottle of water last night. I know I was a bit dehydrated and hadn't been drinking enough. It's 2pm here and so far today I've had half a cup of coffee with creamer and another very thin toasted tomato sandwich with mayo.

My stomach was gurgly this morning and I had a very early trip to the bathroom. For the last few hours I've only had quick trips OUT of the bathroom. I have no other symptoms, but I think the pain in the top of my stomach might be starting. That pain has actually been constant and sometimes debilitating off and on for years. I actually had almost no pain for a couple days until whats starting now.

Sooo.. what would think the culprit is? Is this AG or whatever of a number of other things I'm waiting to be tested for? Can I not eat freaking tomatoes now? Which would really suck since I have around twenty five quarts of tomato soup cooking down on the fire now to can this afternoon.

For the past 3 weeks I have had extreme fatigue, joint pain, and my body would get so weak that I felt like I cannot walk for too long without feeling soreness in my legs particularly thighs. I just found out today I had Alpha gal, while I was eating chorizo:( What were your symptoms and were they related to mine. How long did your symptoms last before you were diagnosed? Thanks!

*Update: received a nurse call to pick up a EpiPen since I have a severe case and reactions can happen between 2-6 hours. How much do you pay for your EpiPens?

I’m going there. Guys you can skip right past this one. Have any of you girls had issues with “down there” since getting AG? Can the histamine dump affect your ph levels? Is it possible to all the sudden be allergic to your spouse? Seeing my doctor today but since most doctors don’t understand AGS I don’t have high hopes for answers.

this is the article I wrote.

What is everyone's favorite plant butter? I am newly diagnosed and I have tried Earth Balance, but do not like it. Taste like rubber. Butter is the one food I really miss.

Not diagnosed, but planning on getting the test on my next appointment a week from now. I was curious if anyone else has a similar experience. Does anyone else get sick smelling beef cooking? My mom is currently making tacos and the smell of it is just so repulsive. It feels like I'm going to throw up. Luckily I have some good nausea/vomiting medication from my previous appointment.

Did they send you to a community care allergist or just primary care and an EpiPen?

I have really appreciated the willingness of this community to discuss their journey to diagnosis. I want to contribute, so here is my story....

It's a late evening in 2019, I'm laying in bed watching TV with my wife; suddenly my heart starts racing and it is hard to catch a breath. I shoot up from my bed and the world goes dim; I barely remain upright and uncontrollable shivering sets in. I am convinced I am having a heart attack and death is at hand. I get to the ER and my heart is good, I'm told it is IBS and anxiety but follow up with a cardiologist just to be safe.

The cardiologist puts me on a heart monitor for a month and notices strange patterns at certain times of the day. He assumes SVT and prescribes beta blockers (which I didn't take).

I realize I am not dying of heart disease but I don't want to either so I go on a serious diet; it was keto.....I did the Keto diet. So for a couple of years I ate protien almost exclusively and would have massive bouts of uncontrollable belching, shortness of breath, shivering and heart palpatations. This would happen daily and it was not everytime I ate, but it could be anytime at all.

I tried probiotics, liver cleanses, bone broth stomach resets; you name it and I tried it. I was convinced that I had some kind of terrible IBS or GERD and maybe I could do something to fix it. Sometimes my symptoms would fade for a couple of weeks, but then out of the blue they would come back.

Fast forward to 2026; AGS is all over the news. I'm an outdoorsy guy so I look in to this "new" plague. To my surprise I find story after story from people who have symptoms like mine. I decided right then to take matters in to my own hands. I found a lab (Quest Diagnostics) that allowed me to order my own AGS blood test. Sure enough, 3 days after my test I get a call from a staff physician to discuss my results; I have Alpha Gal Syndrome.

I had been sending myself in to anaphylaxis multiple times over the last 7 years and no one caught it! If you suspect you have AGS please get tested. It was an amazing relief to finally put a name to my misery; now I have an answer and I can do something about it.

Hi everyone- i just tested positive today for alpha-gal (1.64) and had some questions, so of course i went looking for an alpha gal subreddit. I went to summer camp with my son in rural Missouri and was bitten by at least 8 ticks in a 5 day period- all too small to identify if they were lone star or not. Prior, I was a vegan for a while to deal with my heart disease, but I would call myself a pescatarian now who eats meat occasionally when necessary. Since that trip I’ve been oddly itchy a lot (especially my hands) and had several episodes of hives. Once was after I ate some lamb, and another was after I ate a bite of ground beef. I’ve had other obvious rashes and hives since then, but since I rarely eat beef and never eat pork, it’s been hard to identify the causes. I’ve never, ever, had hives before this. I’m generally ok with just going back to never eating meat, but I still have minor symptoms from time to time, even without it. So, my questions are…

1. Is it worth seeing an allergist for follow up? My PC told me I could take Zyrtec and Pepcid daily and to avoid eating red meat, but did not seem too concerned with any follow-up (and even this was all over messages in the health system app).

2. I’ve not had any breathing issues, but should I ask for an epi pen?

3. I’m also having some left knee pain after the bites that I can’t trace to a specific event (I run, exercise, and play golf frequently). Feels like runners knee, but It’s not responding to rest. Could it also be an allergic reaction?

Thanks for your help and the support I’ve read for others here. I’m guessing I have some environmental sources of alpha gal to track down too, so I’ll be scanning all the posts for clues.

Drooling as I type this, haven't had a steak in ages.

Just to be clear, I have a dark sense of humor and this is nothing more than a joke.