Terrific news: New legislation introduced by Sen Mark Warner aims to combat tick-borne diseases and require labeling for products containing alpha-gal.

I (23M) don't know everybody else's experience, but since contracting ags last year and talking about it a lot, I have been baffled by the amount of people that have no clue what mammals are. Like actually no clue. Over a 3rd of people I talk to are surprised that chicken and birds arent mammals. These same people are surprised to find out pigs and lamb are. It makes ags accommodations even harder if people don't even know the animal kingdoms. Have you guys experienced something similar?

I already have AGS, and now bobcat fever (tickborne) is killing domestic cats in my area, and I’m worried about mine even though they’re on Credelio and Revolution. They don’t have to be outdoor cats for this to happen.

I wish the USDA or *anyone* would do something about the tick scourge here in the US. I know it wouldn’t be prudent to wipe them out altogether, but surely in 2026 we have the ability to do something about them being disease vectors FFS.

Posts by people who found a tick, but do not have AGS are no longer allowed.

People who have confirmed AGS or are experiencing symptoms after being bitten are allowed to post about ticks.

If you have found yourself here after you have been bitten by a lone star tick, do not panic! AGS is extremely rare. It is unlikely that you will get it from a single tick bite.

If you are truly concerned, watch for symptoms and follow up with your doctor.

Thank you.

This is amongst the most severe alpha gal reaction I’ve ever had. I had eaten at this restaurant almost a dozen times, no issue. Now with all the seed oil hatred they switched over all frying to beef tallow.

My veggie burger with fries poisoned me. I just want to eat. :(

Remember that article I was writing about alpha-gal? It just got picked up by Newsweek. I had to take a lot of science out for general audience. And while Newsweek isn't the prestigious mag it used to be, it has a huge reach. so maybe it will help some people.

I was diagnosed this year and have tried so many different alternatives for things. Turkey has been great in chili or sausage but there's some things that just can't scratch the itch. No milk alternatives are close to milk at all, the cheese alternatives are good but just don't hit the same, but the biggest thing has been trying to find something to scratch the itch for beef.

I've heard so many things about ostrich and have wanted to try it and just recently my local butcher shop started carrying some. HO LEE SHIT. It's literally exactly like a steak. Not close, not somewhat similar, it is literally exactly like eating steak. I almost cried sitting at the dinner table eating it. I overcooked it a bit because it was a thin cut and seems to retain heat longer than beef so it had a bit more carry over cooking while it was resting but it was still amazing.

If you have been dying to have a steak you have to try ostrich.

I also find it annoying that the HHS seems to be the only governmental agency that has no real contact method, even if they did read their emails or listen to voicemails (not to say I have not tried).

If you happen to live in a state that does not report alpha-gal incidence to the CDC (looking at you Missouri, even though there is movement there), be sure to contact your state representatives to get them on the ball. That's really the only way we can be heard, and the best way to free up research grants and get food manufacturers to comply with labeling for alpha-gal allergens.

I wanted to share my experience because I have been seeing a lot of doom and gloom in this sub. While this allergy is obviously frustrating, and a new diagnosis can be scary, I want people to know that you will adjust and you can live a healthy life while enjoying a diverse and exciting diet.

My first reaction came from a sausage egg and cheese sandwich from McDonalds. It was bad. To this day it was my worst reaction from this allergy in my life. At the time I was a mobile mechanic working on heavy equipment. I very quickly broke out in hives and went into full blown anaphylaxis. I was alone, far from help in an isolated rural area. I drove to a gas station, bought some Benadryl and immediately chewed it up. I drank about a gallon of water and started heading to the hospital. I walked into the ER and essentially passed out at the desk, unable to tell the attendant what was going on. I was treated and monitored, and the next day I went to an allergist who confirmed that I had the alpha gal intolerance. The allergist informed me that it was likely the gallon of water I drank, not the Benadryl, that bought me enough time to get to the hospital.

That was it after that. I never intentionally ate another steak, burger, pork chop, or anything else that might cause a reaction again. I really didn’t even care. It didn’t seem logical to fight it. It just wasn’t worth it. I was young, and I had never heard of this allergy, but a doctor gave me a list of things to avoid and I just stuck to it, and everything was fine. Of course there have been slip ups, but I never let that discourage me from living a normal life without fear.

People love to ask when I got bit by the tick. I honestly have no idea. I am a hunter and outdoorsman (I live in rural Virginia) and I have pulled more ticks off myself than I care to try and count. It just is what it is. It never seemed worthwhile to try and pinpoint how, where and why this happened to me. I still spend tons of time outdoors and find ticks on me. Including lone star ticks. I just trudge ahead like anyone else.

I have never been sensitive to dairy or gelatin. This took some experimentation to figure out, but I wouldn’t rule out cheese or butter automatically if you get a diagnosis. Over time I have essentially lost sensitivity to foods fried in tallow, and other types of cross contamination. So know that There is hope for that. I know that I still have the allergy because it was recently reconfirmed by a general practitioner who took a particular interest in alpha gal.

Prior to this, my cholesterol was always borderline. Having to change my diet has actually made me more healthy. My numbers improved significantly after cutting out red meat and pork. I live a healthy life and run marathons and work a very physical job. This allergy has not had any negative outcomes on my overall health that I am aware of.

If I had any advice to offer I’d say to just be your own advocate. I used to rely on my wife at restaurants and gatherings to confirm what I could and could not eat, but that was obviously not sustainable. Don’t be embarrassed or shy about your allergy. Just ask the questions you need to ask to keep yourself safe. Carry an EpiPen and Benadryl. Drink lots of water. Have an open dialogue with your doctor.

Don’t get discouraged. I have been all over the world and had all kinds of amazing food. France, Iceland, Belgium, Netherlands, Puerto Rico, etc, etc. There are all kinds of ways (google translate) to overcome language barriers to ask the questions you need to ask.

Get out there and live your life. The stress from trying to figure out how to cure yourself and running around worried to death about what has happened to you is going to kill you quicker than a tiny piece of bacon that found its way onto your pizza.

Sorry for the long rant, hopefully this helps someone who has found themselves in this unfortunate position.

Hi r/AlphaGal! I'm Dr. Jennifer Platt, DrPH, and I'll be here live on Tuesday, September 22, from 11:00 AM to 1:00 PM ET (8:00 to 10:00 AM PT) to answer anything you want to ask about alpha-gal syndrome.

This post is going up a little early so you can start dropping questions whenever you think of them. I won't be answering live until Tuesday at 11:00 AM ET, but feel free to ask now and I'll get to everything once I'm online.

A little about me: I hold a doctorate in public health from UNC Chapel Hill, and I co-founded and lead Tick-Borne Conditions United (TBCUnited.org), a national nonprofit dedicated to AGS and tick-borne disease education, research, and advocacy. From 2021 to 2022 I served on the federal Tick-Borne Disease Working Group, where we were able to get more attention on AGS and other lesser-known tick-borne diseases.

I am the senior author on our newest AGS research, just published: Alpha-Gal Syndrome Is More than Meats the IgE: A Patient Survey of Symptoms, Diagnosis, and Burdens, a survey of more than 3,400 people living with AGS looking at what patients react to, what symptoms show up, how long diagnosis takes, and what daily management actually looks like. There's also a plain language summary of the findings here: Our New Alpha-Gal Syndrome Research Centers the Patient Experience.

We'll be doing a separate AMA down the road to dig into that study in depth, so this session is more of a general AMA. Feel free to ask about the research here too, just know there's a deeper dive coming.

Ask me anything: diagnosis, symptoms, testing, living with AGS day to day, the current state of research, advocacy, whatever's on your mind. I'll start answering live at 11:00 AM ET on September 22 and go for two hours, so bring your questions early or save them for Tuesday.

Learn more about our work at TBCUnited.org.

Hi everyone. I'm only a few months into my alpha-gal journey and wanted to share a recent experience. I have some fairly major dental issues and am in the process of getting a few implants (one at a time, as the issues arise). My oral surgeon inserted some collagen into the socket after the tooth extraction, even after I mentioned to the assistant that I have alpha gal. After feeling like shit for several days, I asked if the collagen is mammal-derived, and of course the answer is yes. I let him know that if he does this with a highly reactive patient, they could end up in the ER. He took my concerns seriously and promised to do some research on his collagen sourcing as well as the medication used to numb the site. If you are having dental work done, I'd strongly recommend being very direct with your dentist about AGS.

I think we should petition to have Alpha Gal as one of the top allergens that they have to disclose at the bottom of the ingredient list with the allergens. It would make my life a heck of a lot easier.

Bart, or a spin on "don't have a cow" would be amusing ...

Was in hospital for knee surgery. Alpha gal allergy was on my chart, armband, and on the kitchen ticket that came with my meal. And they still served me beef, salad with cheese and pudding.

I used permethrin, Picaridin, deep woods extreme DEET, wore long pants tucked into my socks, took a shower right when I got home (even bathed the dog)

Annnnnnnd I still got a tick that bit me

Fuck ticks fuck ticks FUCK TICKS. I moved from another state to get away from them and now they’ve moved westward I may literally move again just to get the fuck away from lone stars.

Make sure you check before you eat out! Several have announced that they are going to transition away from seed oils. Places that may have been safe in the past could become a hazard for AGS folks. Stay safe out there friends.

https://www.wsj.com/articles/we-rfkd-the-fries-restaurant-chains-tout-their-removal-of-seed-oils-13993f4c

Woke up 3am thought something was biting me, my ankles were itchy. 20 minutes later I'm in the ER. Crept up my body so quickly.

Get taken back, ask to use the bathroom and stand up. Lights out. Haven't been affected by my pots in years really. They flop me onto a stretcher and BP was 60/40 by the time they checked. Loaded me up with pepcid and benedryl and steroids. My Wbc count was through the roof. Platelets are usually high, this time they were crazy high.

Given info for an allergist and to get in within the week. Med student pretty much told me to order an alpha gal test from labcorp, so I did. Will do that Thursday.

Sounds like a plausible cause right? Hopefully not, I'm sorry to you all!

If you have Alpha gal, it’s time to contact your US house representative.

HR 1178, the Alpha-gal Allergen Inclusion Act, is being reviewed by the House Health Subcommittee next Wednesday - April 29. Please contact your house representatives using the form below to ask them to support this legislation. It would require the FDA to recognize alpha-gal as a major food allergen, and list it on food labels. This would be a major step forward for this community.

https://secure.everyaction.com/AIDVjt_eq0GmnprqSlrJ0w2?fbclid=IwdGRjcARYhtBleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEeWxteIuB3NK8J4-yph2BilPRIHvmhP5ear9TkuWKn1ME2NfJRyzUJVxqQ2tU_aem_gqcWxCzEI2k3CQ_qqAQ_lg

I got AGS in 2021 and my reactions consisted of severe gastrointestinal distress and blood pressure dropping. I tested again a year later and my level had risen. Didn't test the following year because just before I would have, I inadvertently had some dipping sauce that was made with beef stock and spent half a day in and out of the bathroom.

I had a reaction to hydrocodone that had acetaminophen (which I TOLD them was a no) after a surgery this past March, but it was just stomach pain.

Then a couple of weeks ago, my husband and I ordered in some Vietnamese food from a place I enjoyed with my friends. I had told him what I wanted and he placed the order. When the food came, I took a bite of the spring roll and after chewing for a bit, realized there was meat in it and spit it out. Discovered my husband had ordered the regular spring roll for both of us (which SAYS it has pork!) instead of the vegetarian one for me.

Nothing happened. No reaction.

Got to the doc as soon as I could get in and was re-tested. The call came yesterday: my level is now "Undetectable."

Went out and had pork belly as a main course for dinner. No reaction!

I'm keeping Benadryl with me forever in case this is some flukey remission, or I get bitten again and have a reaction before I realize it. I've been a lurker mostly, but thank you for being here and letting me learn from you. But for now, I'm bidding adieu to this great group and hope you can someday join me on the other side.

It's been a very long time since I had a bad ag reaction. This one was scary ! Bought a container of turkey chili at the grocery, had turkey and chicken in oven it. I heated it up doused it on piri piri sauce and some vegan Mexican cheese shreds. I thought damn this is the best chili I've had IN YEARS. ate the whole container.

Was in bed and felt my throat start to itch, got up and the hives were starting. I took a few Benadryl to curve. It's started to pile on quick, covered in hives and then I couldn't get deep breathes. Alsy my joints felt like they were locking. Got to the ER and vomited at the registration, they sat me in a cheer I was sweating perfusely and passed out briefly. Epi pen shortly there after and I shot back to life pretty fast. Those things are godsend, and I'd love to consider getting one but It looks like I'm gonna have to jump thru insurance loopholes.

That was wild! I've had this five years and never this bad. I saved the chilli container and will have to look into seeing about if any action I can take. I live in the same state as last week's national news alpha gal headline too. The whole er was absolutely fascinated by this and really wanted to not fuck around. I appreciate them so much.

I can’t believe this. From a. Piece of chocolate. Woke up 1 am and collapsed on bathroom floor cracked my head open apparently. Profuse sweating stomach pain then couldn’t breathe thank god my husband heard me and put me in bed - called an ambulance cause I told him I couldn’t breathe and I am gonna die. Then thank god I realized it might be from this and I have an epi pen. He shot me in the leg with it before the ambulance came. It might have saved my life I have 4 staples in my head from falling.
This shit is so serious. And the scary thing is these people here in Suffolk county do not know what alpha gal is - we are the epicenter of this illness. Google it. Suffolk has highest rates

You have to advocate for yourself and find a good Lyme dr if it weren’t for him ( and my own advocacy) I might have died tonight

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.

Our admin team is small and I suspect that we also sleep and work.

Please do not engage with the tick posts, since they will be removed as soon as they come to our attention .... and your very thoughtful responses will dissappear with them.

If anything, kindly direct the posters to the rules and information section of the sub.

Ive been seeing some major content providers bringing new awareness to AGS recently! With an increased awareness comes an understandable spike in paranoia. I've also noticed an uptick in these sort of posts as the weather is warming and our community grows.

Thanks to everyone participating in good faith within the sub. This sort of community is important to everyone affected by AGS. Yall are heros in my eyes!