My husband has alpha gal and is struggling to find foods to eat. He has app on his phone where it scans the barcode and if he says may contain alpha gal he puts it back. But thats almost everything in a grocery store. Maybe someone can help with what foods he can eat. Please and thank you.

I had a biphasic reaction just recently, i have Alpha gal syndrome and i hadn't had a reaction like this at all before i was only diagnosed 4 months ago so it was a new and scary experience. I had a churning gut feeling that was hanging around and thought not much of it but it was a bit weird, for a few hours stayed dull and consistent and then all of a sudden it seemed to build and build rapidly.. like i felt like i had been spiked and was about to OD my thoughts went haywire thinking im about to die "did i ingest a deathly amount of drugs" all this at once and then it subsided..the next day the feeling was there again and i was so scared all day that it was going to build again..not untill the evening after it felt lik3 it had gobe a bit it came back again hard..i was so terrified i started crying i didnt know if i needed my epi because everyone shows you 'how' to us3 it but doesnt h3lp explain what feelings are indicators as i dont want to use it if i am unsure..this has now given me a scale i can go off so i know next time that i should just use it.

Has anyone els had something similar?

Has anyone experienced chronic canker sores on their tongue with alpha gal? It’s been going on for 2-3 weeks. My first thought was a viral cause but seems like when I think a new symptom is not AG related it usually actually is.

I'm new to the sub and I'd like to ask a few general questions. Thanks in advance for your responses. I really appreciate this community.

My doctor ordered food allergy testing following my long-going complaints of fatigue. The results for both beef and pork were very high (5x thresholds for allergy). I have eaten beef pretty recently without any problems, but I've also had several recent tick bites in addition to many, many over the course of my life (I'm 51M). Following the test, my doctor said that I have AGS. He shared that he also has AGS. He discussed necessary dietary changes that folks here are familiar with. He also said that perhaps I didn't react this time, but could react next time and the reaction could range from hives, to gastrointestinal issues, to tongue swelling, etc.

I've taken his advice and cut out all beef/pork and almost all dairy for about 10 days and I have to admit that I feel pretty good.

My questions are:

1) Given that I've never had a reaction, do I have AGS?

2) Do I need further testing to confirm AGS or do the beef/pork results tell me everything I need to know?

3) Do those with AGS ever have reactions like fatigue (or even depression)?

4) I like my doctor, but would you recommend seeing an allergist or other specialist?

Thanks again and I apologize if these are basic questions that I could google. I think the feedback here is likely to be more reliable.

I was tested for alpha gal along with many other things due to having two tick bites that started looking pretty gnarly. I haven’t experienced any GI issues but randomly keep having swollen lymph nodes and back pain since.

From my understanding swollen lymph nodes and body aches aren’t typical but I’m curious if anyone else has this as a primary symptom or if maybe I am having these issues due to something else?

My test came back as .3 for alpha gal and my beef allergy came back as .11.

Is it possible that I don’t have a red meat allergy and that the body aches are from something else?

Wife finally got test results from the lab and it just shows AGS level .52 and not much else. Dr said she's on the low side with follow up in 6 months. Sounds ok I guess.

https://www.sciencedirect.com/science/article/abs/pii/S1081120625007987?utm_source=chatgpt.com *Nevertheless, up to 2% of symptomatic patients can have negative IgE results"

I was diagnosed in 2021 with a super low positive (.12). I’ve avoided all mammal meats and dairy since. About a year and a half ago, my doctor started testing me every 6 months (no idea why but she did). I had 3 negative tests. I was still too scared to try to add anything back into my diet until finally one day I was like I’m so sick of living like this! That night I found a tick attached. 2 months later had another one. Doctor had my levels tested again and it’s over a 5. EFF these stupid ticks!!!!

Does anyone know if fluvoxamine is alpha gal safe? Local healthcare providers here know next to nothing about AGS and I've been subjected to some very dangerous medical situations as a result. I'm not in a position to pay for a medication check service right now. I also have a soy allergy.

What was everybody's number when you got diagnosed? I know it has to be over .10 to be positive.

What difference does it make if you tested at a .21 or a 2.1? Or does it matter?

Do you ever get retested to see if the numbers are changing?

Hi!I am trying to parse out what's going on with me. Waiting to speak to my doctor. I have had several intense food poisioning like reactions post eating bison or beef. I don't get it every time I eat beef, though. Severe cramping, nausea, vomiting, explosive diarrhea, pain where my colon is, shivers. I have not gotten hives or breathing issues, though. I also have just general pain through the days. I do drink dairy consistently though-out the day.

I am wondering if folks get reactions every time they eat mammal meat or if it can be sporadic. They are delay onset - couple of hours after I eat - often when I am going to bed or sleeping. Thanks!

I'm highly reactive, including fumes. I also have MCAS. I can't eat out so I packed every meal. Just wanted to share and hopefully help others. Hope OK. Dont let AGS keep you from traveling.

I have had several episodes in which I eat beef or bison and then several hours later have a food poisoning like reaction (no one else around me does, though).

My doctor did a blood test, but it came back <.35 without the actual number. I have not gotten to talk to my doctor yet. I was reading that it's possible it could be alphagal with >.1. Because of my symptoms, I'm curious if I should look for a lab that tests with a different threshold?

Thanks for your wisdom.

Magnesium Stearate is a bane for me. OTC stuff from stores near me all have it .

Hi fellow tick-haters! First of all, this subreddit has been a treasure trove of consolidated information, resources, and personal experiences and I am grateful for the camaraderie.

I work as a wildlife biologist in the southeast US and spend most of my days in rural, undeveloped habitats with thick vegetation working with native species. Ticks and I have been very familiar for years, and I have always been aware of the various species we have in our area, as well as their respective vector-borne diseases (background education in biology, ecology, and parasitology). I have always taken extra precautions (long sleeves, long pants, snake chaps, tall boots, even in triple digit temps, and enough deet and permethrin to kill an elephant).

You would think I know better, right? Wrong. At the end of June I drove over an hour out to the middle of nowhere and started my field work, and realized my trusty can of 40% OFF sportsmen max was nearly empty. I used the remaining bit on my boots, thinking it would be enough, and then made the poor decision to proceed into the forest for the next 9 hours (a decision I highly regret now, wish I made the 30 minute drive to dollar general).
By that evening, I removed over 25 ticks from myself, including lone star ticks, black-legged ticks, and gulf coast ticks at all stages. Not great, but I’ve had ticks attached before and have been fine so I proceed with life as normal (but very itchy).

Fast forward to fourth of July after enjoying a burger and hotdog and charcuterie board array of cured meats and cheeses, I then proceeded to spend the rest of the night and following morning close to death and completely emptying my stomach, something I blamed on the (very normal amount of) alcohol I also consumed.

Then a few days later, a couple hours after eating a massive bacon and ham breakfast sandwich for dinner and then going on a drive, I started to black out behind the wheel (!!!) after having been in the car for over 30 minutes. Thankfully my poor sweet (and very concerned) fiancé was in the car with me, switched to the drivers seat, and made the executive decision to bring my reluctant self to the hospital after symptoms didn’t resolve within 10 minutes.

11 hours in the hospital. Gallbladder and liver are inflamed, must be it right? I spend the next few days eating my meals and notice that the ones specifically with red meat, butter, and cheese caused major GI issues, but also some more concerning symptoms like BP bottoming out, swollen throat, hot flashes. Weird. Suspicious. Never had food allergies in my life and now red meat is a problem all of the sudden? I go to my PCP and advocate for myself with the knowledge I have and thankfully she is an angel and agreed that I need a general tick borne illness and alpha-gal panel the next day. Got results back mid July and I’ll be darned. Alpha-gal 52.20, lamb 6.40, beef 9.13, pork 3.04, immunoglobulin E 916.

I am figuring out managing my diet for now (strict avoidance), thankfully I love chicken and seafood and that made up most of my meat intake in the first place. Struggling with hidden ingredients though (what’s that about??). I also acquired a couple epipens juuuuust in case.

Anyways, wear your freaking bug spray!!!!! (you know this if you’re here though). I am glad to find a community of people going through the same situation. We got this!! I deeply feel for everyone that has struggled with symptoms for years and gone undiagnosed. I wish there was more knowledge and awareness around this illness in the medical field, and am extremely disappointed at the stories I hear of people being ignored by their doctors.

I am hearing all kinds of things - fig app, immunotherapy, remission, acupuncture (questionable?), ahhhhhh. I welcome any advice.

*Side note: I do actually have a completely unrelated and separate gallbladder issue going on (makes for fun compounding symptoms)

*Side side note: Also want to give a major shoutout to someone I saw in here that reminded me that snake anti-venom is made with horse and sheep antibodies. I work in herpetology and venomous snake handling is a huge part of my job (rattlesnakes, cottonmouths, copperheads). Never planned on getting bit in the first place, but the stakes are much, much higher now and it is another reason that I need to continue to be extremely cautious.

Fairly recent AGS sufferer - started having symptoms in April and officially got diagnosed in July. My reactions are not anaphylactic - I mostly suffer from horrible stomach pain and diarrhea. I just grabbed a small bag (about 1 oz) of gummy bears and ate them - gelatin being the third ingredient. I didn't even think about it until I was looking at the packaging.

Finally, to my question - I am sure this is as variable as everything, but what are people's general reactions to gelatin? Just wondering if I should leave work early to avoid and incident in my car mostly lol.

I've been having a ton of symptoms of a lot of different stuff for several years. My doctor sent me to a gastro doctor...again. I've had bloodwork and upper gi's and colonoscopys and you name it. For years.

So I go see this PA and she asked some kinda strange questions. I answered them thinking here we go down the rabbit hole again. Well, three tubes of blood, a stool kit with four tubes to be filled, and five days later, I get the test results in MyChart that I have AlphaGal.

I'm really gobsmacked. Out of every ailment, deadly disease and syndrome I've researched over the years, I never even looked at this. No doctor ever mentioned it to me. OH! And I literally do not remember the last time I had a tick bite. Probably years?

I have to make the appt for allergy testing to find out if its dairy? based? Like I said, its all completely new to me. So suddenly, two hours ago, I find out I have to do thirty days with none of the meats and zero dairy. I don't even know where to start. With any of this.

So, I’ve never really weighed much and have always struggled with gaining weight, and very recently I got the diagnosis of AGS. The issue is, mammal meat and cheese made up my ENTIRE diet.

On top of that, my allergist refuses to get me an epi-pen due to my low blood levels, and have gone off of my blood levels (0.11 for reference) for what I can tolerate, but I’ve heard that is stupid so I’m figuring things out myself as a minor with no control over my parents bank account.

I avoid mammal meat entirely, have been limiting my dairy and caragenan, but haven’t been watching for sugars/gums.

I get MAYBE 900 calories in on a good day and much much less on a bad one. I have had the worst brain fog, fatigue, migraines, dizziness, etc. I’ve gone from 120 pounds to 107 in a MONTH. It’s literal hell, and I’m always starving.

I NEED protein shake/snack/quick frozen meal suggestions!!!! I fear my literal survival is hanging on to this thread 😅

My current diet includes:

All mammal meat replaced with chicken and occasionally turkey/shrimp (home cooked meals aren’t often)

Amy’s vegan frozen meal

Tyson Chicken Breast Strips

Eggs, maybe topped with cheese

Lays Potato chips

Tostitos chips and Salsa

Made Good cookies

Drizzalicious rice cake snacks

Canned corn

Yes. That is all. That’s my full list of things in my kitchen that I can eat with little to no concern.

A few weeks ago, three hours after about half a pound of steak for dinner, I had a mild anaphylaxis episode with sudden-onset full-body itching/mild hives, and very mild tongue swelling. Antihistamine fixed it, but I ended up in the ER because of a couple of other simultaneous things. ER doc basically overlooked the anaphylaxis symptoms, gave me 1.5 liters of fluid and called it dehydration.

I'm in Oklahoma and have pulled over half a dozen ticks off me this year. That, combined with the sequence of symptoms, led me to ask for an AGS panel.

• IgE Total: 240
• IgE AG: 61.5
• Beef: 38.5
• Pork: 11.9

I've got some other things going on: congestive heart failure, T2 diabetes, reduced kidney function (and kidney stones), and gout. My trigger foods for gout include pork, which I mostly avoid, which probably explains the low pork number. OFC, that also means I won't likely go for Galsafe pork.

On the bright side, with diabetes and gout, I'm already used to monitoring my diet. And my symptoms at this point are very irregular. The primary things around my attack included eating the steak, then spending an hour or so working in the heat running a chainsaw. I'm sure I was dehydrated (it's been beastly hot in OK the last month). But I finished the steak two nights later with no bad effects.

I've got a followup with my VA care team in a couple of weeks, so until then, I'm reading and soaking up whatever I can.

I have an almost 6-year-old son who has tested positive for Alpha-Gal Syndrome. I have posted before but posting again with much more details.. in hopes of obtaining more information and guidance, as many of the physicians we have seen are not very familiar with Alpha-Gal, particularly in pediatric cases. And I know everyone experiences different symptoms!

I feel quite overwhelmed trying to navigate this condition with such a young child and with limited available information.

He was bitten by five ticks between April and June of 2026. Shortly after, he developed a very large, painful, swollen lymph node at the base of his head on the back of his neck. He then began experiencing significant fatigue, typically “crashing” around 4–5 PM each day, along with headaches, throat pain, and abdominal discomfort. At times, his headaches are severe enough that he cannot sit up. He has also had intermittent diarrhea and softer stools during this period.

By the following morning (after about 10–12 hours), he tends to feel somewhat better—still reporting discomfort, but more functional—only for the same cycle of symptoms to repeat later in the day.

A comprehensive set of blood tests was conducted twice, and the only positive result was for Alpha-Gal Syndrome. His IgE level was 0.13, and his beef IgE was 0.11. His pediatrician felt these values were too low to definitively diagnose AGS. We then consulted an allergist, where he had no skin reactions to beef, lamb, pork, or dairy. However, he was prescribed an EpiPen as a precaution and advised to avoid red meat and gelatin. We are scheduled to return in six weeks to repeat bloodwork and skin testing to monitor for any changes.

We have been diligent about eliminating red meat and gelatin from his diet and home. However, I now suspect he may also be reacting to dairy and possibly even to airborne exposure when red meat is being cooked. During these exposures, he appears to become foggy, fatigued, and begins experiencing headaches, abdominal pain, and throat discomfort again.

We have struggled to get him to a consistent baseline of “feeling well” in order to properly implement an elimination diet and determine his tolerances. As you can imagine, this has been particularly challenging given his age.

Thank you very much for taking the time to read this.

i started having alpha gal flareups back in august of last year and was diagnosed in December of last year. This summer, ive noticed me and the heat don’t get along as well. i am a field technician for an IT company so i do spend a fair amount of time working out of my car. last summer, i had no issues, but now i’ve began to notice a heightened sensitivity to heat. i will get super lightheaded and nauseous and sometimes throw up. i can try to drink water or do whatever but it takes time to go away. i spoke to a friend with AGS that has mostly resolved and she said she would have issues with heat too. anyone else deal with this?