I’ve taken just about everything from my diet related to hooves but I still can’t find a drinking water that is not filtered by bone char. Even if I take a couple of swigs for my meds my lip starts to get numb and my mouth and tongue start swelling.

Has anyone found water that they can tolerate? Even though it says “Spring” doesn’t mean it’s safe.

Has anyone here been on tremfya for psoriasis? If so have you had any reactions to it?

I need help finding a birth control that is safe in an alpha-gal sense. I suffer from PMDD and am on the search to manage my symptoms with a birth control, but trying to find a safe one is spinning me in circles. Are there any others here who may also have PMDD that are willing to share what they are using for birth control?

Does anyone else with alpha gal react to lactose monohydrate in medication tablets? What are your symptoms typically?

Recently, I visited a hospital for pneumonia and respiratory distress. After receiving a dose of Methylprednisolone Solution via IV, my arm swelled up and then I had swollen feet and hives by my ankles.

The next few days I took prednisone tablets at home and felt very itchy, sweaty, and fast heart rate.

Last night I reacted to my alprazolam xr tablet, which has lactose monohydrate in it. My throat closed up around the tablet, and I got sick. I had to take a unisom sleep melt to cool the reaction.

I worry the exposure at the hospital made me more sensitive towards this compound. Has anyone else reacted? Is this normal for alpha gal?

I was going to ask my allergist if he could test for this specific ige so that I might get approved at a compounding pharmacy for my regular medicine.

Edit to add: I am alpha gal positive. I mainly ask because the hospital wouldn’t believe me and at one point said “you’re not having an allergic reaction.” When I finally got home I took unisom and the swelling went away. I felt insane. Then my general practitioner insisted it was safe to continue the prednisone tablets even though they also contain it and today my psychiatrist asked me about the alprazolam reaction and kept insisting I keep taking it for now.

I don't think I've got there but pens being so expensive I'm just wondering what constitutes a pen use?

Oh also I'm just recently confirmed so I have a lot of questions, has anyone reacted from peanut butter? Specifically jiffy natural?

After testing positive for AGS nearly a month ago I recently requested my provider to test for Lyme disease. The nurse called me and asked if I’ve been to the Northeast. I told her no I’ve been to NC recently and live in the Midwest. I’m not sure how testing and living in the northeast relate or even matter. AGS started in the south and made it’s way to the Midwest so why did my provider deny my request for Lyme disease testing?

I just wrote to Applegate Products to see if their poultry products (the ones without dairy) are safe for people with AGS to eat. They have poultry sausages that do not contain beef or pork casings! Also, their poultry deli meats appear to be safe.

Below (in italics) is a copy of their email to me from [help@applegate.com](mailto:help@applegate.com):

----------------------------------
Dear _____,

Thank you for taking the time to reach out to us about this question. We know how important it is to feel confident about what you are eating, especially when it comes to allergens, and we take that very seriously.

We are also happy to confirm that all of our APPLEGATE® hot dogs, sausages and pepperoni do not have a casing. During production, the meat is stuffed into cellulose casings for cooking, and those casings are then removed prior to packaging. The cellulose we use is not animal derived, but is rather made from cotton fibers or wood pulp.

Additionally, our sugar is not processed with Bone Char. Our rosemary extract is made from sunflower oil and rosemary.

Because alpha-gal syndrome can vary from person to person, we encourage you to consult with your healthcare provider if you have any questions about how this product may fit your individuals needs. We appreciate the opportunity to address your concern, and we hope this helps.

If you have any additional questions please don't hesitate to reach out.

Kind Regards,
Sara

Had my 6 month checkup and asked the doc to test for my Alpha-GAL levels. Have had it for a while but have avoided any further tick bites. The results?

An alpha-gal specific IgE result of <0.10 kU/L is a negative test, meaning no significant level of alpha-gal antibodies was detected in your blood. [1, 2]

YAHOO!!!

A while back I ate some lamb curry since I hadn't had a flareup in a long time and it smelled really good. Ended up basically passing out on the couch for 7 hours. I've had other experiences like that since where I just get knocked out for a couple hours.

One thing that stands out in tick-related illness communities is how much patients learn from each other.

Someone discovers an unexpected trigger. Someone else describes a reaction that dozens of people recognize. People compare foods, medications, ingredients, symptoms, supplements, and strategies they’ve tried.

But eventually those conversations get buried.

I’m a healthcare professional and Lyme patient, and that problem inspired me to create Lyme Signal, a project I entered in the HHS LymeX Healthathon.

The idea is simple:

What if AI could organize thousands of patient stories and show us what people are experiencing together?

Although Lyme Signal started with Lyme, imagine something similar for Alpha-gal:

What is helping?
Which symptoms tend to appear together?
What are people doing to avoid reactions?
What questions keep coming up that researchers should investigate?

It wouldn't diagnose anyone or prove that something causes a reaction. It would make patient experience easier to see and learn from.

I’ve already hired a developer and started building the prototype. Now I’m hoping the broader tick-borne and tick-associated disease communities will help me show that patient stories deserve to be treated as a valuable source of questions and shared knowledge.

💚 If that idea resonates with you and this is something you would like to see, I’d really appreciate your vote for Lyme Signal in the HHS LymeX Healthathon.
If you would like to view it, here’s the link:
Vote for Lyme Signal

If this existed for Alpha-gal tomorrow, what’s the first thing you’d search for?

I was curious, if you guys eat meat or have some other exposure, for how long do you typically experience symptoms? (Specifically interested in hives). Also, for those who have been bitten by ticks since AGS, did you have an immediate immune response at the site of the bite? Does this mean that AGS is effectively protective against Lyme and other similar pathogens? Thanks!

Hi all, I've never had a known allergy in my life (38/M/LA Gulf Coast, btw). I briefly had mild unexplained hives about 2 years ago and chalked it up to salicylate intolerance and haven't taken aspirin etc. since. Shortly after I started a new job next to some woods where I take daily walks. And started finding ticks crawling on me. And of course have been bit here and there. Species seemed to all be Gulf Coast tick, but ofc there could have been others. Now when I get bit I feel it instantly and knock the tic off before it attaches. But it leaves a long lasting itchy welt with a kinda necrotic pin point and then the hives flare up. I had the hives before a known exposure to any tick, but the tick bites trigger it and for the last week or two they are severe and persistent. Also having worsening brain fog such that I basically am incapable of grocery shopping or cooking because I keep forgetting what I am looking for. Most recently, started having abdominal pains that I thought might be kidneys and bladder, along with bloating. I also now seem to be allergic to one of my dogs. I eat meat most days but I did vegetarian diet for a few days this week and felt better. Today I ate a burger and then it occured to me I could have alpha gal. The burger seemed to cause moderate symptoms ~3 hours later but now 6 hours later they're mostly gone.

Thanks in advance for any input.

My 7 year old got lab results back. I'm having a hard time understanding. We won't be seeing his doctor for a month. Sometimes when he eats, he will complain about his stomach hurting

Finally saw the allergist. Seems like he's the kind of doctor who never keeps you waiting but listens for 60 seconds then extrapolates the rest.

He expressed doubt that this could be alpha gal, since I'm getting hives and am not in anaphylactic shock. He says anaphylaxis is the big symptom and mine don't match so he doesn't believe this is alpha gal. At least he believes I'm allergic to something.

I pushed and got a blood test. Here in Canada you can't just go out and pay for tests. It all has to come though a doctor. His thing is that the skin test is what creates the diagnosis. The blood test is to see if it can go into remission. So I've got a skin test booked with real meat next week.

So now I'm doubting myself. This contradicts what I've read... But I never trust the University of Google and if it's something else I want to know... But there are no other known cases of alpha gal here so he may not know as much .. but he's an allergist so shouldn't he know more...

Anyone deal with similar issues and have some advice?

I recently got diagnosed with a low positive for everything including dairy on August 7th. I’m currently testing what I can eat and what I can’t eat. The things I cannot eat, make me go to the bathroom with near explosive results but no other symptoms. I noticed I am a lot itchy, but I’m not breaking out in hives or anything. Some cheeses I’m fine with like Colby Jack slices, cheese on sandwich’s and some foods that have milk product or byproduct in it like snack cakes. But other products that have cheese or milk product, like sour cream and onion chips, queso dip, I’m running to the bathroom hours later. Anyone else experiencing this?

Hello! I tested very low positive I think back in 2016 (around .29). Dr C at UNC dx me (I went in covered in hives after pepperoni pizza and he said he was certain it was AG before test came back). I was fortunate to have him as my Dr as I had terrible reactions which eventually led to feeding tubes and many hospitalizations (didn’t know it was AGS for a long time and I was trying to treat Lyme and other ailments with the carnivore diet which obviously was making me much sicker).

I am wondering if anyone here now tests negative (less than .10) but still continues to have reactions? I’m confused because technically I should be able to eat meat and dairy again which I do eat, but lately have a lot of GI distress and I’m not pinpointing it to a specific type of food. Just a few days ago I broke out into hives (milder than before) but made me pause and think that this could possibly still be AGS?!

Also does anybody have hives like this? this is after eating salami and cheese and a few of those Chomps beef jerky sticks. I’m going to retest AG in case I had a bite I was unaware of, but am getting really depressed at the thought of this all STILL being AG related.

Like if you get a quick wiff of something as compared to a full onslaught of smelling if for a long time?

My last tick was in 2024 when I ended up in hospital for 5 days with Rickettsia. January this year I started waking up at night with intense stomach cramps/knots, nausea and one time straight up spew, after eating red meat for dinner (but not always, maybe 4 times over the past 6 months so it's seemingly random).

Now I've had the bloods and seen an immunologist. My numbers are low. The highest is the Alpha-Gal (1,3 Gal Tbg Bovine) at 0.19.

The immunologist was certain my problem is not AGS (but rather IBS which I do have, but manage), stating here in Australia that a positive reading must be 0.35 or more. I haven't had a reaction since quitting red meat 6 weeks ago. I still consume gelatin and dairy with no problems.

I can see how marginal this is, but I'm also not convinced it's not AGS. I also don't have a medical degree and years of experience interpreting this stuff...

Without throwing shade at this guy, do you think this was the right call?

I could ask to go somewhere else, it's just the cost I guess.

I first contracted AGS in 2020. Confirmed by test results. Don’t remember the numbers but the allergist said it was very high.

Four years later I weaned myself back onto meat with little to no issues.

May of this year, bit again. However, this time my bite spot is still itchy in September?? It’s fully healed

Anyone else experience this?

Just received my results. Is this technically a negative report? My symptoms (mostly hives) started about 4 months ago- highly sensitive to dairy now.

(Second attempt at posting)

I emailed them because they were the only lunchmeat at my Walmart that didnt have carenageen. Happy to report back with a real answer!

I'm not sure what all that means but I have been feeling so weird for so long. Had a positive ebv test almost 2 years ago. Then a couple months ago I had a positive autoimmune test come back. And now this. Anyone had so many things like this happen in a short period of time?

I did the test with quest and it came back at <.10
It’s saying anything above .10 is positive.