When it comes to alpha-gal syndrome, misinformation is as persistent as the ticks that cause it. From outdated assumptions and internet rumors to wildly incorrect AI overviews, the myths about alpha-gal syndrome can make an already confusing diagnosis even harder to navigate.
The information provided on this site is based on my personal experience living with alpha-gal syndrome. I consistently cite and link to expert sources, but nothing published on this site should be perceived as medical advice.
Alpha-gal sensitivities vary by person. You should understand your dietary restrictions, making any adjustments needed, and directing any questions to your physician.
When I was first diagnosed with alpha-gal syndrome (AGS), I had no idea how much misinformation was floating around about this relatively unknown, tick-triggered food allergy. From confused doctors to online chatter, I’ve heard it all — and chances are, you have too.
To help separate fact from fiction, I sat down with Sharon Pitcairn Forsyth, whom I affectionately call the fairy godmother of alpha gals. As the founder of Alpha-gal Alliance and co-founder of the Alpha-gal Alliance Action Fund, Sharon is a powerhouse in the AGS community. Not only is she personally navigating life with alpha-gal syndrome, but she’s also poured her time, brainpower, and heart into helping others do the same.
When she was diagnosed with AGS in 2019, she ran into the same dead ends many of us do — local allergists who didn’t have answers and a lack of reliable information. So, like any woman on a mission, she created her own roadmap — launching the Alpha-gal Information website and organizing the Alpha-gal Syndrome Awareness Campaign.
With a background in conservation and nonprofit leadership, Sharon brings scientific curiosity and advocacy savvy to everything she does. And with a biologist husband who also has AGS, Sharon understands firsthand how this allergy can impact every part of life — from your plate to your peace of mind. Together, we’re debunking the biggest myths about alpha-gal syndrome and revealing the real, research-backed truths.
Myth: Alpha-gal syndrome is a red meat allergy.
Truth: While red meat is the most common trigger, alpha-gal is a sugar molecule found in all mammalian products. In addition to mammal meat and mammal organ meats, ingredients such as gelatin, dairy, lard, suet, tallow, and even certain medications can trigger reactions in people with AGS.
It’s not steak, cheeseburgers, and bacon. And remember, pork is not white meat. That was just a very effective marketing campaign. It’s another mammalian meat that alpha gals need to avoid.
Myth: Alpha-gal syndrome is extremely rare.
The CDC suspects that as many as 450,000 Americans have alpha-gal syndrome, although that number is likely underreported and underestimated. Many doctors are unfamiliar with it, so people often go years without an accurate diagnosis. Plus, because AGS is not a reportable condition, healthcare providers are not obligated to report positive results to health authorities.
Myth: You’ll always experience an allergic reaction immediately after eating something with alpha-gal.
Truth: Unlike most food allergies that trigger symptoms within minutes, alpha-gal reactions often take 2 to 6 hours — or even longer — to show up. That delay makes it harder to connect the dots and leads many doctors to misdiagnose AGS. Also, unlike with other allergies, alpha-gal reactions don’t always occur after every exposure. Some people only react some of the time.
Myth: If you don’t break out in hives or have swelling, it’s not alpha-gal syndrome.
Truth: Alpha-gal reactions aren’t one-size-fits-all. While some people experience classic allergy symptoms like hives or facial swelling, others only have severe abdominal pain, nausea, vomiting, or diarrhea, and no skin symptoms at all. AGS can look like food poisoning, IBS, or even anxiety attacks, which is why it’s so often overlooked or misdiagnosed.
Myth: Only people in the Southeastern United States have to worry about contracting alpha-gal syndrome.
Truth: While AGS is more common in areas where the lone star tick is most prevalent (like the Southeast and parts of the Midwest), other ticks can also trigger AGS, including some species in the Northeast, California, and abroad (like Europe and Australia).
Myth: You only need to worry about tick bites in the summer.
Truth: Ticks stay active year-round, especially during mild winters. And since nymph ticks are tiny — about the size of a poppy seed — many people never realize a tick bit them.
Myth: The alpha-gal IgE test is like a pregnancy test. If you test positive, you definitely have alpha-gal syndrome.
Truth: The majority of people who test positive for alpha-gal IgE do not have alpha-gal syndrome. We say they are “sensitized” to alpha-gal, but not allergic to it. Diagnosis of alpha-gal syndrome is always made based on a combination of both test results and a person’s clinical history (symptoms, history of tick bites, etc). Don’t add the test for alpha-gal IgE to a tick panel. Only get tested if you have symptoms consistent with alpha-gal syndrome!
Myth: The higher your alpha-gal IgE, the stronger your reaction to mammalian food items will be.
Truth: Some people with very low alpha-gal IgE levels have severe reactions, and some people with high alpha-gal IgE levels have mild reactions.
Myth: If you’ve been diagnosed with AGS, you should immediately eliminate all dairy products from your diet.
Truth: Experts say that many people with AGS tolerate milk and dairy products without obvious reactions to them. If you don’t react to dairy, keeping it in your diet may even help you avoid developing reactions to trace exposures of alpha-gal. Some people eliminate dairy even if they do not react to it out of concern about the possibility of inflammation, especially those with a history of heart disease. Some cut back on dairy, especially high-fat dairy products, but still eat it occasionally.
(Backup):
Myth: If you have alpha-gal, you should avoid all mammalian products, including dairy, carrageenan, and medications in gel caps.
Truth: Everyone with AGS should stop eating mammalian meat and organs, but some people with AGS tolerate dairy, carrageenan, and gelatin in food and oral medications like gelcaps. Medications containing gelatin that are injected or delivered via IV are riskier than gelatin-containing foods, though. Even if you don’t react to gelatin in foods, you may react to gelatin in these medical products.
Myth: If you avoid every single thing that might trigger an alpha-gal reaction, even if you don’t usually react to it, your alpha-gal IgE will drop faster, and you can go back to life as it was.
Truth: Nobody knows whether avoiding all alpha-gal will help you go into remission. For now, there is no evidence of this.
Myth: Once your alpha-gal IgE drops to <0.10 kU/L, you can eat any mammalian foods you want without any issues.
Truth: Once your alpha-gal IgE drops to <0.10 kU/L AND you are no longer having any obvious reactions to inadvertent alpha-gal exposures, you can talk to your doctor about reintroducing foods that contain alpha-gal, but keep in mind the test only measures IgE in your blood, and it’s the IgE attached to your cells that is bioactive, so go slow! This needs to be done slowly and carefully, under the supervision of a doctor. Remember, AGS is an anytime allergy, not an every time allergy. Even if you don’t react to a food one time, you might react another time.
Myth: SAAT treatment is an easy way to cure alpha-gal syndrome.
Truth: It would be great if there were a cure for AGS, but there isn’t. Some people naturally go into remission, and some people’s AGS gets worse. This is true whether you try SAAT or not. Unvalidated, alternative treatments can give you a false sense of confidence, which can end in tragedy.
Separating Facts from Fiction
Living with alpha-gal syndrome means second-guessing more than just your dinner plans. It means double-checking ingredient labels, side-eyeing gelcaps, and wondering if your weird rash or stomach ache is just stress or something you ate six hours ago. And thanks to all the myths about alpha-gal syndrome floating around, it can be even harder to figure out what’s true, what’s outdated, and what’s just plain wrong.
But here’s the good news: the more we talk about AGS — the real science, the real symptoms, the real stories — the better equipped we all are to live with it. I’m grateful to Sharon for helping break down these myths and share what the research actually says.
If you’re still sorting through your own AGS journey, you’re not alone. You don’t have to believe every headline, forum post, or well-meaning neighbor with Google. Just keep asking questions, stay curious, and keep learning — one tick-sized truth at a time.
I have been on xolair for 6 years now. It keeps the hives at bay along with the severe itching . Very careful what I eat but always unknown ingredients. Helped tremendously
That’s wonderful!