A couple of years ago I was introduced to this condition through my wife’s aunt, Nancy Aronie. Nancy is a well-known figure through her writing and writing workshops (links below) and also a beloved friend to many on Martha’s Vineyard. When she first discovered her diagnosis and told us about it, we were of course concerned, but didn’t realize just how much this tick-borne allergy/condition was spreading! Now, it affects hundreds of thousands of people, by official records, and is probably undiagnosed in many thousands more. This article has two parts, my interview with Nancy, and then the article more broadly about the statistical and practical guidance re: Alpha-Gal.

Dealing with Alpha-Gal: An Itchy Nightmare with Nancy Aronie

Ben Moss: I’m with Nancy Aronie, author and teacher, who recently released a book called Seven Secrets to the Perfect Personal Essay: Crafting the Story Only You Can Write. Some of her other notable achievements, including being a commentator on NPR and the director of workshops on creative writing from the heart. Nancy, thank you very much for joining us.

Nancy Aronie: Thank you.

Ben Moss: I wanted to talk with you today about this condition, I guess you’d call it, Alpha-Gal. You were the first person who introduced me to this subject and it keeps coming up now. I keep hearing about it, and it seems to be something that’s spreading. And I wanted to interview you to get sort of the first-hand account of what it is and how it affects you, and what a person can do if they’re confronted with this diagnosis.

Nancy Aronie: So what happened was I was itchy. To the point of bleeding, scratching for about a year. And I would say to people, “are you itching?” And a lot of people would say, “yeah, me too.” And I’d say, “well, what’s happening?” And they would say, “oh, it’s the nymphs, little tiny ticks.” And someone else would say, “it’s mosquitoes.” Everybody had an explanation. I went to the skin doctor finally, and she had no idea. She got me an expensive cream for $75, which kind of alleviated the misery, but I would get these welts and rashes, and then there’d be like a raised red area. I’d say to Joel [Nancy’s husband], “I got another one,” and it would be a round red itch that wouldn’t go away for two to three weeks. And about a year into having this situation, I invited two people to dinner, and they said, “we have Alpha-Gal.” And I said, “what?” And they said, “we have Alpha-Gal. We can’t eat dairy or meat.” And I went, “oh, okay.” So I made chicken and they came over and I said, “so how does it manifest?” And he said “if I eat meat my throat closes. I actually have an EpiPen. And so I don’t eat meat at all, or dairy, it’s just, you know, itchy.” And she said, “I only scratch.” And I went, “what?” “Yes,” she said, “I’ve been itchy for a while!”

So the next day I called the doctor and I made an appointment and had a test, and I came out positive, very low on the range. So, I wouldn’t dare try meat right now because of the stories that I keep hearing about anaphylaxis. But there are a lot of cases on the Vineyard and they’re growing exponentially. It comes from the Texas Lone Star tick. It’s a small tick that’s very aggressive. I never saw it bite me. I think I’ve been re-bitten because I was starting to eat dairy and was getting away with just a couple of bumps. So, for heavy cream in my coffee, it was worth a couple of bumps. But it’s bad again. I found two things – the cream kind of helps a little bit, if I take a half a Zyrtec, and I’ve met tons of people and they say, “oh, I take a Zyrtec every day.” I just don’t want to do that, because it just doesn’t feel right to take something every day. So I take it if I have a breakout, or if I know I’m going to, like if I had pizza or something. I’m, you know, kind of not that limiting in my diet. I will break out and I’ll take a half of Zyrtec. The only thing is, I took one last night, and I woke up hungover. Everybody says, “ah, it doesn’t bother me at all.” Well, it bothers me.

Ben Moss speaking to Joel Aronie [Nancy’s husband]: So you’ve been living with someone who has Alpha-Gal. So what does that look like on your side of things?

Joel Aronie: Okay. Well, living with a gal that has Alpha-Gal is pretty normal except for her itching occasionally and then she seems to take care of it. They call it the Lone Star Tick, and it has an actual white spot that could be construed as a star, I suppose. I saw one the other day crawling on my leg and it’s about a quarter of an inch in diameter.

Ben Moss: That’s pretty big.

Joel Aronie: Although they come in poppy seed size also.

Ben Moss: Oh boy.

Joel Aronie: Yep. But the one I saw was the first one I’ve ever seen. And sure enough, it had that white spot. And if that tick bites there’s a probability that it’s carrying the saliva in its mouth and will inject it into your system which causes a histamine reaction.

It’s a long chain sugar molecule, very specific, I guess. And so your system develops an immunity, your immune system kicks in and tries to fight the sugar that gets into your system.

What happens is further down the road the histamine reaction is an overreaction, and it takes about 20 hours. So if I eat cheese, it seems to be fine. And about 20 hours later, that’s when I get a reaction. And so that’s why the Zyrtec helps, because it’s an antihistamine. It just makes your body think that there’s an overreaction to histamine.

The important aspect is that when you eat a meat from a hooved animal.

Ben Moss: Okay.

Joel Aronie: And the milk from a hooved animal, like a cow or a goat, I guess. It’s more or less the same sugar that gets injected into your system, you know, when it starts to digest and gets into your system. So the the system is triggered again. That’s what triggers the outbreak.

Nancy Aronie: So I happen to be a lover of marshmallows. And right when I first got that, I ate marshmallows and I couldn’t understand why I had a reaction.

Ben Moss: It’s the gelatin.

Nancy Aronie: Yeah. So you really have to read your ingredients, but there’s an app. And you take the app into the grocery store, it’s called Fig.

https://foodisgood.com/

You hold your phone up to a food package and it will have three possibilities. The first one’s green – you can buy it. The next one’s yellow – caution – you could try it, you could have it, moderately. And the third one is red – don’t you even think about it.

Ben Moss: So at least there’s an app.

Nancy Aronie: I walk around with that in the grocery store.

Ben Moss: So, Nancy, when did you realize that you had been bitten by a tick, or did this just appear?

Nancy Aronie: No idea.

Ben Moss : So you didn’t even see the tick bite when it happened?

Nancy Aronie: Nope, it’s not like a bullseye Lyme.

Ben Moss: Okay. And so the main thing is red meat and meat-related derivatives. And how long ago? You said it was a year before you even realized that you had it. How long has it been now since that test?

Nancy Aronie: About two years, and I had another test. I went to the doctor again, the guy on the island who’s like inundated with people making appointments. And he said, no pork, no lamb, no beef. My (allergies) report, though, said I could have moderate lamb and pork. So I ended up having a spinach salad with bacon in it, and I didn’t have a reaction the next day.

Ben Moss: Okay. Have you found that the symptoms, or what have you, are diminishing over time, or is it pretty much still the same as you had?

Nancy Aronie: Well, it was diminishing, and then I think I was bitten again, because it’s back.

Ben Moss: And besides the Zyrtec, are you doing anything else in the world of natural remedies?

Nancy Aronie: No.

Ben Moss: Okay. Have you found any good resources out there for more information about Alpha-Gal and how to address it?

Nancy Aronie: Oh, if you Google Alpha-Gal now, I think you’d come up with all you need.

Ben Moss: But there’s not just any one particular website or research or anything like that?

Nancy Aronie: Not that I know of, but it is growing. Now, if you go to an event like an art opening, the waitress comes around with a tray and she’ll say, this is Alpha-Gal.

Ben Moss: It’s that prevalent!?

Nancy Aronie: It’s prevalent. I have heard there’s a restaurant on the Vineyard that has a whole menu now. So when the waitress came around about eight months ago, I was with five women I had never met before. I don’t know if it’s a male/female thing; I don’t know what the percentages are. They came around with a tray and all five of us had Alpha-Gal. We had never met, we were just standing together. Oh my, the odds are pretty big here. But the one good thing about it is its name, I’m an Alpha-Gal.

Joel Aronie: Which is short for the sugar.

[Editor’s Note: Alpha-gal is short for galactose-α-1,3-galactose (often written α-gal), a sugar molecule found on cells and tissues of most non-primate mammals]

Ben Moss: I see an article here on the Vineyard Gazette that there’s actually even a support group that’s been set up on the Vineyard to help those who are coping with it.

I might have to reach out to see what the support group has to offer because, of course, what we’re trying to do is offer our readers and listeners some kind of practical guidance around what to do if they are faced with this themselves, or if they have a patient who comes to them and support them in the least toxic, most natural way possible, if that’s such a thing. But it sounds like other than dietary restrictions and Zyrtec, that’s pretty much how you’re managing.

Nancy Aronie: Yeah. Yeah. And I’m managing, but I know people who have gotten very, very sick, emergency room sick.

Ben Moss: Their throat closes.

Nancy Aronie: I got an EpiPen, too.

Ben Moss: Yeah. I mean, and beef is such a staple for many people in their diet that it’s a pretty big hit if you’re having to eliminate it, and other meats, and dairy as well. It’s kind of a big deal.

Nancy Aronie: It is a big deal. No protein. You have to figure out your diet with proteins.

Ben Moss: Well, we’ve been seeing infestations and invasive species of different insects that we’ve never seen before. Up in our area in Connecticut, we have these dreaded Lantern Flies, and, of course, things like Japanese beetles and so forth. So I don’t know what the causality of it is, but we certainly do see sort of bursts of population growth of different insects that previously were not part of our normal ecology. So this seems to be spreading, and I think it’s very important for our audience.

Joel Aronie: 450,000 people in the US are reported to have Alpha-Gal.

Ben Moss: Yeah, that’s a big number.

I think that a lot of people are probably undiagnosed because it’s not even something that has become a household word yet. The number of actual people affected might be double that. Who knows?

For now, I guess that’s as far as we can take it. We’re going to be keeping our ears open for anything that might be helpful, and we’ll be sure to share it with you. And let me just also promote your book one more time, Seven Secrets to the Perfect Personal Essay, and also, of course, your writing workshop, the Chilmark Writing Workshop. So, Nancy, thanks very much for your time. I appreciate the interview and wish you all the best for dealing with Alpha-Gal. We don’t want to refer to you as our Alpha-Gal for long. Hopefully, it’ll be something that will just be a memory in the not-too-distant future!

Nancy Aronie: Well, you know, I’m a fan of yours, and you guys are probably going to come up with the one thing that all of us are going to use. It’s going to be an olive oil treatment, or it’s going to be a mushroom. I’m doing the mushroom, by the way.

Ben Moss: Love it. Mushrooms are good, generally speaking. And if we do come up with anything, since a large part of our audience are in the natural health community, practitioners and support people, and also interested and curious lay people, we’ll be sure to let you know.

Nancy Aronie: Oh, you know what? I did forget there’s an acupuncturist in Connecticut. I think there are something like six in the country, and they do deal with Alpha-Gal. And the person here that I met said that they’re trying to train others. I called her in Connecticut and she’s not taking any new patients, but the guy here that we love, Ty, is a healer, and he said they were all chipping in, and they were going to try to get the training for this specific interesting problem. Yeah, so that’s something to look up.

Ben Moss: Thanks, Nancy.

Nancy Aronie: Have a great day.

Alpha-Gal Syndrome (AGS) – What you need to know

Alpha-gal syndrome (AGS) was obscure a decade ago. Today it is a recognized, sometimes life-altering allergy that can follow a tick bite and make certain foods—and even some medical products—dangerous. Patients often describe a baffling pattern: they feel fine after dinner, go to bed, and wake hours later with painful itching, hives, stomach pain, vomiting, or worse. The delayed timing is a hallmark. In AGS, the immune system targets a carbohydrate called galactose-α-1,3-galactose (“alpha-gal”), found in most non-primate mammals. The Centers for Disease Control and Prevention (CDC) provides a plain-English overview and management guidance: avoidance of alpha-gal–containing foods and products, and prevention of new tick bites. https://www.cdc.gov/alpha-gal-syndrome/about/index.html and https://www.cdc.gov/alpha-gal-syndrome/managing/index.html

Mechanistically, the delay makes physiologic sense. Alpha-gal that is bound to lipids appears to enter the bloodstream along with chylomicrons several hours after a meal; that timing helps explain why higher-fat dishes are more likely to provoke reactions. Recent clinical reviews and lab work support this lipid-transport explanation. https://www.ccjm.org/content/92/5/311 (PDF: https://www.ccjm.org/content/ccjom/92/5/311.full.pdf) and https://pmc.ncbi.nlm.nih.gov/articles/PMC5099113/ and https://pmc.ncbi.nlm.nih.gov/articles/PMC6852507/

The modern story of AGS took shape on two continents. In Australia, clinicians described “tick-induced mammalian meat allergy” in 2007, associating bites from local ticks with delayed meat anaphylaxis. https://pmc.ncbi.nlm.nih.gov/articles/PMC4313755/ In the United States, a pivotal 2008 New England Journal of Medicine report connected severe reactions to the cancer drug cetuximab with pre-existing IgE antibodies directed at alpha-gal—initially clustering in the Southeast and later tied to tick exposure. https://www.nejm.org/doi/full/10.1056/NEJMoa074943

Since then, the numbers have climbed. CDC analyses of commercial laboratory data identified more than 110,000 suspected U.S. cases between 2010 and 2022. Because AGS is not nationally notifiable and many people never get tested, CDC estimates that as many as 450,000 Americans may have been affected over that period. https://www.cdc.gov/mmwr/volumes/72/wr/mm7230a2.htm and https://www.cdc.gov/media/releases/2023/p0727-emerging-tick-bites.html The geographic pattern is clear: cases concentrate in a broad belt across the South, Mid-Atlantic, and lower Midwest, mirroring the range of the lone star tick (Amblyomma americanum). Within the national map, CDC also notes signals farther north and northwest (for example, in parts of Minnesota and Wisconsin), suggesting spread beyond the historical core. https://www.cdc.gov/mmwr/volumes/72/wr/mm7230a2.htm

What does “spreading” mean here? Ecologically, the lone star tick has expanded its range over recent decades and is now widely established across much of the eastern and south-central United States. Public-health and clinical reviews describe ongoing northward movement and increasing human contact—conditions that can drive sensitization. https://www.cdc.gov/ticks/data-research/facts-stats/lone-star-tick-surveillance.html and https://www.mdpi.com/2075-4450/15/9/709 Clinically, as awareness grows and testing becomes more routine, more patients with the classic delayed reactions are being recognized. In short, the combination of vector expansion and better detection points to rising case counts in the coming years. https://www.cdc.gov/mmwr/volumes/72/wr/mm7230a2.htm and https://www.cdc.gov/media/releases/2023/p0727-emerging-tick-bites.html

It is useful to keep the threat in context. Lyme disease still affects far more people each year. Using insurance records, researchers estimate roughly 476,000 Lyme diagnoses annually in the United States—an order of magnitude higher than any single-year count for AGS. But both the blacklegged tick (Lyme) and the lone star tick (AGS) are expanding their ranges, so continued growth in AGS diagnoses is credible. https://pmc.ncbi.nlm.nih.gov/articles/PMC7853543/ and https://www.cdc.gov/ticks/communication-resources/press-kit.html

For clinicians, recognition begins with the story. Ask about delayed reactions—often two to eight hours—after eating beef, pork, lamb, or high-fat dairy, or after exposures to hidden mammalian ingredients (such as gelatin) or certain medical products. Diagnosis is clinical history plus a positive alpha-gal–specific IgE test. https://www.cdc.gov/alpha-gal-syndrome/about/index.html and https://www.cdc.gov/alpha-gal-syndrome/data-research/products-containing-alpha-gal/index.html

Management remains straightforward but exacting. The first pillar is strict avoidance of mammalian meat and fat, combined with careful label reading for “hidden” animal-derived ingredients. Patients at risk for severe reactions should have an epinephrine auto-injector and know how to use it. Antihistamines can help with milder cutaneous symptoms, but they are not a substitute for epinephrine in anaphylaxis. For complex cases that remain reactive despite avoidance, case series describe off-label use of omalizumab; this is not standard of care and should be individualized with an allergy specialist. https://www.cdc.gov/alpha-gal-syndrome/managing/index.html and https://www.mayoclinic.org/diseases-conditions/alpha-gal-syndrome/diagnosis-treatment/drc-20428705 and https://www.jacionline.org/article/S0091-6749(24)01614-2/fulltext

Holistic and integrative practices can add meaningful support, provided claims remain modest and evidence-aware. Diet coaching is the first contribution: help patients build satisfying menus centered on non-mammalian proteins (poultry, fish, plant-based options) while learning to spot mammalian derivatives on labels and in restaurant dishes. Explain why higher-fat meals can be riskier in AGS and how that relates to delayed absorption; this reinforces avoidance without giving a false sense of security. https://www.ccjm.org/content/92/5/311 (PDF: https://www.ccjm.org/content/ccjom/92/5/311.full.pdf) and https://pmc.ncbi.nlm.nih.gov/articles/PMC5099113/

Co-factors matter. Alcohol and vigorous exercise around the time of a meal can lower the reaction threshold by increasing intestinal absorption and blood flow. Advising patients to avoid these co-factors near any potential exposure is practical and low-risk. https://www.ccjm.org/content/92/5/311 (PDF above)

Some clinicians trial mast-cell–supportive nutrients—most commonly quercetin and vitamin C—to ease histamine-driven symptoms in allergic conditions. The biologic rationale is reasonable, but AGS-specific randomized trials are lacking; present these as adjunctive, optional, and monitored, never as stand-alone treatment. https://pmc.ncbi.nlm.nih.gov/articles/PMC6273625/ and https://pmc.ncbi.nlm.nih.gov/articles/PMC10136699/

Switching to vegetable capsules when feasible is a simple way to reduce inadvertent exposure.

Medication and procedure checks are another integrative task. Many capsules use animal-derived gelatin; switching to vegetable capsules when feasible is a simple way to reduce inadvertent exposure. Some medical materials and drugs can contain mammalian components; most patients appear to tolerate heparin exposure, but caution is sensible in high-dose settings. Coordination with perioperative teams and clear chart documentation of AGS are prudent. https://www.cdc.gov/alpha-gal-syndrome/data-research/products-containing-alpha-gal/index.html and https://pubmed.ncbi.nlm.nih.gov/34798527/

Finally, prevention is the only disease-modifying strategy we have today. Counsel patients on layered tick-bite prevention: permethrin-treated clothing and gear; EPA-registered repellents containing DEET, picaridin, IR3535, oil of lemon eucalyptus/PMD, or 2-undecanone; daily tick checks; prompt, proper removal; and yard and pet measures where relevant. New bites can “re-ignite” sensitivity. https://www.cdc.gov/ticks/prevention/index.html and https://wwwnc.cdc.gov/travel/page/avoid-bug-bites and https://www.cdc.gov/yellow-book/hcp/environmental-hazards-risks/mosquitoes-ticks-and-other-arthropods.html

Taken together, the evidence points in one direction. AGS is no longer a curiosity confined to a handful of counties. The lone star tick’s footprint has grown, and with it the number of patients experiencing delayed reactions to mammalian foods and products. Clinicians can meet this moment by recognizing the pattern, confirming the diagnosis, teaching meticulous avoidance, preparing patients for emergencies, and counseling on tick-bite prevention. Integrative practices can support these steps with realistic diet guidance, attention to co-factors and excipients, and cautious use of symptom-oriented adjuncts. If vector expansion and awareness continue on their current paths, AGS will become a more common part of everyday practice—one we can manage with clear information and practical care. https://www.cdc.gov/mmwr/volumes/72/wr/mm7230a2.htm and https://www.cdc.gov/media/releases/2023/p0727-emerging-tick-bites.html and https://www.cdc.gov/ticks/data-research/facts-stats/lone-star-tick-surveillance.html

(For background on recognition and testing, see the Cleveland Clinic Journal of Medicine review: https://www.ccjm.org/content/92/5/311. For historical context and the cetuximab clue, see https://www.nejm.org/doi/full/10.1056/NEJMoa074943. For Lyme comparisons, see https://pmc.ncbi.nlm.nih.gov/articles/PMC7853543/.)

Also see: https://www.cnn.com/2023/07/27/health/meat-allergy-alpha-gal-cdc

For context, click here for the slides from the support group on Martha’s Vineyard.