Introduction to Alpha-Gal Syndrome

Dr. Meagan: Do you ever wonder how a tiny tick bite can turn your favorite foods into a life-threatening allergy? This week truly allergy besties here, and we are excited to bring to you this week information about Alpha-Gal and ticks and how that is all related.

So for me, where I live in West Virginia and we have, I have a ton of Alpha-Gal patients just starting out i'll say that. I see it a ton. I deal with it all the time. I've actually done some, started to do some OIT with some Alpha-Gal patients. What about you guys?

Dr. Kara: You were saying you actually see about at least one patient a day, even when you're in the clinic which I think is.

I,

That's astounding. I absolutely have had my fair share. I am located in Central Ohio but now recently have more of a telehealth based practice, and so I anticipate the strong potential of even seeing more.

And we'll dig into that, that there is some geographic elements to this condition.

Dr. Amber: I was practicing in Central Ohio, I had similar experience to you, Kara, where I saw a few cases. It wasn't a ton by any means and that was probably a decade ago now I'm in Northern Ohio, and while it's always on my radar when I'm hearing histories about food allergy, I haven't had a case yet in Northern Ohio.

And that's part of, that's part of how this all came about, right? Started southern. It's worked its way up because of how this disease has spread.

Historical Discovery of Alpha-Gal

Dr. Meagan: Yeah. Like back in the early, early 2000 early aught area it was realized around Charlottesville, Virginia that patients were having allergic reactions to a chemotherapeutic drug called Cetuximab. And so Dr. Thomas Platts-Mills and his team at UVA and it for other allergists who hear his name, he's kinda a rock star in our little world

Dr. Amber: He is so funny, so smart.

Dr. Meagan: He actually has Alpha-Gal himself, and so I had to call him about a patient once. And and he told me a hysterical story about how he can eat lamb chops whenever he doesn't have any alcohol or anything like that. But if he eats lamb chops with I can't remember if it was beer or wine. He has anaphylaxis and yeah. So in his British accent, he didn't even mean for it to be that funny, but it was so cute.

So what they discovered was that the commonality between all those patients is that they had the Allergic Antibody IgE that was specific to a carbohydrate that is found in non primate mammals, so like non-human. And the special thing about this, and it took us a very long time to, I think maybe buy-in isn't the right word, but typically, we are allergic to the proteins and things. So being reactive to a carbohydrate, that was a huge deal in our world 20 years ago. And we were all like, what is this real? And it's, it started being seen more and more.

And at first we thought it was spread just by deer ticks. That was the big thing. Everyone would say, oh dear, ticks, it's just a, it's spread by dear ticks. And what would happen is whenever the ticks bite other mammals and then bite us, then our body would be exposed and develop IgE antibodies to that.

How Alpha-Gal Transmission Occurs

Dr. Meagan: Alpha-Gal, it's a carbohydrate. And again, I'm gonna to make sure I say it to you right. Galactose-a-1,3-galactose, you ever look it up. But we all say Alpha-Gal that's way too much of a mouthful. And as an allergist, I just Googled it .

Dr. Amber: Clear, so we're saying the tick is biting another mammal, let's say a deer. The blood from the deer that's coming into the tick body contains this galactose, what'd you say?

Dr. Meagan: Yeah. Alpha,

Dr. Amber: we'll just call it Alpha-Gal, which is what we all call it, but contains that carbohydrate and so then when that tick bites the human, it like spits that blood containing Alpha-Gal into the human, and that's how the human gets exposed. 

Dr. Meagan: Yes. I'm still not clear on exactly what happens with the tick when it bites and why things inside the tick come back into us. But

Dr. Amber: we will just go with that for now, and then if we get a comment from Platts-Mills, he's " ladies, get me on the show so I can explain this."

Dr. Kara: I was gonna say, I had a patient ask me if this was like a zombie type condition, and I'm like, a little bit there is some elements that are out of a sci-fi type postmodern kind of television show or movie.

Types of Mammals Affected

Dr. Meagan: Could be any mammal too, by the way. Like I had a patient ask me that this poor guy, he was an avid hunter, his mom kept calling back and she'll be like, so can he eat squirrel? What about bear? He bear hunts. And I'm like don't eat bear, don't eat bear for Alpha-Gal reasons either. They're like, what about moose and elk? And I'd be like, I'm sorry to 

Dr. Kara: Nothing with four legs.

Dr. Amber: That's interesting distinction because when this was first being discovered, we thought it was animals with hoofs, like deer, goat. But you're saying now we've learned it actually could be any mammal, including squirrel and bear.

Dr. Meagan: I believe so. 

Guess we could also make the assumption that it's probably like other food allergy. If there's something you're already tolerating, you likely would continue tolerating it. If you develop Alpha-Gal and you can't eat steak from a cow. But you are tolerating squirrel. Keep eating the squirrel.

Yes. That is a, that is an excellent point. And one of the things that I like to tell my patients, and one of the things that comes up in my area all the time is that one of the things that is very weird about Alpha-Gal makes it extremely hard to diagnose because where I live, it has become I don't wanna say a fad, but it's a big thing that everyone is caught onto.

So anytime anyone gets a tick bite, they screen immediately for the Alpha-Gal IgE and that. is actually not recommended because we know with foods in particular, you can get false positives. So I have a ton of people come in who say, "Oh, I, I was told I was allergic to Alpha-Gal, I had a tick bite and I, and they screened for it and but I don't understand. I eat meat all the time red meat, I, and you know the other white meat, pork, all the time. That's why I struggle with white meat too". I'm always like,

Dr. Amber: That's a blood test that you're talking about, right?

Dr. Meagan: Yes. Yeah, it's a blood test. And so they'll go and get screened for Lyme and then they add Alpha-Gal to it. And so they'll come in and say, "I had this positive Alpha-Gal and they tell me to avoid things."

All this from mammals essentially. Or what I always tell them is, if you've been fine and not had an issue it's okay. You don't have to start avoiding it now. 

Clinical Presentation and Symptoms

Dr. Amber: The two types of patients that I frequently see with Alpha Gal are people who fit that stereotypical story that you hear if you read about with Alpha Gal, which is that you have ingestion of the culprit food and within two to six hours, sometimes even extending as far as 12 hours out, they start to have.

Dr. Meagan: Symptoms, and that's because Alpha Gal, the reaction happens during digestion and there are different. Features that can be part of the food or what's going on, with external, things that you're doing at the time that can make it more likely to happen. But the prototype that we used to have for every, almost every patient that presented in the beginning when I first started practicing was people would come in who had out of the blue, around. 12 to 2:00 AM would wake up and they would have a ton of abdominal pain itching, particularly on their scalp, all over. And then sometimes they would go on to have more full-blown vomiting, diarrhea, and occasionally having swelling problems breathing, that kind of thing. And so what I now see a lot as well is. For true AlphaGo cases, not the patients who have been told to avoid it just on blood work alone without symptoms, but have a ton of episodic, episodes of anaphylaxis that, occur. And when we look back. If we have a patient who tests positive for Alpha-Gal, in that scenario, we look back and figure out that each session was, or each episode came from a combination of factors.

Factors Affecting Reactions

Dr. Meagan: So what we know about Alpha-Gal is that the higher the fat content of the food, the more likely you are to have a reaction with it. And there are certain factors that make, Allergic reactions more likely to occur in general, which destabilize that mast cell membrane, which holds histamine, which does all the bad things. being stressed, doing exercise hard, heavy, strenuous exercise, drinking alcohol. And taking NSAIDs, the nonsteroidal anti-inflammatory drugs like ibuprofen, Motrin. for instance, one of my most memorable Alpha-gal patients, could eat steak and pork, all he wanted and no problem, but he was a climber.

So on days when he would go climbing, especially if he had a cold that evening, he would take some Advil had been a, a good climbing day and, would. have a beer and eat a hot dog, he would have anaphylaxis. And so we have these unique scenarios where you have different, I like to think of it as different levels of penetrance.

Should we talk about more in genetics and disease states? But some people are so sensitive they can't even tolerate byproducts from mammals like, gelatin from hooves or, dairy, from cows. But some people only react in these specific scenarios.

Dr. Kara: I use the analogy too that often will come up in discussions with patients who have mast cell activation. Things going on we'll talk about this histamine bucket. So this additive effect of we know NSAIDs can destabilize. We know increased exercise can increase gut permeability and kind of change some things to make us more susceptible towards reactions.

We know as women, certain times of our cycles make us more prone to having reactions. And so if you have, again, like this idea of the perfect storm of, I will sometimes joke with patients, it's yeah, the moon was in the right phase for this to happen, but but really it feels like that sometimes. And then other times you do rack your brain and can't figure it out. But yeah, I've had a few patients where they've had that testing and it wasn't necessarily inappropriately obtained.

Like I had a patient who was having recurrent episodes of lip swelling or angioedema. And as part of her workup, knowing she lived in a, in an area where Alpha-Gal is prevalent, that was part of her workup. But her Alpha-Gal levels were very low to a point where you're like, I don't know. And then when you teased out the story and asked about the timing of those reactions and for a series of four to six weeks, she cut out all mammal based products. She was still having swelling episodes.

And so then we're like, "oh, I don't think this is the issue at all. I think this was a red herring that yeah, you have a low level of this antibody." But that's not what's driving these swelling episodes. It's something else.

Dr. Meagan: That's an excellent. Point. I tell patients that a lot that, you know, especially those who come in with a positive alpha gal that was obtained on a whim or, due to just a bite alone or something. I'll say, look, if you avoid it and you are feeling better, that's all right. Or if you are having real episodes like swelling and hives and things like that, and you start avoiding it and that goes away, then maybe that was causing it.

Hidden Sources and Diagnosis

Dr. Meagan: But if you are avoiding it and it's still happening, probably don't need to. Although, alpha go can. Hide, like I said in lots of things. There is a non mammalian source of, alpha gout as well from carrageenan, which is I believe an algae. And it used as a filler in all sorts of things I've 

Dr. Kara: yogurts and ice cream and all sorts of stuff. Lots of pro processed and also processed foods.

Dr. Meagan: Yes. In my protein drinks, I was like, oh, good thing I don't have Alpha Gal. But that is definitely something to think about. We will also go ahead and look at potential sources that are hidden. I have had some patients who are so sensitive they couldn't even tolerate dairy broken down into baked good or, those other byproducts we talk about. 

Dr. Amber: Have you seen this in children or mostly adults 

Dr. Meagan: More in adults and, but also some in children. And one of the things that is important to recognize too, I believe it was last year that the American College of Gastroenterology added assessing for Alpha Gal to patient, to the recommendation for the workup for patients with chronic abdominal pain.

Did you guys see that or no? It's, yeah, it's very interesting and some doctors don't believe in that. I've had some of the, gastroenterologists around where I live, are like, eh, I don't really believe in that. And just like anything else, when I have patients who have chronic abdominal pain, I actually do assess it now, but i'm very almost forceful in telling them, if you don't feel better after a two week avoidance trial, I don't want you to avoid it. Our most important job as allergist is actually I think, to keep things in people's lives, especially foods. but I do assess it for that, for chronic abdominal pain as well. 

Dr. Kara: Yeah. I think the thing I worry about with and I'm thinking back to a particularly, strongly affected patient was very sensitive to gelatin and Carin and, and dairy products. And and this was someone who was going to have a really impossible time, I would say, at avoiding ongoing tick bites.

Just someone who's very, outdoors all the time lives in an area where there are lots of ticks. And really was, we were trying to come up with a game plan that one, helped try to keep him as healthy as possible, but also try not to have his world close in around him. I think the more allergies, the more things we add, that are added to the list.

Impact on Quality of Life

Dr. Kara: This tendency is for our world to become smaller. The food we eat, how much we're going out and interacting with other humans and social situations and and we know isolation is not good for our health.

Dr. Meagan: That's a good point too. It really is. I have a lot of patients who really, you know, whether it's healthier or I'm, I have a dog in my lap right now, another little source of 

Dr. Amber: Alpha-Gal 

Dr. Meagan: and she's sneezing and doing, and I'm petting her. That's why I keep, it's just FYI for people who are watching and hearing weird snorting sounds. but. 

Dr. Amber: I think my dog can hear it because she is like coming around the side here. Pretty soon we're gonna have a big 70 pound golden head up.

Dr. Kara: didn't have my dog. I just had my 7-year-old.

Dr. Meagan: I always make an effort to try to get people to, to keep into their diet what they can tolerate. So I have a lot of Alpha-Gal patients. I have them carry an epinephrine autoinjector or, external delivery device. Now we could call it that we have an intranasal version, available, but I have them keep that.

But there are patients that really want to have some type of meat from a mammal in their diet. And that's a American type of thing that we're used to that. And so I try to come up with ways to let them do that, where I will say, okay, it's reasonable for you to eat lean cuts of what you already have tolerated.

Just avoid the fatty cuts. So I have a ton of people who can eat steak and, lean pork chops, but not sausage and bacon, because it's really fatty. And I try to come up with an individualized plan for each patient and, it seems to be something that a lot of people, and I never know the right word to use for an adult.

I don't like the word grow out of it. I wish we had an, a different word for an adult transition into non allergy for a food but there are a lot of people who become, non clinically reactive over time, and we can get that back into their diet, which is really nice. 

Research Developments

Dr. Meagan: What do you guys think about, the, there were some scientific stuff that came out about Alpha Gal and, is it atherosclerosis? 

Dr. Kara: Yeah, so that's actually, that was a big topic of conversation with that, that one patient who was so significantly affected. In part because he already had some known risk factors for cardiovascular disease and was already very mindful in regards to using lifestyle as medicine in trying to minimize those risks. And he was actually very stringent in regards to even trying to avoid any of those exposures because the concern from his point of view was will that trigger increased inflammation overall? I admittedly, I have not done a literature search in probably the last 12 months.

It's probably been about that long since I saw that patient to see if there's been any further work shedding light on that. And really weighing that risk of risk versus reward. 

Dr. Amber: I just wanted to add we've talked about how Alpha-Gal. It is a newer type of food allergy and it's getting to be common in some areas. So some places, people know a lot about it. Some places it's still not that common, people don't know. So one of the sayings we have in medicine is you don't have to know everything, but you should know where you can find trustworthy information.

And there is a website called Alpha-Gal information.org that has a lot of really appears to be really good information with links to scientific articles to support some of the information about Alpha-Gal. So that might be a place to learn more. And it does say that it's Alpha-Gal is in all mammals except old world monkeys, apes, and humans. So you were spot on, Megan.

Dr. Meagan: Yep. Alpha Gal Source right here. 

Prevention and Future Concerns

Dr. Kara: As we think about prevention, so tick prevention, this is the time we're wearing long pants, long sleeves, hats can be really helpful if you live in an area that is, has lone star ticks. Those are the areas. If you Google that, maybe we can add one to the show notes. But those areas. And using DEET containing repellent, which feel like that might be another topic for another episode. But they're the most effective in regards to helping keep those ticks away.

Dr. Meagan: And unfortunately, it's no longer just deer ticks. I've recently seen they even think chiggers can spread it. So multiple different types of ticks now and chiggers. 

Dr. Kara: Great.

Dr. Meagan: Which is a downer. I know. When I saw that, I thought, really, we have enough to deal with in the world.

Dr. Kara: Oh, that's a bummer because those are more, I wonder how that will change the geo geography of things.

Dr. Meagan: right? Yeah. And again, yeah, more than just the deer tick and different types of ticks and chiggers. It's, yeah, disheartening. I don't like to think about all the bugs that could potentially one day be positive, wait until it becomes mosquito borne, right? Thank you. Thank you, for joining us today.

If you are an Alpha-Gal sufferer or if you have any questions, comments, or wanna share your story with us, we would love, for you to do that, to leave information in the comments or questions. It's definitely something we could do another episode on sometime if people come up with unique angles or other things they wanna learn from us as we learn more about it as well.

And, do a follow, give us a like, and we will, talk to you next time on 

Kara: Allergy, Actually.

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