FAACT's Roundtable

Ep. 222: Could It Be Alpha-Gal Syndrome? with Dr. Scott Commins

• Scott Commins • Season 5 • Episode 222

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Alpha-Gal Syndrome has been making headlines over the last few years, but do you know that a simple bite from certain ticks or chiggers can trigger an allergy to meat and other products made from mammals? We’re exploring this mysterious condition with Alpha-Gal expert and board-certified allergist, Dr. Scott Commins. Challenging to diagnose and even more challenging to manage, welcome to Part Two of a two-part series about Alpha-Gal Syndrome.

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Caroline: Welcome to FAACT's Roundtable, a podcast dedicated to navigating life with food allergies across the lifespan. Presented in a welcoming format with interviews and open discussions, each episode will explore a specific topic, leaving you with the facts to know or use.

Information presented via this podcast is educational and not intended to provide individual medical advice. Please consult with your personal board certified allergist or healthcare providers for advice specific to your situation.

Hi everyone. I'm Caroline Moassessi and I am your host for FAACT's Roundtable Podcast. I am a food allergy parent and advocate and the founder of the Grateful Foodie Blog.

And I am FAACT's Vice President of Community Relations.

Before we start today's podcast, we would like to take a moment to thank Genentech for being a kind sponsor of FAACT's roundtable podcast. Also, please note that today's guest was not paid by or sponsored by Genentech to participate in this specific podcast.

Alpha Gal Syndrome has been making headlines over the last few years. But do you know that a simple bite from a certain tick or chigger can trigger an allergy to meat and other products made from mammals?

We're exploring this mysterious condition with Alpha Gal expert and allergist, Dr. Scott Cummins. Challenging to diagnose and even more challenging to manage. Welcome to part two of a two part series about Alpha Gal Syndrome.

Welcome, Dr. Cummins, to FAACT's Roundtable podcast. Fortunately, several of our listeners were able to hear you speak at the FAACT Summit held in Chicago. So this is an extra special treat to host you on our podcast for everyone who couldn't attend this conference.

Dr. Commins: Thanks so much for having me.

Caroline: Well, we're very, very excited. This is such a important topic. So before we get too deep into our discussion, let's help our listeners get to know you a little better. So can you please share your background, how you were drawn to the area of Alpha Gal Syndrome, which is also known as ags?

I'm saying that for our listeners, so if we use our little acronyms, they'll understand.

Dr. Commins: No, that's great because I'm likely to call it AGS throughout our time together.

So I am trained both as a scientist and as a physician. And for me, so that's a large part of my background and I really wanted to find a specialty where I could see patients.

I don't like the hospital that much, as it turns out, so I wanted to see patients in the clinic. Then I also wanted to balance that with having a foot or even a bigger presence, perhaps on the research side doing scientific work.

And for me, the thing that really brought me to allergy and immunology.

So I'm trained as an internist. But the lifespan of patients that allergy immunology specialists see crosses all ages. So I get to see babies to the end of life. I really wanted to do that despite necessarily being trained in internal medicine.

So the outpatient side, the scientific side and all the ages. My son has food allergies and I developed an interest in the food allergy side. And when I was training at the University of Virginia, Dr.

Thomas Platts Mills group had just a handful of patients who started to talk about a food allergy. And they were adults. And so I thought, well, I could really be interested in that.

And it turns out over history that food allergy was the very beginnings of Alpha Gal Syndrome. So the Alpha Gal Syndrome sort of drew me in because it hit so many of those, those aspects and characteristics that were important to me professionally.

And then it was new, there really wasn't much known about it. And I found it fascinating that number one, people could develop a new onset food allergy as adults to an important food group that they had tolerated their entire lives.

And secondly, that it could be delayed. So you eat a hamburger for dinner and literally nothing happens until midnight. And I found both of those things fascinating and I was sort of hooked.

Caroline: I like that you were hooked in, but it really is kind of mind boggling. Like you said, this can develop later in life and then the way it functions. So let's get into how it functions.

So just simply put, what is Alpha Gal syndrome? Exactly? And then how does somebody get it?

Dr. Commins: So Alpha Gal syndrome is an allergic reaction to a sugar called Alpha Gal. That's the short name. It is technically galactose Alpha 1, 3 galactose.

And as my earlier comment might imply, Alpha Gal, it turns out as a sugar is found in all lower mammals, so to speak. So humans, we don't have Alpha Gal, and the great apes do not have Alpha Gal, but cows and pigs and sheep, goats, et cetera.

If it's a mammal that's not human, then it is likely to have Alpha Gal. And what Alpha Gal syndrome is, is truly this allergic response that people can develop.

So they make an allergic antibody that recognizes Alpha Gal, just in the same way that if someone was allergic to peanut, milk or egg, they would make an allergic antibody that recognizes those things.

And we think, well, we have good evidence now that the allergic response is one that's generated from tick bites. So you're wandering along life fine and you get a tick bite or the wrong Tick bite.

And then all of a sudden, your immune system is making this allergic response to a sugar that is found in all forms of mammalian meat and the derived products. And that becomes important because, as you mentioned, I like to call it a syndrome.

And the derived products part of Alpha Gal, I think, is really important. That's where the syndrome comes. So it's not just a hamburger or a hot dog. It can be dairy, it can be gelatin, it can be marshmallows.

There any type of foodstuff or product that could have mammalian origins, There's a chance that it could have AlphaGal.

Caroline: So that could include soaps or shampoos and just any kind of byproduct. Very overwhelming. And now, can children get this? Is this just focused on a certain age group or just basically any human bitten by a tick?

And is it a specific kind of tick?

Dr. Commins: Is it all ticks so kiddos can get it? I've diagnosed, I think, a chicken child down to age 7 or 8 months who just had tick bites in their backyard. And across the age range, it really is.

The tick exposure is the critical thing. So if you're a human, we think at any point along the way can develop this. And it does not appear to be a specific tick.

I think in many areas, there are tick populations that predominate. And so, for instance, I'm in Chapel Hill, North Carolina, and where we are, we have this Lone Star tick, Amblyoma americanum, and it is present throughout the east coast, up into the Northeast, and then moving now heavily into the central US and that tick is heavily associated with Alpha Gal syndrome.

However, if you look across the globe, there are multiple areas. It's been diagnosed basically on every continent except for Antarctica. And so in each of those locations, for example, Scandinavia has a big problem with Alpha Gal syndrome and a specific tick there.

Same with Australia, same with Europe. And they can be different ticks in each of these locations. So there often is a tick that predominates, but it's by no means limited to one.

Caroline: That's really interesting how different ticks, different varieties of tics, can still trigger this. That's fascinating. Are there any treatments, like what happens once a patient has been bitten? And is it temporary?

Is it lifelong? It's a syndrome, so I believe it's lifelong. So now what happens?

Dr. Commins: So treatment wise, you and certainly the listeners would be adept with the idea that really we manage food allergies with an avoidance diet. And so that is the hallmark of food allergy in general and certainly applies to Alpha Gal syndrome.

So avoidance diet is critical.

And you know, In February of 2024, the FDA approved omalizumab, which is Zolair, for a food allergy indication. We've had a, a great deal of success actually using Xolair in our Alpha Gal allergic patients and has really led to improvement in quality of life and fewer accidental reactions.

So I think between avoidance diet and Xolair, those probably the cornerstone of treatment, so to speak. Obviously we're all tuned to what could be coming down the clinical trial pipeline and waiting more there.

The syndrome itself, we actually think it is temporary. It, it seems like it will resolve. So as weird as all of a sudden someone who's eaten beef for 40 years gets tick bites, develops the allergy, we think if they can avoid additional tick bites, that becomes a critical thing.

If they can avoid additional tick bites. It appears that over, say, three to five years, that allergic response to Alpha Gal wanes. And we have plenty of patients who have gone on to successfully reintroduce, fully reintroduce all mammalian meats and byproducts.

And they do great. But it's the tick bite avoidance that.

Caroline: Seems critical and, you know, let's talk about that. So what precautions can people take to avoid getting bit by a tick? And what does it even look like? Is it red?

If you can give us some details.

Dr. Commins: So the first part of all of avoiding coming down with or being diagnosed with Alpha Gal syndrome really is tick bite avoidance. And so the behaviors that sort of center there tell you are much more related to kind of the things that you can do on the tick side, such as staying on trails, using repellents, if that's reasonable for you, tucking your pants into your socks.

I have some patients who use double sided tape around their socks and lots of sprays. Frequent tick checks, we really, the tick checks are important, but prevention is really the key because if a tick attaches, even if you find it very quickly, if that spot where the tick attached becomes red, inflamed, itchy, perhaps slow to heal, then even though you find the tick and remove it properly within say an hour or two, it may have already been on long enough to trigger the allergic response.

And often the hallmark of that are those sort of characteristic things I mentioned at the site of the bite.

Caroline: So now let's circle back to the diagnosis. You mentioned you could eat a hamburger and then four hours later have a response. So how does one even get diagnosed or how does one even begin to sort out that this might be what they have and they should go find an allergist?

Dr. Commins: Yeah, it's funny you should ask that because the diagnosis of this is a challenge. The delay makes that very hard because the paradigm in food allergy, appropriately so, has been that reactions happen within minutes to maybe two hours at the outside.

And in the alpha GAL syndrome space, we typically don't see any symptoms before two hours and most of the time on the four to six hour side. So it often takes an element of suspicion that this could be the case or unfortunately, someone having multiple reactions and kind of being able to think back about a common thread and say, you know, I had beef or pork at each of those times I reacted.

And so in those scenarios, the way that we diagnose it is really twofold. It's having the clinical suspicion, meaning you're getting some symptoms.

And then there's a blood test that we use for the Alpha GAL syndrome diagnosis and it checks for that allergic antibody response that we mentioned at the outset.

Turns out as, as often as allergists prefer to do skin testing for, for patients, it doesn't work very well for the Alpha GAL allergy. So really the blood test is what we lean on.

I will say here that the two pronged approach, meaning the clinical symptoms and the blood test are important and here's why. Because so many people get tick bites. What we've found is that there's a high percentage, in some places as high as 30% of the population may test positive for the alpha GAL allergy antibody, but they would have no symptoms whatsoever.

So in, in certain areas where tick bites are prominent and maybe people live a little rurally, and in those scenarios we really discourage screening. It's a bad screening test. You really need that symptom part followed by the blood test.

So just checking an Alpha GAL allergy blood test, I would say typically is not how we like to proceed. And really I discourage people from, oh, I had a tick bite, I'm going to go get the blood test.

No, no, that's not how we tend to do this. You may have a tick bite. Unfortunately, at this point we don't really know what the percentage is. And our research is thinking about this, what the percentage of people who go on to develop a true alpha GAL allergy after a tick bite, kind of really trying to quantify what's that risk.

And that may be different in different parts of not only the US but different parts of the world. So the diagnosis can be a tricky one.

And initially the time to diagnosis from the, the outset of clinical symptoms was on the order of five to seven years because these reactions were that difficult to link. And that's definitely come down now with awareness.

And we're getting better and better, but it is a tough food allergy to diagnose.

Caroline: Five to seven years is a really long time to be suffering.

So do you think that most pediatricians and family practitioners and internists know about Alpha Gal? Like, is it very commonly known?

Dr. Commins: Unfortunately, no. And some of this is definitely geographically influenced. We do find that in areas where there are, so to speak, hotspots of Alpha Gal allergy that internists, primary care providers and pediatricians can be actually quite aware of Alpha gal allergy and are very good at picking it up and sending the blood test.

In other places where there's just not much awareness or it's new, based on the expanding range of the tick, we find that it's really difficult for people to get a diagnosis because no one's thinking about it.

So a big part of what we have to do really is raise awareness.

This was highlighted almost two years ago by a study that we did with the CDC where when they surveyed 1500 providers nationally, less than half had even heard of Alpha gal allergy, and only about 40% were confident in their ability to diagnose it.

So we have some work to do and have some thoughts about how to do that, and hopefully we'll have some new resources coming out later this year.

Caroline: Well, it sounds like you're at the very beginning and cutting edge and those solutions will be coming, right? I have faith.

So before we wrap up today, is there anything else you would like our listeners to hear from you?

Dr. Commins: Yeah, I think there's two things that maybe that we haven't talked about that come up a fair amount.

And one is an awareness that some people who have Alpha Gal syndrome don't get the typical allergy symptoms per se, meaning they don't get swelling or itching or hives or even more severe reactions with respiratory compromise or cardiovascular collapse.

Kind of the trouble breathing. Right. Lightheadedness. In fact, there's a whole group of patients who get none of that. And their manifestation is gastrointestinal only.

So they may eat a hamburger or hot dog for dinner, and then two to three hours later, they may have terrible abdominal pain, so painful it might even take them to the emergency department.

They may have nausea, vomiting, diarrhea, and never have one single hive.

And so it is important, I think, to raise awareness about that sort of gastrointestinal manifestation where you might not be thinking it's a food allergy at all. And it takes real thought and awareness on the patient and provider side to try to figure that out.

I think that's one important point to bring up to me. The second thing that I might leave you with is as confident as we are that tick bites can cause Alpha Gal Syndrome to develop, my sense is that that's probably not the end of the story.

And there may be other causes to Alpha Gal syndrome, perhaps in the US but also perhaps we may learn more about this on a on the global stage, such that while tick bites seem to predominate, I think we're not at all opposed to the idea that there may actually be other biting type of ectoparasites or insects that perhaps are part of this story as well.

So more to come and hopefully we'll see where the research takes us on that side.

Caroline: Thank you so much for your time and really helping us understand this mysterious syndrome that we keep hearing more and more about. So it's really wonderful to hear from the authority we spoke to on our previous podcast with Candace and Debbie of 2 Alpha Gals.

And so we got that patient perspective and their stories which, you know, were just really fascinating. So this has been just a wonderful part of this two part series of giving us the science and, and just you brought such great clarity and I just can't thank you enough for your time today and sharing your fantastic knowledge with all of us and hopefully we'll have you back on again and there'll be even better news to share on some discoveries and things going on.

Dr. Commins: Yeah, I hope so. I'd like that. And thank you for everything that y'all do to raise awareness and educate around food allergies. It really is a calling and it's much appreciated.

Caroline: Thank you. I agree, it very much is a calling. So thank you one more time for your time. Thank you.

Before we say goodbye today, I just want to take one more moment to say thank you to Genentech for their kind sponsorship of FAACT's Roundtable podcast. Also, I want to note that today's guest was not paid by or sponsored by Genentech to participate in this specific podcast.

Thank you for listening to FAACT's Roundtable Table Podcast. Stay tuned for future episodes coming soon. Please subscribe, leave a review and listen to our podcast on Pandora, Apple Podcasts, Spotify, Podbay, iHeartRadio and Stitcher.

Have a great day and always be kind to one another.