Alpha-Gal Syndrome: Tick Bite Makes You Allergic to Red Meat Forever

Alpha Gal Syndrome [00:00:00] And a crew member came over. 'cause my, I, I sat down 'cause I started to feel like I was gonna pass out. And he came over and he was just like, we're we're going down to the medical office. And I was like, no, we are not, because that's where you catch Norovirus. Like I don't go to medical offices on cruise ships, but I let him take me. And when I was down there, the doctor and the nurse who weren't happy about being woken up anyway, because it's the middle of the night, they didn't believe me that I was having a reaction to something I hadn't known that I had consumed. You know, I was telling 'em it's a red meat allergy. They're like, well, did you eat red meat? I'm like, no. But I must have had exposure to it. They didn't believe me, but I do. I have this test. So I felt like I could say, yes, I do. And so when they took my vital signs, they're like, oh yeah, you're having a full anaphylactic reaction. We better do something about that. And they did. I'm Miriam Hoffman, a full-time college student living in Carbondale, Illinois, and you're listening to the Vance Crow podcast.

Vance Crowe [00:00:53] Welcome back to the podcast. I'm glad you're here. Well, this could be a Halloween episode, or at least an episode that I put, you know, ominous music and scary things because we are about to talk with two women, Debbie Nichols and Caroline Mathis, who have contracted a thing called Alpha Gal Syndrome. This syndrome is delivered by a tick and it makes you allergic to all red meat. And that means more than just cows. It means pigs, bacon, all sorts of other products that they'll talk about during this interview. And I have to say, the concept of having those things become suddenly something I'm allergic to is terrifying. But these two women are incredibly joyful. They have figured out a way to live with this disease and a way to thrive and create a different way to focus on what energy they're putting out into the world and creating a community. So I'm really excited to do this interview and a big shout out goes out to Kevin Fulta who recommended these women. I didn't know what Alpha Gal Syndrome was, so I was a little suspicious that it was some kind of a girl boss idea. I had no idea. But it turns out this is a real disease and they're gonna have a deep and interesting conversation. Before we get to that interview, I've been doing these Legacy Interviews, these private interviews where people, instead of being interviewed on the podcast for publication, they sit down with me and they talk about their values, the stories that they want, remembered the things about the life that they've never really been able to explain to anyone.

Vance Crowe [00:02:31] This has been one of the greatest works I've ever done. It has envi en enabled me to meet and learn from exceptional people. But regularly I get emails from the people that have used this service to say thank you so much. I was ex able to explain to my daughters something deeply important to me, or this is the thing that I would go get if my house had a fire and I could only grab one thing out. So if you are interested in either getting a private interview for, for yourself or to give a legacy interview to a grandparent or a parent, you can go to store Articulate Ventures and purchase that. You can either do it in person, if you're here in St. Louis, we'll sit down in my studio and do the interview. Or we can always do it over Zoom. This is a great thing and I, I estimate that the December time period is going to really fill up with people trying to do this for Christmas. So if you've been thinking about doing a unique gift, go ahead and get it and we'll get your loved one on the schedule. Alright, without further ado, we're gonna head to this interview. We, Debbie and Caroline on the subject of Alpha Gal Syndrome, Debbie Nichols and Candace Mathis, welcome to the podcast.

Alpha Gal Syndrome [00:03:44] Thank you for having us today. Yes.

Vance Crowe [00:03:47] So you two are sufferers of Alpha Gal Syndrome, which is the allergy transmitted by ticks that makes people allergic to red meat. This hit my radar screen when there was a guy that stood on some fancy stage, looked like something like Davos, and he was talking about this Alpha Gal Syndrome, and he suggested that everyone maybe should get it, and that way we could eliminate animal agriculture and flares and red flags and all sorts of stuff popped up on my radar. And then I encountered the two of you and I was like, man, I would love to have those two on to talk about Alpha Gal Syndrome and why we don't wanna spread this around the world. So to begin, Debbie, what is it like to have Alpha Gal Syndrome? What is actually going on? What are people talking about when they say Alpha Gal and why in the hell is it called Alpha Gal or Girl Boss or whatever that is?

Alpha Gal Syndrome [00:04:45] I like that girl boss. Well, so what it is is, as you mentioned, it's a, an allergy to red meat and, and mammal byproducts that begins with the bite of the lone star tick. So Candace and I can both tell you, we don't know exactly when we, we acquired it, but we were both diagnosed in 2019. And when I was diagnosed, the nurse who called me from my immunologist office said, okay, so don't eat beef. And I was thinking, okay, that that's great. I can cut out beef, but I, I cut out beef and did not start to feel better. So that's when Candace and I dove into this and decided we were gonna figure out more about a AGA and how it's so much bigger than just cutting out beef.

Vance Crowe [00:05:36] So Candace, how in the world did you two find each other, knowing that you both had the same alpha gallon disease?

Alpha Gal Syndrome [00:05:43] So it was interesting. We actually were friends prior to our diagnosis and prior to us both becoming, I guess more, you know, for me it was, I became really acutely sick. So Debbie didn't experience that, but she experienced my sickness with me. So it was one of those things that we both had suffered from food allergies and GI issues, things that were kind of unexplained for so long. I think our total combination of sickness was what Debbie, like 25 years. I mean it, I like that it has been a really long time. And that's something that we found with this, with this allergy, is that a lot of people are suffering from GI issues and they go to different specialists and it takes them years to get an actual diagnosis. So for me, I became really, really sick where I was having anaphylactic reactions at the time. I didn't realize they were anaphylaxis because to me anaphylaxis meant my throat was, you know, your throat's closing, your airways are affected and that's not always the case. So you can also be an anaphylactic shocker on the, on the verge of that if your blood pressure is dropping, if you're having tachycardia, if you're having a multitude of systems that are in play, that also is an anaphylactic event. So that is what was happening to me and I had no idea.

Alpha Gal Syndrome [00:07:17] So Debbie walked this walk with me for a couple of months and she started to see similar symptoms in me and was questioning it. And thankfully we live here in southwest Virginia and I was sent to UVA to see an immunologist there who happened to be Dr. Thomas Plat Mills. And he was actually the immunologist that discovered Alpha Gal Syndrome. So once I arrived at UVA, they were like, we know exactly what's wrong with you. And not long after that, Debbie decided to also get tested and she was also positive. So it was kind of this divine, you know, aligning and it's something that we don't, you don't really see in the AlphaGo community. People are suffering with this alone. And so that was where we were like, we've gotta share our story and we've gotta share, you know, how we're navigating this with other people because most people are alone and they don't have anyone that really knows about it. Even the medical, you know, professionals are still learning about it. Now

Vance Crowe [00:08:23] It's interesting that you describe it as a test because that was one of my, you know, opening questions is how do you know for certain that you have this? Because it appears to be like, you know, there are some diseases that are out there that they're like, there's no test, but if you have all of these symptoms, then it equals that. Is there a blood test you can take? And it's like bang, you know,

Alpha Gal Syndrome [00:08:42] There is, and I'm sorry, Debbie, there is, there is a blood test. It is different than the traditional allergy skin testing because it's an actual allergy to the carbohydrate structure, not the protein structure. So I know there's been, you know, questions among people, even with Alpha G, there's, they will get the skin test and they will get the blood test and they question why, you know, while I'm also allergic to dairy and meat in the skin testing, but why, you know, there's, there are questions around all of that, but it is a specific test and we could, you know, the alpha gal information.org page actually has this specific test under the diagnosis tab on there. So if people are interested, I don't know that test off the top of my head.

Vance Crowe [00:09:36] So Debbie, when you got the test, were you like, you know, assuming that it was going to come back this way, were you like pretty, pretty strong that it was like you had all the same symptoms or were you shocked?

Alpha Gal Syndrome [00:09:48] I knew it was gonna come back positive. And it's funny because I had gone in for a variety of food testing. I had suspected a bunch of allergies that I'd never had before and suddenly these were popping up positive. And beef actually came up as one of my positive allergies on the regular skin test, which I had suspected for years. I knew that red meat, that beef was a trigger for my stomach issues, but my sister has ulcerative colitis and that's an issue for her. So I just figured, you know, I had genes that made me susceptible to feeling bad after eating red meat. But then as Candace was going through her sickness, as she mentioned, and I was watching her symptoms and seeing all these parallels between us and lying in bed at night and like googling this Alpha Gal Syndrome and realizing that I checked so many of the boxes when I went, I, I called my allergist and immunologist and requested this test. I said, I need to be tested for Alpha Gal Syndrome and I knew it was gonna come back positive. And it did.

Vance Crowe [00:10:47] Did they roll their eyes? Were they like, oh, here we go, another Google doctor should showing up

Alpha Gal Syndrome [00:10:51] To tell us what Yeah, that's exactly right. And that's what, that's what everybody does really. But that's a lesson that we are learning in this journey is that we have to be our own advocates in this because there's no one out there to do it for you. So that's why we're investigating this, that's why we're exploring this journey and trying to help other people through it too.

Vance Crowe [00:11:10] So Debbie, Candace had mentioned that she had anaphylaxis, she had all of these things going on for a long time. What were you searching on Google? And don't worry, the much of the audience is used to dealing with cow shit and all sorts of other problems. So you're not gonna offend anybody here.

Alpha Gal Syndrome [00:11:27] Okay, good. 'cause I was worried in the last podcast that I said diarrhea too many times, so

Vance Crowe [00:11:34] I'll put on a big explicit warning on that. So just go ahead. But I think like, talk candidly, because I think a lot of, a lot of intestinal issues, people kind of vaguely talk about 'em and people don't understand. So Sure. Hit us with the, hit us with the, the symptoms, the

Alpha Gal Syndrome [00:11:49] Gory details. Absolutely. And I'm glad to do this because I spent so long just not knowing what was wrong with me. So my symptoms started in probably around 2008, somewhere around there, 2009. And I did not ever pull a lone star tick off me that I'm aware of. But it started with the GI symptoms, right? Like terrible bloating and diarrhea and gas and just general misery and you know, you chalk some of that up to getting older and becoming a parent. So that had happened, you know, the few years prior to that and body changing and everything until it was too much to handle. And I went to a doctor and you know, they, they really just couldn't identify anything that was wrong with me. And so I'd started to have some additional symptoms, other things I was Googling, like the joint pain. So I had just intense joint pain, so much so that I couldn't lie on the bed and read my kids a picture book on my side because it would hurt too bad to get up when I would try to stand up. Like I felt like I really thought I was like early onset arthritis, you know, in my thirties. And so I would go see a doctor who would tell me that nothing was wrong with me. And I would see a specialist, you know, when they would tell me and that specialist would tell me that nothing was wrong with me. And so I would think that nothing was wrong with me until it got too bad that I couldn't handle. And I would come back to Googling and the, the joint pain and the stomach pain and then the brain fog.

Alpha Gal Syndrome [00:13:24] That was a huge issue too that started in later. There was a moment where I was sitting in my driveway and at the end of our driveway we have a set of mailboxes for the five houses on our street and I was going to sit in my car until I could remember the number on my mailbox. I just couldn't recall the number of my house. And so I knew that that wasn't, it wasn't normal. So it was a variety of things, but the GI thing was consistent from start to finish. And truthfully, I mean I saw multiple GI doctors who diagnosed me with nothing and told me at one point maybe I had some irritable bowel syndrome and I had the colonoscopies, I had several endoscopies,

Vance Crowe [00:14:08] I had my, nobody's doing that for fun.

Alpha Gal Syndrome [00:14:11] No, no, it's the worst. I had my gallbladder taken out because the pain that was up under my ribs was so bad that I was like it. And they, they weren't seeing gallstones, nothing. They were just like, your pain is so severe, let's, let's see if it makes a difference. And you know what, it did not make a difference. So it was, it was quite a journey

Vance Crowe [00:14:30] As the husband of a wife that recently had a baby that constantly complains about brain fog. And I'm always like, eh, Annie, it'll be okay. You're, you know, you'll bounce back. Candace, did you have this kind of, everything is wrong. No, but like kind of hard to get people to believe you.

Alpha Gal Syndrome [00:14:48] Yeah, and my, you know, my journey started in 2007. So after the birth of our third child, I developed major GI issues. And so, you know, I think Debbie and I are similar in that way that I was having like gripping, stabbing pain in my stomach a few hours after I would eat. And again, I went in, they wanted to do a scan on my gallbladder. I was breastfeeding at the time so I couldn't be scoped. And six months later I saw a GI doctor, everyone was kind of checking off the boxes. Well you could have this but maybe that, and it was like IBS and diverticulitis and all of those things, but none of that, I didn't align with them completely. But I was having massive diarrhea like the next morning. So I would have these stabbing pains not long after I ate probably a couple of hours that would literally bring me to my knees. It was horrible. And then the whole next morning I would be in the bathroom stripping my clothes off super hot, then freezing cold. I'd have to call my husband's office just to be on the phone with someone because I felt like I was gonna pass out. And that would happen multiple times a week. So six months later I was sent to an allergist after I broke out in hives and I had actually found a tick the month before I delivered my daughter and it was the tiniest sea tick on my toe. But no one ever asked if I had been bitten by a tick.

Alpha Gal Syndrome [00:16:23] Like that was not, I never even put the two together that they could have been, you know, correlated. And I was actually diagnosed with a wheat allergy from the traditional skin test. And things got better over the years when I eliminated gluten and wheat and was, you know, I was super meticulous with what I ate and put on my body and was wheat free. But I was still having these lingering issues off and on and I could never pinpoint it. I would wake up in the middle of the night sometimes with my blood pressure tanking, feeling like I was gonna pass out and having massive diarrhea and never even thought, you know, well hey maybe it's the pork or the beef that I've eaten. I always thought, oh, I was contaminated with wheat. And so yeah, it went, there was never a correlation between the tick bite and what was happening and it went on for a long time.

Vance Crowe [00:17:15] And so what is happening? You get bit by a tick. How does that equal your inability to, to eat red meat,

Alpha Gal Syndrome [00:17:23] Debbie? Well I can't give you the science behind it. I can certainly point you to the exact people you need to talk to for the science, but it essentially makes you, it it it causes your body to develop an allergy to red meat. Yeah. And I think from what we understand, we are the only mammals that do not can have the alpha gal now it's a really long word. So you asked initially like where does the word Alpha Gal come from? And it's not just super badass women like for it to be, although I like that. Yeah.

Vance Crowe [00:17:55] Girl boss. Yeah, right.

Alpha Gal Syndrome [00:17:56] But it's, it's shortened for the galactose, it's a really long word. Again, us poor lay people cannot remember it, but it's the carbohydrate molecule that gets turned on, I think in our body that is not naturally turned on like it is in other mammals.

Vance Crowe [00:18:17] And so you hear people like that guy on the stage. I believe you guys have both seen this clip where the guy is standing up there and he's saying one way that we could stop climate change is by eliminating animal agriculture. And the way to do that might be that we release Alpha Gal and get people infected with that. What are your thoughts there? How do you, how do you feel about somebody saying they might unleash Alpha Gal across the world?

Alpha Gal Syndrome [00:18:41] You said you're putting an explicit label on this. I've got some thoughts about it. 'cause it's so much more than just cutting red meat out of your diet. It's so much more than just stopping to eat beef. It's, it's, it's first of all the symptoms were just absolutely churches for so many years before the diagnosis. Candace and I even, even now, even as educated as we try to be on this lifestyle, we are still in the thick of this. We still get contaminated. We still have reactions and sometimes, sometimes it's stomach pain, sometimes it requires an EpiPen. For both of us it's, it's unpredictable. We've heard it referred to as the any time syndrome rather than the every time syndrome. You never know how bad it's gonna be or if you're gonna react. And mammal is hidden everywhere. So it's not just not buying steak at the grocery store, it's checking to see if your body lotion has, you know, a, a mammal byproduct in it. It's, it's everywhere. The lifestyle is really challenging. And so for someone to just assume that they could release this to, to stop people from eating beef is, is infuriating. It's infuriating on so many levels. And I think it even goes beyond like what Debbie was saying, you know, we not only have to look out for mammal derived ingredients, we're learning and finding that the alpha gout epitope actually is in a lot of vegan products. Like a, it's contained in carrageenan, in agar gar in any red algae.

Alpha Gal Syndrome [00:20:14] It, they're finding the epitope there. They've also found it in certain molds and which also now equates to that same mold is nori. So it's, it is way beyond just eliminating red meat. And I think that it's a very bold statement for that gentleman to say, and I would encourage him to come to Virginia and go walk in a field and he could be the first one to, you know, endure that and then see how he likes it. Because it is, it is, I mean, mean for me, you know, I see Dr. Scott Commons who is now the lead al researcher and I've developed a mast cell activation issue. So this, it, it ca can cause cardiac issues in patients. It's so much more complex than I think people that don't understand it, they don't know how deep this really goes. And so I was really pissed off when I heard that guy say that. Like, I'm not gonna lie because it's impacted me on a very severe level and everyone is so different. You know, Debbie's not as severe as I am and it's like, how dare you, would you like to go to the ER every other week for six weeks because I have, and it is not fun. And when you're having to advocate for yourself with even er practitioners that have no idea about it, it's a very terrifying space to live in. And we, you know, we're trying our best to share the joyful times with people so that we can help them get out of the darkness.

Alpha Gal Syndrome [00:21:50] So it's like, why would you wanna put anyone in a dark space? Like I think that it was just a really awful thing to say. Can I add some Yeah,

Vance Crowe [00:21:59] Go ahead. I

Alpha Gal Syndrome [00:21:59] Was just gonna add something to that too. In addition to the impact it has on us individually and together as two alpha gals, the impact on our family has been enormous too on our families. You know, they, they've had to change their lifestyle. My kids, I've got two teenagers and every night they're like chicken like again, we're having chicken again, you know, and, and I mean we try to mix it up anyway with seafood and things and I do, you know, my husband will grill for them sometimes and I'll eat the leftover chicken or, but, but the impact on our entire families is enormous. It's, it's changed everything. Yeah.

Vance Crowe [00:22:33] So let's talk a little bit about your diet now. So it's interesting because I would've thought veganism having grown in popularity would've opened up a lot of doors for you, which it probably has, but it also has some, some drawbacks. So do you follow then a vegan diet? You're eating chicken, can you eat eggs, can you drink milk? Like how does all this work?

Alpha Gal Syndrome [00:22:54] So most vegan items, if, if they're certified vegan are safe, we just have to look for a couple of specific ingredients. Like the ones Candace mentioned a minute ago. I do eat chicken and seafood, you know, poultry and seafood, but I cannot have dairy and neither can Candace. And so I had tried to reintroduce dairy to see if it was really an issue because I didn't come up as allergic to it the way that I did with beef. But reintroducing it brought back all my joint pain. And so I don't have, I I I've completely eliminated dairy from my diet as well. And in fact it was really interesting 'cause we were at the AlphaGo Symposium a couple weekends ago and someone else mentioned that they had the exact same experience with dairy and the joint pain. And it was really, it, it it, it really helped me 'cause I was like, oh, okay, I I'm not the only one here, you know, because you start to wonder too, like, oh maybe I'm okay 'cause it's supposed to, it's supposed to fade, it's supposed to go away for some people. And every now and then I'll just get exposure and before again and, and everyone's really different in their severity level even with, you know, food. 'cause like you said, some people can have dairy and some people really literally just have to eliminate red meat, but it's not for the majority of people. Because I was having such a bad flare, I decided to even eliminate, only like six weeks ago I decided to eliminate eggs and all meat. So I've gone completely plant-based right now just to do kind of my own experiment to see can I get my mast cells to calm down.

Alpha Gal Syndrome [00:24:34] And I will say that it has helped because the thing that has really even more tricky about this too is the labeling issue. Like there are, you know, there's not a, there's a super gray area where some things don't have to be put on the label if there's not a certain, you know, over a certain percentage of, you know, animal byproducts and feed or you know, what have you. And so I was questioning, hey, am I reacting to the chicken? Because they could have potentially eaten an animal byproduct. So I just had to kind of just stop all of it. And we found out like even frozen fish can have carrageenan sprayed on it before it's actually frozen and packaged. And it's like, how are we supposed to know these things, you know, if they're not labeled. So it makes it even more difficult. So I've, you know, I've gone a little more strict with my diet, but it's hard 'cause I, I went from being super paleo for like eight years and probably like no the most Yeah, seriously.

Vance Crowe [00:25:39] 'cause of the weed allergy because you thought it

Alpha Gal Syndrome [00:25:41] Was

Vance Crowe [00:25:41] Wheat so you went paleo. Oh my

Alpha Gal Syndrome [00:25:43] God. Yeah. So I mean you talk about like meat eaters, we were like huge meat eaters over here, like beefs, bacon, all of it. And it's like to do this like 180 and it is terrible. I mean it was horrible.

Vance Crowe [00:25:57] Well, I've got a story for you that might make you feel better about this. So I was in Africa, right? And I was, I was living in the Peace Corps and I broke out from head to toe in this allergic reaction and I could not figure out what it was. And everything was new. So you couldn't just do like an elimination diet because it's like I can't go back to what I've always been eating, right? Is everything is new. And it turns out that the plant family that has mangoes on it is also poison ivy, right? So the, the, the oil that they produce is ol and I am a good Midwestern kid that is hyperallergic to poison ivy. And so I didn't realize this about mangoes 'cause the first couple of months that I had been there, the only time I had a mango was when somebody cut it up and gave it to me. And if, if I don't cut it, then I don't get exposed to the oil. So I'm broken out from head to toe. I don't know this about mangoes. And the whole time I'm like, man, this allergy would be terrible if I didn't have all these mangoes to eat in my yard. 'cause I had a mango tree and I was paying kids to climb up in them, drop down mangoes to me so I could keep eating them while I'm broken out. Not realizing like, oh my gosh, realiz I'm just dosing myself with this. So I, I can appreciate the, like the two factors there that you talk about, the the one not knowing. And my sense is that Alpha gal is you can eat something and then there's a delay. It's not, it's not like, you know, when you have a peanut allergy and all of a sudden your lips are swelling up or whatever. So you have that delay so you don't really know. And then two, only to find out later, the very thing that I was using to compensate is the actual thing that I was doing that was so horrible.

Vance Crowe [00:27:35] So I can relate to this, but not if it's a permanent thing. Are you like, are you now like slaves to the Alpha Gal Syndrome forever? Or is there a chance it will go away? How does this work?

Alpha Gal Syndrome [00:27:48] Yeah, we don't know. For some people it does. I'm sorry, Candace. No, you're good. Go. I was gonna say for some people it does go away. We've been talking with Dr. Commons about that for us. Not yet, not yet. For some people it doesn't, it doesn't go away at all. So we'll just wait and see. Yeah, and I don't know how they determine that either. I don't think that there's like a test or, you know, I know a lot of people we see on, there's a big Facebook page for people with AlphaGo. I think there's like over 10,000 people now. And a lot of people get fixated on their numbers that they receive from their test. But I don't think any of that matters, you know? So I'm not really sure who is in the category that's gonna, you know, outgrow it or whatever. You know, they say five to seven years. Some people it goes completely away, but I have no idea.

Vance Crowe [00:28:44] So the lone star tick is the way that it's carried and ticks are endemic in fact that once I found out it was lone star tick, I was like, state of Missouri, how many lone star ticks and it's

Alpha Gal Syndrome [00:28:57] An

Vance Crowe [00:28:58] Endemic. And I was like, oh God. Oh no. What can we do to lower the number of ticks? Is there anything that that like we can do to start slowing this problem down? Is there a way to select out and kill the lone star tick? I think you'd probably find a lot of support for getting rid of ticks in, in the us

Alpha Gal Syndrome [00:29:21] I idea. I don't have a big, big exclusion for me. I, I actually live on a, a little farm. We have a little hobby farm. And so I see ticks all the time and it's, it's actually terrifying to me. It's worse than spiders or snakes or anything at this point. But I have chickens. And so my theory is if the whole world just had chickens and Guinea hess that couldn't eat these, maybe we could do something about it. But I don't have a great solution. Yeah, I don't either. And I don't know beyond, you know, I know some people spray their yards and all of those things, but we're in the same situation here in Virginia. Like I know that Virginia and North Carolina also has a huge tick problem. And so yeah, that was my first thought was animals. And I'm not sure.

Vance Crowe [00:30:09] Yeah, like I, so I've been taught, you guys have me like thoroughly scared about this. So I I've been looking into this and part of the word is that they spread a lot through deer. Yes. And in my like suburban St. Louis neighborhood, there are deer everywhere. And like, if, if I can lower the odds of me getting Alpha Gal Syndrome by even a half a percent, then let's just go lay waste to the deer. Like just, just absolutely eliminate all of them and I can go visit them in zoos. But I, you know, I, I like, I I think that this is one of those things where there are so many challenges with things like deer in our, in our cultures, in our suburbs. And there's something that must be out of alignment in our woods that, like I have a friend that just bought 40 acres. He lives out in the woods and his kids have not been allowed to go outside in the woods because the ticks are too bad.

Alpha Gal Syndrome [00:31:05] And

Vance Crowe [00:31:06] Like, this can't be the way that it's always been. That ticks were so bad you couldn't go out in them may maybe it was, and we just don't know.

Alpha Gal Syndrome [00:31:12] I wouldn't think so either. I wouldn't meet her. I have a friend. I feel like this is a really great solution, especially people who are against, I guess deer hunting. My husband grew up in a family of deer hunters in North Carolina, but I had a friend who lived in Charlottesville, Virginia. And her, she had a family friend that would hunt deer and then donate the meat to the homeless shelters. And so that, it's like, I don't know, like if you, I don't know statistically what the number is of deer in our population, but

Vance Crowe [00:31:43] Oh, they're more deer in the United States right now than there were when Columbus was here. Wow.

Alpha Gal Syndrome [00:31:47] And it's

Vance Crowe [00:31:48] Like, it's like way more to me when like, I'm sure you need the tagging system for some reason. But to me, once we have the tagging system, we made all of the deer, the king's deer. And we can only go kill them when he gives us permission.

Alpha Gal Syndrome [00:32:01] And

Vance Crowe [00:32:02] Yet we have massive amounts of deer. Like I like so in my little like yard, we've at times been able to count like more than 20 deer.

Alpha Gal Syndrome [00:32:13] Like

Vance Crowe [00:32:13] You can look out in our backyard and they'll be like in the morning and you'll be like, look, all the grass is matted down because the herd of deer slept in our yard. Like

Alpha Gal Syndrome [00:32:21] Yes,

Vance Crowe [00:32:21] That can't be good, right? No.

Alpha Gal Syndrome [00:32:23] And if there's

Vance Crowe [00:32:23] Any association with Alpha Gal then I say we go blow 'em all away.

Alpha Gal Syndrome [00:32:28] Yeah. And we could feed a lot of people. That's, I mean that's right. I do think like maybe that is a solution to a lot of different problems. I have to say too. So we have a new puppy in our house. So I've been going out in the middle of the night and I wear a headlamp, there's more to the headlamp story, but I wear a headlamp. And when I look out into our backyard, 'cause our general yard is probably like an acre, and then we've got the rest of the acreage with sheep and chickens and things. But when I look out into the yard with my headlamp, I see all these sets of green eyes just over the whole backyard. It's like a Scooby-Doo movie, you know? And they're just every, we can't walk out without seeing, we used to name them and now there's just too many to even name. Like we used to call them by name with the kids, you know, like no, there's Mary Kate, Ashley Olson and you know, like, but there's just way too many to name now. It's, they're crazy. It's crazy how many you out there,

Vance Crowe [00:33:19] You guys mentioned going to a convention or a conference about this. That's gotta be a little weird, right? So you're going to something where people are suffering from a disease. So what do you go and talk about? Is it, you talk about your diet, you talk about how bad you feel, you talk about how people didn't believe you. How does this go?

Alpha Gal Syndrome [00:33:40] Well, I think there's all of that that is talked about, but for Candace and I as two alpha gals, this, you know, company that we've started, it was more important for us to actually talk about the joyful side of this. About how we are planning on living this life with our diagnosis without sacrificing joy and how we're reinventing the way that we live and how we're trying to find resilience and ultimately find joy. And so that's what we talk about. But there's a lot of, you know, there's a lot of comfort in having community too who are, who are sharing this common diagnosis and saying, oh, I have joint pain too when I eat dairy. You know, and so, so there's that too. But for us the most important piece of this is figuring out how we're gonna live with joy.

Vance Crowe [00:34:26] So tell me about the Alpha Gal business that you've started as a result of this.

Alpha Gal Syndrome [00:34:32] So we are in the very new phase like stages of this. So we have some things that we're working on that we're not ready to share yet. But, you know, we started blogging about our experiences and you know, giving people recipes and resources and there's a lot of misinformation out there. So we wanted to start a page that has, you know, accurate information, especially from the experts. So we've worked with Dr. Scott Commons and we also have done some, we've done some things with Dr. Paige Freeman, who is a food allergy psychiatrist. So for us, the mental health piece of this is extremely important and something that we really wanna focus on. So we're building out kind of this community and this, this resource and really a toolkit, if you will. So we're, we're making resource guides for how to safely dine out, how to safely drink wine. You know, we're, like Debbie was saying, we wanna focus on joyful things and what does that look like for you? Giving people ideas of reinventing new traditions, you know, around everything centered around food. You know, food is what makes us, you know, light up. We're huge foodies and I, but I feel like our whole culture is based around food and you know, how do you make that fun and exciting again? And we share a lot of that, you know, just our experiences with people like Debbie and I actually celebrated Easter together last year and we decided to do a Middle Eastern themed dinner instead of the traditional ham.

Alpha Gal Syndrome [00:36:13] Right. And we did chicken kebabs and hummus and paleo flatbread and, you know, everything was Alpha gal safe and gluten free. And it was probably the best Easter dinner we've ever had. I think so. And not just for us, but I think for all our non alpha gals too, like our families. And we had another family with us who no one in that family has Alpha Gal and yeah. And it, the entire meal was Alpha Gal safe. And I think they would agree that it was just, it was so much fun and, and maybe the best that we've had. It was, it was great. You

Vance Crowe [00:36:47] Know, it's interesting, I I would say that very confidently that every single religion has dietary restrictions and, and that as a function of having an in-group, you have things that you have to sacrifice. So you think about like the Jewish and the Islamic traditions, they don't allow pork. And you know, that's the most consumed meat in the entire world. So by giving that up, you create yourself an ingroup and an outgroup. People that do and people that don't. And so it's interesting to think about the, the tradition coming about as a, as a result of a disease and then that creating a reason for people to get together. The restrictions that you put on are things for your own safety. Like there's something really, I don't know, deeply tribal about what you're doing. That almost seems like a natural way of, of bringing together community. Like you were saying in the West. You know, food is a big part of our culture. I think it's actually food is a part of every culture, every culture I've ever been to. Yeah, absolutely. That is the central thing that brings people together. It's the reason to work together.

Alpha Gal Syndrome [00:37:51] Yeah,

Vance Crowe [00:37:52] I think there's something really interesting about you guys bringing that together. You mentioned something that kind of blew my mind. Why can't you drink wine?

Alpha Gal Syndrome [00:38:03] Okay, so two things that might blow your mind. So wine can actually, and not just wine, but alcohol in general. I think, Debbie, correct me if I'm wrong, but I think liquor doesn't necessarily have as the filtering process is, is not the same. But for beer and wine, the filtering process can use animal byproducts, be it gelatin, be it blood. I don't think it's as common anymore to use that. But defining agents can contain an animal

Vance Crowe [00:38:37] Byproduct. Yeah. To get the yeast out of things. That's absolutely

Alpha Gal Syndrome [00:38:40] Right. And then I've also seen, like, I was at a restaurant and I'm always googling barn novos, this vegan wine website that you can check against. And in one of the wines that was on this restaurant menu, milk powder was actually in the wine. And I have, and it's interesting, I think it's used as a clarifying agent, which is kind of mind blowing to me. You'd think it would make it cloudy, I don't know. But so that is the wine piece. And then sugar. So refined white sugar is actually refined using cattle bone char, did your mind just blow? I think

Vance Crowe [00:39:17] It did. I I did not know that. That's, I mean, I know the animal products are in quote everything, but when you actually break it down and you're like, is it in that? And you'd be like, I doubt it. It is just sugar.

Alpha Gal Syndrome [00:39:28] So

Vance Crowe [00:39:29] That, that is pretty mind blowing. Yes.

Alpha Gal Syndrome [00:39:30] So that was another, I mean that was actually one of the last things that I realized I was reacting to. I had no idea about sugar. And we had gone on a road trip several years ago to Canada and I was in heaven because I, in Montreal there were gluten-free vegan bakeries and you know, they catered to food allergies like, no, no other place I had ever been to. But I got super sick and I'm like, what in the hell am I reacting to? Like I had been so careful, but I am pretty certain that it was sugar. And I've, we've seen that even a lot of people in the vegan community have no idea that sugar is an issue. That's

Vance Crowe [00:40:07] So interesting because you know, you see these things where it's like vegan sugar and you're like rolling your eyes 'cause you're like, oh my God, what are you, is there really a question? Were you grinding up sheep to put in here? It never crossed my mind that it could be a part of the the processing.

Alpha Gal Syndrome [00:40:23] Yeah. I mean it's crazy. And I remember seeing that years ago, there's a brand and it said bone char free on the label and I did the same thing you did Vance. I was like, what? Why would there be bone char? You know, it's almost like the McRib, or not the McRib, but chicken with rib meat. Like, I don't know why that always like grossed out GM

Vance Crowe [00:40:42] Free salt. Yeah. It's like,

Alpha Gal Syndrome [00:40:44] Right. It's like, oh my god, what is happening here? But it's a real, it is a real, real issue. And not, again, not everyone's reactive to that, but it, it definitely is a problem.

Vance Crowe [00:40:56] So one of the thoughts that came up as I was watching this and I got this like nice warm feeling when I found these videos and there was a doctor there and they were swirling around the little vial and they were wearing a lab coat. It, it, I do have to say that I have, I had, I don't know, I feel like you guys are telling me the truth, but in the back of my mind, you know how like everybody blames these problems that they have that are obscure and they're like, oh they have Lyme's disease. Right? Because there is no test for Lyme's disease. You can't say for sure whether somebody has it or not. And so they can kind of take this conglomeration of symptoms and put them in there to know now that there's like a physical test for this has got to be a major relief in the sense that you can say, here it is right here. Here's the, the thing that shows that I have this. Does it feel that way to you that that the fact that there's a test that can prove yes or no, that you have it, does it make you feel more confident in the things that were going on with you while you were sick?

Alpha Gal Syndrome [00:42:01] Well, I have to say it does for me, my test came back positive and, and I'm gonna let Candace tell you about her testing. But, but for me, I, you know, because there have been moments where people have questioned whether I'm telling the truth. One of those was I was on a cruise ship shortly after my diagnosis and I started having a reaction and I thought I was being vigilant. Like I, I, I was talking, I let everybody know ahead of time about my allergy. I had already been researching at that point, knew I couldn't have gelatin. There was a lot I still didn't know about where mammal can hide. But I woke up in the middle of the night 'cause there is that delay and I knew I was having a, a reaction, but it hadn't been anything that I couldn't control at that point. So I went up top deck and I was, you know, getting some cold water and fresh air and, and a crew member came over. 'cause my, i, I sat down 'cause I started to feel like I was gonna pass out and he came over and he was just like, we're we're going down to the medical office. And I was like, no, we are not, because that's where you catch Norovirus. Like I don't go to medical offices on cruise ship, but I let him take me. And when I was down there, the doctor and the nurse who weren't happy about being woken up anyway because it's the middle of the night, they didn't believe me that I was having a reaction to something I hadn't known that I had consumed. You know, I was telling 'em it's a red meat allergy. They're like, well did you eat red meat? I'm like, no, but I must have had exposure to it. They didn't believe me, but I, I do, I have this test. So I felt like I could say yes I do. And so when they took my vital signs, they're like, oh yeah, you're having a full anaphylactic reaction.

Alpha Gal Syndrome [00:43:33] We better do something about that. And they did. They did. They took care of me in the end, but they didn't believe me. And it's infuriating. So I, I do have that test, but I'll let Candice tell you about. Yeah. And I, you know, I do think that there are some similarities with Lyme being that not every test comes back positive. Yes. And there can be a clinical diagnosis from, you know, the immunologist based off of if you eliminate it and then you reintroduce it and you have a reaction that actually tells them more than the test does. So that's what I was saying before, the numbers really don't signify the severity of your reaction based on if your numbers are super elevated or whatnot. So that I do think it's a yes and no answer because even with the diagnosis, there are still people, you know, be it family members that wanna say, oh you're not having a reaction, it's anxiety or you know, or the ER doctors that are like, what did you say you have? Like I've never heard of that. You know, it's like you're constantly having to validate like, but I do have this. And so I think that is why we're so passionate about raising awareness and we are really, really grateful that you allowed us to, you know, spend time with you and talk about this because it, we need the education among all people, especially our medical professionals, to be able to understand how severe this allergy really can be for people.

Vance Crowe [00:45:02] Yeah. It just dawned on me that it's entirely possible there are a lot of people that have had that Lyme's disease diagnosis that actually have Alpha Gal.

Alpha Gal Syndrome [00:45:11] Yeah. Yes. And that was what, when we, when we were talking to the, we're just, we're just blowing your mind all over the place here today. Well, and that's when we talked to the last podcast that we were on the Tick bootcamp, you know, they strictly speak to people with Lyme disease and that was a huge thing for them is that they talk to people, they've talked to 'em for years that have been suffering even after being, you know, treated be it with traditional antibiotics or doing a combination protocol with supplements and they're still really sick. And you know, one of the guys was like, what if it's because of what they're taking? You know, there's gelatin and gel caps and if you're still e you know, if your supplements could be killing you, you know, it's like they could be, or the antibiotic that's in a gel cap or there's so many animal derived ingredients and medications specifically and people may think, you know, I'm taking this thing to help me and it's actually hurting. So I'm really curious to see, you know, as the Lyme community even hears about more about this and if they get tested, how it might improve, you know, if, if a lot of them truly are positive. Yeah,

Vance Crowe [00:46:27] It was in, it was interesting like that I thought this must be brand new. But as I was going and doing reading like this is, people have known about this for at least five years. I found videos going back on YouTube that far and even longer. But it seems to have hit mainstream awareness a lot more in the last, I don't know, three to four months.

Alpha Gal Syndrome [00:46:48] Yeah, it's, I, I think Debbie, what did I think it was discovered 10 years ago. So it is, it's still really new. And I think because of what we talked about before with just this huge influx of ticks, you know, especially as, I don't know, I think this time of year people are seeing more and more the rise in ticks and it's becoming more front news, you know?

Vance Crowe [00:47:16] So one of the things I like about what you guys are doing is that you are empowering people to react to the world that they are living in. Right? Like the guides and the things like that. But you've also mentioned about labeling and you know, the differences. So in what way are you thinking, Hey, I need to change and in what ways are you hoping or blowing oxygen on the world changing? Do you, do you have changes that you wanna see in the wider world?

Alpha Gal Syndrome [00:47:45] Well, we would love to see labeling, but you know, that's not gonna happen until we continue to increase awareness. Like awareness has to, it has to be, you know, worldwide here and increased onto an exponential level before anyone's even gonna talk about that. And we also need to increase funding for research for Alpha-Gal. 'cause there aren't a lot of sources for that. And there are people doing the research here, which it's starting the ball rolling, right? And so it'd be great if to get labeling. Yeah. And that's, I would say that's like, one of the things that Debbie and I really are focusing on right now is we're hoping to launch something that will help with the funding of AlphaGo research. And because we don't have a certain number of positive tests, that's where the labeling is not happening. You know, the legi legislative isn't going to happen until there's a certain number that they see as critical to do something different. So we're hoping to do that. And I know that there is also, like the tick-borne working group I think is, is working legislatively to try to get more research into the hands of Congress and all of those things. So we're trying to do the grassroots stuff right now so that hopefully it will trickle up to that. But we, you know, I I think we've gotta focus on where we can in the moment and that's raising awareness and hopefully increasing the funding for Dr. Scott Commons at UNC.

Alpha Gal Syndrome [00:49:21] 'cause he's the main researcher. But we also need, you know, I think if people are questioning, get the test Yeah. You know, have, be tested and know for sure. So

Vance Crowe [00:49:31] Let's, let's talk about that. If somebody is listening to this and they're like, my God I've had all sorts of GI issues and joint issues, what is the steps that they take to, to figure out if this is something that happened to them?

Alpha Gal Syndrome [00:49:46] I think really all you have to do is go to an allergist and ask for a test. And truthfully, my allergist couldn't get me in fast enough. So I called my PCP and I said, can you do the blood draw for this and you know, and do the test for this? And they said, as long as we've got the order from your allergist. Absolutely. So I did, I just dropped in. I didn't even have to see a doctor at that point. I just dropped in for the blood test and it was that easy. And going back to something Candace said about the Lyme community, you know, so many of our symptoms overlap there and like, so much so that I've had at least three Lyme panels done thinking that I had Lyme disease. And so for so many of those people who are continuing to have symptoms, even though they're being treated for Lyme, if they're still consuming meat and this is an alpha-gal issue, you know, it, it could be that the symptoms are entirely alpha-gal or, or at least partially alpha-gal, if you, the symptoms present differently for every person and in such different ways, you know, there are people who experience only the GI issues and so if your GI issues are ongoing and you don't have a diagnosis, just ask for the test. Yeah. And I would say too, for anyone that's listening and that wants to look into the test on the alpha gal information.org page, there's a dropdown bar that says diagnosis and testing. So it's, it's kind of critical to know that exact test to take to your doctor because there is an a deficiency in alpha galactose, which is actually Fabry disease and some practitioners will send for the wrong test.

Alpha Gal Syndrome [00:51:27] So it is very important to know to, to ask them for the specific Alpha Gal Syndrome test, not the deficiency test.

Vance Crowe [00:51:37] So last question, and you mentioned having a food psychologist. I would imagine that if you get this diagnosis, there's gotta be some level of mourning, right? Like I know, and, and I'm, I mean that, like if all of a sudden I couldn't participate in eating steak or burgers or there was some large change you can say like, ah, I'm gonna deal with it. Was there a level of mourning and is that something that Yeah. People are, are working on to, to try and get past?

Alpha Gal Syndrome [00:52:08] Oh, absolutely. In fact, I I think we still experience this sometimes even though we're trying to reinvent the way we eat and to a way that makes us happy. But if my husband brings home like a coconut cake and there's dairy in it and my whole family can eat it, like, it's hard not to go pout about it, you know, because it's, it's hard to give up these things that you love. Bacon. I had not one but two shirts that declare my love for bacon that I owned prior to this diagnosis. It's, it's still sad. And, and Turkey bacon is fine. It's, you know, it's fine. It's not bacon.

Vance Crowe [00:52:46] When it's not bacon, it's not bacon. So, I mean, I think it's not really that good. You're not missing much. I wouldn't

Alpha Gal Syndrome [00:52:53] Oh, thanks. No. So I think the psychiatrist, the psychology, the mental health piece of this is so important because you are, you're not only asked to give up the food and products that you love, like dove soap or you know, laundry detergent or things that you, that are part of your daily lifestyle. Giving those up and then dealing with giving 'em up and feeling like a burden to your family and feeling like the medical professionals don't believe you and the anxiety that accompanies, you know, waiting for a reaction after you've had a meal. You know, not sure if you're gonna wake up in the middle of the night sleeping with your EpiPen next to you. There are so many places that this is depressing and can cause anxiety and, and so the mental health piece of this is huge. Yeah. And I think that there's so many of us, especially, you know, I'm speaking from my own experience having anaphylaxis. A lot of times it's traumatic, it's a traumatic event. And like I'm doing EMDR therapy right now and it's helped tremendously. What is that? So it's an eye movement therapy, so it actually helps retrain your brain in a specific, like from a specific memory that is traumatic. So it helps a lot with PTSD and it actually retrains you to have a positive thought process behind that certain memory. So, I mean, it's really fascinating. I've, I'm open to trying, you know, whatever it is I need to on, especially for my mental health, and I've done traditional therapy, but this one was recommended specifically for PTSD because it is, you have that, you do end up developing that.

Alpha Gal Syndrome [00:54:38] And like Debbie was saying, you, you're, you don't wanna live your life anticipating a reaction, but you kind of subconsciously do. And for me, you know, I was a stay at home mom for, gosh, 18 years almost. And this happened, I guess maybe the 16th year. And I loved being by myself. And it, it was really hard for me to be by myself after I had these very severe reactions where it's like, what would happen if I almost pass out by myself? And I think people, you can get caught in that, and it's terrifying. So I think the mental health piece of this is not talked about enough because it can be, you know, more minimal and it's just, you know, some people are a little bit anxious or what whatnot to something that's more severe and you don't, you don't realize, like I said, I think you get into this kind of subconscious way of living that you don't realize how much you have to be fixated on every movement that you make. Like, I can't even be around it cooking. A lot of people can't be around the fumes of it, or it'll make me dizzy in my blood pressure tank. So it's thinking about like, how am I gonna be when I walk into this store or this restaurant or, you know, it's like your every movement, it can be consuming. So how do you navigate and cope with that? Like, I think that it's very important for people to talk about,

Vance Crowe [00:56:02] Well, you two are vibrant, joyful, I think resilient people. I, I, I, I feel a comradery with you from the mango allergy that I had and can only imagine what it would be like accelerated on the scale that you're at. So tell people how to get ahold of you and what you guys are working on, because I think that your vibrancy here is going to be way different and, and just as important as any medical intervention.

Alpha Gal Syndrome [00:56:32] Go ahead, Deb. Oh, okay. Thank you Vance. We appreciate that. Yeah, thank you. That was, it's so kind of you to say, I love the comradery piece. So you can find us on Instagram at two Alpha Gals, and that's where we are posting most of our stuff right now. Our, our tips and tricks and, and also on Facebook at to Alpha Gals. And we are getting ready to launch our new website. We have our website to alpha gals.com, where we started our blog, but we've been working all summer on getting this up and running to, to be more informative and build this community out so that we can, we can find ways to live a joy and we can raise awareness and build this community and, and, and really make some change.

Vance Crowe [00:57:12] And when it's two Alpha Gals, is it the number two? And then Alpha Gals, thank

Alpha Gal Syndrome [00:57:17] You for clarifying. No, the, the, the word spelled out. TWO Alpha Gals.

Vance Crowe [00:57:24] Great. Well, Debbie Nichols, Candace Mathis, thank you so much for coming on. Terrifying all of us. But more than that for sharing your joy. I mean, like the smiles on your faces, the, the vibrancy that you bring to this conversation, I think is probably one of the most important things people can do when, when they're facing some major change in their lives like this. So thank you very much for joining.

Alpha Gal Syndrome [00:57:49] Thank you for having us. Yes. We are so appreciative. And hopefully we can talk again soon.

Vance Crowe [00:57:55] Absolutely. You guys can come on and tell me how the progress goes.