Two Alpha Gals
Building a Community of Support for People Suffering from Alpha-gal Syndrome
Alpha-gal syndrome (AGS) is an allergy to mammalian meat and meat byproducts that is spread by the Lone Star tick. It's often misdiagnosed, with symptoms ranging from severe stomach pain and brain fog, to anaphylactic shock. Perhaps even more than Lyme disease, there's a lack of awareness and support for those with AGS. Sometimes it can take 10 years or more before it's properly diagnosed!
But thanks to Debbie Nichols and Candice Matthis, the Two Alpha Gals, help is on the way! Their message is focused on the importance of social connection and community to help overcome the mental, emotional and physical challenges faced by alpha-gal sufferers.
Candice Matthis and Debbie Nichols started blogging as Two Alpha Gals after they were diagnosed with alpha-gal syndrome in 2018 and 2019. Since then, they’ve been sharing tips and tricks on navigating life while living with the condition they contracted from ticks that makes them allergic to mammal meat and mammal byproducts. In 2022, Two Alpha Gals launched their podcast, In the Tall Grass, where they address reinventing life. Additionally, they now offer several resource guides on living with alpha-gal syndrome, as well as workshops and an individualized six-week Food Allergy Mentorship Program. With appearances in NBC News, The Today Show, NPR, The Atlantic, and many other national and international podcasts and publications, Candice and Debbie continue to raise awareness of what it’s like to live with alpha-gal syndrome without sacrificing joy. Both women live with their families in the New River Valley of Virginia where they happily practice tick bite prevention in order to enjoy the beautiful outdoors.
Additional Information
- Two Alpha Gals Website
- A Tick Bite Made Them Allergic to Meat (The Atlantic)
- The Gals Go Shopping
- In The Tall Grass Podcast (Can be found on all major podcast platforms) Hosted on Spreaker
- Dr. Scott Commins | Common Questions with Dr. Commins
- Dr. Paige Freeman | Mental Health Series
- Dr. Sarah McGill | Gastro Intestinal (GI) Medicine Series
- Debbie & Candice | Alpha-Gal Syndrome | Instagram
- Two Alpha Gals | Facebook
- Two Alpha Gals | YouTube
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Transcript of the Interview
Mark at Insect Shield
All right, we're here today with Candice Matthis and Debbie Nichols, who are the Two Alpha Gals. And if you're not familiar with alpha gal itself, you're gonna learn a lot right now. So, really pleased to have both of you here today. Thanks for coming on our interview series.
Debbie Nichols
Thank you so much for having us.
Candice Matthis
Yeah, thank you.
Mark at Insect Shield
So you guys got together as a result of having alpha gal syndrome. Right? And you didn't know each other before that? Is that correct?
Debbie Nichols
Funny enough, we actually did know each other beforehand.
Mark at Insect Shield
Okay. And then you were lucky enough to get alpha gal!
Debbie Nichols
That's right!
Candice Matthis
Briefly, Debbie, and I actually met through a mutual friend, not quite a year prior to my acute onset of symptoms. So we were very new friends. So I would say, you know, that through that really daunting period for me over those few months, we became really close because I had I call Debbie, my first responder, we now kind of refer to each other as that. But I just felt very pulled to ask her to come help me when my husband had to go back to work, and I just couldn't get off the couch. So yeah, so we were very new friends, when all of that happened. Yeah.
Mark at Insect Shield
And so I guess we should say, alpha gal syndrome is an allergic reaction. And it's triggered by a sugar that is present in mammals. And it's carried by the Lone Star tick in this country. And it is probably carried by other types of ticks in other countries, because we know that people suffer from alpha gal in places like Australia, where they don't have the Lone Star tick, but it can be a debilitating disease, I guess, right. And it's hard to figure out that you have it. So first off, I guess let's talk about how you guys found out that you had it, and that will convey some of the difficulties around the symptoms, which can be quite varied. Right. I think you guys even said you Debbie had different manifestations of the allergy than Candice does. So do you want to talk a little bit about the long journey to actually find out that you had this syndrome?
Debbie Nichols
Sure. Candace, do you want to start since you found it first?
Candice Matthis
Sure. So I was actually bitten by a tick that I saw in 2007 when I was pregnant with my third child, and after that tick bite, about a month later, I started developing severe GI issues, went through loads of testing, and found out that I had a wheat allergy about six months later.
So cut out wheat, went gluten free, things started to get better. But over the years, things ebbed and flowed with that allergy where I felt like I had been contaminated. I'd get a lot of GI issues, diarrhea, I'd wake up in the middle of the night where my blood pressure would plummet. I’d feel like I was gonna pass out. But it was one of those things I could never pinpoint that it was due to that tick bite back then.
So it wasn't until 2018 that I started seeking out some deeper answers. And I saw a functional medicine doctor to do some more testing to see if we could get to the root cause of some of my food intolerances. And I was put on a barrage of supplements. I was taking about 11 a day, they were all in gel caps. They were all bovine and porcine derived.
And I woke up at 5am. Five days into this to the room spinning. I was seeing double. I felt like my brain was being shaken. I now know, from Dr. Commins, that what I was experiencing was anaphylaxis. But I had no idea that anaphylaxis looked like that, and it didn't look you know, it could look anything other than your throat closing and hives.
So that sent me on a two month spiral, if you will, like I ended up in the ER, at my PCP, cardiologist and I ended up having to request to be sent to the University of Virginia Medical Center, and a little did I know that Dr. Platts Mills is there but that was where I ended up thankfully.
So I was at his allergy clinic and I walked in and they said, based off of my symptoms, we are pretty sure we know what's wrong with you. So Debbie was the first one that I called because like I said just a minute ago, she was the one that when my husband had to get back to work, I had needed someone here with me, I was so fatigued, I felt really lightheaded all of the time. I was just flatlined, I went from being super active to flatlined overnight, and it was terrifying, I had no idea what was going on with me.
And so through that, you know, I called Debbie immediately when I left the office, and I was like, You're never gonna believe this. I have alpha gal syndrome. And so we started doing, you know, deep dive research on that whole drive home, my husband, I was like hitting him in the arm saying, Oh, my gosh, everything that I'm taking contains a mammal derived ingredient, everything I'm eating, you know, it was just, I knew it wasn't as black and white as cutting out red meat. Because of my gluten allergy, I knew that it was much deeper, and was in so much more than just my food. So I’ll let Debbie pick up from here.
Debbie Nichols
So I had been traveling a very similar journey. We didn't live in the area at the time, near Candice, but I was experiencing the GI symptoms. Another really big symptom for me was joint pain. I thought it was like early onset arthritis, you know, I was in my 30s. And I tell the story all the time, because I've got such a vivid memory of lying on my side, trying to read a book to my children, and like, not being able to get up because I was in so much pain in my joints.
And so I went through this cycle, evaluating those and the brain fog, and, you know, occasionally hives, but not that wasn't a primary symptom for me. And every time the doctors would tell me, I was fine, you know, you're fine, which it really wears on you, after a while, you'll get a bunch of professionals telling you, you're fine, and you know you're not and you start to think it's in your head, which is just a horrible mental place to be.
So I would quit [looking for answers]. And then until my symptoms got bad enough that I couldn't handle anymore. And I would go to a neurologist or immunologist or whoever would take me, I would beg to be tested for Lyme over and over again.
And, and then, you know, we moved to the area where Candice and I live now. And Candice and I became friends. And as she mentioned in her story, I got a lot of time with her when she wasn't feeling well at all. And I was starting to notice similarities. And you know, when you're around another sick person, you don't want to be like, Oh, I have that too.
Mark at Insect Shield
Like you do when you study psychology.
Debbie Nichols
Right, right. So when she did get her positive test, I was researching it on my own. And I was like, I think I have this and I went in to my immunologist who I'd seen you know, in the months prior. And I said, I need to be tested for this. And my test came back positive, I never saw a tick. So I think it's about 20 or 25% of people don't see a tick, but my test was positive for alpha gal. And so Candice and I took this, like super deep dive into what was going to make us feel better.
Mark at Insect Shield
Wow. That is something I mean, and it's something that a lot of people share, I think right? Probably, I mean, the people that you meet to through the work that you're doing, what percentage of those who have gone through this kind of arduous, you know, path of not knowing and go into different specialists? And them saying there's [nothing], I can't find anything.
Candice Matthis
I mean, I think it's the majority, I don't know the exact percentage, but just in the tickborne community as a whole I think it is, it takes a lot of people over 10 years to get proper diagnosis. And you know, and one thing that I was going to say about, you know, when I was tested and I, that functional medicine doctor ran a barrage of tests on me where it was, I had 23 vials of blood drawn in that first in that first meeting with her, you know, after I met with her and the alpha gal test is not a part of the tickborne panel. And so that was never even thought about.
So, you know, I think that's one of the things that Debbie and I really felt passionate about when we both got this diagnosis is we didn't know anyone else that had been diagnosed with alpha gal at that time. And we really wanted to help raise awareness and just share our experiences to help others hopefully not have to walk the road of suffering for so long. So yeah, I think the majority of people it takes a very long time. Hopefully that shifts.
Mark at Insect Shield
Right. Right. Absolutely. I mean, people when we talked to Dr. Bill Blackley on one of our interviews, and he said, you know, he knew of people, he had been through all the same stuff, you know, doctors say, I don't think anything's wrong, and so forth. But he said he found out about people that actually had surgeries on various… Was that true of one of you guys? Okay, so share a bit about that if you want.
Debbie Nichols
Well, I was so distraught over the GI symptoms, because they're not just like regular stomach pain. It's like, it would hurt so bad, I thought it was dying, I thought my stomach was splitting in half. And so I eventually had my gallbladder taken out to try to bring some relief. And it did bring a little bit of relief, but not to the level that cutting out meat does.
And I think you touched on something that makes a lot of these tick borne illnesses particularly complicated is that they don't look the same for everybody, you know. There's a complete lead GI variant of alpha gal syndrome. You know, Candice’s and mine look different one from the next and how we react to things looks different. And then with alpha gal syndrome, you factor in this, you know, two to 10 hour delay in response, which happens sometimes, but not all the time, it gets to be really complicated. So it's not that we want lots of people diagnosed with alpha gal syndrome, we just want to find the people out there who already have it. So we can tell them how good we feel now.
Mark at Insect Shield
Yeah, absolutely. I mean, this is kind of the biggest thing is for people that don't know. Right. So that's what's great about what you're doing, obviously, is trying to spread the awareness and you've gotten some good exposure.
So far, there was an article in The Atlantic. Is that right? Yeah. And a feature on the Today show, which is also awesome. And I think that's just what needs to we need more of that. And it seems like alpha gal, you know, I've been watching for it with Google Alerts to see who's talking about it. And that has increased quite a lot. I mean, over the past year, I think, you know, the news stories, some of it is a little bit sensationalistic, you know, but it's like, that's fine. All right. As long as people know about it. Great. So, yeah, I mean, so both of you. How long did it take, like, from when you first started having those symptoms to when you've got the diagnosis?
Debbie Nichols
Or may I think it's about 12 years?
Candice Matthis
Yeah, mine was around the same time too. It's interesting because Debbie, and I lived apart like we didn't know each other at the time. But we both started having symptoms around the same time. So that was like, 2007. For me, I think.
Debbie Nichols
Yeah. I just kind of associate it with when my kids were little, because I remember having to get babysitters to try to get to the doctor, you know,
Mark at Insect Shield
That particular part. I mean, when I heard that on one of your podcasts or whatever, that that was incredible to me to have kids, little kids and be dealing with this stuff is just beyond imagination. I think.
Debbie Nichols
It was challenging, for sure. But now, you know, as a mom of two teenagers, like I've raised little advocates, right? So they like if we're in a restaurant, and somebody doesn't take me seriously enough about my allergy, which does happen. Not always, sometimes. My daughter doesn't hesitate to be like, No, I'm sorry, I don't think you understand how serious this is. If you bring her something, and she's gonna have an anaphylactic reaction right here in your restaurant.
Candice Matthis
Yeah, I mean, I do. I think it's great. And I have three teenagers. And I mean, my kids - and I have anaphylactic reactions. Debbie has too, but for some reason I got the short end of the alpha gal stick. And not that I wish that on you, Debbie or anyone else. But last summer I was kind of in this flare because I also developed mast cell issues due to the tick borne diseases. So I got caught in this loop of having an anaphylactic episode almost every other week for six weeks and my daughter had to help me give an epi give me my epi pen my son had to drive me to the hospital because my husband was out of town you know.
I hate that they're having to go through it with us but at the same time I think that going through something like this with your family ultimately builds this, you know, compassion and resilience and something that I hope grows into something beautiful for them so they can be, you know, better advocates for themselves in all different situations, but also better caretakers for others. Because I think that has been something that Debbie and I have found in our own healing journey. That's another part of what we're doing with two alpha gals is, when we're serving this community, it actually adds to our healing. So I think, you know, we try to find the silver lining in all of it even though we don't want our kids faced with the traumatic event.
Mark at Insect Shield
That's really a good point. And I think a lot of people, you know, advocates may not have gone through alpha gal, but your kids really understand that. And so that helps to spread the awareness for anybody that they're in contact with.
So once you got together, how did you decide that you wanted to do something more you’re your experience? You know, fortunately, you guys are not wallflowers! You're not, you know, just hiding because you don't want to talk about what's going on. So that worked out nice. How did you decide to do more with it, like to start a website and so forth?
Debbie Nichols
Sure. Well, Candace, and I knew almost immediately once we both had our diagnosis, mine was in August of 2019. So it was a little bit after Candace, but we knew that this was so much more than as Candace said earlier, just not eating beef. Cutting out beef made me feel immediately better, but then I realized I was still being triggered by pork and other things.
So we, you know, we slowly cut out mammal meat, mammal products, and mammal byproducts. And I was doing so much better, you know, my stomach felt better. My, my brain was clear, which, you know, there was this one incident where I was sitting at the end of the driveway, and I wouldn't let myself get out of the car knew which mailbox was mine, but I couldn't recall the number on it. And that that is scary. Like, that is terrifying. I was like, you know, 40 years old thinking I have Alzheimer's.
And but that cleared up, you know, once I started giving these products up, but my family and I went on a Christmas vacation on a cruise ship that winter, and I had a reaction on the ship, I had, like, I done everything that I needed to do as far as informing the waitstaff and everyone in the kitchen about my allergy, and that it was severe. But somewhere I was contaminated.
And I woke up in the middle of the night, of course, hours after the fact and my stomach was unhappy, we'll just call it. And then I felt like this sudden feeling of panic, like I knew something was really wrong. My heart was racing. I was very flushed. And so I told my husband, I was gonna go up on top of the ship and just find some cold water to drink.
And when I was up there, I someone found me sitting there like trying to calm down and cool off and get this under control. And it was a worker there on the ship, and he insisted that we go down to the medical office. But once we got there, which, by the way, is my worst nightmare being on the medical office of a cruise ship, because I think norovirus and everything, but when we got there, the medical staff, aside from being annoyed that I woke them up in the middle of the night. They didn't believe me, they didn't believe me that I had an allergy to meat that I hadn't actually consumed.
And I was trying to explain because there's gelatin and there's all sorts of byproducts that can trigger a reaction. And then they took my vitals and realized I was having an anaphylactic reaction and they treated it appropriately, appropriately at that point. But I think I called Candace before I even got off the ship, definitely before I left port, and I was like, people need to know about this. Like, we're not safe living in the world with the lack of information that we have right now. And so, over the last couple of years, we've tried to figure out how to best do that. I feel like we're finally on a roll.
Candice Matthis
Yeah, we just we really wanted to just share our experiences and the lifestyle piece of this, like how do you navigate the ins and outs of daily life? That was something that we couldn't find anything on. And you know, there's a great like, we love the alphagalinformation.org website, like it's chock full of research and so much information, but we wanted to kind of do, you know, like hone in more on the lifestyle side of this, like, you know, and help people in that way because it can be you know, like you were saying earlier, Mark, that there's such a wide range of symptoms and all of that, like some people are more severe than others and you know, so it can just get very, very complex in how to navigate all of the things from tradition. You know, from being around family, just all of that. So we really, it started to, you know, it started to grow from just as blogging about our experiences, but we're just grateful that we, that we stepped into it.
Mark at Insect Shield
Well, like really, you know, there's kind of an orientation that you guys have. It's more social, I guess, you might say, or community oriented, and kind of trying to build that up. And then I think you've, you've stressed that a couple places that I saw, that can help your kind of mental health around this illness, you know,
It's just a big component. I mean, that, you know, sort of the traditional medical, whatever, establishment is not necessarily going to recognize that, you know, so how do you deal with the other emotional [side of the illness], all that, you know, that goes along with this disease?
Debbie Nichols
Sure. Well, I think a big part of it, you said it was, it was important for us to build a community because living with alpha gal syndrome, or really other food allergies, or, or chronic disease can be a very lonely place, you know, and so it was really I mean, Candice, and I feel really lucky to have each other to sort of walk this path and figure it out together. But and we know not everybody does.
And so we just wanted to build this community up. So we can all find each other and encourage each other because your mental health takes a big hit. Especially after you know, going through years of being told that you're fine. It's all in your head, nothing's wrong with you. And then, you know, I dealt a lot with and, Candice too, with feeling like I couldn't be the mom that my kids needed, you know, I was tired all the time. And I didn't feel good. And I wasn't up to going hiking or any of that.
And so I mean, it really wears on you. So Candace, and I do try to focus a lot on the mental health piece of this, we've connected with some, you know, our allergy informed mental health professionals and trying to share what we're doing to help ourselves such as you know, tapping or meditating or being outside. Just or talking to someone that's, that's a big one. For me, just having somebody to talk to about it. So.
Candice Matthis
It's a huge, you know, I think, Debbie and I have been huge mental health proponents. For years, we've done our own, you know, journeys of introspection, and therapy, and all of these things. And that was something that we talked about a lot in the beginning of this is, it's so easy when you are so sick, to be in the dark, and to just perpetuate that. What helps you step out of that? And I would tell Debbie, I'm a huge Brene Brown lover, and her books, you know, I read them almost 10 years ago, and that was kind of my first step into thinking a little bit deeper, and then taking the step to actually go to therapy and get vulnerable and all of that stuff. And we wanted to bring light to that to make it you know, is such an important piece. When you're struggling with a chronic condition or a severe allergic reaction, I experienced major PTSD after my anaphylactic episodes that I went through a form of therapy called EMDR for about a year, to help me with my anxiety I had, I had really bad anxiety about being alone, because I was scared. I was going to react when I was by myself. And so I think it's just the more we can talk about it, the more we can normalize it, and hopefully other people will be set on to the path to ultimately find joy, living with whatever condition it is,
Mark at Insect Shield
Yeah, that is so cool. I think there was you've interviewed a psychologist or a Dr. Freeman? And what was the idea about interviewing her about alpha gal? Or how that might work?
Candice Matthis
Well, we came across her online. And I think that was the first time that I had ever seen a mental health professional that focused on food allergy patients, and I was like, Oh, my gosh, it was her. And then we've also befriended Tamara Hubbard, who started the Food Allergy counselor directory.
So I just I think, from all of you know, Debbie and I's work, are personally we were just floored that this was actually a thing and we were like, we have to share this, like, you know, more people need to know that this resource exists and that there are mental health professionals that solely focus on this community because it is, you know, it is so like I said, it's just it's so complex for people because you're dealing and like Debbie and I talked about, you know, you're dealing with a delayed reaction component too which leads to anxiety itself.
If you are eating something new, are you scared? You know you're waiting, like with your fingers crossed that you're not going to have a reaction. So that was kind of how it unfolded. And then Debbie, we emailed her and she emailed us right back. And so yeah, it just again, it was like one of those things where we're like, we've got to just keep going with the doors opening like what we're supposed to do.
Mark at Insect Shield
Right. That's great. And so you've got some videos on YouTube or where you ask her questions. Is that right?
Debbie Nichols
That's right. Yeah, we we've got a couple of video series. One of them is filmed with Dr. Freeman answering mental health questions. And we're going to be having her on our podcast here coming up in a couple of weeks also. And she is just she's brilliant. And she, she dove right into alpha gal information when we shared with her our story.
And so we've got Dr. Freeman's video series, we have Dr. Commins’s video series as well to answer medical questions. And then we're also we've, I think we've launched the first one right? Of Dr. Miguel down at UNC Chapel Hill. She's the gastroenterologist. She's discovered a link between her patients who have been diagnosed with IBS to having alpha gal syndrome much of the time so because you know, it can just look like IBS.
Mark at Insect Shield
Yeah, that's incredible. I mean, all these things being kind of linked together. And a lot of it is the result of just sort of lack of awareness. I mean, even in the medical community, right, because they're not kind of connected.
Debbie Nichols
Yes, that's very true.
Mark at Insect Shield
Well, cool. What other things are you guys doing in terms of community? I was gonna ask you about how social media is working for you? Do you feel like there are things that you wish you could do you know, more, or this social media fill all your desires for me? For communication, you know, you can reach people around the world, but some shortcomings, I was just curious, like, in terms of community,
Candice Matthis
Yeah. I mean, we so we started, like, we have a newsletter that we send out a couple of times a month. And that's awesome. So we do kind of some exclusives to our newsletter subscribers. And then yeah, like, I'm doing our social media right now. I love Instagram, I was a huge foodie before Two Alpha Gals. And I actually did like some wheat, gluten free wheat free cooking classes with friends in the area. And so I love posting pictures of food.
Debbie Nichols
I love seeing the pictures of food!
Candice Matthis
So that part of it kind of fills my creative, like artistic side, like I really enjoy doing that. But I'm sure there are shortcomings to it. I have no idea what like the algorithms are and all of these kind of intricacies of social media. I wish that I did. Because clearly, we would love to reach more and more people. We're just kind of plugging away at it as we go. And just putting out resources and you know, things that are just helpful or we hope are helpful for people. And we have so many ideas clearly. I mean, we're always, we're always meeting and trying to decide what takes top priority.
Mark at Insect Shield
Yeah. That's a big part of it. Sure.
Candice Matthis
So yeah, so we just we do I mean, I try to engage with everyone that messages us. And we just our hope is that our community just keeps growing. And maybe it morphs into something bigger. I mean, we, you know, I don't know, we just have to keep taking the next step.
Mark at Insect Shield
And you may find other people that are fired up, that have other skill sets, you know, that want to contribute. Become Three Alpha Gals, or Four. So yeah, that's really cool. Yeah, so I don't know. Do you have any other thoughts on like, what you'd like to do for the future? I mean, do you guys think about that at all? Like, what would it look like, you know, if you could wave a wand, what would you do in the next five years?
Debbie Nichols
Well, I think one of the really big things that we’d like to do that we haven't done yet is have some influence over labeling. So it's very hard to navigate shopping for food, or body products or health products or anything because a lot of us including Candice and I react to, you know, body soap and shampoo and liquid, you know, hand soap and detergent and things like that. So, and they don't have to publicize where their sources are coming from.
So I would love to have an impact on that. And I think a lot of that will be our community growing so that our voice gets bigger, so that it does get easier because even some vegan food is not safe for us. And, you know, some vegan labeling is a little bit, you know, not everything that says it's vegan is certified vegan. And then additionally, you know, there's been some studies that show that some other vegan things such as carrageenan, and actually contain alpha gal epitope and can trigger a reaction. So I think labeling would be the big one. The other one I would have said was our podcast, but we already started that.
Candice Matthis
Check that box. Yeah. And I would add probably like, I mean, we both talk about doing more speaking engagements, like we love to talk, we've had the opportunity and honor to speak as keynote speakers at the Alpha Gal Symposium last year in Martinsville, Virginia. And we love we just love sharing, I mean, clearly why we started the podcast, Debbie. Debbie is like, she's a fantastic writer. And yes, and I'm like, I just want to talk. Let me just talk. So I don't know, like we've talked about that. I mean, I would, I don't know anywhere from the medical community to maybe larger corporations or brands just to understand more of the human connection and how it's, it's necessary to understand the intricacies of a chronic condition.
Debbie Nichols
And our community grows every time we do anything like that, which is really neat. We've made such great connections, and we just feel like this is what we're, we're drawn to right now. Our purpose right now is to bring awareness and grow this community.
Mark at Insect Shield
That's so great. I really admire what you guys are doing. And I think you're doing a great job. We'd love to have you back again sometime. Find out what else was going on. Lately, I think. Yeah. So anyway, we've been talking to Debbie Nichols and Candice Matthis. The Two Alpha Gals who have their website at twoalphagals.com and we'll put all the links below the interview here. Thank you so much for being here today. Really enjoyed talking to you both.
Debbie Nichols
Thank you so much.
Candice Matthis
Thank you, Mark.