Episode 70: Minisode - Two Alpha Gals LIVE at FAACT Summit

In this episode, Erica interviews Debbie and Candice of Two Alpha Gals. These "gals" are about the sweetest nicest smartest kindest women around. And they both happen to have Alpha-Gal Syndrome. This means they both can't have mammalian meat - like beef or pork - or animal by-products like dairy or gelatin. Heck, they can't even have red algae (not because it's a meat, but you'll have to listen to the episode to find out why). We met the two gals at the FAACT Summit and we got to know them a little better and asked them about their new foundation, and what it's really like to live with AGS! 

"We’re using our journey with alpha-gal syndrome to seek new and exciting ways to live with our diagnosis without sacrificing JOY. " - Two Alpha Gals

RESOURCES

Two Alpha Gals

Alpha Gal Foundation

CDC - Alpha Gal 

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Transcript

Erica [00:00:00]:
All right, do you guys just want to introduce yourselves?

Candice Mathis [00:00:02]:
Yeah, sure. I'm Candice Mathis.

Debbie Nichols [00:00:05]:
And I'm Debbie Nichols. And we are together, two Alpha Gals and also representing the Alpha Gal Foundation.

Erica [00:00:11]:
I love it. So tell me a little bit about the Alpha Gal Foundation.

Candice Mathis [00:00:14]:
All right, so it is our nonprofit that we started last year, and we are on a mission to continue educating the public, providers, anyone affected with Alpha Gal syndrome. And we're super excited. We were. We started to become involved in legislation last year, year in Virginia, and we now have a federal bill in front of Congress to make Alpha gal the 10th major food allergen. And I'm like, we're so funny.

Erica [00:00:40]:
So we have all these buttons that say 10. So we're really trying to focus on, is Alpha Gal part of this allergy family that we talk about? Just like how we talk about gluten, you know, it's not part of the top nine. Can Alpha Gal be 10? I know that there's been similar legislation trying to be passed for gluten as well. And I think that this is just, like, really fantastic that we're moving. Moving towards this concept of inclusion for other allergens as well, because I believe that everything should be labeled. I'm for food transparency overall. Yeah. So I think it's fantastic for your work.

Erica [00:01:14]:
Tell us a little bit about how you got diagnosed with Alpha Gal and how it impacts your daily life.

Debbie Nichols [00:01:19]:
Oh, sure. How much time do you have? So Candace and I have each been sick, I think, for probably 15, 16, 17 years, something like that. But we were not diagnosed until 2019 when we were new friends. And Candace actually got very ill, and she needed someone to come and stay with her. And I had just moved to the area, so I hadn't gone back to work yet, so I would just go and sit with her. We were becoming fast friends when her husband was at work. But I was also recognizing that I had a lot of similar symptoms as to what she was going through. But you don't wanna be that friend who's like, oh, I have that.

Debbie Nichols [00:01:55]:
I have that too. But after Candice got her Alpha Gal diagnosis, I immediately went and asked for a test, and I was also positive. And so we thought that that was probably the universe telling us we to do something about it, that we were diagnosed so closely and for this what we thought at the time was a rare condition.

Candice Mathis [00:02:15]:
Yeah. Because we knew no one else with it at the time.

Erica [00:02:18]:
So how was your diagnosis process?

Candice Mathis [00:02:21]:
So for me, I was acutely ill literally overnight in 2018. The end of 2018, and I had to be persistent. I was in and out of my pcp, ER cardiologist, all of these specialists, and I had to ask to be sent out to uva. So we're, you know, from Virginia, so the largest medical, you know, facility is in Charlottesville at uva. That took several months before I actually made it to uva.

Erica [00:02:54]:
But your persistence helped you get there.

Candice Mathis [00:02:57]:
Yes, yes. I mean, I was exhausted. I was, you know, not wanting to go to the doctor every single week that I had to because I knew I wasn't. No one had the answer for me. And it was. It was a really hard couple of months because no one was recognizing my anaphylaxis.

Erica [00:03:15]:
Yeah.

Candice Mathis [00:03:16]:
So.

Erica [00:03:17]:
So tell me a little bit about, without being too triggering for yourself, like, what were your symptoms when you were ingesting mammalian meat or mammalian products? Sure.

Debbie Nichols [00:03:30]:
So my symptoms actually started probably around 2008, 2009. And the first major symptom I had was actually extreme joint pain through my whole body. Like I was in my early 30s. I couldn't figure out why I couldn't get up off the bed when I was reading my little kids books. And so I would start that process of going to my pcp, and then they would send me to the specialist and they would tell me nothing was wrong. And then the brain fog came in and the GI symptoms, and it was the same thing. I would get sent to a specialist, was told nothing was wrong with me, and then after a while, you start to think it's maybe in your head, and you step away from that. And then my symptoms would get so bad that I'd restart the process.

Debbie Nichols [00:04:12]:
Whether it was GI or joint pain or brain fog or itching, I would get the itching and the fatigue and the malaise and all of that. And so, again, it was persistence. I mean, it was over a long period of time. And we hear this across our community that it takes years. We know a couple years ago, the average time to diagnosis was over seven years.

Erica [00:04:33]:
So it's really similar for something like celiac disease as well, that has a very similar, like, weight. Like, usually it's seven to 10 years to get diagnosed because there are so many systemic symptoms that, like, literally it could be anything. Right. So how did you finally figure out that it was Alpha Gal?

Candice Mathis [00:04:50]:
Well, my symptoms were a little different than Debbie's, so I also dealt with GI issues. I was bitten by the only tick I ever saw in 2007 on my toe and then started having GI symptoms a month later. But back then, in 2007, Alpha Gal wasn't even discovered, so they didn't link that it could possibly be that. But we now know that Alpha Gal has a GI variant only. And so I was diagnosed with other food allergies within that next year. But I had these random episodes in the middle of the night where I would almost pass out. I feel impending doom. I'd have massive GI distress, which I now know as anaphylaxis.

Candice Mathis [00:05:29]:
But back then, I didn't. And so I thought, oh, I've just, you know, ingested wheat or gluten. And then Fast forward to 2018. I was rebitten by something and never saw it. And so my symptoms became extremely, like, more severe. So I had, like, dizziness, I was seeing double. I was, you know, having rapid heart rate, super fatigued, GI stuff. But I rarely had hives and swelling.

Candice Mathis [00:05:55]:
So that's something that we're really passionate about telling people that anaphylaxis does not always present with hives and swelling. And it was often.

Erica [00:06:03]:
I mean, we had that presented again today.

Candice Mathis [00:06:05]:
Yeah.

Erica [00:06:06]:
That it's like anaphylaxis isn't, you know.

Candice Mathis [00:06:08]:
Right.

Erica [00:06:08]:
It don't. You don't always have to look for that.

Candice Mathis [00:06:10]:
Right. And women, it can be dismissed as anxiety, you know, and that has happened.

Erica [00:06:16]:
To all of us.

Candice Mathis [00:06:16]:
Right. And so I forgot what your first question was.

Erica [00:06:20]:
Oh, sorry. How you figured out it was mammalian.

Candice Mathis [00:06:25]:
I mean, really, it was the provider, like, at uva that was like, we're pretty sure we know what's wrong with you, because at that point, you didn't.

Erica [00:06:32]:
Know what Alpha Gal was before you got diagnosed with it.

Candice Mathis [00:06:35]:
I had heard about it just through my own reading of, like, what is wrong with me kind of situation, but I didn't go in there and say, I think I have this. Debbie had a different experience just because of my diagnosis.

Debbie Nichols [00:06:49]:
Well, and also in 2015, I went to a wedding where the main dish was steak. And that was my first time that I made the connection with red meats. That was, you know, several years before.

Candice Mathis [00:06:58]:
I'd even met Candace.

Debbie Nichols [00:06:59]:
And I was up in the night, and I. I mean, I was trying not to scream. Just sitting in the shower, trying to figure out why I had this pain that felt like my stomach was going to split open. Like, the pain itself, it wasn't just diarrhea or vomiting or anything. It was physical pain. And so I'd cut back on meat. Like, I was like, oh, maybe a steak is too hard for me to digest. But occasionally I would still have a hamburger or, you know, something taco, ground beef, whatever.

Candice Mathis [00:07:27]:
And.

Debbie Nichols [00:07:28]:
But then it all sort of started to come together and so then I figured out what I thought I had and went and asked for that specific test.

Erica [00:07:36]:
So. And to be clear, it's not just cow, it's also pork, it's also lamb.

Debbie Nichols [00:07:44]:
And it.

Candice Mathis [00:07:45]:
Can I.

Erica [00:07:46]:
And it's so much more than that.

Debbie Nichols [00:07:48]:
Yes, I was going to say, can I add to that? Because in addition, it can be any of the byproducts, which includes dairy, which for both of us are. We're anaphylactic to dairy. But then Also, you know, 60 to 75% of us react to byproducts and.

Erica [00:08:04]:
Medications like pre gelatinized starch is often a pork product.

Debbie Nichols [00:08:09]:
Right, right.

Candice Mathis [00:08:10]:
And to add carrageenan, which is a red algae. So this like throws, you know, a little wrench in the whole thing because it's not a mammal, but it has the alpha gal epitope. So we have to be really careful. You know, we, we gravitate to vegan certified products because of the lack of animal products in, in those, you know, items. But we also have to read for carrageenan or other red algae derivatives, which can be tricky, especially super tricky.

Erica [00:08:38]:
Yeah, yeah. That's so interesting. So how, what, you can eat poultry.

Candice Mathis [00:08:45]:
Yes, we can eat. Yes, if you choose to.

Debbie Nichols [00:08:49]:
That's right. And seafood too, that's generally safe for those of us that don't have a separate fish or shellfish allergy. So there's still a lot of options out there. It just.

Erica [00:08:59]:
Oh, for sure, for sure.

Debbie Nichols [00:09:01]:
The mammals.

Erica [00:09:02]:
Interesting. And then other. Any other weird things that you, I mean, you talked about carrageen and that's wild to me. I did not even know that myself. Are there any other weird things that you're like, don't you know that this is animal byproduct in it?

Candice Mathis [00:09:16]:
Yeah, I mean, I think for us one of the last kind of sneaky sources was sugar. And because a lot of refined white sugar is processed with cattle bone char, which makes it go from the natural brown color to white. And then, you know, there's also, like Debbie was saying, these byproducts. So you can have gelatin in your toilet pa. Hmm. You, you can also, you know, like water filtration systems can also have bone char. So there are certain, like bottled water that we can't filtrate it.

Erica [00:09:47]:
Interesting.

Candice Mathis [00:09:48]:
So it's kind of like those, those things that are not necessarily labeled because you're not going to flip around a toilet paper package and it's going to say gelatin because it doesn't have to. So. Right. Those are the things that I think we're trying, you know, to start with food of the whole transparency and labeling.

Erica [00:10:04]:
Absolutely.

Candice Mathis [00:10:05]:
And hopefully unlock, you know, other things.

Erica [00:10:08]:
So interesting. I'll let you leave it with your. What you want people to do. So what can people to do to help forward this cause that you guys have?

Debbie Nichols [00:10:18]:
Oh, thank you so much for asking. So I think a really big thing that's actually pretty easy to do is to reach out to your delegate and ask them to Support the bill 1178 to add Alpha Gal to the list of major allergens. And you can go to our website. You can go to twoalphagals.com t-w-o alphagals.com or the alphagalfoundation.org and there are links to be able to connect to a form letter and you can just submit that so that we have. We're flooding our legislators with this information on how bad we need transparency and labeling, specifically when it comes to Alpha Gal.

Candice Mathis [00:10:56]:
Yeah.

Erica [00:10:57]:
Amazing. Thank you so much for joining me today. I really appreciate it for the work that you're doing. It's incredible because I know that they represent so many unheard voices in Alpha Alpha Gal syndrome. So I know we wrote about it, one of the first ones in our magazine and we only wrote about it years ago because the editor has a husband with Alpha Gal and they live also live in Virginia, oddly enough, and ticks, man.

Candice Mathis [00:11:20]:
Yeah.

Erica [00:11:22]:
So I just. It's something that I've been super passionate about, like knowing more and getting more people to understand what Alpha Gal means. So to see you guys actually making systemic change is huge.

Candice Mathis [00:11:33]:
So we appreciate you. Yeah, thank you.

Erica [00:11:36]:
Awesome.