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Autoimmune Journey

In this episode, company CEO Bryan Menell interviews his co-founder Jason Stoddard about his journey with multiple autoimmune conditions.

Bryan: So Jason, take us back to a time when you first started noticing things weren’t right, you just weren’t feeling good. Like what were the symptoms, what was happening?

Jason: So we go back in the way way back machine. As a kid, I was allergic to everything. I was allergic to tomatoes, chocolate, a cola, bean, corn like pretty much you name it. I was allergic to it and took shots on the daily and eventually, you know, in air quotes, I grew out of it. And then fast forward to high school, I started getting dropped from teams because I could not maintain weight like I could eat a lot of calories, a lot of protein. I would work out and I was the quintessential definition of an ectomorph and like I just could not gain weight and didn’t realize why. And my version of normal back then was like, I maybe went to the bathroom once or twice a week, which to me was normal. So fast forward to about 2008 and that’s when I really started exhibiting crazy stuff. I would have cramping so bad both in my lower left and lower right abdomen, that I couldn’t leave the house. I couldn’t leave bed, I had a colonoscopy and whereas everything came back relatively normal, uh, there was inflammation and swelling that they couldn’t really explain. I was urinating blood and so they did an MRI and they looked at my kidneys and my kidneys were inflamed. There were times when I would go to the ER in 2008, roundabout the summer of 2008, thinking I had a kidney stone and it was just something not unlike a flare up. And all of this eventually passed. And then in 2011 I woke up one day and had head to toe hives. And at the time I didn’t have health insurance. So I thought, okay, so I’m going to take a bath with some of Aveno bath product and everything’s going to be fine. And then the angioedema or the, you know, the swelling started and I got swelling while having hives in my hands and my feet and my lips to the point where I couldn’t put on shoes. My hands were really uncomfortable. I also remember as a kid in high school, whenever I would weed eat our yard, the vibration of the weed eater would cause my hands to swell and I would get, I would get something that looked like hives, but it was these red spots. But again, all of this was so episodic and fragmented, kind of in my day to day life. I just thought that this was a normal part of being me. But back to 2011, I started going to doctors, you know at one point I had spent something close to like $15,000 seeing doctors getting passed around to an immunologist, a specialist, or internal medicine people. And none of them, you know, they would do diagnostic testing and they would all come back and say, hey, you know, nothing’s wrong with you.

Bryan: Did you know anybody that had gone through something similar like this before, that great advice for you?

Jason: So slowly but surely, when I started to have to cancel my day and cancel meetings, I was, I would talk to people about it. At the time my fiance now wife Cynthia, she was talking to people about it as well. They all suggested that I go see this guy locally, that his reputation was for supplementing treatment or a complimentary lifestyle treatment around nutrition and supplements for cancer patients. His name is Glen Luepnitz. He’s a phd. He’s a clinical dietitian. So I made an appointment with him. He was a cash only provider. I made an appointment with him. And I had a number of people that had gone to see him that had recommended him. And they were kind enough to get me in on a Friday so he would open up Fridays. And so I go in and he took one look at me and he says, this is autoimmune. And I said, well, how do you know? And he’s like, well, because it presents this way, even though yours is slightly expressed differently, it presents this way. So, we did some genomic testing. He did a couple of other diagnostic testing and it came back that I had a double marker on two alleles for what they’re going to call generalized auto immune. Dr Luepnitz prescribed me a supplement stack and they said that whereas for the next couple of weeks, pretty much anything would trigger inflammation that I would do well to live off of water, meat and vegetables and to avoid all gluten. And so I started wading into seeing everything with new eyes. And once I had that information that arms me with going out and finding other people that were living this way. So the first community I found where the Celiacs, that’s when the real work started. Because the tricky thing about autoimmune or any sort of food allergy, it takes a long time for you to heal. You get this diagnosis and you think, okay, well suddenly, like next week everything’s gonna change and it’s gonna be great and Hunky Dory and it’s not. And you have no way to attribute, did I do something wrong like am I actually allergic to this and am I actually allergic to that. Does this trigger, this, does this trigger that. And you just don’t know.

Bryan: How long did it take before you started feeling a little bit better? And then how long before you felt like you were back to your normal self?

Jason: It took about six months. A little bit better is relative, but I stopped having hives after about a month of making this change in terms of diet, the hives would go the, the intermittent swelling, the angioedema left and all of that basically went away after about six months. And then I started having regular bowel movements once a day or even twice a day after about 18 months. And that was kind of insane to me. Like, you know, imagine you go a week and you go to the bathroom twice maybe. And that’s your normal and then all of a sudden everything changed. My ability to gain weight changed. My energy level changed. I no longer had weird brain fog, investment of time and the investment of money, whether it was reading something on the internet or whether it was just going to the grocery store, you know, and thank God I’m married to a saint because she was really patient and you know, fundamentally she changed her life to support me.

Bryan: So when you come across people today, and I know you and I come across people like this, who are in the phase where you were in 2011, still trying to figure it out. “I don’t know what’s wrong with me?” What advice do you have for folks that are just beginning to figure out that something is wrong? They’re not exactly sure what. My blood tests are kind of normal. My internal scans are normal and my doctor says everything’s normal and don’t know where to turn.

Jason: Well, the first thing that I would say is that you, you’re not crazy to question everything and that when you go to a provider and you’re taught your whole life to trust and respect the doctor, and I’m not disparaging doctors, doctors look at this from a completely different lens than someone that has autoimmune. Whether it’s generalized autoimmune or it’s a specific condition or disease. What I would say is, you know, I would question everything about your life. I would question what you eat. I would question how you sleep. I would question how you hydrate. I would question how you move, and start with nutrition. You know, nutrition is absolutely, totally fundamental. When you go to a provider, don’t have any expectations because that’s the most emotionally crippling thing. You go to someone that you trust and that you’ve been taught to respect and they tell you, they infer that you’re crazy. They infer that what is ever is going on, that it’s in your mind and in, and oftentimes they will refer you to a psychiatrist or a psychologist. So on one hand, in terms of the people that you’re paying for to guide you through or guide you to wellness, you know, they may not be your best advocates. Your best advocate is you and question question it, question everything about your life up until that point,

Bryan: Did you keep any like logs or spreadsheets while you were trying to turn to figure things out of what you’re eating or your sleep or how much water you’re drinking? Like were you manually charting things back then at all?

Jason: Yeah, I did. I was using I think that I was using Evernote. I used Evernote some and then I also used Excel especially for things like a grocery lists and then what I would do is I would eat and I mean it was like I was a baby. Like I was a parent to my own baby. Like I was recording, you know, when I went to the bathroom. I even took pictures of my stool. I would take pictures of my urine. I would match it up against what I saw on the Internet. You know again, you’re consumed with uncertainty. Not only do you want to be able to count on yourself, but you know that there are other people that need to count on you too and you don’t want to be left, you don’t want to be left by yourself. So it was a job in and of itself. It wasn’t comprehensive. And needless to say, I didn’t have the skills. I didn’t have the technical chops in order to try to find the correlations. But I will say that the times that I saw Glen, when I saw Dr Luepnitz, I would bring the stuff and he’d be like, oh, this is really helpful. And he’s like, you know, a lot of people start and they start in the analog and you know, they have a journal and they journal and that’s, you know, really super positive. But you know, again, it’s almost like the minute that it hits the page or the minute that it hits the pixel, it’s just an archive.

Bryan: So what’s your preventative today? The way that you stay on the straight and narrow and not have a flare up, not have symptoms before. Like, what’s your, what’s your regimen?

Jason: I went pretty much on what we would now call like a Whole 30 diet. So I avoided all gluten. As the proliferation of all the gluten free products, you know, came about. I ate a lot of gluten free products. Well, you know, they’re loaded with sugar, a lot of them are, you know, sugar is gluten free, you know, but if you eat an entire bag of gluten free cookies, you know, even though you may not get hives or inflammation, your pancreas and your kidneys are going to be in overdrive. Right? And I went to my annual and had blood work done and you know, my A1C was 5.8, you know, and diabetes is 6.0 and above. So I was essentially prediabetic. So at that point I pretty much went Paleo. I was pretty strict in terms of adherence to an autoimmune protocol diet. But I stayed, I stayed away from dairy, which is crazy. And you know, from there, you know, at the time I was a smoker, so like, around 2012, 2013, I quit smoking. I’ve never been a morning person. I really focused on sleep and hydration and so basically just really simple stuff, you know, clean eating. And so that’s, you know, that’s my regimen now, you know, and I’m, I’m a less so now, but in the period from like 2013 to about I guess early part of last year, you know, I would regularly walk 20,000 steps and I played basketball, you know, three times weekly. I would walk at least 18 holes once a week and I would swim regularly. And then I would do yoga, meditation, and Applied Functional Science.

Bryan: What happens today when an accident happens maybe at a restaurant, something that you think was prepared gluten free and turns out it wasn’t, or was cross-contaminated? If it was me, I would go to a party and it’s like, “Oh, those meatballs look delicious!” and I just want to have some of those. You know, it’s bound to happen. How long does that throw you for a loop now in terms of your health and how do you get back on track?

Jason: I’d say about twice a year thing now and usually it exhibits itself as at least the early onset is there’s kind of like weird tingling. The best way I can describe it and that’s basically from, from my mouth to my ass. It’s like this, this weird tingling. I’ll get itchy and then there’s the brain fog and I get really tired. Like I just want to go sleep. You know the best thing to do is, you know, one thing that they tell you is that you don’t want to necessarily cut all this stuff out immediately after a diagnosis because your reaction to it can become even that much more severe. But basically just kind of shut it down for like half a day. I say shut it down like I drink water, but you know, I would say since about 2013 or 2014. I haven’t really had a problem. But again, it’s like your entire life changes and your motivation is that once you start to feel better and once you have that data to backup the fact that what you’re feeling is attributable to X, Y, or Z, you know, that you never want to go back to feeling like that. I mean I can vividly remember how I felt. Cynthia went to Europe in almost the worst of it and she felt like she almost didn’t want to go, and I’d been diagnosed, and I was eating and like literally while she was out of town I got hives again, even though I was doing all the right things and like, I kinda just want to kill myself. Like I feel terrible. But in terms of now, in that feeling, when you, when you do that, the place and time, that’s a big motivator. One other thing that’s really interesting about this, autoimmune, I think the ratio is it affects women four to one [compared] to men. So like as a guy, you know, especially in this zeitgeist okay, where, you know, it’s not exactly male friendly when you reach out to somebody, most of the people you’re reaching out to are women and, and you’re a guy and it’s very rare, whatever you’re going through whether you’re a man or a woman. And then if you’re a guy that’s going through it, wow, that’s, I mean, that’s super rare territory. And most of the resources, you know, all of the bloggers are women. You’re not going to come across a male autoimmune blogger. I mean maybe I’m the first or something. That can be emasculating, you know, like the way that you feel. So all of these things for me is motivating. And then also, you know, when doctors would say, hey, you’re not gonna be able to do this, or they say like, you’re, you’re never going to be, you know, that’s also pretty motivating. So that’s kind of my perspective and then I, I just stay on the plan.