Podcast: Thriving With Ankylosing Spondylitis Through Gut Health

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This video interview (including the idea for it) and the fantastic production and editing was the work of Nathan Mennel. If you enjoyed this interview, and have a spare moment, please like and share it over on YouTube here.

📄 Read the Transcript Here:

Nathan: Tommy, thank you for sitting down with me. We are two guys with Ankylosing Spondylitis from different parts of the world. I’m in Kansas City, and you’re in London. I did not expect to be doing this when I had the diagnosis. I didn’t expect it to be such a big part of my life, and I didn’t expect this now rewarding part which is the healing journey and finding other people who are on a similar path as well, and being able to help each other.

So, you are the founder of Gut Heroes, and you are creating this resource for people with Ankylosing Spondylitis and other immune disorders, since there’s so much overlap, to help on their healing path and do everything that they can to live a better life and get through some of the painful parts of being diagnosed with something like this.

I will start with the first question, which is, how does it feel to be healthy again?

Tommy: Oh, it feels amazing, and by the way, thank you so much for having me on. It’s really great to meet you and connect with a like-minded person. How does it feel to feel normal again is just unbelievable. I mean, I can’t remember feeling like this for 20 years or more.

It took me 19 years to get a diagnosis, and I was just having this weird kind of mystery back pain, which I’m sure you’re familiar with. It just became more and more debilitating, and it kind of snowballed. So, to have something where I can feel like I can do anything, I can do sport if I want to, I can lift things up, I can tie my shoelaces—these might seem like small things, but it feels like I’ve got my life back.

Nathan: That’s awesome because you’ve been dealing with this for 19 years, and 2021 was when you kind of first started learning what you’ve been dealing with for so long.

Tommy: Yes, exactly. I had been to doctors previously, and they always just used to say, go and see a physiotherapist or an osteo, and it was really frustrating because I knew something was wrong. But because back pain is so prevalent, everyone has a story about back pain, so you start convincing yourself maybe there’s something wrong with me, maybe I’m just really overreacting to the pain. And then there are all the other symptoms which you don’t piece together as being part of Ankylosing Spondylitis. So, it’s just a really frustrating journey trying to figure out what’s wrong with you, and finding out what it’s called and what I can do with it has been a relief.

Nathan: What was your first symptom?

Tommy: That’s a really interesting question because, now on reflection, I know that AS can affect your skin and other things as well. I think my first symptom was when I was actually sort of seven or eight, I was getting eczema in my ear. That’s actually been improved quite significantly since changing my diet and lifestyle. But my first typical AS symptom would have been the sacroiliac joint pain, that stabbing pain that feels like it’s coming sort of just behind your bottom, really, sort of just the bottom of your spine to one side. It’s kind of searing, so that would be the most typical symptom. I would say that was the first time I thought, wow, something crazy is happening here. But you were feeling stuff even when you were eight years old?

Nathan: Yes, I’ve had a similar thing. My first symptom was not the back. I had eye issues. I got hit in the eye with a basketball in elementary school. My eye became really red and inflamed, and it wouldn’t go away. A week had passed, and then we were thinking, okay, there’s something more going on. I went to specialists for the symptoms, and for years, I just had uveitis or different types of eye diagnoses. A few years later, I got my first arthritis diagnosis, juvenile rheumatoid arthritis, and it’s grown all the way from there into Ankylosing Spondylitis.

Tommy: So, you were hit by the eye thing first. Do you think that it was almost, I mean, obviously, it was always underlying, but do you think that getting the ball in your eye kind of triggered an immune response right then?

Nathan: Yes, I think that was it. And I think, throughout my life too, I’m curious if you’ve experienced this, if I got injured or if something happened to a specific part, it almost felt like my body was using that as its next target. I had an ankle injury at baseball years later, and then I had an ankle thing for three months. It’s a strange thing. Did you experience similar stuff?

Tommy: Absolutely, when you were saying the story about your eye, I’ve had really dry eye where you wake up, and there are little crunchy bits, for want of a better word. I’ve always been rubbing my eyes for years, and again, that’s improved with the diet. But I hadn’t had too many bouts of uveitis. A couple of years ago, I bent over to pick something up, and we had a dried stick on the floor, and it went right into my left eye. Ever since then, I’ve had problems with that eye, and I sometimes wake up with this searing pain as if someone’s dropped bits of glass in my eye. I’ve had to go to opticians and get all this kind of stuff to put in it to try and fix it. But yeah, to your point, it’s a really similar story. It feels like your body is massively overreacting, and now you have this weird echo that follows you throughout.

Nathan: That’s incredible, and it almost feels to me sometimes that like my immune system is on red alert and overreacts to anything, and it kind of remembers it. It’s such a good analogy. I always think that it feels like there’s a kind of military unit in these different regions, and they’re sometimes firing just to make sure there’s no enemy coming. It’s like a really strange, red alert. It’s an anxiety loop too because then you’re worried about the overreaction, and sometimes I can’t tell if the reaction is just due to my worrying or if it’s actually my body.

Tommy: Absolutely, I’d like to go more into your story when you got diagnosed in 2021. You talked about the three rheumatologists you had. The first rheumatologist said it’s probably not likely but anything’s possible. The second rheumatologist read about it after you brought it up, which blows my mind. Your third rheumatologist was kind of irritated by the diet question but then kind of let go and said, okay, if you want to cut sugar, I think that’s okay.

Yes, the first rheumatologist was kind of waiting quite a while to get that first appointment. It was kind of in the midst of all the COVID stuff, so there was a bit of a backlog. My work were really kind, and they were seeing me in quite a lot of pain, and they said, look, we’re just going to pay for a one-off specialist appointment. They picked one of the top guys in Harley Street, which is like our best possible rheumatologists, and that was the guy who was saying that “it’s not impossible” and I was sitting there thinking “my goodness… I’ve been reading all these papers. Am I going mad? Is this stuff out there? ​​It just seems astonishing that someone at the top of their game, absolutely top of their game, hasn’t even read about it and even you know, had no concept. So that was interesting, but it was nice to have the second guy, you know, go away, do some homework, and come back again.

Nathan: That’s so funny. I had the same experience here, and that’s why I thought it was so interesting. Because over here, as I’ve started to consume more health-related content, it’s very easy to criticise our medical system here in the US. I honestly don’t even really want to delve into all that, but it’s so curious to me. It was interesting to see that you had similar experiences, that it kind of seems like it’s a global thing. This stuff is so new. With the internet now, it almost is kind of up to the individual to go seek that out and then find the right care provider who can help them, as opposed to how it’s been for decades, which was sit back and just let the professional handle it for you. I don’t think that’s definitely not the fastest way to healing.

Tommy: I agree, and I think you make a really good point about that. I think it’s funny what happened with my rheumatologist. It’s not that any of them are doing anything wrong. I think it’s important we don’t criticise what the doctors are doing and what the medical profession is doing because they are doing the best they can possibly do, and they are time-limited. They’ve got limited resources. We get the name of the thing that we have or that we think we have pre-diagnosis, and we’ve got all the time in the world. I’ve been staying up till three, four in the morning just Googling, Google Scholar, checking out all the papers. In medical school, they do a huge amount of work, but they just don’t have the time to go into every little niche thing and spend all that time. So, as you say, I think it’s more, it’s really good if we can become more aware of the resources available and really dig into what we can do to help ourselves as well.

Nathan: It’s definitely more inspiring. I agree with what you said too. I like the medical system. I appreciate it. I’m appreciative. I love it. I got the biggest help. I took a medication called Enbrel and started injecting myself with that immunosuppressant, and that actually, I think, gave me the space to dive in and learn because before, it was just such excruciating pain that it didn’t even feel like I had the energy to take this on and to find out what could help me to make those trips to the grocery store and completely change your diet. It’s such an intense change to go through; you almost do need some sort of relief a little bit. And I think it’s amazing they have that, and I think I see a future here where a lot of that health is done personally through finding resources like Gut Heroes and other things. And then if someone’s in a kind of emergency situation and just needs even the space to be able to start, it’s a great place to go to a rheumatologist. And I think we’re both, I think we both probably agree that for some people, going the medical route and taking the injections or whatever it is, if it’s working for them and they’ve done their research and it’s making them healthy and happy, then that’s great. I think if you can get diet to work, that’s amazing, but I think a lot of people have had great success on their different medications, and that’s not to be dismissed. I think so. You were kind of forced to go this route just due to it being COVID; the health system’s already maxed, and you kind of had to figure it out. You had to do something while you had the time in between appointments and all that. What was that process like the last few years?

Tommy: Exactly, yes. I was told that they wanted to put me on Methotrexate, so from my understanding, that’s the first frontline treatment they take; it’s probably the most widely accessible. If they can get that to work, it’s a win for them. But I was in the midst – when I found out the name of ankylosing spondylitis – of doing my own research.

I was going on Google Scholar, and that was my first initiation to different ways of managing AS. I was looking at biologics on there, I was looking at the mechanics of what it was and how it worked, and then I stumbled across these smaller, lesser-known studies by Alan Ebringer and his work, which revolves around diet.

So, having that glimmer of diet hope, I thought, well, that’s really interesting because I’d actually been reading quite heavily about the microbiome just by pure chance a few years previously. I just found it fascinating, and there’s all these different kind of ailments and conditions and autoimmune diseases that are affected by what we eat. So, it felt lucky actually that I had that interest already, then I was seeing this, and I was thinking, I didn’t think necessarily this was wacky or weird or strange; I thought there might be something in this.

So, that was quite a nice initiation, being able to find out all that information and then being able to Google it and find resources like KickAS, which is a wonderful forum which I believe was set up by patients of Professor Ebringer some time ago. There was a programme running in London where they were treating people on the National Health Service using what you and I are doing. And I think it was some people from there who set up KickAS. So, that was a great place to go where you, I’m sure you’ve seen this, but it had a kind of a spreadsheet type thing where you could see what types of food to eat and what to avoid, and there was like a forum with lots of people saying, “Oh, it’s working for me,” and that was really, that was my first spark of, “Wow, this really could work.” So, that was quite a thrilling moment when I found that.

Did you have a kind of lightbulb moment at all?

Nathan: You know, I just saw the KickAS from Gut Heroes the past few days as I’ve been looking at your site, and I thought, “Oh, that’s awesome.” My turnaround point was finding functional medicine. Okay, that was kind of a new thing to me. I hadn’t even really heard of it, and then in that, seeing the diet stuff, and it did click for me, and I thought, okay, you know, another thing that really started my journey was I love YouTube videos and just watching people who are passionate about different things. And I started watching these videos about athletes, not professional athletes but just people running ultramarathons, and they kind of have their whole thing, and seeing their diet prep and all that. I really had to ask myself the question of like, “Wow, if they’re willing to do all this to run and just to do something that they’re passionate about, even if they kind of started from a healthy point, they’re not dealing with what I’m dealing with, I should probably at least be willing to do that level of intent and study and kind of effort into my diet and stuff to just get my body working like normal. I think I should at least try.

So, that was my way of turning it on myself and thinking, “What can I do here?” There was a lot I could do better, especially at that time, as I wasn’t doing anything really with my diet. I tried going vegetarian, and I did that for a little over a year. It didn’t work like I thought it would. Now, knowing what I know about how it worked with my body, you can imagine there’s a lot of starch in vegetarian diets. I was eating a lot of pasta, a lot of rice, so that flipped for me. But it was a catalyst; I did feel a little different. I don’t know if it was a mental thing or placebo, but it felt good to finally put effort into it, to be thoughtful and commit to something that was going to move my health forward. So, that was the start of my journey.

I had to find a functional medicine specialist here and physically go in there. It was pretty expensive at the time, but I underwent a Health Reset Programme through them that lasted about 10 months, and my life changed. It was very paleo diet-centric. There was this detox period in between, a month of being very strict, no sugar, no starch, all that stuff, and it was very similar to what I’m finding with your stuff, which I love. That’s my favourite thing when I see things from different specialists, maybe even different diets, but they have commonalities. I have a nice crossover. It’s my favourite thing.

So, when you started, how long did it take for you to start feeling a difference?

Tommy: That’s a really great question, and it’s a slightly complicated answer because good things were happening, and other things were happening at the same time. I would say, definitely even within a few days, I was noticing some difference. I was sleeping better, which was such a big thing for me because I really wasn’t sleeping at all. I was waking up every 10 minutes, so nighttime was just horrific. I only had this when AS was at its absolute worst, but it felt like there was a kind of alien swimming around at the base of my spine. That was one of the points where I thought, “This is not right.” That kind of cleared up within, I’d say, 48 hours, and also, I was sleeping for like an hour at a time instead of 10-15 minutes. So, I was waking up with a bit more energy. That was the first big thing I noticed, and I thought something definitely has happened here by changing these things, and that was exciting.

I was in and out of flare for those first four months, which is when I started noticing some really decent symptom changes. But up until that time, I was having good periods and bad periods, and I think a lot of that was my body adjusting. It’s quite hard to figure out what starch is in; it’s in everything. You look on the back of a packet, there’s maltodextrin, there are all these things that go by different names, and then they’re starches. For me personally, cutting back didn’t work. I had to just cut it out 100%, and I’m hoping and expecting in the future I can bring back a bit of starch. But at that time, and currently, I had to eliminate all of it.

So, there was an up and down bit for the first four months, then massive improvement. I felt better than I had done taking NSAIDs, Ibuprofen, that kind of thing. Ever since then, it’s just been building and having longer and longer periods where I’m almost completely pain-free. In the first year, the target was to get to 90% pain-free most of the time, and I was getting that in the first year. Then it’s just been building, and you get almost greedy for it. You think, “This is incredible. I could feel 100% human,” which would be great.

Wow, I love that. That’s incredible, 95% pain-free. If they could have a pill like that, it would be incredible. I think that’s so cool that you found that, and I get what you’re saying too about it being motivating. I feel the same way; once you start feeling the benefits, you really want to do anything to keep it going. Your life changes. How did yours change over time as you started feeling better? Did you start doing different activities, and did your mental health improve? There’s a mental component to this stuff too.

I’ve always been really lucky that I’ve not struggled too much with mental health stuff. I’ve always been fairly curious and excited to be alive. But when it was really bad, it was a strange sensation. I kind of felt like, “What’s the point of being alive?” I’m in pain all of the time, so the sliver of time when I wasn’t in excruciating pain was, how to put a number on it, around 10% or 20% of the day.

This isn’t truly living, so I didn’t feel suicidal, but it just felt like, “What’s the point?” That’s a really dark place to be in. Having something that worked was like the sky’s opening, and you just feel like you can do anything, which sounds like a strange thing to say. But if a friend says, “Do you want to go and play a sport with me?” you can say, “Yeah, I can go and do that.” Whereas it just would have been a blanket “absolutely not, there’s no way I can do that, I’ll be in crippling pain for weeks.”

I’d always wanted to get into running. I haven’t started yet, but now I feel like that’s something that I can do, which I couldn’t conceive of before. I probably hadn’t run for 10 or 15 years just because that would definitely cause me to flare or have some kind of nasty pain in that moment. So, it just opens up a world of physical activities and being a bit more helpful around the house as well. I can lift things. My poor partner was having to do a lot of anything that involved moving stuff or picking up stuff if it was heavy; she had to do it. She knew I’d be laid up and in trouble if I bent down to do an awkward light switch, that could cause me agony. So, just being able to be a useful person is quite nice.

How about yourself? How’s it affected you?

Nathan: I felt the same way. I remember I do video production for work, and we had a shoot one time, and two guys that I was working with were like, “Hey, let’s get up in the morning and do a workout before we have our day.” I thought, “I can’t.” There was a weird mental thing where I think I was even like, “You guys shouldn’t.” It’s hard to even understand what it would be like to be healthy. I’m thinking, “Man, I need an hour just to get out of bed, I need an hour to mentally get through the pain of waking up.” That was a really tough thing for me, and it’s kind of hard to even think back on that now because I have the same experience with you. Now, I think that would be a fun thing. I love it; I feel like a little kid now because I’m enjoying running around and being outside and feeling my body.

Tommy: That’s amazing that you have had the same experience; I feel the same. When the condition is really bad, and it was kind of a slow erosion over a couple of decades of getting worse and worse, I thought I was aging faster than everyone else. I felt like I was like 80 or 90 in terms of my biology. Since doing the diet, it feels like I’m going backwards, and now I feel like I did when I was in my early 20s. Imagine being gifted that, someone going, “I’m going to knock 20 years off,” and it feels like that. Physically, I feel like I can do the things I enjoyed when I was much younger. So, it’s been really good.

Nathan: Oh, that’s awesome. The aging thing really struck me because I felt that way too. I had a funny experience where one of my best friends, his wife, her dad is into Eastern medicine. I went over to their house, and she invited her dad to talk through it. It was a completely different view on health and wellness. Thankfully, you just get to a point where you’re open to anything, and I’ve come to really appreciate that. I had hit that point where I was like, “Let’s try it,” even though as sceptical as I could be still about different things, I was like, “Let’s just go for it.”

He had me lay down on the floor, and he took this wooden spoon and started hitting my back in different parts of my arms and my shoulders. It wasn’t comfortable; it didn’t really hurt, but he was hitting it, and you could hear the knock and the echo. I’m still not sure what I think about it, but he told me it felt like, “Oh, this sounds like an old person’s bones.” He said, “Oh, I can hear it; your body is so much older, it’s not in good shape.” The fact that it subconsciously popped in my mind like these bones sound old, and then he said that, I was like, “Wow, there’s something here.” So, it was interesting to get his take on things, but it was kind of another one of those eye-opening moments where I recognised that it was going to be a bad journey to keep going down if my bones were 60, and I’m 27 at the time. I didn’t know what was going to happen.

That was one of those funny experiences. That’s what led me to try Wim Hof; have you ever heard of him? So, I really liked that, and I started doing the cold showers. I wasn’t doing the heat, though, and now I’d like to do both, but I think my body responds to heat really well. Anyway, I was doing all cold showers, and his perspective was kind of the opposite. He’s like, “I think you should warm your body up,” and there was a spiritual component to that from his perspective. So, I got a gym membership and started doing the sauna more, and I found really amazing benefits. So, I was going to ask you, what are kind of all the things you’ve tried? Some of it’s very in vogue now; I see ads all the time for ice baths and all sorts of stuff.

What were things that you started finding along your path that you liked?

Tommy: It’s so true; I can almost feel when I’m talking to friends, and they’re saying, “Oh, what are you doing to manage it?” I can almost feel their eyes rolling back into their heads because it feels like we’re doing some sort of trendy tour of all the latest trends in health. But yeah, like you, I do sauna. I do that once a week, and I do it for an hour, not one hour in the thing but roughly 10 to 12 minutes of heat and then I jump into a not quite ice-cold plunge pool for two minutes and then I pause for five minutes and then I go back into the sauna and do another do another 12 minutes and then back into the plunge pool.

I do that over an hour, and I do that once a week. That’s by far and away one of the best things I’ve come across. You feel amazing; it’s just like this crazy inflammation buster. So, if I come in there feeling a bit twingy, I will come out bouncing and feeling flexible, like I could skip home. That’s brilliant. I really recommend that to anyone who’s thinking about it because it’s super healthy for your heart as well, great for cardiovascular, and just a general feel-good thing as well. Good for your mood too. If you have a gym membership, a lot of the time, it will come with that.

What else do I do? I’m a big fan of walking and hiking, and tracking. So, I typically try and walk at least two hours a day, which I know is difficult for a lot of people. But I’m lucky that I can fit it around my job. You know, I sometimes work later in the evening; I’m better at working at night anyway. So, I always try and get a really decent walk in, and that just feels like it’s oiling the cogs a bit, and it just keeps me on top of things. So that’s a definite go-to.

The other two things, one of them I haven’t talked about on Gut Heroes yet, but the first one you might be familiar with yourself, is yoga. I try and do it once a day; I’d probably do it like five times a week, I would say. And I just do 20 minutes of stretching type yoga. I find that absolutely incredible; it’s transformed things because I never in a million years thought I’d be doing yoga. If I’m honest, I find it a bit boring, and I get distracted. But it’s just 20 minutes, and once it’s done, I can feel the benefit it’s giving me. It’s really super positive, so I’d recommend that to anyone as well.

But the other thing I’ve been doing recently, and it sounds like medieval torture, is something called bed of nails. I don’t know if you’ve heard of it.

Nathan: I have heard of it; tell me more.

Tommy: Yeah, so the good thing is it’s really inexpensive. You can go to pretty much any big online shop and buy versions of it. It’s kind of like a foam mat type thing, and on top of it are these white plastic spikes. So, it’s literally like a mini bed of nails, but clean plastic ones. So, you just put it on your floor and you literally lower yourself onto it, maybe have some cushions behind your head and maybe have your knees bent at first so you’re not putting too much weight on your back. And then you just lie there for half an hour. The way I do it is I just kind of gently ease my legs down so that I’m lying completely flat by the end of it, and it’s incredible. It just feels like I’m having a really deep tissue massage. I didn’t expect it to be something that had a massive impact, but it’s really helped me personally. It’s another thing maybe for people to look at if they’re interested.

Yeah, I’m going to try that; I’ve seen an ad for it with the white spiky things. I was wondering if that’s what you’re talking about. I want to try that. Have you tried massage in general or acupuncture or anything like that?

Yes, acupuncture, I’ve had some real success with. I also had one where, shortly afterwards, I had the worst flare of my life. So, I kind of have a slight memory of that where I’m like, “Oh God, you know, I want to get back into doing it,” but I think that session must have triggered or loosened up something. So, it was probably good that it happened, but it was quite traumatic at the time. But, in general, I’ve found acupuncture to be absolutely brilliant. The right kind of massage, yes. Some sort of deep tissue type thing, I would guess, when they really focus on the right area. I used to do that a lot more before I had the diet, and now I’ve not felt the need, if I’m honest. How about yourself? Have you found that really helpful as well?

Nathan: I have, yeah, it’s the same exact thing. I kind of started with everything going full force, and I’ve noticed that the diet’s really the core thing to go off of, and all those are just really great tools to feel better generally, as opposed to using it to heal a flare-up or anything. I haven’t had anything like that necessarily, but I’ve enjoyed massage. I think there’s a lot of stuff that I’m starting to learn about with fascia and just the biology of the body that I think has been really interesting. I kind of wonder if we’ll find more things with that.

It’s really interesting to hear you say that you felt that one acupuncture session might have released something that triggered that flare because I have actually found that as well. I almost take a spiritual approach to it sometimes, and it almost feels like it’s my body not wanting to let go of the identity of being sick and having this stuff. There are just some moments I’ve had even with the diet when I really started, and I just completely changed my diet. At the beginning, I would have these feelings like, “Oh no, am I flaring up a bit? Is it because of this change?” There is a bit of faith, I think, you got to have to really give these things a try and not let your body trick you out of it. I kind of wonder sometimes if the body just gets scared and it overreacts, like what it does with everything.

Tommy:  I completely agree with that. A really good case in point, I don’t know if you found this, but when I am in a flare, or when I’m in a lot of pain with the sacroiliac joints, it’s really hard to walk. You’re kind of like a zombie, dragging one leg because it’s typically on one side. But, conversely, I find that the only way to really properly relieve the pain is to walk for an extended period of time. So, I had to go over that mental leap of, “This is extremely painful, and I can’t do it,” to, “I know I have to do this to get any kind of pain relief.” And it might take 15-20 minutes of walking to notice any benefit and you’re kind of limping and you’re dragging.

Nathan: It’s just exactly what you said. It’s like your body is screaming, “I’m in pain, don’t do this!” But you know you have to jump over that and let it release. The exercise thing, oh man, I was so lucky because I was freelancing in a creative career field. I didn’t have to be in an office at 8 am. I had flexibility in my schedule even before COVID, and I was lucky because I got a gym membership. That was my routine. I had about a two-hour morning routine, and I felt guilty about it. I felt lazy, like, “Who am I, waking up at eight and not ready to even approach the day until 10?” I would go to the gym, walk for 20 minutes on the treadmill, then I’d start feeling better, jog a little bit, stretch, and lift some weights. I didn’t have any sort of program I was following; it was just to move. That clock felt like I had to reset every day; the mornings were really hard for me.

Tommy: That sounds exactly like me, except I wasn’t motivated enough to go to the gym. In the morning, I would kind of wake up at this angle, so you almost roll out of bed, but my body was like that. You know that famous image of the evolution of man, where it’s a crouching mammal going up and up? That felt like every beginning to every day. It was about an hour and a half for me normally, and by the end of the hour and a half, I’d be this very stiff, upright person, having been like a 45-degree person. I know exactly what you’re talking about, and it’s so crazy to hear you say that. It really does feel like your back is loosening enough to just stand straight after all that.

Nathan: Well, I like the nail bed thing, so I’m going to try that. It is one of those things where the change in the diet is probably the hardest, even though it’s the most important. It is the hardest to start. There’s so much that diet, culturally, socially, it’s blowing my mind to see the pressures I feel or maybe even invent in my own mind to not adhere to the diet that even I know is going to improve my life dramatically, especially alcohol and all that stuff. I don’t respond well to alcohol. Have you noticed the alcohol might flare with you? What’s your experience?

Tommy: Being from the UK and living in London, going to the pub is quite a big thing; that’s what we do with our mates at the end of the week, go for a few beers. It’s ingrained a bit in our culture. I found that quite hard, and I haven’t eliminated alcohol completely. I’ve done the ridiculous thing of working really hard to figure out which alcohol I’m less bad with, so I have a particular type of beer which I order, which is gluten-free and has no nasties in it, and I seem to be okay on that. Other than that, I’ll just have a neat spirit; I’m into whisky, so I’ll just stick with some single malt and a nice beer. But I should be cutting those out, and I would say to anyone who’s starting the diet, if you can just cut all of that out, you’ll get a massive head start.

Sticking with the diet long enough and really being on pattern with it means then you can afford to have that drink. You could afford to have these things and not cause a massive flare-up like they might have in the past, which is kind of nice. It gives you more leeway. You feel a bit more like you don’t worry so much about sources in restaurants. Eating out at the beginning of the diet, you’re quite panicky; you want nothing on it. It’s kind of nice to feel a bit more normal when you’re eating out and just go, “I’ll just take it as it comes,” and you just scrape it off. It’s not a big deal if I get a bit of residue on there or even if I have a half a teaspoonful or whatever, it doesn’t seem to affect me, so that’s been quite nice.

Nathan: Eating in general, that’s what I’m trying to work on now, even though I’ve been two or three years into my journey now of understanding the diet, really being committed to it. It’s also similar to me; it’s almost exactly the same timescale. It seems like life will throw you tests when you’re starting this thing. When I went to the functional medicine doctor and committed financially and in my time, which I felt helped me, a lot of that information is on Gut Heroes, and I think people should start there. It did make me commit because I was like, “Hey, I paid; I have to do this.” You would think that just wanting to live healthier should be all there is that you need, but sometimes the extra motivation, it’s strange, even just believe that it can be done, helps from having other people and committing to something.

When I started the diet change, the next day, I was going on a trip with my friends to Arkansas on this little lake town, and so I was stressed about the food. There are things you could do at restaurants to help it, but there’s no going to McDonald’s and saying, “Hey, can you cut out all this stuff?” I mean, that is the product; they would just give me the empty box. I went to the grocery store; my girlfriend, now my fiancée, has been a massive part of my healing process, and she helped me. I had a lot of anxiety even just going grocery shopping. I got all the food I needed for that long weekend trip, and I packed it in bags. They would go eat out or cook their own things in the Airbnb, but I had my own pack of grass-fed meats, veggies, and greens. That’s great; you pick it up. It made me commit because if I can do it on a friend trip like this and still get through it, then it would be possible to stick through it.

Did you have anything similar pop up when you’re on your journey where you’re going through this health thing, but then somebody has a birthday party, and you’re expected to eat a bunch of cake or have alcohol?

Tommy: Eating out with friends is the thing; someone invites you to a birthday or some occasion. I tend to ask where we were going first, then Google the menu and try and figure out before I got there what I would eat and what I would ask the waiter to change. Then it wouldn’t be that panicky moment when we’re all chatting, and no one’s looking at the menu, and they make a last-minute decision. You need to know what you can have and what you can’t. I’d look at the menu in advance and Google all the ingredients just to make sure because you don’t know what has starch in it. There are all these vegetables which are super starchy, which you would never imagine.

I wish I’d had somebody just sit me down and say, “If it grows above ground, it’s probably okay, and if it’s below ground, it’s probably starchy,” which I’ve found out quite late. I was just going the Google route, but eating out was the thing. The great thing about getting a bit older is I just kind of stopped caring as much if people think it’s funny or weird. That’s what it is and it’s okay and I feel loads better for being on this diet and it’s just working miracles. I wouldn’t exchange an ounce of the pain that you get from not doing it.

Nathan: How do you explain it to people if you’re out with friends and they inquire about your dietary choices or why you aren’t drinking?

Tommy: That’s a really good question, and I think I explain it differently every time. I wish I had a really cool, concise answer to give people, but I normally just say, “I’ve got this unusual form of arthritis, and I’ve just found that cutting out certain foods works wonders. I don’t have to take medication, and it works for me.” I might sometimes say it’s generally carbs or gluten-type stuff because people seem to be more aware of that. It’s easier to explain; when you say starch, people like, “What’s that?” They know what it is roughly, but it’s such a weird-sounding thing, whereas people understand lactose intolerance and gluten intolerance. So, I try and use language which they might be familiar with. How about yourself?

Nathan: That’s a good one. I’ve been there; there were times when I would slip into my whole story, and then all of a sudden, I’m explaining what Ankylosing Spondylitis is. The whole dinner then becomes about an autoimmune disease. So, I like the way you do it. That’s kind of where I’m at too. It is interesting; health is very mainstream now, and it does make it easier to explain things. There are things that I might do specifically for an autoimmune disease or Ankylosing Spondylitis that somebody else is doing who’s healthy, and it still makes them feel better. It’s trendy, and so I found that there’s a lot more overlap now.

People will say, “Oh, have you seen this Wim Hof guy?” And I’m thinking, “Wow!” It’s like everyone’s coming in tune.

Do you know anybody else that has a similar diagnosis to you, an autoimmune issue or things like that?

Tommy: I know someone who’s got Crohn’s, which is a different manifestation, but it’s very autoimmune. I know some older folk who have rheumatoid arthritis, and I know a Coeliac as well. It’s interesting you asked me; actually, I’ve noticed a lot of people, as they hit that point between 30 and 45, are getting diagnosed with autoimmune diseases. I have this theory that maybe there’s a certain amount of exposure to ultra-processed foods that are affecting the gut lining. That’s why we’re seeing this explosion of people getting these symptoms they can’t explain and then getting diagnosed.

Nathan: My best friend has Ankylosing Spondylitis, and we both found out around the same time when we were in high school. That was such a strange coincidence. Now, I think back, and there were two other guys in my high school that had forms of scoliosis and back problems. I think it’s more than a coincidence; a lot of people are having autoimmune issues. The food, I’ve been really into grass-fed, grass-finished, microbiome kind of soil health stuff. That’s been a new thing for me to go down because I really do believe that there’s a connection. If I’m eating an animal that’s eating a bunch of grains and it’s confined and stressed, I think there’s something genetically that happens to that meat if I were to then consume it.

I’ve been going down different routes, so I had my Wim Hof phase and all that. I’ve been taping my mouth shut when I go to bed.

Tommy: Do you listen to Andrew Huberman?

Nathan: Yes, I love him. He talks about taping your mouth to breathe through your nose more.

I haven’t yet done it because it’s a bit scary, the idea that you might wake up unable to breathe. I’ve been doing it probably eight months now, and I absolutely love it. The first thing I recognized was I didn’t have bad morning breath anymore. My nose, I breathe better, and it’s made a real difference in my workouts.

Tommy: Going back to what you were saying about meat and the microbiome, I really agree. There’s a movement called regenerative farming, where the animal’s poop goes into the ground, and the rest of the ecosystem gets to thrive off that. Everything needs that rather than this chemical process where we’re putting all this artificial stuff. Glyphosate and Roundup are horrific. It’s very interesting to me, and it makes a lot of sense. We’re talking about gut microbiomes and leaky gut. Here we have something that is technically an antibiotic that’s now in the soil, and in some of the stuff we’re consuming. Antibiotics affect our gut health for good or bad, and unfortunately, antibiotics are just killing all bacteria. There’s no differentiating between the good ones and the bad ones. I totally believe that that would affect our gut microbiomes and cause leaky gut if you’re constantly exposed to antibiotics.

We’ve been exposed since we were children, and it’s going into farms. The antibiotics actually make animals larger, so there’s a kind of benefit for the farmers. But as you say, it’s then going into the system and then it’s messing our microbiome. We’re getting gut dysbiosis and all sorts of other things. All the populations are being unnecessarily manipulated.

Nathan: It feels so complicated, but it’s interesting. Once you’re on the path, I’m like, sign me up. I’ve taken a class on permaculture, which is very into the regenerative agriculture. I’ve been buying grass-fed, grass-finished meat from regenerative farms, so there’s no Roundup or glyphosate on their soil. It’s a journey because it’s expensive, and I have to commit to make it happen. But I’ve also noticed a huge reduction in anxiety because it simplifies eating. Eating is such a touchy subject, and there’s also a marketing component. A lot of these companies that make food, regardless of if they’re healthy or not, make more money the more people consume. It’s going to be hard to relearn how we ever truly ate to begin with.

Buying from these farms reduces anxiety because it’s not going to the grocery store and having a million options. I go here; I know that everything’s clean. It’s nice to have a core component of healthy food lined up for the next month or two. It’s making me more intentional about when I eat and how much I eat. I actually love the lack of options, which might sound weird. I kind of treated it more like there are loads of exciting things I can discover that I wasn’t eating before. Organ meat is incredibly good for you and inexpensive. Super nutritious. So, you’re discovering new things. It’s weirdly liberating having this sort of paralysis of choice. For us who are successfully managing our diet, we know that pretty much anything that has a character on it or some sort of claim on it is going to cause us a world of pain. So, we just ignore it now, which is a really good thing. It’s made us healthier.

I love that saying, “You could eat to live or live to eat.” I feel like before this, I was really living to eat. It’d be a constant stressor, “What am I going to have today?”

I never really thought about that too much until recently, and I feel like before this, I was really living to eat, you know. It would be a constant stressor, “What am I going to have today?” I never really planned ahead what I might eat a few days in advance, even with stuff I have in my own home. It’s so much easier now because there aren’t a million things I’m going to buy, and then I can focus more on living. It sounds funny, and I also noticed too, I’ve enjoyed taking out a lot of the stimulus with food in terms of sugar, salt, all that stuff. I’m getting a lot more plain, and at first, it was an adjustment, and now it almost feels less stressful on my body to handle, you know, all these flavourings. Every meal I was eating, breakfast, lunch, and dinner, had to be an explosion of taste in my mouth. I got accustomed to that, and I think there’s some amount of stress to the body to digest all that and to handle all that. It’s been a lot more convenient to eat a nicely prepared chicken breast with some broccoli, and immediately after this, I could go play some sports or go for a swim with my friends.

Tommy: I completely agree about the taste buds thing; that is such a good point. It’s really good for anyone who might be watching this and going, “I’m starting the diet, or thinking of starting the diet, and where have my flavours gone? This is scary. I don’t know what to eat,” and all this kind of stuff. Your taste buds, as you say, absolutely adapt. You actually taste what the broccoli tastes like or you taste what the chicken tastes like, or whatever it is, you know. If it’s good quality, you really appreciate it because your taste buds are suddenly heightened, and they can taste everything. We’ve just had them eroded away by growing flavour explosions synthesised in our foods. So, if anyone’s nervous about that, it absolutely comes back, and it’s great. You appreciate new things. I recently had a really small cube of dairy milk chocolate. The sensation was bizarre; it was like someone’s put 50,000 different chocolate milks and flavours into my mouth, and it felt really sickly and rich, not that nice. It just shows how your taste buds do definitely change.

Nathan:  That’s funny; I had a similar experience. I had a taste of soda; I haven’t had soda in so long. I took a sip, and it was Dr Pepper, and I would not want to take another sip; it was too much. When I was younger, I remember drinking like three or four Mountain Dews a day, which is probably one of the reasons I ended up with an autoimmune disease. It’s fun now; you’re not giving up anything. I think you’re always gaining, even if you’re taking stuff away.

My last question for you was, you’ve started Gut Heroes, you’ve documented your journey, and you have a lot of information for people to find and learn alongside how you did and how you found health. I’m curious, have you had any responses yet from that? I know it’s relatively new, but what’s been fun with that journey of creating a resource for people?

Tommy: It’s been really nice; there’s been some really lovely people emailing, just saying some really nice things, saying, “I’ve been looking for something which just kind of lays it out a bit more.” The reason I set it up was we’ve got all these amazing forums online, and I’ve used and try to contribute to them as much as I can, but it can be super overwhelming trying to find something that puts things in some sort of chronological order or makes sense of all the different elements.

I guess I’m trying to do two things: have a resource where people can get to the bits quickly and, if they just want a quick summary of why the thing might work or what potentially they could eat and that would be okay, they can access it quite quickly without having to do a thousand searches on a forum or on the Internet. That’s part one.

The second part is really, I just want to be a human guinea pig for people. I think I’m similar to you in the sense that we’re just game for trying anything that might give us that incremental improvement. I really enjoy doing that because, obviously, you feel great, but discovering all these new things that are really beneficial to us, I’m keeping all these super detailed notes. If it’s working for me, it might not work for other people, but let’s just put it out there, and then I’ll put all the data that I experienced, and if someone else can get some benefit from that, then that would just be amazing. So, that’s the kind of general goal, and I hope that comes through.

Nathan: What are your plans for Gut Heroes as you continue to grow it? Anything I know you’re interested in adding some more content on some of the other stuff you’re trying out, the nail bed and stuff like that. What are your visions for the future of Gut Heroes?

Tommy: It goes back to what you were saying earlier. There are a lot of autoimmune diseases; it’s on the increase, and lots of people we know have it. As I was starting on my journey, I was seeing other people who were really struggling down the Western medicine route where they’re just constantly being given really long courses of antibiotics, sometimes six months at a time, or they’re being given really strong painkillers. In a lot of cases, they’re having no benefit from that, and they’re feeling worse afterwards, and a lot of them seem to be having autoimmune issues and gut issues. (Editor’s Note: antibiotics are one of the most groundbreaking and transformative discoveries of modern medicine. They can be life saving in so many instances and have saved countless lives. However, they are often overused)

So, what I would really love, and that’s why I’ve named it Gut Heroes, is to be able to widen it out a bit and go, “Look, we can narrowly define each of our conditions, that is helpful to an extent, but actually, it’s all about the gut.” The gut is such an important part; 50% of the cells in our body are microbiota, and the vast majority of those live in our gut. For decades, we’ve been ignoring that, and I think the path to our health, you and I, has been understanding that and looking at what we put into our body.

There’s a bit of experimentation going on, but I hope that we can look at it in a broader way and go that we need to change. We need to take a complete step back on how we do things currently, look at food production, look at what we put in our bodies, and maybe we can start tackling some of these issues that are really affecting people, making people really unhappy. That’s the kind of long-term goal to widen it out. I really see Gut Heroes being a resource for even a lot more people dealing with than just AS or even autoimmune stuff. Honestly, even a healthy person could go to Gut Heroes, try some of this stuff out, and feel better. I think that’s very cool.

Nathan: Brilliant, thank you! Well, thank you for chatting with me. I’ll be in touch; I’m excited to see where Gut Heroes goes, and if there’s anything I can do to help you on that because I think that this is so special to provide this information to people that are going through it.

It’s something that I think that is so special, to provide this information to people that are going through it. It’s something that I think is, unfortunately, picking up steam as more people run into autoimmune issues. But at the same time, what a time to be able to share information and talk to people in different countries and share what’s working! I think we’ll find a much more efficient path to health in these next few years.

Tommy: Well, it’s been an absolute pleasure, and thank you for putting this together. I look forward to talking to you soon. Yes, come on, thank you!

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