I have just hit 126 days flare-free from my autoimmune disease, my ankylosing spondylitis (AS).

This feels like quite a big deal because it’s the longest I’ve ever gone (as an adult) without having some kind of AS flare.

My definition of an AS flare – for me in particular – is that searing pain in the sacroiliac joints. It’s really debilitating, really hard and painful to walk. You’re dragging your leg like a zombie. Sleep is a nightmare. You’re constantly waking up.

Low mood, brain fog, the whole works.

This will be familiar to other people with AS.

If you have a different autoimmune disease you will likely have other symptoms you have to deal with but there may well be some crossover too.

For me, a flare can last anywhere from 10 days to over a month.

So this feels like a milestone, 126 days.

I wanted to share it with you because my life has changed so profoundly since I looked into the science and what other people were doing to manage autoimmune disease. I want to share it in the hope it could help you or a loved one.

To some extent this journey has taken me away from what is typically prescribed by modern medicine.

Don’t get me wrong, I’m a huge fan of modern medicine (I’m really not saying you should ignore your doctors, quite the opposite).

You should always let them what you’re doing.

But I found that there were really successful NHS treatments (National Health Service in the UK treatments) that focused on diet.

This was something that was done for many years with wildly high success rates.

Over 50% of people had dramatically reduced or no symptoms after following a strict diet.

I found groups of people online who were doing this. There’s a wonderful Facebook group called the Low No Starch Diet for AS. There are forums like the Kick AS forum, which was my first initiation into this.

Before we get started…

I’m talking about my experiences with ankylosing spondylitis here (because that’s what I’ve personally been through) but I want this resource, Gut Heroes, to be for everyone.

It makes sense for me to talk about my own condition but obviously get inspiration from this in any way you want.

I hope you see this as a stepping stone to your own research and your own method of trial and error.

I’ve had AS since I was at least 19 years old (even though it was diagnosed relatively recently) so this is the longest I’ve been without pain for 20 years, which just feels incredible.

Just over 4 months without pain and I’m on no medication at all.

In the last three and a half years I’ve taken ibuprofen maybe 2 – 3 times over that entire period. This is bonkers because I was taking 10 or 12 ibuprofen a day at one point, everyday.

Everything I’ve done has been entirely diet and lifestyle based.

I was really not someone who had an awareness that the things we were eating and drinking and what we do on a day-to-day basis could have such profound effect.

To be honest, I didn’t really know what autoimmune disease meant.

I didn’t know what gut health entailed. I had no idea about how the microbiome related to my own health.

That was sort of mind-blowing. It was something I’d read about in a different context and thought, oh, that’s interesting. But I had no idea that gut health and the microbiome and how you deal with all that could relate to, in my case, crippling back pain and all the other weird symptoms I’d been having since I was a young adult.

Key factors in staying flare-free

I’m going to share what I believe are some of the key things that have led to this long, flare-free period.

It’s been 3 years, 7 months, and 5 days since I started the diet.

In other words I’m well into the swing of things.

I started with an elimination diet and from there figured out (and stuck to) the kinds of foods that work for me.

I will do a separate podcast where I talk about what the first six months were like, what the first year was like, what the second year was like and son on.

A lot of people do ask me about that and I think it would be helpful. I know it can be daunting and scary if you’re new to something and not sure what to expect. I know I wanted a sense of what’s ‘normal’ when I was starting out.

The truth is there isn’t a fixed answer for everyone.

Some people get massive relief really quickly, for others, it takes longer.

We’re all different. We’ve all got different levels of damage and dysbiosis and things we’re dealing with.

But what I can definitely say – from my experience at least – is that it just gets better all the time.

My journey with diet and AS

I had a lot of success in my first year, but my symptoms were always slightly on edge. I always felt like I could tip into a flare at any moment.

While  flare a lot less than usual I was still getting flares throughout the year. They were just fewer and further between, and crucially there were times where I had no pain whatsoever.

So it was already feeling quite miraculous in year one.

Year one compared to how I am now is light years apart, but at the time I was celebrating because I’d gone from my AS being so bad, I was in constant pain. It was just a constant flare. At this time, my ‘flare’ flares (for want of a better term!) were so debilitating I couldn’t do anything.

I was pretty much taking anti-inflammatories all of the time.

I was having to nap constantly throughout the day because I was absolutely knackered.

I wasn’t sleeping at all well at night and was waking up maybe 15, 20 times a night and just getting sort of 15, 20 minutes here and there, waking up with cramp, with pain, twisting and turning.

It was awful. It was a really, really bad time.

To get any kind of relief in that first year was incredible.

I think that the first thing I really noticed was sleep improving little by little… then it was having those slightly longer periods without flare, and feeling like something was definitely working.

The strength of the change was stronger than any kind of medication I’d taken to manage this previously.

It was really profound.

It also wasn’t placebo effect. If I unwittingly made a mistake in my diet without realising it (and I did this a lot at the start) I got crazy symptoms and always within a predictable time period.

It’s about time, consistency and staying strict

The longer you do it, the longer you stick to it, the longer you find out what works for you and you stick with that, the stronger you get, the stronger your body gets.

The way I like to think of it is that you’re rebuilding your gut health.

By that, I mean you’re rebalancing the population in your microbiome.

I had gone undiagnosed for nearly two decades with AS. As such, thanks to a diet of eating all the wrong things for my autoimmune disease and biology, I probably had a gut that was a mess.

All the wrong types of microbiota and an immune system that was struggling to manage.

Understanding the microbiome and gut health

Your immune system in part acts like a park ranger with your microbiome.

Some of the microbes are really helpful and work with your body to process food (you literally couldn’t survive without it) while others can cause problems.

Other microbes your immune system sees as a threat (even if they aren’t for other people).

Typically when you get painful symptoms with an autoimmune disease or tiredness, it’s your immune system going to war.

And all of this is made much worse if you have damage to your gut lining…

If your intestinal barrier is breached in places – and it’s only one cell thick in places – there will be problems with those microbiota populations and the immune system’s ability to manage things.

The goal: Improve your gut health

What you’re trying to do, and this is the analogy that I like to use, is work on that gut dysbiosis (i.e. work on that population imbalance) and try and get the healthier population of gut microbiota.

Secondly, and as importantly, it’s about fixing that gut lining.

You will have heard of leaky gut. That’s what we’re talking about here.

It’s about plugging those holes and building up those fortifications so that your body is more resilient and your immune system is better able to cope. That feels like how this has played out, in my case at least.

Remember, this is my understanding and how I like to visualise it. I’m not a scientist or a medical professional, so please do your own research.

Three years and seven months in it feels like I have a much stronger baseline.

Looking at my spreadsheet, the spreadsheet I’ve kept since the start of the diet, I can see that the flares are FAR fewer and further between.

When I do get them, they are much, much shorter and they tend to be less painful.

The whole point of this piece is that I literally haven’t had a flare for over four months. So to say that the diet is working would be an understatement. I’ve never known anything like it for my adult life.

Why I’ve hit my longest ever flare-free run

I think diet has been the primary reason. I really, really do.

I’ve been super strict on that.

Of course I’ve made mistakes in the past, but on the whole, I’ve always knowingly stuck to it. For me, that’s where the profound differences have been made.

But there are a few other elements…

✔️ Sauna and cold exposure

One thing which I have found extremely helpful is doing sauna and cold exposure once a week.

I’m really lucky we’ve got a place nearby, that’s community run, where I can do inexpensive hot and cold treatment.

I do an hour session where I sauna for 10 or 12 minutes and go into an ice plunge (not quite ice water, but very cold water) for about two minutes.

I then take a couple of minutes timeout and then I go back into the sauna and then back into the cold plunge and I do that for the course of the hour.

I do that once a week.

✔️ Daily cold showers

I do my two-minute cold shower in the morning every single day.

I’ll start with a hot shower and wash and then I’ll finish off with a two-minute cold shower.

Everyone I tell about cold exposure rolls their eyes and says, “there’s no way I could do that… I hate the cold” and so on.

I am someone who hates the cold and very thought I could not handle that.

And yet it has been the single, easiest, most effective thing that I could recommend someone does who’s struggling with low energy, brain fog and inflammation.

Cold exposure is unbelievable, and so is sauna.

If you haven’t tried it yet, I really would recommend having a look.

I have done a podcast on that previously, so you can go back and listen to that if you want. You can hear it here or read the transcript here.

✔️ Regular walking

I do also do a lot of walking because as someone with my specific condition (ankylosing spondylitis), movement is absolutely essential.

I have stuck to doing a minimum of 15,000 steps a day.

Now I know that sounds like a lot and you probably don’t have to do that, even if you have AS.

However, I really, really love the process of walking.

I find it amazing for my mental health. I have my best ideas when I’m walking, I’m happiest when I’m walking, I get exposure to sunlight.

I’m even able to work as well. I have my phone on me and I dictate ideas to my phone and I’m able to do a lot of my ideas generation that way.

So for me, walking is crucial, not just for the autoimmune disease, but for processing information, getting exposure to sunlight and really lifting my mood.

✔️ Improving sleep environment

The other thing which I think has probably had a big impact is that we changed bedroom in July.

We were sleeping in a loft room, a room with lots of light and big windows and a skylight.

The problem was, or the problem for me at least, is it would get very light early in the morning and it would just never be quite pitch black.

If you’re trying to sleep and if you’re not great at wearing an eye mask, which I’m not, I can really affecting my sleep. Also our mattress was really, really old and that probably wasn’t helping either.

So we changed bedroom and had a better mattress and a darker room and I do think that will have had an impact.

That’s been three months. As I say, I’ve been flare-free for over four months but I do think that will have helped contribute.

Again this is a low hanging fruit change. I wish years ago I’d taken more steps here, even if I had just stuck something over the window to make it pitch black. That could have made a world of difference!

✔️ Drinking distilled water

The other one, which is a bit of a strange one, was that just over five months ago, my partner and I did an experiment where we decided we would try drinking distilled water instead of London tap water.

We’d been reading a lot of information and listening to a lot of experts, talking about microplastics in tap water. They all discussed different ways of how you can avoid exposure, because it seems to have potentially certain health issues.

It something that’s still being studied (so obviously look into it yourself before doing anything drastic!) but we thought it couldn’t hurt to try. So we looked at the different options.

One of those options is reverse osmosis and the other was distilled water.

We went for the latter and got a little tabletop thing that sits in the kitchen. We fill it up every evening and it runs overnight and we end up with this distilled water in a big glass jar.

We’ve now been drinking that for over five months.

One thing to note. You do have to be careful if you’re having distilled water because it doesn’t have any of the minerals or nutrients that we do need, which we get in water. Yes, you’ll get some of those nutrients from your food, but ideally you want to be making an electrolyte drink (preferably homemade) and supplementing with anything you might be missing.

This is the one I make.

✔️ Using supplements

Just to round off that last point, in my case, I add magnesium malate, because personally that seems to work best for me. Magnesium in general tends to be good for people with autoimmune issues.

I put some Himalayan pink salt in there. I have also been putting, and this may change, taurine in there too to try and help lower cortisol levels. I personally find it helpful.

This is something I can imagine changing in the future, and is something maybe specific to me at the moment.

The other one, which I would be super careful with, and make sure you talk to your doctor about is I add a little bit of potassium. Again, please be really, really careful with that. Make sure you check with your doctor the amounts and do your own research on that.

✔️ Reducing supplements

The other one, which has baffled me a little, is that apart from the electrolyte drink I’ve just described, I’ve stopped taking any supplements. I’ve also stopped doing any yoga for several months now.

This wasn’t intentional and wasn’t something I expected to do. It just happened after we went away on a trip to Argentina.

When you’re away, obviously you don’t take all of your supplements with you. In my case I just took the magnesium. It also wasn’t convenient to do yoga while I was out there.

I think partly because of the climate and the food out there, I felt better than I’ve ever felt.

I felt really, really, really incredible.

And when I came home, I just didn’t start resume my old routine for the first couple of weeks.

And then I thought to myself, “why don’t I do a reset? Why don’t I just see what happens?”

Why not reset, not take anything new and just stick with the magnesium?

I could then have a clean slate and reintroduce things again one at a time so that I know which things I need and which things I don’t.

At one point where I was taking a crazy amount of supplements – somewhere between 20 and 30 different things a day.

These were all things I tested meticulously, individually, for at least two weeks.

They were all things I believe had some sort of benefit or were doing something positive. But at the same time it was getting ridiculous…

And on top of that I’d gone away to Argentina without them and felt better than ever.

So I wondered whether it was worth just doing a reset and that’s what I’ve done, and it has been several months, and I still haven’t added stuff back in. Just the magnesium, the Himalayan pink salt, some taurine on and off and a tiny bit of potassium supplementation sometimes and obviously the distilled water.

So going from 20 to 30 supplements a day to typically 1 – 3 a day has been a big change and here I am today, 126 days flare free.

I’ve talked about a lot of different factors here.

What is the one thing that’s caused this to be my longest period without a flare?

I have had long periods before where I’ve been flare free during the diet. The closest I got to this previously was 90-something days.

So my new record is almost a month clear of my longest previous to that.

I think it’s the buildup of resilience, of being on the diet a long time, of rebuilding my gut health. I’m also sure getting better sleep will have helped.

It will be interesting to know what impact the distilled water has had. It’s hard to tell for sure because there’s been a crossover of a lot of things that’s been going on over the last few months.

In this case diet seems even to have trumped stress

This is maybe a bit of an overshare, but I have been really, really quite stressed over the last few months.

Stress is normally something which sends my autoimmune disease wild and that has still almost always been the case since I’ve been on the diet.

It can send me into a flare or a temporary flare fast.

I can cause intense rib pain for few hours if I am really stressed or just knock me into a full blown sacroiliac joint flare for a few weeks.

I haven’t had that this time despite the stress.

We’ve just had a lot of life stuff happening at the moment and I would have expected to be really struggling with the AS… but it hasn’t come to pass. So that is incredible.

Hopefully those stresses are going to be different in the new year and we’ll have sorted out some of the issues around moving house and changing our environment.

I just wanted to flag that up.

Figuring out the right diet for your autoimmune condition, really sticking to it and knowing what foods work and what foods don’t… of having more of what does, less of what doesn’t (or none of what doesn’t!) has been really the key, for me at least, that’s been the key.

I really can’t recommend enough. If you’re struggling with your general health, or gut health, or if you’ve got an autoimmune disease, I really, really, really recommend looking into trying and doing an elimination diet.

Try to see what might be the things that make you feel better, more energetic, have less inflammation. Try and pinpoint what makes you feel worse. That’s been the thing that’s changed my life.

Summing up

I’m speaking to you now during my longest period of being completely pain-free.

And I’ve got a very strict benchmark for what I count as a flare (anything over a few hours of pain counts).

I’ve had the odd very low level twinge that has lasted less than an hour, a handful of times over that 126 days. And that’s it – I don’t count it if it’s something that fleeting.

So this is a really clear run of being pain and flare free and I want that for anyone who is struggling with autoimmune disease.

As ever I encourage you to please look at the research and see what you can try yourself that’s safe to do.

For most people, looking into and potentially trying (with the guidance of their doctor) things that they can do with their diet, regular exercise and possibly cold exposure and sauna (if it’s safe to do so) and ensuring you have the right magnesium intake can be real game changers.

I really hope you’re doing well and pain-free.

If you’ve got any thoughts or comments I’d love to hear from you.