Tommy lives in London, UK. It was 19 years before he received an ‘official’ ankylosing spondylitis diagnosis. He exclusively uses diet and exercise to manage his AS and most days is 90% – 95% pain free.
⚙️ See Tommy’s Wellness Plan here
“It felt like AS had robbed me of so much, but this has completely transformed my life. I can now do things I never thought possible…”
When did you first start experiencing AS symptoms and what were they?
I had small outbreaks of eczema as child and a few issues with my ribs from the age of 9 or 10. This wasn’t painful but there where times I would find it hard to take in a full lungful of breath.
I’ve experienced fatigue for as long as I can remember. I often nodded off at school and then at work – to the point where I thought I might have narcolepsy!
I was 19 when I first started experiencing more the typical, core ankylosing symptoms. Specifically sacroiliac joint flares.
It was a sharp, piercing, almost electric pain that always felt like it was coming from the base of the spine to one side (left or right), and behind the buttocks. It would last a couple of weeks before seemingly magically disappearing.
When did you receive your ‘official’ AS diagnosis?
I got my ‘official’ diagnosis in 2021, 19 years after I first started experiencing those more typical AS symptoms.
Did you test positive for the HLA B-27 gene variant?
Did you have any blood inflammatory markers tested during your diagnosis journey?
Yes, my CRP levels were 21.6 and my ESR levels were 30.
(For reference the ‘normal’ level for CRP is around 2 – 3 and for ESR under 15).
What was your experience getting a diagnosis?
Really tough. Some of my darkest days were during this diagnosis journey.
The GP I saw initially was great and booked me in for a barrage of tests. Then, unfortunately, it went downhill.
There were lost blood tests and X-Rays, incomplete files, an MRI scan that my rheumatologist forgot to book in.
I live in the UK and we have an overstretched health service and everyone is doing their best. At the same time you are battling the worst pain of your life explaining the same symptoms to different people over and over repeating blood tests and X-Rays and getting told that there are no appointments or that the hospital forgot to send this information or that.
How long did your road to diagnosis take once you were ‘in the system’?
What has your experience with rheumatologists been like?
A really mixed bag.
I’ve had 3 to date. The first thought the idea that diet could be an effective treatment was ‘extremely unlikely’ but conceded ‘nothing’s impossible’.
The second was more open to ideas (and actually read up the low/no starch diet after I discussed it with him) which was fantastic. He said he supported me using diet if I found it effective. Unfortunately he wasn’t quite so good at retrieving test results or booking scans…
The third seemed irritated by the suggestion and said there was no evidence that diet had any real impact. She said she was “ok” for me to give up sugar.
It’s frustrating when you explain that you are following a plan carefully and safely (based on a treatment that the NHS themselves pioneered and once offered) and that you are taking meticulous notes and recording results as methodically as you can, only to be told it’s ‘nonsense’.
That’s one of the reasons I created this site. I think it’s so important we raise awareness about the role of the gut and microbiome and its relationship to autoimmune disease. It still seems to be a relatively fringe topic in healthcare.
What medications have you tried prior to trying the diet and how effective were they?
Previously I used NSAIDs to manage my AS pain (such as ibuprofen and naproxen).
At one point I was taking up to 12 ibuprofen a day and it was having very little effect. I also had to constantly apply Biofreeze to my back and use a portable TENS just to be able to get out of the house to walk.
When I finally got on the initial road to diagnosis my rheumatologist told me they planned to put me on methotrexate or biologics.
However they made a mistake with booking my MRI scan, and we were in the middle of the pandemic, so I ended up with 7 months during that time to experiment with the diet! The rest of history.
Before you started managing your ankylosing spondylitis, typically how many times a year would you go in flare and how long did they tend to last?
In my early twenties it was about 6 – 8 times a year for the lower back SI joint flares. Flares would typically last around 2 weeks.
In my early to mid thirties this increased to 8 – 12 times a year and the lower back stiffness increased exponentially. It felt like the lower half of my back was a solid lump at all times. I was also waking up multiple times in the night with cramps or feeling restless.
By my late thirties I was in almost constant flare and on painkillers daily. Sleep was snatched in 30 minute segments.
What was your darkest point with your AS?
I think it was that moment that realisation that the pain was constant and never going away.
I was in constant flare and every waking thought was coloured by it. Even when the pain was ‘manageable’ – when I could walk without wincing or dragging a leg – it was still there, like a headache constantly screaming at the bottom of my spine.
It was exhausting, it made me feel grumpy and miserable, I was probably only getting a few hours of heavily broken sleep a night.
One night I woke up at 3am with the worst flare pain of my life. I have never experienced anything like it and was in so much pain I struggled to breathe or cry out.
I got up to try and walk to see if I could help ease out the pain but then that made it worse and I was rooted to the spot while I waited for the ibuprofen to kick in. In that moment I wished someone would just end it to make the pain go away. That’s when I pleaded with my GP to run some tests.
Now that you are following your own AS wellness plan, typically how many times a year do you go and flare and how long do they tend to last?
As I write this I am 535 days into my AS wellness plan.
In the first 365 days I had 13 flares. This may sound like a lot but I was in flare constantly prior to this and experienced no pain free periods. I was also barely sleeping.
Of those 13 flares 6 of them lasted only 6 days or less.
This was already a MASSIVE improvement. On top of this I was starting to get a few hours unbroken sleep each night as well.
In that first year, my longest pain free period was 63 days. This is by far the longest I have been pain free (or virtually pain free) in 20 years.
Over the last 170 days (which brings us up to the time of writing this) I’ve had just 3 flares. 2 of these lasted less than a week.
I have also been able to probably run for the first time without pain and for longer than a 20 – 30 second leg dragging zombie shuffle.
For the past 44 days I have been doing yoga for 15 minutes a day, a minimum of 5 times a week. My flexibility is poor and it was painful at first but even attempting this would have been impossible before.
The benefits of adding yoga in terms of pain relief, flexibility and confidence that I am going to avoid flare have been exponential.
A whole world of activities I thought were lost to me have opened up again. This is me skiing for the first time in 20 years!
How long did it take before the diet started having an effect?
I noticed an improvement with my sleep fairly very quickly, after just a few days.
Previously I was waking up every 15 minutes or so in pain or with cramp and now it was far less. While definitely not perfect it was a major difference. Getting sleep with AS is so important and so having this positive hit initially really helped motivate me to keep going.
I would say that the noticeable improvements to flare pain and severity came after the first month and got better and better over time.
The key is figuring out what works for you and what doesn’t.
What were your biggest challenges with the diet?
The early days following the diet were challenging for a few reasons:
1) Everything feels strange and new.
I’d never really even given ‘starch’ a thought previously, now I was trying to figure out which foods it was in!
This was hard at first because starch is seemingly in EVERYTHING but it gets easier every day.
At the time of writing I’m two years into the diet and now the diet feels absolutely normal and I don’t really give it a second thought. I instinctively know what I can and can’t have. Eating out is easy and it’s not even a topic of conversation when I see friends any more.
2) Naturally you make lots of mistakes, especially at the first.
This can give you a knock to your confidence.
That’s one of the reasons I’m so passionate about keeping a spreadsheet of what works and what doesn’t. You can have a great run and be virtually pain free and then suddenly you’re plunged into an excruciating flare and if you don’t know what have triggered it. This can be really tough and demotivating.
Usually I can track it to a simple mistake. For example at the start of the diet I had no idea that some fruits contained starch and I was having these giant smoothies in the morning with bananas in them (starchy) which left me in excruciating pain. They were a doubly whammy of sugar and starch.
3) Self doubt.
Most rheumatologists either haven’t heard of the diet or dismiss it as saying there’s no real evidence.
You also get some people looking at you as if you’re following some sort of tin hat fad diet. I totally get this, because it’s something most people are just completely unfamiliar with.
It’s frustrating at times trying to navigate a world which is so aggressively set on the idea that diet is a soft or woolly or unprovable approach (and that pills/injections always = cure). As soon as I noticed the positive effects of the diet I was addicted and motivated to keep going and get more pain free.
What are your five top Wellness protocols for managing your AS (and please rank how effective each of them are for you personally out of 100)
⚙️ Starch Free Diet (also no refined sugar or cow dairy) – This was THE game changer for me. People often think that diets are fads… or they don’t work… or they lack proof. This diet has been more effective for me than any medication. It’s not like a magic pill where you eat or don’t something and ‘bang’ you feel perfect. It’s hard work, lots of testing and being super strict.
It’s about figuring out exactly what triggers your particular immune system and what doesn’t. Starch and dairy seem to be a common thread in people managing their AS through diet but I have also had a really intense response to refined sugar as well (it sets my ribs on fire within an hour or two).
If you can try and elimination diet safely then I really recommend giving this a go.
🚀 Rating: 100/100 (totally life-changing)
⚙️ Walking 15,000 steps a day – Walking is something I love doing and even before I had my ‘official’ AS diagnosis this was one of the most effective pain relief strategies. One of the key parts of managing your AS has to be staying physically fit and healthy, whether you are taking biologics or managing through diet alone.
You have to keep those joints healthy and walking is a great way to do that. I also find I’m able to work (by dictating notes into my phone, which auto transcribes for me) so I can kill two birds with one stone. After a great deal of testing 15k steps seems to be the magic number for me, in terms of feeling my very best (along with all the other protocols).
🚀 Rating: 100/100
⚙️ Yoga 15 minutes a day (5 times a week) – I couldn’t even imagine doing yoga until relatively recently, it just would have been too painful and my mobility/movement was so poor it just wouldn’t have been worth it.
However after cracking the diet and figuring out what seems to trigger flares (and keep them at bay!) I’ve been able to start doing yoga and it has been an absolute revelation. Virtually every study has shown that guided stretching can be extremely beneficial for AS patients and I can now see why.
Yoga is expensive if you join a class, so I use an app on my phone which is a one off yearly fee. I actually find easier because I can just do a 15 minute session here or there. They are also so great free tutorials on YouTube.
🚀 Rating: 70/100
⚙️ Intermittent Fasting – This is perhaps the easiest protocol I follow and it packs a mighty punch. I was never really much of a morning/breakfast person and so skipping breakfast altogether has been really straightforward. The difference in inflammation levels is really noticeable.
Intermittent fasting is now widely recognised as being beneficial for everyone, regardless of whether they suffer with autoimmune disease.
🚀 Rating: 70/100
⚙️ Cold Exposure for 2 Minutes a Day – Cold exposure is incredible for lowering inflammation and an easy (and free!) way to do it is to switch your shower on the coldest setting each morning for a period of time.
I have a normal shower first and then at the end I flick it to cold and set a timer for 2 minutes. If you are just starting out you’ll need to build up gently. Start with 15 seconds and work your way up!
🚀 Rating: 60/100
⚙️ Magnesium Malate – This is another really easy thing that anyone can do. Most of us are deficient in magnesium (due to modern diets and food production methods). Those of us with autoimmune disorders are usually particularly deficient which means it’s really important to supplement.
After testing a few and looking at the various studies I take magnesium malate (in powder form). It’s the most easily absorbed by the body and from all the different types I’ve tested seems to give me the most benefit. More energy, more focus and most importantly no more AS night cramps.
🚀 Rating: 40/100
What other wellness protocols do you use to manage your diet?
I’m cutting back on alcohol as it’s inflammatory (unfortunately). When I do drink I go for less sugary ones. Beer and whisky suit me!
I’ve also found a community project near me that offers discounted sauna which I’ve found really helpful.
My big goal now is to get into running. This is something I thought I’d be able to do in a million years but now feels like an exciting challenge.
What do you think your loved ones found most challenging about your diagnosis and how did they feel about your diagnosis?
Everyone was sad to hear about my diagnosis but I think it was also nice to have answers.
One of the first things family members used to say to me was “how is your back?”, prior to diagnosis, so at least now we had an answer!
What did they find most challenging about your diet and wellness protocol?
I think the diet is the main challenge.
It is so contrary to everything we see in the media and on supermarket shelves and in restaurants. So food-wise it was a massive change.
My sister got it immediately. She’s made changes to her own diet in the past which she has found incredibly effective. She’s been a real cheerleader from the start and having that understanding, support and motivation has been amazing.
Everyone in my family has been super supportive and patient. It can be difficult at family occasions for the cook, because obviously there are so many things I can’t have, but we’ve always worked it out.
My partner’s mum has been unbelievable on this front. She’s a fantastic cook and has approached my diet as an amazing challenge. She’s made delicious starch-free cakes and biscuits and even sheep’s milk ice cream (I tolerate sheep and goat dairy. It has a different molecular structure to cow’s milk)!
My partner has been amazing throughout. Even though it was hard to adapt at first (what can Tommy eat, what can’t he eat? etc) she’s seen the profound difference the diet has made. No more grumbling about back pain, less grumpiness, no more pill popping or fatigue.
Restaurants are probably the biggest challenge now. The diet is second nature at home but obviously it’s unknown in the restaurant world. We found it quite stressful at first and often didn’t eat out but it’s not too much of a problem any more. It just requires a little pre-planning, such as checking menus in advance, or seeing if I can make tweaks to a food choice.
What helped them?
Explaining the science in the simplest way possible.
We’re all conditioned to think that diets are fads (because a lot of them are!) and that we can trust big food companies to include safe ingredients in what we eat.
What would you tell others thinking about trying the diet that you wish you knew now?
Stick with it, don’t cheat and keep a spreadsheet.
It will be challenging at times, and it’s not always easy at first, but if you can get to pain free (or close to it) then its worth every second.
Also in my experience (at least at my stage of managing AS through diet) it’s not a case of going ‘low’ or ‘reduced’.
Any amount of starch or refined sugar or cow’s milk/cheese seems to catapult me into pain and so I’ve found it just easier to avoid any trigger foods all together.
I also think it’s worth keeping an open mind about your triggers.
None of us have exactly the same genetic makeup or microbiome composition. You may have some triggers that I or other don’t. You might also discover, later down the line, that some ingredients can be reintroduced.
Even if this diet was 50% as effective as it is I would still do it, it has been that life changing in my case.
Most useful resources you’ve come across online
Anything else you’d like to share with your fellow AStronauts?
AS doesn’t need to be a prison sentence.
When I first started Googling AS it took me to some really dark places.
I assumed I would be in a wheelchair within months. I pictured injecting myself with powerful immunosuppressants and developing all sorts of terrible problems.
Instead, for the first time in 20 years I am on no medication. I sleep better, have more energy and am in infinitely less pain.
More than that I have so much more focus and clarity.
I’ve been more creative and productive in the last 24 months that I have in years. Being free of brain fog and the constant nag of debilitating pain has been absolutely life changing.
I’m not 100% of the way there yet but the road is clear and I can’t wait for the future.
You can find Tommy’s Wellness Plan here