*Starch-Free Success Stories* Guest Blog: Tommy O.
My favorite quote of Tommy’s: “We miss a trick if we outsource all responsibility for our health to that brief, 10-minute appointment with our GP or rheumatologist. There are things we can explore and work on which can have a profound impact!“
Tommy’s story reminds me so much of my own! The pain. The struggle to get a diagnosis. The grasping at straws in terms of diet modifications prior to an official diagnosis. The grit. And, eventually, the massive pay-off. Tommy has given an incredible and detailed insight into his journey in this ‘Q&A-style’ blog post. Grab a tea and dive in!
Tommy’s post is part of the “Starch-Free Success Stories” series.
What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?
It took nearly 20 years to discover my mystery back pain had a name: ankylosing spondylitis (or AS).
I experienced my first lower back flares when I was 19 – a stabbing, pinching, almost electric pain that seemed to come out of nowhere, stay for 10 to 14 days, and then vanish. Sometimes it was on the right side, sometimes on the left and this made the cause even more baffling.
At first, the flares were fairly infrequent – maybe 6 – 8 a year – but this increased to 12+ a year and later became a constant. That’s one of the cruel things about AS. You don’t just wake up one day plagued with all these debilitating symptoms. It happens slowly over time. Little by little it robs you of your mobility until the pain becomes part of your daily normal.
Before my diagnosis, I treated the pain with ibuprofen (an NSAID) and this helped me get on with normal day-to-day activities. Without it, there were times where I literally would be rooted to the spot in pain.
Things got progressively worse as I got older. The stiffness became really noticeable. By my early thirties, it felt like my spine had become a solid, single lump of rock. Completely flat, rigid, and immovable. Mornings were particularly bad: the stiffness would loosen up as the day progressed, but any periods of non-mobility brought it right back again.
Then things shifted a gear yet again after I broke my collarbone. Post-surgery I was immobile and on a giddy cocktail of antibiotics, Naproxen, and Co-codamol for 3 weeks. This seemed to trigger a new phase and in the months that followed, my AS went from being irritating and restricting (and excruciating during flares) to hounding me on a daily basis.
It affected my sleep every night. It changed the way I walked and moved. I had to think about every chair I sat on, every movement I made. Basic things – like wearing a different pair of shoes – could trigger weeks of pain.
It wasn’t until 2021 that I got my ‘official’ ankylosing spondylitis diagnosis – 19 years after the mystery sacroiliac joint pains first started appearing and a year after I approached my GP. My diagnosis journey was difficult (several lost test results and an MRI scan that my rheumatologist forgot to book) but eventually, we got there and in December 2021 my AS diagnosis came through.
It was a huge relief (at last, a reason for the mystery pain!) but I found the diagnosis gauntlet extremely stressful. However, it did mean I had much longer to give the diet a proper go so there was a silver lining!
What has been your approach to healing?
My approach to managing my AS has been to research and then test, test, test. I look at what seems to be working and providing pain relief for others and then try it on myself (as long as it’s safe to do so) and keep rigorous notes.
I augment this with my own research so I can build confidence in what I’m doing. So for example, why cut starch from your diet? What’s the science behind this? Google Scholar is a great place to get geeky with the latest findings.
If you can understand the ‘why’ (or at least the theory behind autoimmune disease and gut health) it’s far easier to get on board and stay motivated with the ‘doing’ part. It can also lead to other interesting discoveries because you’re more tuned into the process and how your body works.
The most effective thing I have done, by far, is to keep a detailed spreadsheet. We all have slightly different genes and microbiomes, and there are different environmental factors at play. That’s why keeping track of everything is so important. There is no ‘one size fits all’ solution but there are things that have proved very effective for a lot of people. I list everything I eat and drink and the exercise I do each day. Then if I’m feeling particularly good, or if I have a flare, I can look at my spreadsheet and try and see if there are any correlations. Could it be this food that caused a flare? Did this exercise help with the stiffness in my lower back? And so on.
Keep records has been life-changing in terms of discovering what triggers pain and what makes me feel great. It might sound like a lot of work, but typically it only takes 5 – 10 minutes a day. It has also helped clear up dry skin problems, eye related issues and some of the excess baggage I was carrying on my stomach seems to have melted away!
If ever I’m struggling for inspiration, I head to the ‘Low/No Starch Lifestyle for Ankylosing Spondylitis’ Facebook group. It’s a hive mind of smart, knowledgeable, empathetic people who are passionate about managing their AS through diet and lifestyle in an evidence-driven, methodical way.
What led you to try a healing diet approach?
The thing that first led me to the low/no starch diet was really that delay in getting a diagnosis. I had a year to play with ‘home treatment’ and although I didn’t have my official diagnosis yet, I knew from everything I was reading (and from my HLA-B27+ result) that I was dealing with ankylosing spondylitis.
When I started researching I quickly discovered the medical community is pretty open about the fact that they don’t really know what causes Ankylosing Spondylitis. The literature on the NHS (UK health service) website and other international healthcare websites all seemed quite vague and woolly. Treatments centered around using drugs to either suppress the immune system or blitz the inflammation. There wasn’t much emphasis on identifying the root cause.
While both of these drug treatments can offer enormous benefits for some (and prevent pain and potential bone fusing) these were paths I wanted to try to avoid if possible.
So I started looking at all the ankylosing spondylitis studies I could get my hands on. I scoured different charity websites (also a great source of information). Before long, I found strong evidence there may be a connection between gut health and autoimmune disease.
At this point, I came across the work of Dr. Erbringer and the legendary ‘Kick AS’ website. The next few evenings were spent going down a rabbit hole reading different people’s stories and testimonies and how they managed their AS.
That’s when I decided I would give the diet a go. In my case, there was absolutely nothing to lose and it seemed like something that would be safe and relatively straightforward to test.
Things really fell into place when I joined the ‘Low/No Starch Lifestyle for Ankylosing Spondylitis’ Facebook group. These people were already winning with their AS. Between them, they had tested hundreds of different variables and everyone was sharing what worked and what didn’t. So that was the moment of clarity for me and when I started making real progress.
What was the lowest point on your health journey?
The lowest point on my health journey was at the height of my AS pain. Everything felt like a trial. There was no let-up. I was in constant flare and it was physically and mentally exhausting.
Then one night I woke up at 3 am to the most excruciating pain I have ever experienced. It felt like glass being twisted and ripped on a pinched nerve, constantly. I was in so much pain I couldn’t speak or cry out and could barely breathe. I’d had debilitating flares before but this was so bad that if I’d been given a euphanasia button I would have pressed it without hesitation.
It had been several months leading up to this moment. I was in pain sitting down or lying down and the only time I felt ok was when I was out walking for very long periods.
But to start walking, I had to slather Biofreeze on my lower back and stick TENS machine pads over my SI joints (and sometimes my ribs). This would help me break through the initial pain barrier. I timed it and it always took exactly 1 hour and 10 minutes before the pain would start drifting away. Then I would have this magical window where I felt like I could have free-flowing thoughts and stop being aware of or thinking about the pain.
There were moments when I felt like I was standing outside of myself looking in. I’ve always been lucky with my mental health, and I’m a generally happy person, but increasingly couldn’t help wondering what the point of all this was. This wasn’t a life worth living. All I was doing was trying to snatch fleeting moments of peace.
When got home from my walks, I knew that within 30 minutes I wouldn’t be able to sit down for more than a minute or two without being in pain. Going to bed would be more torture later on.
Bed should be the place where you can finally relax and let go of the day, but I was waking up 15 to 20 times a night with pain in my joints and terrible cramp in my legs.
What challenges led you to seek a diagnosis, and inspired you to try a healing diet? Basically, what was the tipping point?
So that was my tipping point. It was the realization that something was very badly wrong. This wasn’t back pain from having a desk job, lack of exercise, or any of the things that GPs and physios had told me in the past. My body was fighting something.
I remember lying in bed and I could actually feel something dancing around my body, between my SI joints, and up my spine. It was like an army of tiny aliens inside me. This terrified me. It was another one of those moments where you feel like you’re standing outside of yourself, looking back in horror at what’s happening.
Given what I was already reading about autoimmune disease, the gut, and the microbiome, a starch-free diet didn’t seem weird in the slightest. It felt like something that would be easy to try (and, frankly, I would have tried anything at this stage).
It really helped to know that there was a whole community of people doing this too and having positive results. This helped motivate and push me to give it a go. I think it also helped convince the people around me, who may have been skeptical at first, that this was something worth trying.
Which healing diet protocols have you used?
In terms of diet, I’ve broadly stuck to the central themes of the low/no starch diet. However, I have heavily customized it to suit my unique needs. Some of the things listed on the diet as being safe for some people seemed to trigger problems for me. I quickly found the best approach (for me at least) was to create my own diet from scratch while still using the core principles of the low/no starch diet as a foundation. I then built up from there.
It was easy to establish from the outset that both starch and cow dairy (as Dr. Ebringer found) triggered AS pain for me. There was a clear correlation even when I didn’t know I was eating it. While I never intentionally ate starch, I made some mistakes at the start. When you are new to all this, and learning from scratch, it can be overwhelming.
What is starch? Where does it appear? I used to think it was something that you used to stiffen shirt collars. Now I was checking the backs of packets to see whether it was being used as a binding agent.
So I made a few slip-ups early on such as eating bananas in my first week (starchy). A few weeks later I started taking vitamin supplements which had starch in them too. In both cases (and a few others), I couldn’t work out what was causing the pain until I looked back at my spreadsheet. I went through everything I had eaten and Googled the various ingredients to see if I’d missed something. When they came up as having starch – and the times lined up with the onset of pain – it was a wonderful moment of realization.
Finally! Something that works!
When you found a protocol to help you heal, what was it and what was your first indication that it was working?
In terms of pain relief, my first indication that the diet was working was an immediate improvement in sleep. Sleep had become almost non-existent. I was waking up in 15 to 30-minute increments throughout the night with pain in my SI joints and intense cramps in my lower legs. Almost within a week of trying the low/no starch diet I experienced some relief and for the first time in years, I slept for a few hours at a time.
It wasn’t perfect sleep, and I wouldn’t say I’ve ‘arrived’ yet, even now), but the difference it made to my energy levels, focus, and well-being was unbelievable. At this point, I knew this was absolutely something I had to pursue.
In terms of my SI joint pain, I started to really see some positive results after about a month. This coincided with me getting stricter and more knowledgeable about the diet. Specifically understanding what I could and couldn’t have and making less mistakes. Also, I believe coming off the NSAIDs helped (although this may not be right for everyone).
What foods are you most sensitive to? Which foods do you avoid?
I avoid starch like the plague. It’s a fast and painful trigger for me.
Sugar, particularly refined sugar, also causes big problems (even blended fruit). Rather than affecting the SI joints this seems to cause pain in my upper body around the ribs.
I also avoid cow dairy. It wasn’t something I ate a lot of before, but I certainly got triggered when I tried reintroducing cheese.
Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?
Understanding pain triggers has had a profound effect on my life. Because I’d had a full year of successfully managing my AS through diet and exercise (before my official diagnosis) I’ve been able to avoid biologics altogether, which is incredible. Treatment-wise, I have only ever used NSAIDs to manage my AS.
When things were really bad, pre-diagnosis, my GP and physio recommended taking NSAIDs in very high doses. At one point I was taking up to 12 ibuprofen tablets a day but they just seemed to stop working at some point. If I hadn’t found the diet, I would have gone the biologics route.
Share any personal victories your real food journey has helped you achieve!
It’s hard to overstate how much of an impact these lifestyle changes have made.
I sleep better.
I have more focus.
There are long periods now where I feel pain-free or virtually pain-free.
There have even been moments where I’ve forgotten that I have AS! I sometimes look back at the diary I kept to remind myself how lucky I am to have found something that works.
It might sound like a small thing – especially if you don’t have AS – but a few months ago I was out on one of my walks and it occurred to me that if I wanted to I could break into a run. This wasn’t something I could have dreamed possible before.
Previously, all I could manage was a painful speed hobble. I’d learned, over the years, to walk in a rigid, upright way and avoid any movements that could trigger a flare. In this moment, on a beautiful, sunny day in London, I felt like Forrest Gump – ready to break free from his shackles.
Where do you source ingredients for your recipes and daily life?
I buy a lot online, especially supplement-wise. I take a lot of weird and wonderful powders and tinctures for gut health – specifically to try and repair my gut lining. While I try to use smaller, local shops where possible, sometimes iHerb or Amazon are the only options.
For everything else, larger supermarket chains seem to have everything I need.
What do you eat when you are HUNGRY (or HANGRY!) and need something quick?
When I’m hungry my ‘go-to’ snack is a whole avocado. It takes 30 seconds to cut and peel, tastes great, and feels like it actually relieves inflammation. Our local supermarket sells bundles of what they call ‘wonky avocados’ (ones that don’t look perfect and are odd sizes) which makes it easier on the wallet and they taste just the same.
My favorite snack is pork scratchings (natural ones with no added ingredients other than salt). It’s hard to find crunchy things on the no-starch diet and pork scratchings (or rinds) they really tick that box.
Another great snack, if you are tolerant, is konjac or shirataki noodles. I loved pasta pre-diet and missed the taste. These noodles (made from the starch-free corm of the konjac yam) taste good and don’t seem to trigger any problems. I boil them for 3 minutes, drain, then fry them in any leftover fat in the frying pan and/or add a little olive tapenade for 7 or 8 minutes. It’s a quick and easy dish that takes just over 10 minutes to make. It also makes me feel relatively normal as if I’m eating something that non-AS humans can have!
Goat’s yogurt (which luckily I seem to tolerate in small amounts) is my favorite pudding. I take it with a small teaspoon of wild honey and some blueberries or raspberries. It tastes absolutely incredible and is quick to make.
Favorite ways to pamper yourself, self-care:
If the AS is rearing its head and I’m looking to comfort myself, I have a small heated electric blanket close by. Putting this on a bed or a chair can really help.
Other than that, going for walks in nature, while listening to podcasts, is one of my favorite things in the world. I rarely say no to a good whisky either.
Your go-to easy breakfast, and how you start each day:
I have quite a specific morning routine!
I start the day with a hot shower and then switch it to the coldest setting for 2 minutes. This really sets me up for the day. It feels like torture for the first few seconds but it helps dissolve some of that lower back stiffness. I also find it really boosts energy levels and focus. It’s like having a triple espresso only without the jitters!
I don’t have breakfast and this is one of the biggest breakthroughs I’ve had with the diet to date. I had read previously that intermittent fasting can be helpful, not just for people with autoimmune disorders but for everyone, so I experimented for a couple of weeks. This was a game-changer for me. I’ve found it provides an enormous amount of pain relief. If I do have breakfast, for example, if I’m on holiday or staying with friends, then a proper English fry-up (without the bread or beans) is hard to beat.
Alternative therapies you have used:
I’ve had mixed results with acupuncture over the years. Sometimes it has been amazing, other times it has triggered flares.
Cold/hot exposure is one of the most impactful therapies I’ve tried and as well as my daily cold shower I go to Banya a few times a year. Banya is a Russian invention, and it can do wonders for AS. You sit in a sauna for 20 minutes, then jump into an ice-cold plunge pool straight after. After a break, you repeat the process. You could also replicate this at any gym or wellness center that has saunas and ice baths. It can lift me out of a flare like nothing else. If I’m already feeling good I’ll come out feeling even better!
Yoga is also something I’ve started on recently and it’s already having an incredible effect. It’s still early days but it feels like this will become a core part of my routine.
It can seem like our lives are consumed by a chronic illness, but there is so much beyond those struggles. What brings you joy?
Hobby-wise reading and photography are the two things I’m passionate about. They help keep me going even when I’m going through difficult patches.
Each day I go out walking with my camera and document the weird and wonderful things London has to offer.
My partner’s incredible (starch-free) baking also has get a mention here!
Something unique most people don’t know about you:
Something unique people might not know about me is that I cut my own hair. (Although they’ll probably realize if they look close enough! Like hay through a lawnmower).
Words of wisdom you’ve learned on your journey:
There is still so much more to learn about our biology and this is thrilling. We’re really just touching the surface. Modern medicine has found cures for so many previously fatal illnesses and gifted us long lifespans. Antibiotics and vaccines really are marvels of the modern era… but there are still large gaps in our knowledge, particularly when it comes to the microbiome and the world of microscopic organisms living alongside us, symbiotically.
If we outsource all responsibility for our health to that brief, 10-minute appointment with our GP or rheumatologist we miss out on so much. There are things we can explore and work on ourselves which can have a profound impact.
Advice for people who are just starting out:
Be patient, be thorough, monitor everything, and have grit and determination.
Develop a thick skin and have confidence in what you’re doing. Most of the world has never heard of ankylosing spondylitis and sometimes it feels like parts of the medical community are still running off textbooks from the 1990s. There can also be a real stigma against diet. People often think they’re faddy, fussy, or ‘middle class’ and not a serious treatment option for autoimmune disease. You will often come up against people – even learned medical professionals with decades of experience – who don’t believe in diet and that’s fine. This is your body and your health.
If there are diet modifications you can try safely there’s absolutely nothing to lose. Do it right and do it thoroughly. Don’t cheat!
See how you get on and if you experience any setbacks that’s ok. Maybe you accidentally ate something starchy? It might be something you else missed. It might be something you don’t understand yet because you’re new to the diet.
Sometimes it can be something completely external, like stress, which can trigger pain regardless of how perfectly you are following your diet or exercise regime.
There are three things we have to respect at all times:
1) Stress
2) Diet
3) Exercise
Take care of all three and wonderful things can happen!
Lastly Janneke, I just want to thank you for all the fantastic work you are doing here. You really are an inspiration. Onwards and upwards!
Tommy created The Happy Back website as a valuable free resource that’s specifically catered to those with AS.
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