In my early 20s, I began experiencing flare-ups of a mystery, crippling lower back pain. It would happen between six to ten times a year, appearing for anywhere up to two weeks, and then vanish.
Almost 20 years on, I received a diagnosis of ankylosing spondylitis (AS), a type of arthritis that primarily affects the sacroiliac joints and can affect areas including the ribs, knees, ankles, neck, eyes, heart and lungs.
It’s an autoimmune disease, which means symptoms are caused by the immune system mistakenly attacking healthy tissue. Over time this can cause bone fusing and other not-so-brilliant complications.
Tommy Orme
Just prior to my official diagnosis, I was experiencing some form of pain almost constantly. My lower back, up to about the middle of my spine, felt like a solid concrete block.
My ankles and knees clicked with every step. I was getting neck pain and my ribs were on fire most of the time. It was painful to breathe in fully. Sometimes, when lying in bed trying to sleep, it felt like an alien was dancing a jig inside my lower back, which was quite unnerving.
But the sacroiliac joint pain was the hardest to deal with. At its very worst it was debilitating. Without the use of painkillers, I could be rooted to the same spot in agony.
Typically a flare affects one sacroiliac joint, the left or the right, and it feels like someone’s grinding shards of glass into your nerve endings on one side of your lower back.
Mentally there’s a bit of a spectrum. A low-level flare feels more like a headache in your lower back; a nagging aching sensation that’s always there. When it’s like this you can still do most day-to-day things but it can make you feel grumpy and on edge.
When things get really bad it’s like a thudding, twisting migraine in your lower back. Everything is a challenge and this can really take its toll mentally.
I’m lucky in the sense that I’ve always been an upbeat person, but there have definitely been some dark times. One morning, I woke up in the early hours in the worst flare of my life.
I tried to roll out of bed and clamber to my feet hoping to walk a few steps. With AS moving, though painful, can help reduce the pain, a bit like applying oil to a rusty hinge.
But when I tried to get up the pain was so excruciating I couldn’t move or stand on both feet. I was pinned to the spot and stood on one leg like a frozen flamingo for 20 minutes while I waited for the ibuprofen to take effect.
In hindsight, it was a ridiculous scene. But right then, in that moment, if someone had offered me a quick, painless death to stop the pain I definitely would have considered it.
Tommy Orme
That’s the worst extreme. The thing that’s possibly less talked about, but that many people with autoimmune disease will be familiar with, are some of the other seemingly random things that come with it.
In particular that feeling of brain fog, fatigue, and exhaustion. When you’re in flare, whether it is mild or severe, your immune system is in hyperdrive. It’s like having the flu. Your body is constantly fighting and you feel tired and fuzzy-headed. You just want to rest and sleep.
It becomes a vicious cycle, because the thing you need the most is lots of rest, and to keep your stress levels down, but if you can’t sleep because you’re in pain, it has the opposite effect and increases your stress levels. This then increases inflammation and can have a snowball effect.
Until I received my official diagnosis three years ago, over-the-counter ibuprofen and naproxen (NSAIDs) was all that doctors would offer me in terms of medication.
Initially, they did provide some temporary relief; they definitely helped me to walk and go about my day-to-day life, and they also helped a little with sleep if taken before bedtime.
However, they can wreak havoc on the gut. So while they helped lower inflammation, and no doubt saved me from some fusing, which I’m grateful for, they may have also aggravated the AS.
In the year prior to my official diagnosis, these anti-inflammatory painkillers had almost completely stopped working. At best, they were maybe dampening the pain by around 20 percent. At this point, I was having to take up to 12 ibuprofen a day.
The treatment normally offered for AS patients is immunosuppressant injections. They can be life-changing and absolutely the right path for many people, but there are trade-offs. They work by trying to modulate or dumb down parts of your immune system, which can bring its own risks.
Eventually, my AS had gotten so bad I was willing to try anything. I was waking 15 to 20 times a night in pain. I was in constant flare and was falling asleep at my desk three to four times a day from exhaustion. It was no longer episodic.
All the things I had dealt with and adapted to over nearly 20 years of slow disease progression had become unmanageable. I had just started my diagnosis journey and at last, thanks to a physiotherapist, I knew my condition had a name.
These were COVID-19 times, and due to pressures on the health system, lost test results, and a missing MRI scan booking, I had nine months to figure out if there was anything I could work on myself before the official diagnosis came in.
So I read every study I could get my hands on. I swatted up in forums and read other people’s stories. That’s how I came across the AS diet—the brainchild of an immunologist called Dr. Alan Ebringer, who worked in the U.K. in the 1970s to the 1990s at King’s College London.
He believed there was a connection between an overgrowth of a gut bacteria called Klebsiella and an immune system reaction, or misfiring, for people with the HLA-B27 gene variant, which 90 percent of those with AS have.
This is where it gets more complicated, and certainly where I feel more research is needed. According to Ebringer’s “molecular mimicry” theory, Klebsiella bacteria have molecules that closely resemble certain proteins in our joints. This can lead to friendly fire by the immune system and those painful flares typical of AS. This inflammation over time can also lead to vertebrae fusing and more mobility problems and pain.
This is where the diet comes in. Klebsiella feeds off starch as its primary food source and dairy as a secondary food source. The idea of the London AS diet—or the ‘no/low starch diet as it is often called—is this: Starve out the Klebsiella and stop the immune system from mistakenly attacking the joints.
Tommy Orme
Before the AS diet, I was eating almost the polar opposite of what I eat today. I love starchy foods, and would eat pasta or a sandwich most days.
This diet has completely turned what I eat on its head. I don’t eat any starch at all now, including no rice, potatoes, root vegetables or starchy fruits. I avoid vitamins that contain starchy fillers or binders.
I no longer eat any ultra-processed foods, as these usually contain secret starches like maltodextrin, dextrin, or modified starch. I’ve also cut out most dairy and refined sugar.
Now, I am nearly three years into the diet and it has been totally life-changing. I am around 95 percent pain-free 90 percent of the time, which is unbelievable.
I still have very occasional flares, but can usually come out of them within a few days. So far my longest flare-free run since starting the diet is 66 days.
In terms of timelines, I noticed some improvements within a week. For example, I started to sleep for one to two hours at a time rather than being jolted awake every 15 minutes or so. Also, the frequency and then the severity of the flares decreased.
It is not an overnight fix. During the first few months, you are figuring out what triggers pain and what doesn’t. It’s also challenging knowing what you can and can’t have, and I definitely made a lot of mistakes at the start.
Prior to the diet, I thought starch was something you use to stiffen shirt collars, then I was hunting for it on the backs of packets. I had to unlearn everything I thought I knew about food.
After a year I had really got to grips with everything and found I could start doing more and more physically. I was no longer tired all the time. I could lift things without the fear of crippling reprisals. I could sit on stools and backless chairs, and could tie my shoelaces standing up. These might sound like small things, but I felt like a new person.
Ever since then, it has been about consistency. In the first year, even though I had dramatic improvements, it always felt like I could be on the edge of a flare if I made the tiniest slip-up. Now that has flipped on its head.
While I never cheat on the diet, because the pain just isn’t worth it, occasionally I make mistakes—for example, if I go out for a meal I can’t always tell what ingredients they’ve used in the sauce—but I’ve found that my recovery from any blips keeps improving.
This diet has given me my life back. Previously I felt like my body was deteriorating decades faster than everyone around me, and that I was probably headed for an early grave.
Now, I don’t really think too much about my AS. Of course, I think about the diet, and the things I do to stay healthy and pain-free, such as yoga, but all of this feels like a positive challenge rather than a chore.
I have more energy now than I’ve had since my early 20s; I can move around like a “normal” person. It really is incredible. It feels like a kind of Benjamin Button effect.
My partner used to be able to see me coming a mile off from my zombie-like gait. I now no longer walk with a noticeable limp or stoop.
She’s an amazing dancer, and the change has been so dramatic that I think she hopes that I’ll suddenly join her on the dancefloor. Unfortunately, my sense of rhythm seems to be immune from the dietary changes so far.
Right now, I’m thinking about taking up running, which seems almost absurd given where I was just three years ago.
The future really does feel exciting.
Tommy Orme has created free online platform Gut Heroes for users to find resources including the latest research on diet and AS, links and helpful groups.
All views expressed in this article are the author’s own.
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