The Diet That Brings Me Sweet Relief From AS Pain
A no-starch diet has been life-changing for columnist Jemma Newman
After many months on the hospital waiting list, I was looking forward to my first rheumatologist appointment. I had high hopes that I’d be prescribed medication that could help with my horrible nighttime pain from ankylosing spondylitis (AS).
I already wasn’t coping with the pain and insomnia, and because AS is a chronic and degenerative disease, I knew things were going to get worse. But I tried to keep my hopes up. Because I tested positive for the HLA-B27 genetic marker that often accompanies AS, have a family history of the disease, and was experiencing the pain and stiffness that are common indicators of AS, I was sure I’d get help from a rheumatologist.
My hopes were dashed at that hospital appointment, and I left disappointed and desperate. The rheumatologist explained that my joints weren’t yet degraded enough to meet the strict Australian criteria for biologics that would stop my disease from progressing and help manage my pain.
In other words, I wasn’t crippled enough yet, even though the disease was affecting my life significantly and stopping me from doing many simple daily tasks.
The future looked bleak
I was sent on my way with a prescription for nonsteroidal anti-inflammatory drugs (NSAIDs), as well as medication to hopefully prevent them from ruining my stomach from long-term use. I was already having stomach pain from trying other NSAIDs, and I was anxious about relying on them for ongoing pain management.
In the car on the way home, I tried to hold back the tears. I was scared when I thought about my future with chronic disease and lack of options. It’s hard to understand how you can be diagnosed with a disease, but have to wait for it to become even worse before you’re allowed the tested and proven solution. Why not slow or stop disease progression early on, before your joints become completely fused or you’re unable to look after yourself?
Looking for an alternative
That evening, I started searching in earnest for an alternative that would help alleviate my pain. I researched autoimmune diseases and was fascinated to learn that diet can have a significant impact on reducing inflammation and calming the immune system.
“Has anyone tried to improve their AS pain by changing their diet?” I asked in a Facebook group for ankylosing spondylitis. Replies flew in from the AS community, with several people mentioning the no-starch diet. I’d never heard of it and was intrigued.
The diet that improved my life with AS
As I looked into the no-starch diet, I was delighted to find plenty of research and studies specific to AS. On the KickAS website, I read about immunologist Alan Ebringer’s studies, which explained that Klebsiella bacteria in our gut have molecules that mimic the HLA-B27 marker. These bacteria feed on starch, and by following a no-starch diet and reducing the amount of Klebsiella, Ebringer reasoned, we can reduce AS pain.
I gained further insight into reducing inflammation from molecular biologist Rebecca Fett’s book “The Keystone Approach: Healing Arthritis and Psoriasis by Restoring the Microbiome.” My eyes flew over the pages as she explained how gut bacteria affect ankylosing spondylitis, and she shared specific, evidence-based steps that can reduce pain and inflammation.
With some trepidation but a huge amount of determination to reduce my pain, I started the no-starch diet. I stocked up on steak, chicken, fresh herbs, and green vegetables and launched into an elimination diet, which excludes all the foods you suspect are causing issues and allows you to identify the ones you react badly to.
Unfortunately, I chose the worst day to start my new diet, as I had a friend’s engagement party to attend. It was torture looking at the table groaning with gorgeous cakes, pastries, and other starchy foods. I had to sit on my hands to stop myself from reaching for those mouthwatering treats.
It was worth the self-restraint. Within weeks, my back and sacroiliac joint pain was reduced to a point where I knew the diet was working. I was so excited that I hopped around the house in jubilation. Within four months, I tried stopping my pain medication to see if I’d be able to sleep without it. To my absolute delight, I was getting longer and better sleep without painkillers — simply by strictly following the no-starch diet.
Pain is a powerful motivator. It’s been three years since I started the no-starch diet, and it’s been so effective in my fight against AS that I haven’t been tempted to take a single bite of buttery croissant or sample a slice of hot pizza. It’s been challenging to completely change my diet, but absolutely worth it to enjoy bike rides with my family, swing my children around, and sleep through the night.
Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.
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Anne Kingston
So interesting that you have posted this article. I found out from a Bowen therapist about the non starch diet as she had heard Alan Erbringer's talk. You do wonder why no doctor has thought to mention it as it costs nothing to try this. I am not yet no starch but have significantly reduced starch in my lifestyle and feel so much better. I have a degree in somatic movement and have danced for most of my life which has also kept me supple and moving. Since the menopause I developed extreme ezcema, never had it before, but after many trials and errors discoverd that if I take a high dose of Vitamin D it is hardly a problem. It is amazing what you can do if you keep an open and enquiring mind. Good luck with keeping your AS at bay. X
Jemma Newman
Hi Anne, thanks for commenting, it's lovely to hear what others are trying! I must admit that I had to google 'somatic movement', it sounds quite amazing for staying mobile. Having a proactive attitude makes all the difference, doesn't it? I did ask my rheumatologist about the diet and he looked puzzled. I really do wish more doctors knew about the no-starch diet for AS, I suppose the difficulty is that we're all so different and it's not as simple as prescribing a pill. However, I do have hope that the more our medical system studies gut health, the more help there will be for people with all kinds of diseases.
Juliette Newell
Hi
I am from Australia too, my son has been unwell with scleritis and lower back pain.
Im interested in the elimination diet, could you tell me what that is and is there someone who can instruct us on how to do this diet.
Thank you
Jemma Newman
Hi Juliette, nice to have another Australian joining the conversation! I'm so sorry to hear about your son. Unfortunately I can't recommend a specific doctor or nutrition who could instruct on the diet, I wish that I could but I found that the people I contacted did not have understanding of this specific diet for AS. If your son gets diagnosed with AS I would highly recommend the book by Rebecca Fett that I linked above in my article, it's very easy to understand and implement. From what I understand, healing the gut has many benefits for lots of different autoimmune diseases, and perhaps a more general autoimmune protocol diet would help reduce his inflammation if it's not AS (you can google 'autoimmune protocol diet'). I hope he finds something that helps!
Jean Edwards
Lots of great ideas and information- thank you! I'm just wondering if you find there there is anything specific besides diet that can cause a flareup? I'm thinking perhaps keeping a diary might help- but maybe that would be going over the top and focussing too much on the AS-?
Jemma Newman
Hi Jean, thanks for your lovely comment! In my opinion there are lots of things that cause me to flare up aside from food. Off the top of my head, stress is a huge one, as is too little exercise or movement, too MUCH exercise, too much alcohol, changes in the weather, and I've also noticed that when I'm sick with something else (like a cold or flu) my back and SI joints become much more painful. I suppose it's the extra inflammation. I think keeping a diary is a wonderful idea. I can't always plan or avoid the things that make me flare, but it helps me understand it better and not worry as much.
Pat Jensen
After researching the kinds of drugs that I was prescribed, I decided to look on the Internet to find out if there are other things that may help my AS. I came across the no starch diet and decided to give it a serious try. Within two weeks my all-over body pain had diminished to nearly nothing. It was then that I decided I could live without the potatoes, bread, pasta etc.
When I told my rheumatologist about my success with this diet, he looked at me like I was from Mars. He also was a bit angry and dismissive. Needless to say, I found a new rheumatologist after but she also looks at it strangely.
It’s a shame that this isn’t told to us because most people just go ahead and do whatever the doctor tells them and don’t look elsewhere to learn more. I know that it doesn’t work for everybody but I can’t help but think of all the people that this may have helped who never knew about it.
Jemma Newman
Pat, it sounds like we have had very similar experiences. I agree, it's such a shame that this diet isn't more widely known, thank goodness for the internet, right? Good on you for proactively seeking answers and not taking 'no' as the final word. I'm delighted to hear that your pain has reduced significantly.
Mark
This diet works. Many people with the disease are very dismissive of the diet and I get why. They are in a lot of pain and the idea of food replacing biological therapies sounds like clap trap. So here is the proof. Pain is subjective but cases of HLA B27 related Acute Anterior Uveitis is not. I went from spending over half a year with steroids in my eyes and visiting the eye emergency ward every four to six weeks to not going for over two years. The days where I allow myself some starch are followed with increased pain. I’ve been on it for a decade and I found that allowing myself a home made pizza once a week stopped me going crazy every time I passed a bakery. Sour dough I found to be the least bad of the starches and I love pizza. So give it a try and keep an open mind, it takes a little time to work through what to eat and also for it to work. But now I take no meds, my BASDAI pain index went from 7.2 and now floats around the 2 mark. Good luck AS kickers.
Lorraine Burnham
Hi ... i have been following a no starch diet for almost 20 years now . I came across Carol Sinclairs Book about the No starch diet . It cured all my pain , inflammation, and iritis . If I lapse for even a short while , my AS symptoms return. This way of eating is hard sometimes, but well worth it .
My prize is great health and happiness. I pay attention to getting enough exercise and nutrition . ( I grow and eat micro greens, I avoid nightshade vegetables)
I am 64 this year , I was diagnosed when I was 24.