Here Are the Dietary Changes That Reduced My AS Symptoms

Janneke Phung avatar

by Janneke Phung |

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“What did you say you can’t eat?” my friend asked me in shock as we casually strolled along a river path.

I recently had decided to tackle my ankylosing spondylitis (AS) diagnosis with radical changes to my lifestyle. I tried to think of ways to explain the drastic cuts I had made to my diet.

Ketogenic and paleo diets have become accepted and commonplace. Autoimmune protocol diets are not unheard of. People regularly cut foods such as eggs, dairy, and gluten out of their diets to reduce inflammatory reactions in their bodies. However, in addition to eliminating nearly all foods that could cause inflammation, I chose to also eliminate starch.

Starches consumed by those who are genetically susceptible to AS could enrich the growth of the Klebsiella bacteria in the large intestine. Because of the similarity between Klebsiella molecules and those found in bones and cartilage, anti-Klebsiella antibodies end up attacking joints and tendons in people with AS. This concept is called molecular mimicry and has been studied extensively by immunologist Alan Ebringer.

My goal wasn’t only to eliminate foods that could be increasing inflammation in my already inflamed body. I also hoped to stop feeding the likely overabundant Klebsiella bacteria in my gut by cutting all starches.

My unconventional but delicious breakfast. (Courtesy of Janneke Phung)

If I starved Klebsiella, then antibodies couldn’t attack my body anymore either, right? Anecdotal evidence suggested it was worth a try.

I soon realized that starch was extremely abundant in my standard U.S. diet. Initially, I was only aware of starches in foods like grains and potatoes. However, I quickly learned that starch also can be found in fruits, vegetables, spices, supplements, and nearly all processed foods.

I discovered that the starchiness of vegetables can increase drastically when cooked. Starch levels also vary in fruits and vegetables, depending on when they are harvested.

I learned that the best way to find out if something contained starch was to put a few drops of iodine tincture onto a sample of food. Once the orange-colored iodine comes into contact with the food, it will change to dark blue if starch is present.

On Nov. 20, 2019, I began this intense dietary change. I started out eating only a handful of foods. Broccoli, free-range organic chicken, extra-virgin olive oil, Himalayan salt, avocado oil, and homemade chicken bone broth sustained my body for breakfast, lunch, and dinner for longer than I care to admit. I started with so few foods because I was desperate to discover which foods, besides starch, were causing me pain. I picked these foods specifically for their low-inflammation profile.

One of my compliant lunch salads. (Courtesy of Janneke Phung)

The first few weeks were rough, especially as we entered the Christmas season. Keto flu, which results from a temporary imbalance in energy sources when starting a low-carb diet, hit me like a ton of bricks. Between nausea, headaches, and fatigue, I felt miserable. One week into this diet, I so badly wanted to throw in the towel, but I didn’t want to waste the week I had already committed, so I hung on.

I was determined to give it my best effort. My goal all along was to stick it out at least until my initial consultation with my rheumatologist, which was still several months away. If I experienced no results from the dietary changes by that point, I would gladly and eagerly accept whatever medication was recommended to me.

After a few weeks on this extremely restrictive diet, I slept through the night until morning without pain or stiffness. I was shocked! I started sleeping longer and more regularly. Gradually, the number of days I woke up without pain and stiffness outnumbered the mornings I was crippled.

Following strict compliance with this diet, I found the constant ache was virtually eliminated in a matter of months. I successfully weaned myself off all medications I’d been using to control my pain.

My “Kick AS Green Soup.” (Courtesy of Janneke Phung)

I started reintroducing some foods to increase my nutrient intake. I added one food every four days to give myself time to notice possible reactions.

By the time I went to my initial appointment with my rheumatologist, my pain was 90% gone and I was regularly sleeping through the night. I left my first appointment without a prescription simply because I no longer needed medication.

Over time, my pain has continued to decrease and sleep has become as bountiful as it can be with three young kids.

I’ve been able to thrive on a strict diet that’s customized to what my body needs to prosper, despite the presence of AS.

And as you can see in the pictures, I’m not deprived!

***

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.

Comments

Roberto Cruz avatar

Roberto Cruz

Hi Janneke,

What a lovely article. Thanks loads for sharing your story. I've also got AS and at the moment I'm only taking Arcoxia which helps with the stiffness in my hips.
Diatery has always been a savior to me as well as I've been plant based for nearly 3 years, but I would like to take a further step into trying to reduce the Starch also.
Would you be able to share some more details on what foods have you been having during this time please?

Glad to hear you're almost pain free =)
Thanks
Roberto Cruz

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Janneke Phung avatar

Janneke Phung

Hi Roberto! Thanks so much for reading my column. It is nice to know that we are not alone as we journey through life with AS! I feel so fortunate that I stumbled upon all the scientific research about starch and AS when I did. I had been eating pretty clean before starting the no starch diet but it wasn't doing much for me (see my column: https://ankylosingspondylitisnews.com/2020/12/03/what-nightly-struggle-invisible-illness-looked-like/). The Low/No Starch Lifestyle Facebook group was an enormous source of support and encouragement to me (https://www.facebook.com/groups/470884762984762). As stated in the column published today, I started out with only chicken and broccoli and healthy oils (EVOO and avocado oil) for a few months. It was not easy but knowing that I was encouraging the healing process kept me going. Since then, I have successfully reintroduced quite a few foods: many starch-free veggies, some fruit (berries mostly), coconut, eggs etc. It is important to understand though that not all people react with inflammation to the same foods. For example, you'll find quite a few people in the no/low starch Facebook group who can't have eggs. Each individual, by process of elimination and reintroduction, must discover their own sensitivities and create their own custom diet that way. It's not easy but it has been profoundly helpful for me!

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Serana Brown avatar

Serana Brown

Hi Jannette
I’ve done exactly the same as you !
Spent hours reading medical journal and online websites.
I’ve been on Keto diet for nearly two years now. Have times when my body wants more carbs. But now happy with Keto. Best thing I’m weaned off sugars and processed foods !
My AS was crippling like yourself.
The only control we have is what we put into our bodies.
I’m much like yourself. There’s not a day go by that I’m so grateful to have not only the knowledge but wisdom to try diet changes......
An now have quality of life. AS no longer dictates my lifestyle.

Thankyou for sharing with other AS patients.

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Janneke Phung avatar

Janneke Phung

Serana, your comment makes me so happy. Good on you for staying strong and feeding your body what it needs to thrive. I'm so grateful for how this diet has given me my life back. I went from being crippled and on medication to just getting off the phone with the rheumatologist for my annual appointment - which lasted only 5 minutes because there was nothing to talk about. I'm so grateful that I found the information about the diet early on as I have minimal permanent damage and, as the rheumatologist tells me, no disease progression because I don't have inflammation pain anymore. Amazing how our diets can change our lives for the better!

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Joanne avatar

Joanne

Love the recipe for the green soup!
Thanks

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Janneke Phung avatar

Janneke Phung

Thanks so much, Joanne! I am so excited you've tried it and liked it! For those wanting to try the soup: our very own Andrea (who writes her own 'Kicking AS' column at Ankylosing Spondylitis News) published the recipe on her website: http://www.forestandfauna.com/kick-as-green-soup/

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jhon smith avatar

jhon smith

Your Thought is amazing

Reply
Janneke Phung avatar

Janneke Phung

I feel so grateful to have stumbled upon this knowledge and I hope to share it with as many people as possible!

Reply
Mona avatar

Mona

Hi Janneke,
Thanks so much for this article I also have been diagnosed with AS about a year ago. I have put off Humira because of Covid and now I don't really want to because of the cancer and other risks with the medication. I am looking for natural ways to treat AS as many medications have terrible side effects and my symptoms are not debilitating. My biggest concern is uveitis and some joint pain. Yoga has helped a lot and I will be joining that facebook page you mentioned to lower my starch intake. Thank you for sharing your story.

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Pankaj Mahajan avatar

Pankaj Mahajan

Hey thanks for this article. highly appreciated your effort of sharing your experience wit major changes in routine diet. This is Pankaj from india and also suffered with AS. I hope it will help me in many ways. Thanks alot and stay blessed.. lots of love from an indian......

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