How Food Changed Everything for Janneke Phung

It’s a hot Thursday evening in Calgary, Canada.

Normally Janneke Phung would be settling her three little boys down for bed at this time.

Tonight instead of telling them a story, she’s sharing one with me.

It’s the story of a mystery illness that plagued Janneke for most of her life, baffling doctors and crippling her with so much pain it often felt more than she could bear.

The symptoms began following a car accident when Janneke was 16. Headaches and relentless lower back and neck pain went on for years before developing into digestive problems, aching wrists, and jaw pain. A procession of doctors and specialists prescribed muscle relaxants and painkillers but no one got to the bottom of the pain. It continued, escalating with each year that passed and becoming an unwelcome but permanent feature of Janneke’s young life.

By the time Janneke became a mother (first one little boy then a set of twins) the pain was severely impacting her ability to cope. When lifting her two young babies out of bed became impossible she decided enough was enough.

“I remember going back to my doctor and saying ‘I can’t do this. I’m not leaving until you offer me something more’. I just knew there was something seriously wrong with me at that point and things could not go on the way they were. We had to find an answer.”

The doctor arranged an MRI but huge waiting lists meant a delay of 10 months before it could be done. Janneke struggled along counting the days, and when the scan of her lower back was finally made there was some evidence of inflammatory disease. Further investigation was required, which meant another frustrating 10-month wait for another MRI scan; of the full spine and SI joints this time.

Janneke coped as she always had, living a sub-standard version of her life where movement, sleep, and basic tasks were all interrupted by pain. At times she was unable to care for her family or even get out of bed. She was filled with dread about her future, unable to imagine how she could make it through the years that stretched ahead with that level of pain.

Finally, the date of the second MRI rolled around and Janneke’s doctor was able to make a full investigation of her spine. While she would have to wait a further 8 months before seeing a rheumatologist for an official diagnosis, it was now strongly suspected she had an autoimmune arthritis called Ankylosing Spondylitis.

Janneke describes the combination of shock and relief that so often accompanies a diagnosis of AS. At last, she had a name for the mysterious pain that had dominated her life since her mid-teens.

She was 35.

“I didn’t want to wait for that rheumatologist appointment, I didn’t want to waste another minute. I started reading everything I could about AS and what I read initially was pretty discouraging.”

“I knew I wouldn’t have access to treatment until I saw the rheumatologist so I began searching online for what people were doing to help themselves. I came across a low starch diet that a lot of people seemed to find helpful, so I thought this was something I could try while I waited.”

The London Low Starch Diet for AS is well known among the AS community as a popular dietary approach. Many people report it to be highly successful in relieving symptoms and reducing disease activity. Janneke decided it was worth a try and began implementing the diet straight away.

“It was so challenging at first. I was eating an extremely limited range of food and I just wasn’t feeling any better. That first Christmas was hard, I was eating this strict diet and still felt dreadful. Luckily my husband encouraged me to continue and I was determined to stick with it, I’d already invested a lot in changing my diet and I wasn’t going to give up until I saw some results.

“I also had no real alternatives and nothing to lose”.

Thousands of people around the world follow a low or no-starch diet to manage AS. There is a Facebook group with over 13,000 members and hundreds of individual success stories from those who’ve had similar outcomes to Janneke.

Removing starch from your diet is more complicated than it sounds. Starches are contained in almost all processed foods and even some fruits and vegetables. Janneke found the diet challenging but knew eating bland food was a far better option than living in permanent pain.

After a few weeks, Janneke began to notice something incredible; her pain was definitely subsiding. She persisted with the diet and her symptoms continued to decline until one morning she realised, to her amazement, that she was completely pain-free.

With the exception of some relief during her two pregnancies, it was the first time in her adult life.

One of the worst aspects of AS pain is that it doesn’t resolve with rest. During a bad flare, sleep becomes impossible. The pain increases the longer you are still. Each day is fought through a pain-filled, sleep-deprived fog that traps the sufferer in an endless cycle of misery and exhaustion. It’s no surprise most people with AS also deal with depression.

By the time Janneke was seen by the rheumatologist, her pain had totally resolved. The evidence of past inflammation and some structural bone change was still there on her scans but she was no longer experiencing symptoms. The specialist pronounced the official diagnosis of AS but was disinterested in the dietary change Janneke was so excited by, as it fell outside the conventional medical approach.

“I went away determined to keep doing what I was doing and I really haven’t looked back. I know it’s what has helped get my pain under control, and while I might need medication at some point in the future, for now, this is a better solution than I could have asked for”.

Three years on, Janneke is still in no pain and pinches herself regularly that her life has changed so completely.

“I’m still not taking it for granted, almost every night in bed I feel so grateful I can lie there without everything hurting. It’s just so good”.

*****

As someone who had always loved to cook and eat great food, Janneke was thrilled one day to come across a starch-free food blog run by fellow AS-sufferer Andrea Wykoff. Andrea was well known amongst the AS community and often provided encouragement and advice to people looking for a more wholistic approach to managing their disease. Her recipes were full of colour and flavour and opened Janneke’s creative mind to what was still possible within the no-starch confines.

Janneke struck up a friendship with Andrea and rekindled her own love of cooking and creating recipes. It made a huge difference to be able to enjoy cooking and eating again and the diet began to feel more sustainable as a long-term solution.

Tragically, Andrea lost her life in a car accident in 2021. Her website was taken down and it seemed her archive of recipes would be lost with her. Janneke was devastated to lose her friend (I remember this time with a lot of sadness also. Andrea was a good friend of mine too, and we had collaborated on a recipe book together a few years prior).

Knowing how much Andrea’s recipes had inspired her, Janneke came up with a way to ensure her many years of work were not forgotten. She approached Andrea’s family with an idea to create a collaborative website that featured Andrea’s catalogue of recipes alongside her own. Andrea’s family was thrilled and assured Janneke that this was something she would have wanted.

The beautiful new website Starch-Free Feasting that resulted has become Janneke’s passion project.

She somehow squeezes it into her busy life homeschooling and raising her three sons and has been delighted by the feedback she’s received from people who are loving the recipes and stories she shares.

Janneke and her husband absorb the costs of running the site, which is 100% non-profit.

“It’s a tribute to Andrea’s memory and my way of paying forward the gift of renewed health I have received. I often think of other people who are lost in pain the way I was and hope what I share online might help bring someone relief”.

Janneke is a deeply spiritual person and speaks often of her faith in Jesus Christ and how it has brought her through the most difficult times of her life. While not fully understanding suffering, she believes the years of unsolved pain she went through have given her a deep empathy for others going through similar experiences.

We have been chatting for almost an hour and I start to hear the giggles of three little boys in the background. Janneke’s eyes light up whenever she mentions her sons. They are clearly the joy of her life and she describes loving every minute of being their mother.

I ask about the future and Janneke says she would love to travel with her family, provided she can navigate her dietary needs. She is slowly trying to expand her food repertoire as time goes on and her body heals and learns to once again tolerate a wider variety of foods.

Janneke remembers a night several years ago lying in bed and talking to her husband. She was sharing with him how hard it was to imagine the future, years of pain stretching on ahead of her that she didn’t think she could manage.

“I just didn’t know how I could go on living. All joy was gone when I was in so much pain”.

I ask Janneke how she thinks now about the years stretching ahead of her. Her answer has us both laughing.

“Oh I’m kind of afraid”, she says. “I’m afraid I’m going to outlive everyone!”.

Visit Janneke’s beautiful website Starch Free Feasting for recipes, inspirational stories and tips on how to eliminate starch and feel great with AS.