I have invited some of my friends from the AS Community to share their healing stories, favorite recipes, and journals in hopes of helping to inspire others who are also in the trenches trying to figure out how to survive an AS diagnosis and drastic diet changes. I am honored to be able to share this journal entry about starting the Low/No Starch Diet for AS from my friend Janneke. Read part one of Janneke’s journal here.
It’s been just over 6 months since I wrote and posted part 1 of this journey. I had initially thought that part 2 would come sooner but neither healing nor dealing with the medical system wanted to move as quickly as I did.
In February (shortly after my last post), I met with a dietician. By this point I had already achieved significant improvement from my pain and, according to bloodwork, a significant decrease in active inflammation as well. However, I was well aware of the fact that due to my limited diet there was a possibility of a nutrient deficit. I was eager to speak with the dietician about my specific diagnosis, the path of treatment I had chosen and how to give my body the best nutrients given my situation. She was kind and young and after learning about my story of pain and significant improvement with my change in diet she told me straight up that the Standard American Diet (according to the Canadian Food Guide) is a universal diet that works for everyone and that I am foolish (her word) for cutting out major food groups (namely grains – and other starches). I was told, in no uncertain terms, that I should immediately stop what I was doing and eat according to the food guide. I explained to her that I’d followed the SAD my entire life and that it wasn’t until I made changes to that diet that I started noticing improvement in my levels of pain and inflammation. She wouldn’t hear of it: “If it works for others why wouldn’t the Standard American Diet work for you?”. There wasn’t much to talk about after that so we ended the appointment early – agreeing to disagree.
In February I also met with ‘my’ rheumatologist for the first time – a highly respected and renowned rheumatologist in our city. The reason I had initially started the diet was because it was a 5 month wait to see her (I wanted to do ‘something’ while I waited to see her) – so this was a big appointment and I was eager to speak with someone who was an expert in the field of arthritis – specifically Ankylosing Spondylitis. I remember sitting in her waiting room – I was the only person there who didn’t have a walker or a wheelchair.
She was lovely.
Upon hearing my story, measuring my limited range of motion, and seeing my initial bloodwork and radiographs she immediately gave me the official diagnosis of AS (I’d had a strong suspicion but this was the official diagnosis by an expert). She asked me how I was feeling and if I needed additional medication to control the pain. I explained that while waiting to see her I’d stumbled upon this ‘no starch diet for AS’ and that I’d given it a go and that it had resulted in successfully weaning myself off all over-the-counter and prescription pain medication, that I slept through the night without pain, that I woke up without stiffness, that I no longer felt the need to use heat packs or ice packs or TENS unit and, most importantly, that I often felt as though I had no disease at all. She said “None of that has been scientifically proven, you know? But, I guess starving yourself is one way of getting rid of inflammation”. I respect her perspective but I was pleased, at least for this appointment, to leave without a prescription for any sort of medication – simply because there was no need for it.
Improvement of my symptoms has been remarkable since starting this diet. Good days now far outnumber the days where I feel debilitating pain. Every day I continue to see more improvement. I can’t even describe how much better I am able to function with proper sleep (pain no longer wakes me nightly at 3am – I sleep until my alarm clock wakes me up every single day without fail)! My quality of life has improved dramatically from a year ago.
However, my diet still leaves something to be desired. The quality of my food is pretty impeccable but the variety needs improvement – which is a slow process of reintroductions (often failing reintroductions and having to wait for pain to fade away before trying a new food to ‘challenge’). Like many diseases, AS is complicated. Diet is one piece of the puzzle but barometric pressure (weather), stress, exercise, permanent damage done prior to diagnosis/diet etc. all play a role in how I feel. I try to limit the variables as much as possible but that’s probably why I haven’t progressed with variety in my diet as much as I had hoped.
The wall that I come up against is mainly the feeling of this treatment plan being one big experiment and me feeling like a complete amateur. I have found health professionals who are in my corner: they help and support me (mainly my naturopath and chiropractor) and keep me upright. However, I have spent hours and hours studying scientific research papers about AS and researching alternative treatment as I haven’t (yet) found a health professional who is an expert in treating this disease from a non-pharmaceutical perspective. I am my own experiment and that can be so exhausting and terrifying – I’m learning from experience that one minor slip-up (like taking a supplement that contains starch of any sort) can cause weeks of agony.
On the bright side: all of the effort seems to be paying off even though it is often 2 steps forward and then 1 backwards.
As I write this, I realise there is a hint of arrogance to my words – the idea that I think I know better than the professionals. I don’t know better and I am acutely aware of that as I travel this journey. My goal is just different from that of the mainstream health professionals. For example, my rheumatologist (who is the only health professional my family doctor will refer me to for this disease) is an expert at helping people get out of pain by masking the problem with medication. Oftentimes, medication eventually stops working and pain returns and this becomes a life-long battle of pain and inflammation and progression of the disease and, in many cases, fusion of the spine and irreversible disability. The treatment path I am choosing to follow seeks to treat the cause of the inflammation, thus halting progression of disease and, in best-case scenario (which is not uncommon amongst the population choosing this route), eventually resulting in remission of the disease.
This no-starch autoimmune elimination diet I am on is not ideal in terms of a social perspective. My necessary diet change truly has become a lifestyle change and it affects not only myself but also my family, friends and social life. No restaurant caters to my current diet so I pack all of my own food (our dates now consist of renting electric scooters downtown and eating a picnic dinner by the river instead of enjoying food at a restaurant). The hardest moments are still not being able to eat my mother-in-law’s amazing dishes, or my mom’s comfort food, or enjoying bubble tea on a hot day.
I’m often surprised by how much food affects us. I always knew I loved food but I didn’t realise that food would be such a great way of showing tangible love and care for others. When my father-in-law passed away unexpectedly in June dear friends of ours gifted me a bottle of avocado oil and I got choked up because of how thoughtful a gift it was. Then there was the time when my mother-in-law gave us a massive box of blueberries, or when my parents gave me beef tenderloin steaks to enjoy on my birthday, or when I was gifted free range chickens or fresh garden herbs (you know who you are!). Each time I was thoughtfully gifted food I wanted to cry as the gift of healthy, nourishing and compliant food felt like such a tangible way of showing love and care and support. Never did I think that blueberries and chicken wings would be my favorite foods – but they are, for now – nor did I think that food could evoke such emotion – but it can.
At the end of July 2020, after an 18 month wait, I went in for another MRI – this time a full scan of my spine and SI joints. Results came back showing very little active inflammation but evidence of significant past inflammation which has resulted in some permanent damage to parts of my spine and SI joints. Some of this damage that has resulted from years of pain and inflammation will possibly continue to cause discomfort (especially if I become sedentary or with significant changes in barometric pressure, stress etc.).
However, the amazing news is that this no-starch lifestyle is doing exactly what it is supposed to do: reduce and eliminate inflammation so that the disease has no opportunity to progress. Despite Covid, I’ve been able to enjoy this summer so much: pulling my twins in the bike trailer when we go for rides around the city, pain-free camping, reading books with my kids all piled on top of me, numerous trips to the mountains, many walks, picnics and fun adventures as a family and feeling rested and well enough to enjoy it (and especially ‘them’!) all! Never did I think I would be that ‘crunchy mom’ all focussed on health and homeschooling – but look at me now 🙂 My hope is that with time and healing my body will eventually better tolerate food reintroductions. Until then, I will wake up grateful every morning for no pain or stiffness, I will thank God for providing me with nourishing foods that heal my body and I will celebrate my family and friends who walk this crazy journey with me!
And honestly, I secretly think that my meals often look better than your meals.