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.
My name is Janneke. My identity? I am a Jesus follower. I am a daughter to hardworking and loving parents (and now also a daughter to lovingly embracing and generous in-laws). I am the sister to 4 siblings (and now 5 more in-law siblings). I am the wife of a man who loves and supports me generously in every way. And now, after years of infertility, I am even a mother to 3 boys: a 5 year old and two year old twins – all three are such miracles and such gifts I don’t take for granted! Most recently I have been given a new label (if I let it be that!): I am a sufferer of Ankylosing Spondylitis.
For decades I’ve had complaints of random ailments. I always thought of these ailments as independent of each other (and treated them that way as well) but I have always thought of myself as a person with a broken body. People around me were strong and healthy and I always seemed to have an ache or a pain or an inflammatory reaction to some activity that other people had no problem with (a gentle jog around the pond had me crippled for days afterwards). I sometimes blamed the pain on that car accident I was in when I was a teenager, or the emotional stress of a tense family situation for some time, or…or maybe I just didn’t know how to jog properly?! Either way, often the pain I experienced caused me to be unable to freely do the things I loved: reading books for lengthy periods of time (which is partially why I ended up reading cookbooks for fun) and scrapbooking were out of the question and lifting my babies from their cribs to nurse them in the middle of the night became nearly impossible.
Since the birth of my children I started struggling to make it through the night without pain. Trying to get as much of a pain-free and restful sleep as possible became a challenge which I tried hard to succeed at. At one point my bedtime routine included prepping at least as many pillows as a pregnant woman to support every area of my body (one for between the knees, one to hug, one for my low back and of course, one for my head) – and even then I couldn’t curl up or lean my shoulder forward too much when I lay on my side or I’d wake up in pain. I needed night guards for my teeth (grinding teeth is a natural response to pain and has resulted in significant TMJ issues for me). I needed earplugs (and a sound machine at the same time in the background) to drown out any noise that might wake me. I wore wrist guards because my wrists ached and became weak from holding my babies as I nursed them. I had a hot shower every night before bed. I rubbed A535 on my hips for good measure. I used a heat pack on my low back. And the cherry on top: Naproxen x 2 and a Tylenol before bed. All this. Every night. I’d be thrilled if it got me to 4am (which rarely happened: it’s tough to stay asleep when your body hurts). On bad nights costochondritis (inflammation of the cartilage that attaches the ribs to the breastbone, and those with AS are more susceptible to it) would keep me up for hours – pain so sharp that I’d only be able to take short, shallow breaths while sitting up in bed. Every now and then I’d have a bit of a flare in my SI joint and I’d need my husband’s help to get out of bed as I writhed in pain. At age 35 I would wake up every morning moving as slowly and stiffly as a 100 year old lady (actually, my grandmother at age 100 was more mobile than I was in the mornings). I went through 4 mattresses in 1 year only to find out I was the problem, not the mattress.
By 8am, when my doctor’s office opened, my body would often be moving slightly more easily already and my pain seemed insignificant (to doctors, anyway). My pain was never in the same place and my response to the question: “Is the pain sharp or dull or deep or do you feel tingling or coldness or numbness?” would always be “Yes, to all of the above”. One night, at 3am, I put stickers all over my back where I felt pain and then headed to the doctor first thing in the morning simply to see if the exact location of my pain would give any additional clues to my doctor. It didn’t. After running a bunch of blood tests and getting some x-rays I was told that there was no sign of anything ‘wrong’ and that if the nighttime pain continued I should come back in a few months. During those ‘few months’ I saw an acupuncturist, 2 physiotherapists, massage therapists, pelvic floor specialists (maybe this was ‘normal’ after carrying almost 7lb each twins to term?) – all washed their hands of me after trying to treat me, saying “There’s nothing I can do for you anymore. You don’t respond to my treatment like a ‘normal person’. Maybe try relaxing and sleeping more.” (Thankfully, I found significant relief from low back/SI joint and TMJ pain by regularly going for low-impact chiropractic care. The doctors at that clinic have been in my corner since day 1).
In the end, I ended up going back to my family doctor (who then referred me to another doctor in the clinic) and said: “Something is wrong. I do not see other people living in pain like this and I can’t imagine going on like this for the rest of my life. I seem to have exhausted all other treatment and don’t even know where to go next. Is there anything else you can do for me?”. The response: “I’m sorry you’re in such pain – there really is no explanation for it. Sometimes we start thinking we have pain even though there is no evidence of it (to me it sounded like ‘it’s all in your head!’). As a last resort, if you want, I suppose I can do up a requisition for an MRI of your thoracic spine. I doubt it’ll show anything but if it helps put your mind at ease then it’s worth a try?”. That’s when I got put on a 10 month waiting list for an MRI scan.
10.5 months later, on November 2nd, I got a call from my family doctor. It was midafternoon on a Saturday and I was resting in bed. He said “Good news: you don’t need back surgery. However, something’s not right as the MRI results show multiple corner bone marrow edema-like focci which suggests evidence of inflammatory spondylitis. I’m going to send the results off to a rheumatologist and see if they have any advice. Whatever it is, you can rest assured that you don’t have to live in pain for the rest of your life and that there are treatment options”.
My first thought: “YAY!!! Finally they found something: it’s real and it’s not in my head!!”.
I rejoiced in silence and in awe. What a relief, I thought, to have a starting point. From my bed I started Googling spondylitis and came upon something called Ankylosing Spondylitis (also called Bechterew Disease) which was described to have the exact symptoms I’d been suffering for years. Ankylosing Spondylitis a.k.a. Bechterew Disease: an autoimmune disease with a genetic component to it. Bechterew Disease, I thought? In my mind I went back a few months to an email thread I had started with my auntie in the Netherlands (who also suffers from similar back pain). In it she had written that her pain was undiagnosed but she also wrote about one of my great aunts being diagnosed with some disease which sounded foreign to me at the time so I had brushed it off. Now I realized that sure enough, my great auntie had been formally diagnosed with ‘Bechterew Disease’. She passed away just the year prior (apparently from issues not related to her disease).
That November 2nd I went from being a healthy person with back pain to being a person with a disease for which there was no cure (I realise at this point it was self-diagnosis but all signs seemed to point to AS – including a blood test which came back positive for the HLA-B27 gene). Yes, my first emotion was relief and perhaps even excitement that I’d have a starting point for treatment. However, for the next number of weeks I’d get up in the morning and my first thought was “Oh my goodness, I have AS. There’s no cure for it.” Each time I looked in the mirror I saw myself and thought “My body is broken. My body isn’t going to get better. This is for life!”. AS was starting to become my identity and, in hindsight, that was toxic. Every moment of every day was tainted by my diagnosis. And, of course, the pain got progressively worse.
Naturally, with a diagnosis comes an awful lot of Googling. I must have done thousands of searches trying to figure out what this disease was anyway and how people with the disease are faring.
I read horror stories. Many of them. And I kept thinking ‘this is MY FUTURE!’.
I realized at that point that even though I’d had symptoms for years I was probably still in the beginning stages of the disease (x-rays had not yet showed any fusion of my spine) and that my future looked grim.
The only option my family doctor had given me was a visit to the rheumatologist who could help get me on the ‘right’ medications. There is a lot of information about medication out there as that’s the mainstream treatment for AS. I read success stories of people on medication but the success was often limited: either there were horrible side effects to the drugs or the relief would be temporary as the drugs would eventually stop being effective which would leave people to suffer as they sought to find a new drug (we’re talking medication ranging from hard-core anti-inflammatories to full-on chemo drugs).
“There’s GOT to be some other solution!” I thought to myself. So (as any desperate person would do), I went on to the AS Facebook ‘support group’ I’d joined (most depressing place ever!) and started asking questions. Someone mentioned another Facebook group which actually seemed to approach AS from a completely new perspective – diet changes (more specifically, a no-low starch diet with a strong recommendation of starting with a full-elimination diet in order to discover the body’s sensitivities).
Sweet people, I love food. At this point in my life if you’d asked me what my favorite comfort foods were I would have told you ‘bread and other carbs’ – hands down. I prided myself in making mean loaves of bread – I was known for my baking in my neighbourhood. I probably ate too much bread but overall I had considered my diet relatively healthy. I made the vast majority of meals in my own kitchen (with the awesome help of my children). I juiced my own fruits and veggies. I made my own yogurt. I bought fancy eggs from the farmer (you know, not just from the grocery store). In some ways my life revolved around food – especially my social life! I had never in my life been on any sort of diet and I thought I was doing pretty good.
The idea of a diet was NOT appealing to me – mostly because of its social implications.
I didn’t want to be ‘that person’ who brought their own food to parties or who came across as super picky – because I pride myself on not being a picky eater. Imagine how I felt when I read up on the no/low starch diet (and even more-so the AIP diet in addition to the no-low starch diet!). Uhmmm. No. Not my thing. Maybe patching the problem with medication wasn’t so bad after all?
Anyway, these were my options:
- Do nothing. (Not really an option though as I am well aware of what progression of this disease leads to).
- Going to a rheumatologist for mainstream treatment for pain and inflammation. (Not really a fantastic option after reading about what these medication options are and what they do to our bodies, especially after long-term use.)
- Attempt to limit some foods with the no/low starch diet in mind (Perhaps worth a try but was I just prolonging the pain by limiting foods I love to eat and still not getting the full benefit of attempting to heal through diet).
- Go all-in. Full on elimination diet (AIP diet with the additional restriction of no starches in an effort to naturally lower inflammation in my body with the hope of eventually reintroducing as many foods as my body will let me – with the exception of starchy foods which would likely be out for life). In addition, I’d need to be intentional about exercise, try other paramedical treatment options such as acupuncture, massage etc.
I’m an all-in kind of person – so I went with the last option.
The AIP – No Starch Diet + More
I joined the diet-focussed Facebook page that was recommended to me. I read the notes (which was a requirement for joining the group), and then I became overwhelmed with all the information so I started posting questions. There were a lot of confused people there and a few key people who were helpful but overwhelmed with ‘newbie questions’ and kept pointing everyone to the notes in the files. For many questions that were asked newbies were told to use the search function (I can see how redundant questions get old!). I had SO many feelings of overwhelm. I was SO uneducated about ANY diet. It was all SO new to me. So instead of asking questions I spent hours and hours and hours researching previous posts (not very user-friendly in a Facebook group!). After a day or 2 of that I came across a post that said: “What are you waiting for? There’s no perfect time to start. Don’t wait until after that wedding or holiday – you will only do more damage to your body and progress your disease. Start now!”. It’s all I needed to get me going. That evening I went to the store and spent about $200 on foods that would get me through the first week or so of elimination (organic chicken, wild caught sardines packed in water, organic apple cider vinegar, blueberries, broccoli, spinach, compliant olives, etc.).
I started the diet the next morning, November 20th. I was still overwhelmed. My gameplan existed of eating no-starch AIP foods (iodine testing everything for starch before consumption) and adding other alternative treatment such as massage and acupuncture (thankfully my husband had recently started a new job and therefore I had plenty of insurance money to blow through before December 31st). I closely documented every morsel of food that entered my body and every ache and pain I felt in a food sensitivity journal. I’d wake up before my kids to start the day with stretches. I spent hours and hours making homemade chicken bone broth and grinding my own organic, pastured chickens for patties when I got tired of eating juicy chicken breasts (while also cooking regular meals for my family from scratch three times a day).
It was pretty miserable but I expected those first few weeks to be miserable as I detoxed so I’d warned all those around me (a.k.a. husband and kids) that I would soon, miraculously, feel better. I’d read over and over that many people saw significant improvement within days (or at least weeks) of starting this diet. Not me. I felt worse for many, many weeks.
I went through Christmas feeling horrible and with more pain than I had even had before the diet/diagnosis. My body felt like a big ball of inflamed and stiff joints and tense muscles. Every Christmas party I attended had SO much amazing food but not one had any that I’d even eventually (after strict elimination) be able to eat due to starch content. Sausage, cheese and cracker platters, seasoned chicken wings, Christmas cookies, Oliebollen (Dutch traditional holiday treat), mom’s Sunday-soup, chips, etc. I didn’t eat any of it. What is Christmas without Christmas food (well, that’s a whole other story – it became obvious that I had made Christmas something it was not).
Right after Christmas I went for an acupuncture appointment. The acupuncturist kept telling me I was too high strung and that I needed to relax my body. He told me that the reason I have this disease is because I don’t know how to take it easy and ‘let loose’. He continued, for about 10 minutes, to tell me how I had basically brought this disease upon myself and how I needed to get a hold of myself and take charge of my body.
Have you ever tried to relax when your body is in a lot of physical pain (and has been in that state for years)?
I started snotting all over the clean, white sheets on his treatment table (not just a tear or 2, I’m talking streams of tears and snot falling down on his carpet through the face-hole in the table). I was SO frustrated because here I had given up one of the things I loved so much (food). I had committed to stretching before the kids woke every morning. I had arranged babysitting for the kids so that I could go for treatment to heal. And that wasn’t enough effort, apparently. So now I not only was on a crazy restrictive diet which I hated but I was also frustrated and angry with how much pain my body was still in despite my best efforts.
The Point of Hopelessness
I became so deeply entrenched in this disease and my search for pain relief that by every passing day it became more a part of me. It was eating me up and it was toxic and I was physically feeling worse by the day and losing more weight than I had to lose. And really, who wouldn’t feel sorry for themselves on this diet?
I think I developed a bit of orthorexia (an obsession with proper or ‘healthful’ eating). Can you blame me? I was down to eating only chicken, broccoli, olive oil and salt at this point and every time I added anything that others suggested I flared (would wake up stiff and in excruciating pain the next morning to the point where I couldn’t lower my chin closer than 90° towards my chest). In addition, shortly before Christmas I had I discovered that some of the supplements I’d been taking (calcium, magnesium, B100, VitD3 etc.) had trace amounts of starch – so even my supplements had to be replaced with non-starchy ones.
It soon became evident that starch was in EVERYTHING. Which I’d somewhat understood when I started this journey but it only hit me now that it wasn’t just my diet that was affected by this. I could no longer travel carelessly and stop at any roadside restaurant to satisfy my hunger (did you know bananas, apples, carrots and pepper are starchy, for example?). I could no longer go on date nights with my husband to restaurants where we’d experience new culture and flavour together. I could no longer have a piece of my son’s birthday cake (or my own birthday cake, for that matter). Not one restaurant I knew of would be able cater to my new dietary restrictions – unless I asked for an unseasoned steak and a side salad of lettuce without dressing (and still pay $30 for it). No thanks.
In order to stay motivated on this diet I was very active in the Facebook diet support group. I received so much encouragement and I am SO grateful for the people who offered those words of support and camaraderie. But then I probably became a little bit ‘much’ for the people there (at least the ones who were strict and successful – I’m pretty sure there were others there who felt the same way I did). “It’s simple” they said, and “You’re making it too complicated! Just stop eating all these foods and you’ll start feeling better”. But it wasn’t simple for me as I wasn’t ‘allowed’ to eat the foods I loved (food brings joy, right?) and I was still feeling terrible physically. It seemed like a lose/lose situation.
I thought about throwing in the towel but I was too scared of the physical pain I’d wake up to the next morning. So I kept trudging along (but posting a little bit less so as not to annoy the others in the group too much with my whining) – cooking meals and baking bread for my family while also making 3 meals of chicken and broccoli a day for myself.
The Living of Life On The Edge
Before being diagnosed with AS I read recipe books for fun. I loved trying new recipes and I found such thrill in sharing my creations. Instead of being robbed from yet one more thing I decided to buy the one recipe book I knew of that was starch-free. It was an e-book that I printed myself at the library: “Pure and Simple Paleo” by Andrea Wyckoff (Betty Rawker). I read her book from cover to cover several times over and I was inspired, for the first time, by starch-free recipes. I read the recipes daily. I dreamed of what a starch-free life could look like beyond elimination. Not only was I inspired, I felt fortunate that I might possibly feel great while eating amazing, wholesome, pure foods.
I realised that my current outlook on the diet wasn’t helpful and that I had 2 more options to pick from:
- The diet: do it and hate it.
- The diet: make the most of it and learn to eat and love foods that make me feel well.
I decided the latter was my best choice. I also decided that, even though not recommended, I needed to live life on the edge a bit by adding new foods that would get me more excited about being on this diet – so I added the green part of green onions to chicken patties as well as some garlic. That night, instead of steaming my broccoli I roasted it in the oven and also made some kale chips. Surprisingly (or not surprisingly) I started to feel better physically shortly afterwards. In the following 2 week span I had more 8 hours long sleeps at night than I had in the 2+ years prior. The pain levels I started recording in my food sensitivity journal were more like 1-2/10 instead of 7-8/10.
I know that I will have more hard days. I know that, especially as I try to reintroduce foods that my body won’t like, I will wake up being unable to pick up my twin toddlers from their cribs again in the middle of the night when they are sick and need me (actually, it’s partially why we switched them to toddler beds last week – craziness, I know!). I know that when the barometric pressure changes I will experience deep hip pain again. But, so far I’ve learned 2 things since I got my AS diagnosis on that October afternoon when I was resting in bed…just 3 short months ago:
1) Grieving is not only okay, but necessary in the physical healing process and that grieving and healing looks different for everyone and it doesn’t make you a mental ‘case’.
2) I have way more power over this disease than I thought I did when I first got my diagnosis.
I choose to be grateful and I thank God for the progress I’ve made!