*Starch-Free Success Stories* Guest Blog: Rachel P.
Rachel started this starch-free journey about a year ahead of me. Over the years, as she walked alongside me on this journey (in a virtual sort of way), she inspired me with her words and pictures of amazing starch-free food. As I read her story in its entirety today I am struck by how similar our journey has been. I appreciate so much that she’s willing to share her success. And yes, she truly has been successful! Above is a picture of Rachel hiking in the high Sierras this summer – just one of the activities she’s able to enjoy as a result of adhering to a starch-free lifestyle.
Rachel P’s post is part of the “Starch-Free Success Stories” series.
What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?
When I was in high school, I remember having limited mobility in my neck, and thinking that was odd, but it was just my normal. When I was 23, I was at the peak of health, training for my first ½ marathon, and started having excruciating “lower-back” and hip pain. I don’t think I even knew the SI joint existed at that point. I was nursing a misdiagnosed, partially torn ACL, running a lot, and figured it was muscle imbalance and overtraining. Over the next 6 years or so, I’d continue to get these flares that would sideline me for weeks at a time, often rendering me reliant on crutches. Sometimes it would be on one side, sometimes the other, at times it felt like it was everywhere. When I was around 30, I started waking up every night at 3 am, with horrible pain in my back ribs. I had a one-year-old at the time, and I thought perhaps it was from nursing in a weird position or an old mattress. Of course, replacing the mattress didn’t help anything.
Over the next few years, new pain spots kept popping up in my heel, sternum, upper back, and neck. I went to my MD and suggested this all had to be connected. Standard blood work, and a lumbar x-ray all revealed nothing. In the fall of 2018, the principal at my children’s school announced that she was taking a leave of absence because she had some heart complications due to a disease she had called Ankylosing Spondylitis. I had never heard of it, Googled it, and knew immediately that that was what had been going on. I scheduled an appointment with my new GP and requested SI joint X-rays. The X-rays showed significant damage (but no fusion), on both sides. I was 38 at that time and had been having symptoms for 20 years.
In addition to AS, over the last few years, my autoimmune collection has grown to include Lupus, Reactive Arthritis (following a C.Difficile infection), Antiphospholipid Syndrome, Raynauds, and cold-induced urticaria.
When were you diagnosed with AS?
I was diagnosed 5 years ago, at the age of 38, 20 years after my symptoms began. Coincidentally, on the day of my first appointment with rheumatology to confirm the AS diagnosis, I had my first uveitis flare.
What has been your approach to healing?
Knowledge is power is so true with AS. First, it was knowing what I was dealing with after so many years of uncertainty. Once I finally had a diagnosis, I tried to read everything that I could. I learned fairly quickly that conquering AS would require a lifestyle overhaul. While I’d always been fairly healthy, active, and had a good diet, I learned it wasn’t the right diet for AS. I often describe my approach as a 4-legged stool, with the legs being sleep, stress, diet, and exercise. I learned fairly quickly that I am strongest and healthiest when all four legs are strong. If one is a little wobbly, the other 3 can usually prop me up, but if two are wobbly, forget it. For me, keeping that stool strong meant some pretty significant changes. At first, I took a short medical leave of absence from work, then returned on a reduced schedule, and eventually stepped away from my job completely. I knew I couldn’t adequately balance being the Mom I wanted to be, with the time I needed to be active and sleep, without unsustainable stress levels. Although I worked in public health, it was a desk job, and I found that spending a large time doing computer work and sitting in meetings was counterproductive to my health goals. I realize that I am very fortunate to have a supportive spouse and be in the financial position to make that decision.
What led you to first try a healing diet approach?
At the same time as my diagnosis, I had my first uveitis flare and it was really bad. After 4 months of being on drops, trying to wean off, and persistent rebounds, my MD sent me to a uveitis specialist, who expressed that we needed to get the uveitis under control ASAP, or I risked permanent vision damage.
My MD wanted to put me on biologics, however, some of the meds have a risk of drug-induced multiple sclerosis, and I was already dealing with long-term neuropathy problems (now assumed to be likely due to lupus, which I also have), and both my neurologist and rheumatologist were frank about the risks of additional complications from the drugs, especially given my history.
I stumbled upon the Low Starch Facebook group and immediately ordered a copy of The Keystone Approach. I think I read it in one day, printed the list of the Level 3 allowed/not allowed foods, and carried that around everywhere with me. I also started using iodine at home to test everything for starch. About 3 weeks after I started the low-starch diet, I weaned off the steroid drops as scheduled, and for the first time in about 5 months, it didn’t rebound. That was when I knew there was something to this diet.
What was the lowest point on your health journey?
I wish I could say there was one low point, but there were so many! There were times I was stuck on the floor, because I’d gotten down to stretch, but couldn’t get back up. The times I couldn’t move enough to put my kids to bed and when I couldn’t do bedtime cuddles with my then 5-year-old because it was too painful for him to touch my sternum or ribs. There was the time I debated using my crutches to get to the walk-in shower at home, because lowering myself to use the toilet was too painful, and the times the pain was so bad my husband asked if he needed to call an ambulance because just about every muscle in my body was spasming. It’s unbelievable to think back to those times because they seem so long ago, and so unfathomable that I could have skipped all that if it hadn’t taken 20 years for a diagnosis, and I’d found this diet earlier.
What challenges led you to seek a diagnosis, and inspired you to try a healing diet? Basically, what was the tipping point?
I’ve learned that you have to advocate for yourself in the healthcare setting, especially as a woman. Although I went and saw multiple MDs, Chiropractors, PTs, etc., no one put it together, and no one ordered the right tests. I think part of me questioned my own experience, having always been athletic, I was constantly excusing it as being a result of something I did wrong (overtrained, undertrained, trained wrong, etc). Only from someone sharing their story did I learn about AS, and after that, I was empowered to research and take action.
Which healing diet protocols have you used? When you found a protocol to help you heal, what was it and what was your first indication that it was working?
The low-starch diet has been my primary approach to healing. While many find it necessary to do a full elimination diet, I never did that. I religiously followed the Keystone level 3 guidelines. The first few months were a complete roller coaster, in part due to my body responding to the shifts, and in part because there were a few days where I started feeling great, questioned the necessity of the strictness on the diet, and ate stuff I shouldn’t have. Besides keeping the uveitis at bay, the first memory I have of thinking, “Wow, this diet thing is working,” was when I put my son to bed one night, and realized he had been resting his head on my chest, and I felt no pain.
What foods are you most sensitive to? Which foods do you avoid?
It’s been about 5 years on this diet, and I’ve come a long way since I first started. I’m very fortunate in that I can tolerate a lot more than many, if not most people. My main diet is protein (chicken and fish, I don’t eat beef or pork), fruits, vegetables, nuts, seeds, and compliant baked goods/treats. I’ll do limited dairy, mostly cheese, and try to limit added sugar, though that is something I’m continuously working on. I’m a plant-based eater at heart, so I tend to eat lots of fruits and vegetables and seem to tolerate pretty much all fruits and veggies (except potatoes and sweet potatoes), without significant limits. The biggest problem foods for me are definitely starches and added sugar.
Did your doctors suggest any treatments that you rejected? If so, why did you choose to try other methods?
My MD suggested biologics, but I declined because of potential side effects, especially given my complex health history.
Share any personal victories your real food journey has helped you achieve!
My biggest successes are just being able to be active and live my life with my family, mostly without limits. The only limitation I have is that I can’t run, which was my “sanity saver” and my happy place for most of my young adult life. 15+ years with uncontrolled AS before diagnosis left my spine in rough shape, and my neurosurgeon said if I wanted to avoid a second surgery, no running.
I ski, hike, row, walk a ton, garden, travel, wrestle with my son, ride my bike, etc.
Where do you source ingredients for your recipes and daily life?
I’m a weekly Costco shopper. I find it the best place for affordable organic produce, and good quality protein, especially fish. I also have some basic ingredients for non-starch baking set up on Amazon Subscribe and Save, so they arrive regularly.
What do you eat when you are HUNGRY (or HANGRY!) and need something quick?
My lunch is almost always a massive salad, which may not sound quick, but it is. I always have ingredients on hand. I’ll throw in a mix of veggies, fruit, nuts, avocado, and homemade tahini-based dressing. In the winter I tend to make a big pot of soup, and just keep that in the fridge for an easy-to-grab meal. I also try and keep at least one baked good on hand. My current favorite is a persimmon muffin, made with coconut flour and sunflower seed flour (I’m allergic to almonds, so I have to get creative with baked goods).
What are your favorite ways to pamper yourself?
I love and crave physical activity and being outside. On my birthday, I went for a 22-mile bike ride to a neighboring town and stopped off at the Farmer’s Market on the way. My family met me for lunch, and I rode home. A good home-cooked meal, Netflix, and a hot bath, and I’m pretty happy. Simple stuff!
What is your go-to easy breakfast? How do you start each day?
Decaf coffee every morning with a bit of ½ and ½, that I have on the drive to take my son to school. I’m usually home by 8, jump on the rowing machine by 8:30 (my recent purchase and new obsession), and then have a slice or two of low-starch bread around 9:30 after I’ve worked out.
What are alternative therapies you have used?
Before I started the diet I tried physical therapy, chiropractor, and acupuncture. Now that my AS is controlled with diet, I find just being active is all I generally need. On days I’m a bit stiff, I’ll use a heating pad or a hot bath with Epsom salt.
It can seem like our lives are consumed by a chronic illness, but there is so much beyond those struggles. What brings you joy?
Spending time with my family, being active outside, and traveling.
What is something unique most people don’t know about you?
I was born without a left internal carotid artery. Makes for some pretty interesting MRIs, and I’ve joked I should tattoo on my neck something that says “check the other side,” so if there’s ever an emergency, they don’t check my pulse on the side of my neck with the absent artery, and find no pulse.
What advice do you have for people who are just starting?
Your healing journey won’t be linear. There’ll be setbacks, you’ll question if the diet works, and you’ll wonder if it’s worth it. It is! Also, only you know your body. The low-starch group has a whole range of people, some who follow strict elimination, some carnivore, some low-histamine, low-oxalates, etc. It can be overwhelming if you’re just getting started. Keep it simple, and do what works for you, and you’ll have the best chance of being successful.
Disclaimer: Starch-Free Feasting may discuss topics related to diet and nutrition. The information provided on this website is for informational purposes only. Consult a physician or medical professional before making changes to your diet and medication. You assume the risk of any potential injury that may result.
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