*Starch-Free Success Stories* Guest Blog: Justin Hussey

Justin is one of the people who encouraged me when I first started my starch-free journey. He shared helpful information he had learned along his journey toward managing his ankylosing spondylitis through diet and lifestyle modifications. He hung in there when the going got tough (and he didn’t pretend it was easy, which I appreciated) and encouraged me to do the same. His positive outlook along the journey was a breath of fresh air for me. I’m grateful for how he was willing to share then and I am thrilled he’s continuing to encourage now.

Justin’s post is part of the “Starch-Free Success Stories” series.

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What health issues are you dealing with? When did they begin? And, how long did it take to get a diagnosis?

I clearly remember my first symptoms at about 25 years old. I was a few years out of college at that point and was making regular trips to see some family and regularly played with my niece and nephew, who were 5 and 2 at the time. I was a fun toy that came into town, and they loved climbing all over me and having me throw them in the air. I woke up the morning after one such trip and found that my back/hip was bothering me, which was unusual though I didn’t think much of it due to being a carnival ride for the past three days. It subsided after a couple of days. I continued to exercise and be active despite the discomfort.

When were you diagnosed with AS?

The above symptoms relapsed and remitted with increasing severity for the next few years. I kept chalking it up to isolated injuries I had incurred from working out, but by the age of 28, it was starting to affect my regular life. Pain radiated through my legs and into my feet, stemming from my lower hips (which I learned were my SI joints). It was inconsistent from one side to the other, and how long these flare-ups would last, so it was really puzzling. I was searching for relief at this point and started taking NSAIDs to get out of bed in the mornings. I went to a chiropractor and got some relief from that. I ultimately found a local spine clinic, which included a physical therapy group and a neurologist. I hoped to get a better understanding of what was going on here. At this time, I was recovering from a flare-up, so the neurologist didn’t see any alarming symptoms. I could walk and bend normally, so he recommended I go to physical therapy within the clinic. This therapy would help me learn how to stretch productively (I still do these today), which gave me a lot of relief. Since I improved so much, the PT figured it was a mild disc herniation and was pleased with my increased mobility and flexibility. As such, they never ordered an MRI or any other imaging that would have likely given me a diagnosis. I unknowingly managed the disease for six years with exercise and a stretching routine. I figured I would deal with residual discomfort (which was probably a 2-3 on the pain scale) for the rest of my life and eventually get surgery if I could no longer manage. At 29, I had an onset of iritis (uveitis) that went misdiagnosed for a month by an optometrist. It got so severe that I temporarily lost vision in the affected eye. I ultimately went to an ophthalmologist who diagnosed it within seconds and started me on steroids and dilating drops, which caused the symptoms to disappear within hours. Thankfully, my vision was restored. He asked if my back hurt, and I said it had traditionally but didn’t at that moment. He ordered a blood test for HLA-B27, which came back positive. He issued me a referral to a rheumatologist. I never followed through on this referral as I didn’t have additional symptoms.

When I turned 35, the pain started spreading from my hips up my spine into my rib cage and neck. The therapeutic stretching was no longer helping the disease activity (which I still didn’t know I had). My symptoms were starting to affect my quality of life significantly. At this point, I still thought I was dealing with mechanical back problems – and now the added effects of age, wear and tear, making it worse. I was still exercising as I had been. I started to voice these concerns to my primary care provider (PCP), but she didn’t find enough evidence to refer me to a specialist.

I went to Dr. Google and typed in the symptoms: “Ribs hurt in the morning,” which bothered me most at that time. I found a corner of the internet where people were asking for medical help. Someone had voiced a string of symptoms that sounded exceedingly like mine. That was the first time I saw the term Ankylosing Spondylitis (AS). From there, it all made sense. I had all the classic symptoms and disease behavior. It was clear as day that’s what I had. I made an appointment with my PCP to talk about it, and she agreed it sounded like AS and referred me to rheumatology. After spending an hour with the rheumatologist and doing bloodwork and imaging, the diagnosis was there. She stopped short of calling it AS because I didn’t have any fusion at the time. However, there was evidence of changes starting in my SI joints. The path to diagnosis took approximately ten years, which seems common for most with the disease.

What has been your approach to healing?

I have a history of autoimmune diseases in my family. My mom has rheumatoid arthritis, and her mom (though never diagnosed) had either AS or some other form of autoimmune arthritis. My mom was on methotrexate (an immunosuppressive/chemotherapy drug) for 15+ years. I saw what that drug did to her. I didn’t want to go down that path. The rheumatologist said she could prescribe me Humira, but that sounded like a death sentence to me. I’ve since softened on that a bit. I’m glad the medicine exists, but I’m hoping to avoid it for as long as possible.

I started scouring the chronicles of the internet and ran across some mentions of the Autoimmune Protocol by Sarah Ballantyne. Having always been a fan of healthy diets, after reading some of the literature, I figured I’d give it a shot. Five years later, and after considerable experimentation and trial/error, I still follow that path. I continue to strength-train and exercise as able (typically limited by work and life commitments rather than pain). I can’t overstate the importance of exercise as a critical facet of managing AS. It’s an absolute must.

What led you to first try a healing diet approach?

Generally, I don’t like the concept of being dependent on medication. I always believed that if you keep your system as healthy as possible, then disease won’t have the ability to thrive. If that means making food or other sacrifices to achieve this, then so be it. When I saw the diet/gut connection to inflammatory disease activity, it made sense to me to modify my diet. I saw other like-minded individuals achieving success with such a philosophy, so I figured I’d give it a shot.

What was the lowest point on your health journey?

Some months after I was diagnosed and experimenting with the diet, it felt like I wasn’t making any progress. My symptoms were still considerable (though not debilitating), and my mental health wasn’t great. I was depressed, realizing I would be fighting this disease for the rest of my life, and I was still relatively young. I wouldn’t have minded as much if the age of onset was 75 versus 25. It felt like only bumpier roads ahead. It was a lonely feeling because I didn’t know anyone going through what I was going through. The pain made me lonely and isolated.

What challenges led you to seek a diagnosis, and inspired you to try a healing diet? Basically, what was the tipping point?

Waking up in the middle of the night with pain and stiffness throughout my upper spine and ribcage finally alerted me that something was seriously wrong. I needed NSAIDs to sleep through the night, which was unsettling. I could no longer attribute the symptoms to mechanical back pain, as it literally took my breath away.

Which healing diet protocols have you used?

I started autoimmune protocol (AIP) and did that for approximately six months before adopting the low-starch version of the diet, which is a typical approach for addressing AS disease activity. I did an elimination diet first to cut out all typical triggers and then reintroduced a few things. The AIP method is a good starting point but undoubtedly will need some modification depending on the individual.

When you found a protocol to help you heal, what was it, and what was your first indication that it was working?

Forty-eight hours after starting AIP, I felt a dramatic change. Pain levels were lower than they had been in 10 years, and my gut felt great. I then knew there was a connection between diet and disease activity. Being a stubborn person by nature, I knew I had to follow this through. However, I would say that being stubborn is a benefit when adopting this lifestyle. It’s always wildly inconvenient, especially with a young family. The difficulty eases with time, especially if you experience success and find some simple meals that satisfy you and can work in a pinch with minimal preparation.

Everyone needs to find their path here. I’m a simple food guy and always have been. Traditionally food has been more of a fuel than anything else to me. Not everyone is wired this way. Many need more presentation and variety, which is great! There are unlimited options for creation, even once you take all the negatively affecting ingredients out. I’ve seen amazing dishes that are strictly following the low-starch protocol. I will suggest not jumping right into these, though. Start slow, and find simple things that work before branching out.

What foods are you most sensitive to? Which foods do you avoid?

I generally follow the AIP guidelines and avoid common foods that are either allergens or provide adverse reactions in the gut (dairy and coffee are the two most notable here). I’ve tried to reintroduce eggs a couple of times and failed them. The yolks were ok, but the whites were problematic. I got bored of just eating hard-boiled egg yolk, so I generally avoid eggs altogether.

Did your doctors suggest any treatments that you rejected? If so, why did you choose to try other methods?

The first rheumatologist I saw wanted to start me on Humira right away. Like I said earlier, that sounded dreadful because I saw what immunosuppressants did in someone close to me. Biologics are different (and I believe safer) than the types of drugs commonly prescribed in the 1990s, but I’d still rather not depend on them. There is definitely a case to be made for them in people who are really suffering. But I believe a large section of cases can have significantly improved quality of life if this diet and lifestyle is adopted and followed strictly.

I will add that even though I didn’t/don’t follow the path that the rheumatologist wanted me to take, I was vigilant regarding setting up a care team. I found a gastrointestinal (GI) doctor who did a full workup to ensure there wasn’t hidden disease activity in my digestive tract. I saw a cardiologist to ensure my aorta didn’t show signs of inflammation. I didn’t have a plan beyond the initial scans but wanted to establish a line of care, in case I developed symptoms in those areas. Fortunately, in my case, neither series of tests revealed anything noteworthy.

Share any personal victories your real food journey has helped you achieve!

This is a diet that I wish I had followed when I was in my 20s. I feel much better as a general case, plus the healthy composition is great for gains in fitness and other health measures. I typically say I feel 90% or better 90% of the time, and I can generally do whatever I want, which is a victory. I limit activities where falling is a risk because I’ve heard stories that such events can trigger an increase in disease activity.

Where do you source ingredients for your recipes and daily life?

I live in a major metropolitan area, so the major grocery stores and Costco have what I need. I get my supplements from Amazon on a subscription to save some money. The US food system is ok, but we certainly prioritize cheap carbohydrates as our staple, where these things must be limited or altogether avoided on a diet conducive to healing on this lifestyle.

What do you eat when you are HUNGRY (or HANGRY!) and need something quick?

This is the hardest part. There aren’t many pre-packaged options that aren’t ungodly expensive. I tend to stick with almonds and macadamia nuts with raisins to fill in calories if I’m hungry. I’m not a foodie, so this works for me. Pork rinds are a good option, but the ones with clean ingredients are relatively expensive (I’ve seen $30/lb). Macadamia nuts have seemingly doubled in cost over the past couple of years, but blending a pound of nuts into nut butter and enjoying it with a small apple is about as good of a snack as I could have. I will say that, for me, the quantity of fruit needs to be limited, as too much of it causes issues.

Favorite ways to pamper yourself, self-care:

With two young kids, there’s not a whole lot of me time left in the day. I do enjoy time at the beach and going for bike rides. I’ve practiced yoga in the past and found it to be a helpful form of meditation. Exercising and strength training have been central to my life, dating back 20 years. Fortunately, I have that background, and to be successful in this lifestyle, such a practice is paramount to improvement. My best days always follow the days that I both got 8 hours of sleep and worked out.

Your go-to easy breakfast, and how you start each day:

I usually have an avocado smoothie each morning (avocado, coconut water, coconut milk, almond butter, frozen blueberries) and either a tin of sardines, some bacon, or a chicken apple sausage. I make the smoothie in a high-speed blender, so it’s like ice cream every morning. I tolerate the sardines, but the Omega 3 content is worth it. Bacon is what I prefer, but the clean ingredient bacon is on the expensive side.

Alternative therapies you have used:

The 3 big facets of this lifestyle are diet, sleep, and exercise (and I’ll add a small 4th for supplements). Because of symptoms, sleep can be the hardest to get for a while, but after you’ve worked through the early stages, it will come more regularly.

I can’t get by without a steady stream of minerals/electrolytes. I take 800mg of Magnesium per day as well as 500 units of vitamin D. They are critical for me. I experience aches, lack of energy, and fatigue without them. I never would have thought that these could make such a difference, but if I even skip a day, I feel the difference.

Words of wisdom you’ve learned on your journey:

Don’t expect the lifestyle to be a cure. Don’t expect 100% remission of symptoms. Don’t expect sympathy/understanding from others, even those closest to you (or the medical community, for that matter). It’s largely a solitary battle but one that’s entirely worth fighting. Instead of looking for replacements or alternatives to certain foods you have to eliminate… be able and willing to say goodbye to the part of yourself that required these items. Your life going forward will look wholly different than the one in your past. Take time to mourn this, but accept the new way of living as a beautiful beginning. There will be challenges to overcome, but in whose existence aren’t there any?

While people with unrelenting forms of the disease may still require medication, I believe just about everyone with such an affliction can experience a moderate/appreciable increase in quality of life. Better sleep, more energy, less pain. So, why not do it? Go all in and give it six months.

Advice for people who are just starting out:

The path to healing isn’t a straight line. You will still have ups and downs as your body adjusts and you find what works for you. It’s important not to get discouraged if you have setbacks and flare-ups. Consider how you feel on the good days and how many good days you have relative to the bad compared to before you started. You’ll eventually have more good days, which is the goal we should all have.

I don’t expect 100% remission or a completely symptom-free life. As long as I’m bound by nothing and get a full night of sleep, I’m content with where I am. Know that you can do this, and you’re truly not alone. Your support system may not be those in your immediate presence, but lots of people know what you’re going through and are always willing to talk or help.