*Starch-Free Success Stories* Guest Blog: Giulia

Giulia’s (right, in green) journey with ankylosing spondylitis started approximately a decade ago. In 2021, after trying some mainstream treatment, she decided to embark on an alternative journey that she hoped would bring relief of her debilitating symptoms. I found Giulia’s story to be so relatable and inspiring. I hope you do too!

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

---

I’m writing 1 year into my journey of managing ankylosing spondylitis through diet.

I started to have what I now recognize as ‘flares’ about 10 years ago. The first time I can remember, I was 21 years old. I got a 24/7 headache for about a week straight, followed by my neck becoming extremely sore and tight. It felt like I got whiplash, with no known cause, and I was barely able to function through work. I went to the doctor and they ran tests and couldn’t find any issues as I didn’t have any other symptoms. They recommended I get some massages, along with taking ibuprofen. I did that for a few weeks with no relief. Finally, I went back to the doctor and they prescribed muscle relaxers. I took those for a week and the pain finally let up. I thought maybe I just got a weird virus.

A few years later, I started to get the same 24/7 headache symptoms after getting food poisoning from a local fair. This time, the tightness manifested in my back after a week of headaches. It got worse and worse to the point where I couldn’t walk for more than a few minutes without needing to lay down and stretch as the tightness traveled up and down my back. I went to the ER, and they did x-rays that showed no structural issues. They gave me muscle relaxers and the tightness again released after another week.

I went a few more years without noticeable symptoms, and then in August of 2020, the headache started again. After a week, the pain and tightness manifested in my abdomen. Horrible cramping and tightness for days, but no other symptoms. I needed to go to urgent care where they ran tests and found no known cause and sent me home with ibuprofen.

This time, the symptoms didn’t go away. I had a headache and stomach pain every day. I also started noticing an aching pain around my ankles and in the back of my thighs, especially if I had been still for a period of time. My neck was almost constantly tender to touch, and I would randomly get extreme pain in my finger joints that would come and go. I went to the doctor and they suggested I may have fibromyalgia and prescribed anti-depressants and acupuncture. I decided to hold off on the anti-depressants as I felt the risk of side effects was not worth enduring the symptoms at the time. I did try acupuncture. 

I continued acupuncture for a few months and used ibuprofen and muscle relaxers if the pain got too bad to sleep. I got a new job and would have to leave this acupuncturist due to changing insurance. At the last session, I asked him, “do you think I have fibromyalgia?”. He replied, “honestly, no I don’t, your symptoms are not consistent with my other fibromyalgia patients”.

So back to square one, I started to do my own google research and found that stomach and muscle/joint pain could be a sign of other auto-immune conditions. I asked my new doctor to refer me to a rheumatologist. The rheumatologist ran some tests, including genetic testing that came back positive for HLAB27. I looked up this gene and saw it is common in people who have ankylosing spondylitis (AS). My rheumatologist brought this up, but I didn’t have back pain, which is a key characteristic of AS.

My rheumatologist put me on a daily dose of a prescription NSAID and basically told me not to stress because that can cause flares, and to come back to see her in a few months. I took the NSAID, and within a few days, my symptoms went away. No more headaches, no more joint pain, but I did still have some stomach pain. I did this for a few months until, once again, I started to do my own research. I looked up AS groups on Facebook and started to read firsthand accounts of people on the prescription NSAID. Many of them said the same thing – it worked great for a few months or a year, then their stomachs were wrecked or they were having kidney problems. It was clear to me that this medication was not the answer, even though the rheumatologist had promised me it was safe for long-term use.

I decided to cut my dose in half since I had been feeling so good, and I was worried about the effects of the medicine. Within a few days of lowering my dose, I noticed a new symptom. Aching pain in my lower back and SI joints. I had been holding onto the hope that since I did not have back pain, I did not have AS, but it was clear that over the past few months the NSAID had been hiding this symptom. I stayed on the half dose for a few more months, but the back pain kept getting worse and worse. I consulted with my rheumatologist who at that point, officially diagnosed me with AS. I now had to keep a heating pad with me to ease the pain in my back and stomach almost 24/7, and I knew I had to figure something else out. 

One night, the pain in my back escalated to a new level. It became a burning that didn’t subside with medication or heat. I couldn’t sleep and I was paralyzed with dread and panic at 2 am. I was 29 years old; I had just proposed to my fiancé (left, in red) a few months before. I had my whole life ahead of me, and my current future looked like it would be one of crippling pain. I didn’t want that for me or my future wife, and I decided right then that there has to be another way.

I researched through the night and stumbled upon Dr. Ebringer’s research on using a low-starch diet to manage AS. I couldn’t believe what I was reading since this had never been mentioned by my rheumatologist. That I could have any control over my symptoms. The quick explanation of the science is that people with AS, and most autoimmune disorders, have leaky gut. This is why auto-immune issues commonly begin with gut pain/digestive issues, and it means that some bacteria are crossing the gut barrier (which is only 1 cell thick), and entering your body. Depending on your genes, your body will react in different ways. For example, people with an HLAB27 gene can have collagen cells that look similar to the bacteria that eat starch called Klebsiella. When you eat starch, more Klebsiella grows and crosses your gut barrier into your body. Your body then attacks Klebsiella AND your collagen cells mistakenly. This causes inflammation, pain, and possibly fusion in areas where collagen is present in our bodies, like in your spine. So, if you don’t eat starch, you can starve Klebsiella and as a result, prevent inflammation and joint damage.

I kept digging and found Janneke Phung’s article “Here Are The Dietary Changes That Reduced My AS Symptoms”. Her approach seemed extreme, starting with a very strict elimination diet, but it worked! Her article led me to the Facebook group, The Low/No Starch Lifestyle for Ankylosing Spondylitis. Here I found a community of over 10,000 people using a low-starch diet to manage their symptoms. Many people are essentially symptom-free after taking the time to heal. I decided to start the diet the next day.

By this time, it was July 2021, exactly 1 year ago as I write this. I decided to go all in and start an elimination diet with the research and guidance from those in the Facebook group. As it turns out, starch isn’t the only culprit for creating bacteria that trigger inflammation through a leaky gut. It can also be sugar, dairy, gluten, nightshades, and more. You really will not know what your body is reacting to unless you start from a baseline of no pain, and introduce things one by one from there. So, I started with chicken, broccoli, avocados, olive oil, and avocado oil for breakfast lunch, and dinner. I decided to do a ketogenic version of this diet for its anti-inflammatory benefits. I was also already not eating any carbs except for vegetables, so a diet of high healthy fats would keep me satiated. 

I want to mention that I really love food – all types of food! I am not a picky eater. I am also Italian, and eating and cooking (a lot of starchy foods!) together is a huge part of my life and identity. This was really, really hard. Luckily my fiancé (now wife) was immediately so supportive, never expressing any doubt that this could work. She decided to also try a keto diet in solidarity. That was a huge help for me as we cleared our pantry and fridge of all of the pasta, rice, potatoes, and other foods that we had grown to love cooking together.

I also decided to go completely off of the NSAID at the same time. My pain went way up for a few days while trying to navigate keto flu, and then it went down. My headaches and neck pain were the first to go. By the next week, my stomach pain dramatically decreased. It wasn’t a totally linear decrease in pain, some days were worse than others, but I could feel my body changing on my short list of foods. I got to a point of pretty low pain after about a month and decided to try to introduce new foods. The introduction process entails trying a portion of new food that should be safe (no starch, no sugar, no nightshades, gluten-free, etc.), and then waiting a few days to see if you have any symptoms. Some foods were successful, but most were not. It took about six months for my body to really start accepting new foods regularly. I believe this is because my gut microbiome needed to build up healthy bacteria, which would allow the gut barrier to begin to heal. 

As I started to get the hang of diet after many months, I began to do more research into functional medicine to see if there were other aspects of my life, I could improve upon to speed up the healing process. I started following Dr. Terry Wahls (a true inspiration with her healing from MS), Dr. Mark Hyman, Dr. Steven Gundry, and more. Their books and Youtube lectures have been helpful in understanding how detoxing, sleep, exercise, and stress reduction are all important aspects of our healing journey as well. I’m always learning more from them and trying new things. For example, I now do yoga every morning with my wife, which she loves and I don’t. However, I feel the benefits in my body, so I try to keep it up. I started to see a functional medicine doctor who ran tests to measure the bacteria in my gut microbiome and recommended some tweaks with diet and supplements to balance out my gut. This data has been very helpful in the healing process.

I’ve found a few things to be particularly challenging, but are getting easier with time. I would say the most challenging thing is when the diet creates a barrier to socializing. When I first started the diet, I would get very self-conscious about turning down an offer for food. I felt like it came across as rude, or that I was being picky. However, I’ve learned that this is all in my head. I will now just bring my food to a social event, or just say with a big smile ‘oh no thank you, I have food sensitivities.’ When people realize that you are not bothered, then they are not bothered. 

Another challenge is traveling. In this past year, I have done some traveling and gotten married. We have been away from home for weeks at a time. My best advice is to invest in a serious cooler. The kind that can keep food cool for over 24 hours and can check as a bag on a plane if necessary. This has saved me on many occasions with my prepared meals in tow. A cooler and kitchenette go a long way when traveling.

At one year, I am now eating a pretty diverse diet. I eat tons of non-starchy organic vegetables, all types of pasture-raised, grass-fed, or wild-caught meats and fish, herbs, and low-sugar fruit, like berries. I am still doing a ketogenic version of a low-starch diet, adding olive oil, avocado oil, and coconut milk to my dishes daily to keep my healthy fat ratio up. Keto is not for everyone, but it works well for me as I feel the best I have ever felt in my adult life. I have been off all medication since I started the diet, and have not even felt close to needing any. I do sometimes get a slightly stiff back, but that is my cue that I ate something my body wasn’t ready for, and the ‘flare’ is nothing compared to what it used to be. 

My advice to anyone starting this journey is to find your community. My family has always been supportive, which I am so grateful for. It’s also essential to find people who understand what you are going through and can help you troubleshoot when you run up against challenges. This may be a Facebook group, like The Low/No Starch Lifestyle for Ankylosing Spondylitis, or a functional medicine doctor who understands why you are searching for a whole system approach to managing your symptoms. 

This process takes time, patience, and resilience. If you are just embarking on this healing journey, don’t give up, I promise it is worth it.