In the first two months after my diagnosis, I was feeling good. My symptoms drastically improved after changing to a gluten free diet. As I talked about in my post, What’s Gluten Got to Do With It, I was able to enjoy our wedding day and honeymoon just two months after my diagnosis. For the first time in months, I felt like everything was going to be okay again.
Just as I was getting my life back, I noticed that I was feeling off again. Nothing like it was before my diagnosis, but still enough to interfere with my life. After some research, I realized that I was still consuming gluten. I went gluten free without a lot of education and found out the hard way that gluten is in way more than I originally thought. I talk about this in more detail in my post What I Wish I Knew Before Going Gluten Free. So, I educated myself, checked every food item in my house, and became a pro at reading food labels.
Making sure that I was actually avoiding all things gluten resulted in a reduction in my symptoms. However, I reached a point where my healing plateaued. At this point, it was hard to pinpoint what my symptoms were but I just knew I was feeling off. So, back to Googling my symptoms and doing more research. This is when my eyes were open to the world of gut health and the importance of food. I was consuming a lot of packaged gluten free foods, which I suspected was partially contributing to how I was feeling.
As I educated myself, I became more invested in my health and wanted to learn even more. I decided to complete a certification program to become a holistic nutritionist. My main purpose of getting this certification was to increase my knowledge in order to heal my body. This program focused heavily on a plant-based diet. After learning more about it and the benefits, I was ready to jump right in.
For an entire summer, I ate mostly plant-based foods with one “cheat” meal per week. I truly believed that this was going to heal my gut and reduce my symptoms. But by the end of the summer, my symptoms were even worse. I was experiencing severe bloating, brain fog, dizziness, difficulty concentrating, GI discomfort, and sleep difficulties. Feeling this way caused my anxiety to start to creep back in too. I was eating a lot of grains, beans and raw vegetables and I don’t think my gut was able to digest them. Once I made this connection, I stopped eating plant based. I wasn’t really following any type of diet but still tried to make healthy choices. However, my symptoms stayed the same. So, again, back to doing more research and trying to figure out why I was feeling this way.
The next two years involved trying what feels like a million things to figure out my symptoms. I tried diets, food restrictions, supplements, detoxes, nutritionists, specialists, tests, and doctors. Since last November, I have gotten an MRI, ultrasounds, CT scan, and X-rays. All of the tests have come back perfectly normal. Although this was a positive, it didn’t explain why I kept feeling worse. It was also difficult to follow my symptoms because they were sporadic. I could go a few weeks with feeling pretty good followed by weeks of experiencing symptoms every day.
Trying to figure out what was going on and feeling like nothing (or no one) was helping made me feel like this was just how my life was going to be. I remember I broke down one night because I thought I just needed to accept that this was how I was going to feel the rest of my life. I was sitting there thinking about my future and the things I wanted in life and it felt like I needed to rethink it all. After some time of allowing myself to feel hopeless and defeated, I decided I couldn’t accept it. I felt like there had to be something else going on that could explain my symptoms. So, back to doctors and nutritionists and Googling every symptom (which is never a good idea).
Throughout this time, my symptoms would ebb and flow but the two that were pretty consistent were the bloating and dizziness. Some days, the bloating would be so bad by the end of the day that it would be difficult to fit into my clothes. The same clothes that I easily fit into that morning. The dizziness also came and went. Sometimes it last a few minutes and other times it lasted days. I would get answers from doctors here and there, but nothing seemed to truly stick. If something did work, it didn’t seem to last long before I was back to experiencing the same symptoms.
In all my research, I eventually stumbled upon SIBO (Small Intestinal Bacteria Overgrowth) and thought that maybe this could be the answer. I wasn’t sure so I kept it in the back of my mind. Eventually, I got fed up enough to schedule an appointment with my GI doctor to request a test. Over the past two years, I went to my GI doctor several times to figure out my symptoms but everything always “checked out” fine. My goal of making the appointment was simply to ask for the test. It took me months to get an appointment and then on the day of my appointment it was cancelled due to the pandemic.
Fed up and not even sure my GI would order a SIBO test, I started to look for other options. I was following a naturopath doctor on Instagram who specializes in SIBO. So, I decided to trust my gut and sign up for her course, which included getting an at home breath test for SIBO. After two years of trying to figure out my health, I finally got an answer. I have hydrogen SIBO. In very simple terms, it means that the bacteria in my gut is in the wrong spot. It also explains the bloating, dizziness, joint pain, brain fog, anxiety, difficulty sleeping, food intolerance and random bouts of GI discomfort I have been experiencing. From what I’ve read, it is very common for people with celiac disease to also have SIBO.
If I’m being honest, I have been procrastinating writing this blog post. Anyone who has experienced health issues, understands that there are highs and lows. Getting answers can feel like such a relief and a heavy blow all at the same time. I needed time to feel my way through what I am going through without needing to put words to it or make sense of it. Additionally, I needed time to accept where this journey has led me and the healing that still needs to be done. I also wanted to do my own research, learn more about SIBO, and decide how I was going to address it.
After a lot of research, I decided to take a do it yourself course form the naturopath that specializes in SIBO. It consists of education about SIBO and how to heal it. It also includes a personalized protocol to kill off the bacteria using the biphasic/ low FODMAP diet and herbal supplements. This was the option I picked because educating myself about my own health makes me feel empowered. Also, I have learned how to be attuned to my body over the years and wanted to choose what I felt was best for me rather than having someone just tell me to take something.
I am currently on week four and have learned so much and noticed many changes. I plan on writing a whole post about my experience once I am on the other side of it. Also, I will be adding more biphasic/ low FODMAP recipes to the blog as this is the way I’m eating right now. But don’t worry, I don’t plan on eating this way forever. In fact, I’m hoping that healing SIBO will allow me to not have so many food restrictions in the future! If you want more up to date information, I will be sharing more on my Instagram @theglutenfreegrasses.
-Kelsey