photo: Freddie Marriage, Unsplash
If you are starting here, you may want to read the first part of my story, about the four years of battle against my ankylosing spondylitis and the development of celiac disease in My story: illness.
When we left off, I was battling with headaches, light and sound sensitivity, general weakness, dizziness and brain fog from the combination of my severe vitamin deficiencies and a concussion (not to mention my constant back pain), when I received the “Immune system recovery plan” book by Dr. Susan Blum. What I began to discover about the connection between diet and autoimmune disease let me astonished! Could the answer to my health problems that conventional medicine couldn’t cure really lie on food? The fact that food could help my gastrointestinal problems made sense, but that it could actually also help my back was a totally abstract concept for me back then. How was that possible? I, like everybody else, was told that autoimmune diseases can't be reversed, and yet, that medical doctor was treating her patients with autoimmune disease with food. I couldn't totally comprehend it, but I was so curious! Those promises brought big hope for me – actually, the only hope in sight. So I kept reading, despite my severe headaches from the concussion.
The Functional Medicine approach
The more I read, the more things started to make sense. I learned about the connection between autoimmune disease and gut health and how our health is directly linked to the health of our gut and thus influenced by the food we eat. So I decided to try – after all, I had nothing to lose. I started to make a simple elimination diet, as suggested in the book, cutting out gluten (which I had eliminated already), dairy, soy and corn. I should eliminate them for three weeks and after that time re-introduce one at the time to see if I would react to them. Two weeks after stopping with these foods, I found myself sited in the floor (!) playing with my dog. Yes, that's right! I - that for four years couldn't even bend my back so that I could put my shoes or cut my nails - was now able to sit on the floor and not even noticing it. I was free of pain! I couldn't believe it. Although at that point I hadn't learned yet all the reasons behind it, I knew I was onto something incredible. So this book gave me HOPE. Hope that I could find a way out of the tragedy my life had become. Hope that I didn’t have to live my life as a slave to my diseases. Hope of getting healthy again!
When the three weeks of testing ended, I started by reintroducing dairy (although lactose-free, since I had removed lactose from my diet already). To my surprise, dairy made my pain come back. In fact, after eating two cups of yogurt and some butter with my bread (gluten and corn free) over the course of two days, I now had a flare in my disease. This testing (although totally unnecessary as I would find out later) was all the proof I needed to not only understand but also feel in my body how food was the direct cause of my pain. I was now sure that the pain I had was provoked by something I ate (and not something I did, like I was told and believed until then). This time, however, besides having pain in my back, I also had pain in my knee (while ankylosing spondylitis affects mainly the spine and sacroiliac joints, it can also affect other joints such as knees, elbows, shoulders and so on). Corn and soy provoked similar reactions, so I eliminated these three foods from my diet (along with the gluten).
Slow progress and many step backs
As weeks passed by, I started to feel better and better! I had much less pain in general, although I still had pain in my knee. My spine was not as stiff anymore, and I could reach my feet for the first time in many years! I was also starting to regain strength, and could leave the couch where I lay for three months due to my debilitating condition. I was amazed! Something as simple as food was, without comparison, giving better results than all the medicine I had taken for years. In fact, I was feeling so much better, that I slowly started to leave all the additional anti-inflammatory and painkillers I was taking.
After four months of waiting and hereafter finding the solution for my problems by myself, I should finally make the endoscopy to confirm if what I had was celiac disease. By this time, I had learned a few things about autoimmune disease and gluten. I learned that the digestive problems and vitamin deficiencies I was battling with were most likely a first sign of celiac disease and that it is not uncommon that a person with ankylosing spondylitis also develops celiac disease. I learned that you can have negative blood tests but still have the disease, and can even have all testing coming out negative but have potential celiac disease that would first manifest with damage to the intestinal villi years later. I also learned that gluten sensitivity was a big trigger to all autoimmune disease, even the ones that affect other parts of the body besides the intestines, like my ankylosing spondylitis, and which was the reason why I started feeling better from my back when I adopted a gluten-free diet (even if not so strict) all those months ago.
With all this in mind and the fact that I had an absurdly big flare in my disease when I tried to eat gluten, I ended up not eating gluten in the preparation weeks up to the endoscopy. The consequence of this was, naturally, that the result of the exam came out negative, and I will never know for sure if what I had was celiac disease. Maybe one may argue that it wasn't that smart, but for me, the important thing was not to have another label with one more disease, but that I could not only stop this problem as I was also in the way to heal my body from my ankylosing spondylitis! So when the gastroenterologist said one more time, that I didn't have any problem with gluten and I should keep eating it (?!), I just ignored and moved on with my life.
From here it was a long road of slow progress during many months. I still suffered from terrible headaches from the concussion, meaning that I only had a small window every day to read that book and scout the internet for more answers. I read about nightshades, a group of vegetables that includes potato, tomato, eggplant and peppers that can be problematic for persons with autoimmune conditions, especially for rheumatic disease, and to which I was reacting violently. I also tried many supplements and stopped with them when I found out that I didn’t tolerate them. And I was amazed by the number of names that a food like corn can have, and how they are hidden in every supermarket product you can possibly imagine – even in bacon! So many times I ate one of these products containing corn or soy without knowing it - I would then get immediate pain in my knee and back that would last for a couple of weeks. For every tiny progress that I made there was at least one step back. So it took forever! And there was still something provoking pain in my knee. Although I couldn’t figure out what, I knew I was still missing a (huge) piece of the puzzle.
Meanwhile, I couldn't understand why my head wouldn't improve. The months were passing and although I could better tolerate light and sound, I still couldn't maintain long conversations or be with more than one person at the time. And computer and reading were almost impossible. Sometimes, when I was tired, I even had difficulties to put my thoughts together. The neurologist I was seeing said I was suffering from post-concussion syndrome, that it could last up to two years (!) and that there wasn’t much to do rather than rest and wait. This was the toughest thing I have been through. One thing is to lose your physical capabilities, as I had lost and suffered with for many years. But now, just as I found a seemingly impossible way to recover my physical health, my cognitive function was impaired. And what can you do, if you can't think like yourself?
These were really mentally and emotionally difficult months, where I had to spend my days staring at the ceiling and waiting to get better (and without worrying!). I think that what gave me the strength to go through it was the promise that I had just found, of becoming healthy again from my autoimmune diseases; and the belief that, if I could recover from an autoimmune disease when everybody else tells you can't, then nothing would stop me from finding also a solution for my head! The doctor also told that in some cases a change of air can be helpful for this syndrome, and so we decided to use the vacation we had bought for many months ago, before the concussion and all the sickness that started with that year and before I lost my job.
Hitting rock-bottom, again
When the vacation came, we flew to Greece. The good weather, the sun and the calm environment had a positive influence on my head and I began to improve from my constant headaches. Equally, the knee pain I still had diminished and I started to believe that everything would finally be solved and maybe soon I could restart my normal life. The only problem was the food. We didn’t have a kitchen and couldn’t cook for ourselves so it was a challenge to avoid these foods, especially because ingredients like corn, soy and nightshades are added to so many foods, and gluten-cross contamination is everywhere. And on that time, I wasn't so aware of these problems and didn't know that pepper is also a nightshade, bouillon cubes contain corn and soy, and most vinegar have gluten, just to name a few. Even with my best efforts and all the requests to the staff, I ended up eating large doses of these foods without knowing, and consequently, the pain in my knee that initially seemed to improve, was now wildly increasing! As the days passed, my knee became more and more inflamed. I lost track of the possible culprits and got afraid of eating anything. It was a nightmare! The so desired and needed vacation was rapidly becoming the worst event in my life as, despite my best efforts, I lost the ability to walk and ended up in a wheelchair!
In panic, I went straight to the rheumatologist as we came home. I couldn't just stay in the wheelchair, I needed a fast solution! So I got a knee infiltration with the promise of a fast recovery that yet, never happened. And there wasn't any alternative rather than wait. Wait for a miracle, wait that the disease would stop affecting my knees, so that I could leave the wheelchair. Once more, I was left to wait, on my own. The problem was that even though I was back to my previous diet, I was not improving enough. My knee was so inflamed that even with diet and physiotherapy it wouldn’t improve. I discovered other nightshades, read about eggs, peanuts, caffeine and alcohol and removed them from my diet. But still, there wasn't enough. Deep down, behind the panic, I knew that the solution was in the food. After understanding the reasons behind it and trying it in my own body, I knew that it was food provoking all that inflammation and pain. But I couldn't figure out what! And on top of everything, all the inflammation and the incredible stress of the situation made the symptoms of my post-concussion syndrome worsen. So I was back where I started, in deep pain and desperation, with a concussion that wouldn't go away and on my own. One more time, I went scouring the internet for answers. This is when I found the book “The Autoimmune Paleo Cookbook” by Mickey Trescott that, once again would bring me hope and better yet, start a chain of events that would revolutionize my health.
This simple cooking book brought me to the paleo world and introduced me to the autoimmune protocol. There was still so many things I didn’t know! And so many reasons why I wasn’t improving! I learned that a nourishing diet that included the foods of our ancestors and excluded modern foods was optimal to maintain health, prevent disease and even heal many of the current chronic health issues. After all, this is the way humans are designed to eat.
Within a couple of days following the autoimmune protocol, I found finally relief from the pain in my knee, and after a mere week eating this way I could leave the wheelchair behind! I found out that I was reacting to all grains, not only those containing gluten and corn (even though those are the worst ones for me), and that the nuts and seeds I was eating all the time were a big culprit for me. I also identified sesame seeds as the trigger of my insane migraines and although it would take me a few more months to heal my post-concussion syndrome, my constant headaches and dizziness improved significantly! And, most incredibly, my vitamin B12 and folate deficiencies went back to normal and even the anemia I had for years was finally cured! Now, besides understanding the reason why food has such a big impact on the immune system, I also had a clear template to follow so that I could bring it into balance and put my disease in remission. And so it began my long and sinuous path to recovery.
Long path to recovery
After 5,5 years of severe physical limitations and two months in a wheelchair, my physical condition was poor. I had lost all my strength, flexibility and mobility and because of the two months in the wheelchair, I got such a big atrophy on the muscles of my left leg that my knee cap got displaced, creating pain and inflammation, so I needed intense physiotherapy. I started very slowly, with rehabilitating pilates and then I was so lucky to participate in an intensive rehabilitation program – SANO, that really kick-started my recovery. From here it was a slow built up during many months until I was able to go to a gym by myself. I also discovered that part of the headaches I still had were provoked by the incredible tension accumulated on the muscles of my top back and neck, due to my extremely weakened musculature. And the remaining symptoms of my concussion (that lasted for 1,5 year!) slowly improved within the first couple of months on the autoimmune protocol and with omega-3 supplementation.
It felt incredibly empowering that I was now the one in control of my disease and not the other way around like it had been for years! But it was a long road of slow progress and many setbacks (and still is…) because I was alone on it and I had to find out everything on my own. Besides the foods excluded in the autoimmune protocol and because my gut was in such a poor condition, I was also reacting to some other foods. And it took me several months to find out that the remaining pain I had on my knee was actually a result of histamine intolerance, which is making the process longer and harder. I read several books, dug deep into research and study scientific literature to find solutions to my specific problems and answers to satisfy my curious mind. Slowly I started to gather the knowledge necessary to put all the pieces of the puzzle together to start healing myself and begin the path to reverse my autoimmune diseases. I discovered that stress is a big problem for me, and probably the biggest trigger of my disease and slowly began implementing lifestyle modifications and strategies to manage stress and get rid of my long-standing insomnia (still working on that!).
Last summer was wonderful. I felt healthy for the first time in many years and it felt really good to do banal things such as laying down in the sand at the beach or carry my niece, small things that I thought I would never be able to do again. It was also really nice to hear comments from persons that have followed me closely on how my health had transformed and how much better I looked because sometimes it can be difficult to see the difference yourself when the journey has been so hard and desperately long. In fact, I felt so much better that I decided to stop the medication (Simponi) I was still taking for my spondylitis. And I not only continue without symptoms as I also feel great!
As for where I am now, I can finally say that things start to look good, and I am enjoying life for the first time in all these years. My back feels great! I am completely free of the debilitating pain I used to have and I find real pleasure in doing all the small things I couldn’t do before. My head is also back to normal, without all the headaches and cognitive dysfunction. But I still have a long path of rehabilitation in front of me to regain my strength after so many years of severe physical limitations. And I still eat strictly on the Autoimmune Protocol (with some modifications to address my histamine intolerance) and continue working on fixing my gut and on introducing new foods. At some point, I felt sorry for myself that I couldn’t eat so many foods. But after seeing and feeling how my health and my life has completely transformed, if anything I feel overjoyed and forever grateful that I found a way out of the miserable life I had! And then, I also took the decision to transform all the negativity of my life into something positive and become a health coach, so that I can make use of my knowledge and help others suffering from autoimmune disease to find the path back to health. I am happy and excited with the beginning of this new phase of my life, and I am hoping that with the diet and lifestyle changes I made and by continuing my physical rehabilitation, one day I can have a totally normal life again. And I can’t wait to get there!
A word of hope
My health journey wasn’t easy, but the knowledge I gained revolutionized my health and with it my life and the lives of those around me. It made me understand how true it is the saying “we are what we eat”. It made me realize how much control we actually have over our health and the lack of it. Suddenly, I am not just the unfortunate consequence of the “bad genes” I got. But rather, my health is the combination of those same genes with the environment around me. As it is yours! And whether we want it or not, whether we are ready to accept it or just not yet, food is a big part of that environment! Everything around and within us (like the food we put into our bodies) is an important player in determining how our genes are going to be expressed throughout our life. That's right, you have the power to control the progression of your disease and to prevent it! And by doing the right choices, you can become healthy again. But to find the path back to health shouldn’t be this difficult. You shouldn’t feel alone and lost (and actually end up in a wheelchair despite your best efforts). And that it is the reason why I decided to dedicate the knowledge I gained during my health journey and made this blog, to help you regain your health.
So welcome to your healthy future!