Jonathan’s Journey With Rheumatoid Arthritis and Ankylosing Spondylitis

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Gluten, gluten everywhere, but not a thing to eat

This is the story of my issues with Rheumatoid Arthritis, Ankylosing Spondylitis (AS), and worst of all, the misconceptions of “proper” or “healthy” eating habits. I would just like to say that even though I have these conditions, I have always been able to push them out of my thoughts and worries, living as normal a life as possible. I try not to let things I cannot control bother me.

I was born in Toronto in 1984. 14 months after, I began walking. My parents noticed that I had a small limp and I was taken to The Hospital for Sick Children to determine the severity and causation. The attending doctor told my parents that I had Juvenile Rheumatoid Arthritis (JRA). Luckily, my case wasn’t as severe as some juvenile cases. I lived with only minor stiffness and pain for the first little while. Though I still had to receive yearly checkups to monitor the condition until I was 18 years old, as a child, I did my best to ignore my condition. As long as I could run, jump and play with my friends with only minor discomfort, I was happy. Of course, without any knowledge or interest in my condition, my diet was not much of a concern either. I ate what most children eat while growing up: junk food, snacks and far too much sugar.

As the years went by, I got heavier and heavier. By the time I was 16, I weighed 180 lbs and stood 5’9“. I didn’t lead the most active lifestyle but participated as best I could. Very few people knew about my condition because I didn’t believe in complaining and blaming my weight on my arthritis. I didn’t particularly enjoy school and always found it difficult to stay focused. Occasionally, I had trouble sleeping as well. I joined the lacrosse team when I was 17 despite the pain in my knees and my unhealthy weight. I may not have been able to run very fast or for very long, but I was skilled with a stick and had exceptional hand-eye coordination. Playing lacrosse seemed to make the school year go by a bit faster, even though we never did win any games that year.

When I did turn 18, the pain in my knees was constant. Every morning I would wake up exhausted, stiff and sore. But that was just because of the arthritis right? That’s the card I was dealt so I struggled through and kept on going. I was finished with Sick Kids and went on to a specialist at the Toronto Western Hospital. We had one appointment together after which I never saw her again. I believed that because I was an adult and wasn’t in unbearable pain, regular visits were unnecessary. If I could go back and slap myself for such idiocy, I most certainly would.

Surprisingly, I graduated high school with the rest of my class. However, I could not decide what I wanted to do with my life. I didn’t find any single subject to be particularly interesting. In fact, the only classes I did enjoy were Phys Ed and Shop. Knowing that my physical condition limited my choices in the field of physical education, I chose to seek out a profession in woodworking. I attended Conestoga College and graduated from the two-year woodworking program. This is where my life took a turn for the worse.

My first experience living away from home saw me gaining 50 lbs in just two short years. Drinking, overindulging on food, college-sponsored events and living across the street from a McDonald’s, while fun at the time, did not improve my health in the slightest. On the Sundays that I stayed at my residence, I would go across the street, get a Quarter Pounder Supersize Meal and another burger just because it was cheap. I would pig out and watch football all day. The entire time I was attending college, I went to the gym (which was free for students) once. ONCE! IN TWO YEARS! No wonder it was so easy for me to gain that weight. Eating the way I did, with my condition, I had made things so much worse. I was fat, lazy and apathetic towards my education. One of my instructors even said to me after I asked him why he didn’t like me, “Jon, I have no problem with you personally, I just hate your work ethic.” That didn’t really change anything though. I still did everything half-assed. I was glad that my program had its own lounge, because I was always tired. Again, a problem I attributed to my JRA.

After graduating I had a new outlook on life. My heavy drinking and partying days were behind me. I wanted to join the adult world, start working and move out. Or so I thought. I got employed right after my summer break in a woodshop and quit six hours later because I hated the production line. I wanted to work in a place where I could do custom work, not mass production. In other words, I didn’t want to work too hard on monotonous labour. Well, unfortunately, the woodworking industry doesn’t work that way. After trying out several different shops for weeks and months at a time, I finally decided that, although I loved woodworking as a hobby, it was not the career for me.

What to do now? It seemed like I was right back where I left off after high school. Except this time, I had absolutely no direction at all and no idea of where to begin looking. All the while, my JRA is slowing me down. I was tired and far too lazy to put in the necessary time to look into a new line of work. Luckily for me, I have a mother who constantly nagged me to get going and find a job. That got me out of the house and looking for work very quickly. I settled on a security position at a condominium a few blocks away from my house. What could be better? A job that started at 6PM and consisted of me sitting, doing a ten-minute patrol, then returning to my chair three times a night. I thought to myself, ‘I don’t have to do anything! I can just sit here and occasionally help some residents.’ I would bring a bagel for dinner every night and the residents would occasionally bring me pies, candies and chocolates. Sometimes all at once! I joined a floor hockey league that met every Monday, thinking that it would be a great source of exercise. It was not.

In October of 2007 I had a gallbladder attack. It was by far, the most excruciatingly painful experiences of my life. I had it removed shortly after and thought everything would be fine. The scare made me change my eating habits, but not in the right ways. After about ten months in my chair, I was sick of the shitty security job. It wasn’t challenging, it wasn’t fun, the money was terrible, and after a while I started to resent not moving. I needed a change… and fast.

And then it happened. I was speaking with my uncle one day, and he suggested that I try Massage Therapy as a career. Girls in high school always enjoyed my massages more than others and often times even suggested that I become an RMT. I took my uncles advice to heart and went for an information session at the massage school closest to me. I was enthralled! It really seemed like something I would be interested in and excel at. I enjoy helping people, working with my hands and making my own schedule. It seemed like a perfect fit so I enrolled right away, quit my security job and prepared for the next chapter in my life.

I really enjoyed the classes despite all my previous distaste for all things scholarly. I still couldn’t help feeling exhausted every day and for the most part, was still eating the same way. I learned so much at school, but the most valuable part was learning more about my JRA. I learned how important it was to stay on top of it and keep going for regular x-rays and checkups. I finally decided it was time to see my rheumatologist again. After six years of unhealthy eating and living a predominantly sedentary lifestyle, I don’t know why I thought I would receive any good new. I went for my checkup as well as a follow up about a month later. My doctor told me that the swelling was significant in my knees and feet, and that the pain in my lower back that I had been experiencing was due to Ankylosing spondylitis, which had fused my sacro-iliac joints. I was instantly heartbroken. The images from my pathology textbook flashed through my mind; pictures of an old man with AS who couldn’t even stand up straight because his spine was completely fused. I was put on a strict regiment of two anti-inflammatory drugs, one of which was a weekly injection.

I was a wreck. I broke down. My life as I knew it was over. I thought my spine was going to fuse and thus I would be stiff as a board for the rest of my life. Amazingly, I managed to pull myself out of bed the next morning and go to school. I was distraught. Anyone could see it and almost all my friends asked what was wrong. I couldn’t even talk to them or receive their sympathies. Eventually, I was approached by a teacher and began recounting the unpleasant conversation of what had transpired at the doctors’ office. She was a shining beacon of hope. She went on to tell me that there were exercises and treatment I could perform that would drastically slow or possibly even halt the progression of my AS. Needless to say I was in a much better mood after that conversation.

I graduated massage school (weighing in at around 255lbs), passed my required government exams and was on my way to starting my career as an RMT. I even found employment within a month of getting registered. I became one of two RMTs at a GoodLife Fitness Health Centres Clinic, as well as one of many at a day-spa. In March of 2010, after talking with some of the trainers at the gym, I gave up bread. What a difference! I was exercising, eating better, and I felt incredible. I continued this for about a year, and my weight plateaued at around 235 lbs. I knew there was more to be done but didn’t know where to begin.

At the beginning of 2011, I left the spa and began full time at GoodLife. In February, some of the trainers at the gym were raving about a “paleo” diet and how great it was. The book had the words “Lose weight, get fit, and reverse disease” on the front cover and I read it immediately. It didn’t take long for me to realize that what Robb Wolf was suggesting here was spot on. Everything discussed within was tied into my life as well as the conditions of those around me.

In March of the same year I began my Paleo induction phase. “Meat, fish, poultry and veggies. No sugar for the first month.” It was difficult, but I noticed the effects after the first week. For my whole life, I felt pain in my knees, swelling, fatigue and apathy. April, a mere month after starting this new “caveman” diet, my pain was gone. Not lessened, but GONE!

My workouts lasted only about 20 minutes because the extreme change to my diet made me increasingly tired. I exercised perhaps 4 times throughout all of March. However, when the moment of truth came and I stepped onto that scale at the end of the first month, I was shocked. 15lbs lighter! But how? How could this be with such limited exercising? I couldn’t believe it. I continued, more vigilant and dedicated than before. If I could lose that much weight, and feel this great just by changing my diet alone, imagine what I could accomplish if I worked out on a regular basis as well! I have been on the diet for 9 months and counting, I have managed (with my doctors permission) to cut out the injection for my inflammation, I have lost about 50 lbs and gained a level of confidence, pride, and a much-welcomed boost of energy that I never thought possible. I now eat and live a drastically healthier lifestyle than even one year ago, accompanied with proper supplements and a good work out schedule. And what’s more, exercise is fun now!! I know right. The compliments kept pouring in from friends, family and even gym members who only saw me in passing. It has been a wonderful experience.

I have a new lease on life, owed in large part to the support of my trainer, co-workers at the gym and Robb Wolf. I know that without the knowledge gained from them I would still be in the same unhealthy slump and not on the successful path I am currently on. Don’t get me wrong. I love bread, chips, cookies, candy and all that “good” stuff, but they make me feel terrible for days after eating them. Inflamed knees, headaches and feeling bloated are things I can live without. If I can change my diet and feel this amazing, anyone can. Sure it is tough at first, but once you realize all the benefits (more energy, less pain, weight loss, less inflammation, gained concentration, confidence… the list goes on) you will not want to go back to the way you ate before. Trust me, this diet works. And like Robb Wolf says, try it for 30 days, if you don’t feel and look better, you can do whatever you want. But if you follow the diet properly, you will never go back.

-Jonathan Kohl

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  1. John F
    December 12, 2011 at 1:25 am

    I have been free from Ankylosing Spondylitis after going on a low carb / paleo / primal type diet as well, its amazing!!!

    I posted my story on KickAS a while ago and you can read it here if interested http://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=454887&page=1

  2. Andrew
    December 12, 2011 at 5:18 am

    Nice job man, bravo! Will be sharing this article on all my social networks, truly inspiring.

  3. Debbie B in MD
    December 12, 2011 at 6:35 am

    Truly inspiring!!!!!! Great job!!!! I could really use a massage now.

  4. Crunchy Pickle
    December 12, 2011 at 6:55 am

    This is a phenomenal story! I am so happy for your success and for freedom from all of the pain and discomfort you were in. Great work!

  5. linda
    December 12, 2011 at 7:04 am

    Way to go!

  6. Elizabeth
    December 12, 2011 at 9:00 am

    Thanks so much for the inspiration Jonathon! I have Psoriatic Arthritis and started eating paleo a few months ago in an effort to manage the disease better. I hope to be able to go completely off methotrexate sometime in the next year. Your story is a real motivator and just another nudge to me to keep eating this way. Congratulations on your changes!

    • Shelley
      April 23, 2012 at 9:51 pm

      Elizabeth, I too have PA. I’ve heard of the Paleo, but am havaing a hard time cutting out all grains especially for breakfast! But wondering if it has helped your PA?

  7. Jenny
    December 12, 2011 at 10:19 am

    Congratulations! I hope your health continues to improve and that you’re able to maintain this new lease on life. What an amazing story!

  8. Tamera
    December 12, 2011 at 11:23 am

    Excellent, inspirational story! I love reading everyone’s success stories. The only unsuccessful story is the person who never started. Thanks for the share, you are yet another contribution I can send to my brother and sister in the hope that they change their lifestyle.

  9. Ben
    December 12, 2011 at 11:36 am

    Awesome work Jon, well done. High fives to you.

  10. Mel
    December 12, 2011 at 11:41 am

    Nice work! If I eat breads, I instantly (well when my stomach attempts to digest it) get knee arthritis for a day or two. :( “SAD”, indeed.

  11. Brissia Jimenez
    December 12, 2011 at 1:48 pm

    Congratulations on the new lease on life! I am so very happy for you and this is such an inspirational story. Keep going :)

  12. Paul Alexander
    December 12, 2011 at 2:27 pm

    Amazing transformation! Proof that modern illnesses can be reversed and you can enjoy a healthy body!

  13. Lindy
    December 12, 2011 at 4:02 pm

    I have also battled ankylosing spondylitis with the paleo diet and LDN and am doing great today! I was so severe just last year that I was taking Humira, methotrexate, Sulfasalazine, NSAIDs, and large doses every day of prednisone just to survive. I was almost to the point of looking into disability when I went cold turkey, stopped taking all the drugs, and went incredibly strict paleo – no starch at all (not even fruit, sweet potato, or squash). I dropped to 108 at 6 ft tall, but my stomach slowly healed, and now I’m back to my normal weight and able to eat a wider variety of foods. I still have flares, but they disappear quickly – I’ve even been able to return to my trapeze/aerial work. I did use some supplements: fish oil, turmeric, and plant sterols. I’m so thankful for Robb Wolf, Loren Cordain, and Mark (Daily Apple). They gave me the motivation to keep trying and to beat the spondy monster! Way to go, Jonathan!

  14. Kam
    December 13, 2011 at 9:05 am

    What an awesome story! Congrats to you, & best wishes for continued success!

  15. Angel
    December 13, 2011 at 5:33 pm

    Looking good Jonathan! Congratulations on your success with the diet. :)

    I went gluten-free a couple of years ago and some muscle pain that had been bothering me for months disappeared. I think going gluten-free ought to be the very first thing people try when they start living in a lot of pain.

  16. James
    December 14, 2011 at 3:47 pm

    Well, I hate to be a skeptic here but I have been living with Ankylosing Spondylitis since I was about 12 (now 24), use NSAIDs heavily and with methotrexate at points.

    While paleo is great, and healthy eating and being a healthy weight are definitely the right thing for anyone with AS, I know it’s not a cure. And no amount of pasturised beef and asparagus will be. Don’t get me wrong though – I’m super happy for anyone like Lindy above who has had success.

    • Amy Kubal
      December 14, 2011 at 5:06 pm

      James,
      I’m sorry to hear that paleo didn’t help relive your AS. I have several clients that have seem marked improvements with paleo. I would be interested to know your approach to paleo and learn more about your diet and lifestyle. Don’t count paleo out yet! http://robbwolf.com/consulting/amy-kubal-consulting/

      • James
        December 14, 2011 at 6:38 pm

        Thanks Amy, I’ve been in various states of loosely paleo eating over the last year, mainly making exceptions at times to get carbs for lifting. Starting 2012 I’m going to have my first attempt at going strict paleo for 30 days, so who knows – maybe that will be the signal for me that it’s the best choice. If so, I’d happily eat my words, hat, and anything else paleo man saw fit. Thanks for the genuine comment, I appreciate the thought.

        • Lindy
          December 16, 2011 at 6:57 am

          Hey, James! Paleo didn’t work for me at first either. I was a wreck for a couple years as I tried it off and on. Paleo finally worked when I did the following: no egg white, no nuts, no starch AT ALL – not even squash or sweet potato, no medications (while stomach was healing) – I dropped Humira, methotrexate, NSAIDs, misoprostal, Sulfasalazine, and supplements (for 1 month). For an entire month, this was basically my diet: meat, broccoli, cauliflower, carrots, avocado (TONS), and coconut (fresh from the shell only – NO CANNED…it has guar gum). It was heck for one month. I dropped almost 30 lbs and everyone around me really worried. But my head felt so clear, and I felt better than I had in 5 years. I think the tons of coconut and avocado really healed the gut lining. I did make some broth with no onion or garlic. The only spices I used were greens (rosemary, basil, oregano, parsley). No salt. Black pepper was o.k. after a couple weeks. This is a really hard road, but I’m so glad I took it. I do think the LDN has helped me stabilize. It’s hard to get a prescription, but it is working for several people I know. After one month, I was still flaring, but I went to a naturopath who added the following: fish oil (ProOmega from Nordic Naturals – anchovy and sardines), Curcumin 500 from Pure Encapsulations, and Thorne Moducare plant sterols. This seemed to get me over the threshold of flaring. I still flare if I’ve been eating carelessly (I can eat almost anything now in moderation), but it’s far more under control now, and I’m much better than I was when I was on all the drugs. If I notice a flare coming on, I’ll return to really strict eating and I get better quickly. Hang in there, and keep trying things!

        • Mary
          December 16, 2011 at 8:44 am

          Keep in mind that there are many hidden sources of gluten. If gluten is a cause of your condition, you may want to do a very strict 30 days (no packaged powdered spices, no sauces of any kind unless they are specifically marked gluten-free, ditto for tomato paste, etc.)

  17. Katherine
    January 2, 2012 at 3:34 am

    Wonderful story, very inspiring. I am also battling AS with a paleo diet. The important things for me are to strictly avoid gluten and starch. You can read more about the theory behind this here http://www.kickas.org/londondiet.shtml and there’s a very friendly, knowledgeable forum on duiet and AS there too :). Paleo carbs are fine for many people but if you’re fighting AS, you really need to avoid starch more strictly.

  18. rishabh
    August 11, 2013 at 1:47 am

    i am also suffering form AS as it hurts alot to me i am 21 this time and quiet good this time but was severe 2 yrs back…sine then i am continous gaining weight dont know what to do i left palying,gyming,exercising since 2 yrs i am losing strength..i have the same problems as u but u have a good inspirational life…

  19. Felicia
    August 14, 2014 at 11:13 pm

    I am suffering from ankylosing spondylitis and rheumatoid arthritis as well. Ive been in chronic agony for two years and right now I have swollen elbows sacroliilac pain, knee pain, evrn jaw pain. Its also effected my shoulders. I havent started any dmards yet or biological agents just prednisone. Trying the diet and finding it difficult. No luck yet but havent been able to totally eliminate gluten either. Just added more veggies fruit and fish to my diet. can someone with success contact me my email is fnfiacco@live.com

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