Lauren’s Story

Hi, my name is Lauren. I grew up with a very healthy, vibrant childhood. Nothing could ever stop me from running the fastest, jumping the highest, and riding horses better than anyone I ever knew. That was my passion, horses. If I could not do something, I figured out a way to do it. I was never one to give up or give in.

Never did I think I would eventually be stricken with such a depressing, energy zapping, incredibly debilitating disease with a really dumb name called Ankylosing Spondylitis. Never did I think there would be a few years where riding horses again seemed hopeless.

I got married in the summer of 2007. Soon after that I started experiencing what I thought was a simple case of sciatica. My mom always suffered from sciatica pretty bad, so I just thought it was genetic and it would just come and go and that was that. I remember the day I almost got the wind knocked out of me from the very first pain in my lower back. I went running with a friend when all of a sudden my lower back felt like all the joints locked up on themselves and it literally took my breath away. I thought maybe I was just tense from my new office job, sitting all the time, so I just needed to stretch. I had to stop periodically during that run just to stretch out my back for any relief. A few days later would mark the change in my life for the next 4 years…

The sciatica over the following 2 or 3 days grew increasingly painful. We went out to dinner with family and sat in a booth for a while talking. As we were leaving I could barely scoot out of the booth and upon standing I almost collapsed. I literally could not put ANY weight on my right hip whatsoever. I was completely dumbfounded as to what the problem was. It felt like my hip was out of joint or was going to crash though itself. My husband had to carry me from the car to the bed.

Well like many with AS, thus begins the saga of getting a diagnosis…

At first I thought I was sitting too much, then I thought the position of the printer under my desk at work was forcing my legs a certain way throwing me off, then I thought it was my mattress, etc, etc. I’m sure my husband was beginning to think I was a hypochondriac searching for attention. I have been to my GP, a Sports Medicine doc, an orthopedist, several rounds of treatment of physical therapy that only made me feel worse, a chiropractor for many, many “adjustments” that many times left me limping out of the office, painful massages, 3 MRI’s, 3 or 4 X-Ray’s, and finally went to see my old orthopedist who worked on a torn ACL I had back in college. He was a godsend. He was the one who finally had the brains to send me to a rheumatologist. After my follow up visit to go over the x-rays and bloodwork, I was diagnosed as having “possible pre-AS” in December of 2010. “Possible” because my SI’s were not fused on the x-ray.

Oh, the RELIEF of having a diagnosis, yet undeniable SADNESS I had. I was hoping it was a mechanical problem, because certainly I could not have some strange, genetic, chronic disease! Yet, I secretly deep down inside knew I did. And I was just handed a brochure and told to basically deal with it or take some strong medicines that suppressed my immune system.

I didn’t particularly think that was acceptable to me, so I remained in denial and miraculously for the next 7 months I was in complete remission, furthering my thinking it was all a bad dream and whatever was behind me was behind me. Well, it was like my body was simmering behind the scenes for those 7 months because I ended up having the MOTHER of all flares, the most painful flare yet…right before I was supposed to go on vacation to the Bahamas. Needless to say that entire week was consumed by pain and the depression that goes with the flares. It was NOT fun. I had plenty of forced smiles, bahama mamas, and comfort food to go along with that. I also had plenty of time to contemplate on the beach. Every day I would rack my brain for clues to why I had this and what I could do about it. On one of the days I was meditating, and thinking about all the online research I had done while trying to get a diagnosis. I remembered skimming past one of the “possible” problems associated with my search terms in the Google bar. It was ankylosing spondylitis, and I remember reading somewhere in a short paragraph about how diet could control the symptoms. I made it my resolve that when I got back to reality, I was going to get busy with my new homework.

After doing my research on NSD, I realized that everytime I felt good or was in one of my short remissions, it was around the time I was doing some sort of diet, and the worse times I would flare was Fall through Winter. Go figure, Thanksgiving and Christmas is starch city everywhere you turn.

My first day of NSD was August 25, 2011. Five days later my food journal states, “Feel pretty good today! Went for walk after work”. TWO days after that my journal reads, “I feel great!!!!”. The journal and the iodine testing is a MUST DO. It took me a while to work out the kinks, and I am still working out some residual kinks, but I am almost there. In the 4 1/2 months I have been on this lifestyle change, I have only had 2 or 3 MINOR flares, that usually only lasts about 24 hours. I have learned that if I feel a flare coming on, all I have to do is do a fast from dinner to dinner the next day and the flare has either subsided greatly or gone. I have also lost 30 lbs, which I definitely needed and I’m sure helps the pressure on my joints anyway. At this point I have learned dairy and too many nuts will bother me, so I am now starting to move in the direction of  following the Paleo Autoimmune Protocol, which is no dairy, nuts, eggs or nightshades. I find that personally, I feel BEST if I eliminate those items. My diet is now any kind of meat and a variety or lettuces, broccoli, chard, kale, and water. Cauliflower is currently debated.

Believe me, if I can do this, anyone can do this. It was hard giving up my starchy favorites, as I was the ultimate foodie. I LOVED spicy ethnic food, southern food, italian food, etc. But it’s just not worth it to live in pain. Life is SO much more than food. Life should be about laughter, joy and exploration! You can’t do those things in chronic pain! So those non-nutritious starchy foods are not worth it for me. I am so much healthier, happier and in as close to being pain-free as possible. I still have plenty of things to work out in my diet and I know I will get there. I will never trade this new lifestyle for anything. I rode horses on my parents farm a few weeks ago and I look forward to riding again for the rest of my life.

  • Bridget Barlow

    Wow! That was inspiring. I am really happy for you,Lauren! I am the mom of An A.S. ath-
    lete who sounds a lot like you. Jumping higher, running faster!
    He just made a pot of pizza stew the other night, because he was craving those flavors!
     I am curious to know if anyone has tried introducing naturally  fermented foods ( good bacteria) into the NSD…or dare I say it..sprouted grains? Having read about the grains, it seems like none of us should be eating them unless they are sprouted. Do they then become more of  a veggie?If anyone has a comment on either of these, I’d love to hear it. 

    • Hi Bridget,
      Lauren is an inspiration for sure.  Her success story remains one of the most popular pages on this site..thanks Lauren!

      Lots of people use probiotics on the NSD.  Kefir is good stuff as far as fermented products go.  If you take probiotic supplements you just need to read the label and make sure there’s no starch as some of the more popular products use fermented rice, etc.

      Sprouted grains may be good for the general population but not for anyone with our condition. 

      Hope your son is doing well.  Is he sticking to the diet?

      • stacy

        Is cellulose an ok filler? Renew like probiotics contain cellulose

        • I don’t know. Humans likely can’t digest it, but I’m not 100% sure. But what matters more than that is keeping it simple. Probiotics are unproven as far as I know so you’re not likely to miss them if you cut them out. Maybe stick to yogurt and raw veggies as prebiotics.

          My tough love takeaway message for you is that you need to simplify your diet and stick to things which are clearly starch free. Starch free, whole foods. Nothing processed. Cut out all the extras including probiotics and anything with additives. Cut vitamins and any other pills unless required by your doctor or for some other medical condition. Cut out all processed food. Reread my shopping list/getting started section. Add food back in one at a time per that advice. Buy some iodine and start using it right away.

          Stacy: keep it simple. Just start already.

    • Lauren

      Hi Bridget,

      I am glad you found some inspiration from my story 🙂 I don’t really know what sprouted grains are, as the only thing that comes to mind is that Ezekiel bread, which would definitely be off limits. I did just try bean sprouts last night that tested negative for starch and were a nice change to my diet.

      I am dying to know what pizza stew is! It sounds delicious. From my experience, I have had to be really careful with tomatoes. Since I haven’t really eaten any, I’m not sure if they would cause a flare, but most that I have tested, especially canned tests positive for starch so I have been too chicken to try them out.

      However, I read that tomatillos are not starchy so I bought a jar of Verde Salsa and tested, and it came out just a few tiny spots of black (I think due to the peppers in the mix). I have eaten it for the 3rd consecutive day with no flare, so thankfully that seems to be a nice dip for my ::gasp:: pork rinds…(don’t judge, I used to be a huge tortilla chip and dip freak, so I need some sort of crispy crunchy dippy thingy)!

      Take care and so glad you found this blog and I hope your child can find some immediate relief through diet!!

  • cali

     
    I
    have this disease and severe leaky gut. 6x since 2006 have ingested
    (3X) Activia yogurt (3x) a supplement similiar to airborne with
    probiotics in it -24 hours after ingesting – all 6x developed severe
    cornea ulcers. I told the doc in 2007 that I suspected the Activia
    yogurt was the trigger for the eye infections. He thought I was
    crazy. Not. Avoided probiotics since 2008 eye surgery. Accidently
    picked up a Kroger generic “Airborne” 2 weeks ago. Took 2
    of the effervescent tablets and within 24 hours was in the ER with a
    cornea ulcer in eye. Looked at the label on the back of the generic
    Airborne and there it was: probiotics, lactobacillius. Why are they
    not putting a disclaimer on these probiotics that it is dangerous to
    take for people with AK spondyolosis? I only found one website
    selling probiotics that had this disclaimer:” Warning: Have been
    shown in some scientific studies to increase the growth of “bad”
    bacteria such as Klebsiella Pneumonia and other less-friendly
    organisms such as E. Coli and many Clostridium species5,6. Klebsiella
    Pneumonia is associated with the auto-immune disease Ankylosing
    Spondylitis (AS) and also worryingl!

    •  What is the rest of your diet like?  Also, it’s probably a stretch to blame Kleb growth on the probiotics in Activia when one of the ingredients listed right on their label is modified starch.  It’s the starch causing your flares and not the probiotics.

      Please read the rest of the posts on this site and try to get a general understanding of how this disease works before commenting again.

  • cali

    Lauren, do you have any real DIET recommendations for someone with AK and sever leaky gut, as well as fibromyaligia which came about shortly after diagnosis? And how do you eat well on an unemployment budget? What is the single most important food items that you would immediately delete from your diet? Last night all I had to eat was kraft mac and cheese with a can of tuna fish. I feel awful today.

    •  I’m sure Lauren will chime in soon, but I’m a little confused by your comment.  Have you read anything on this website?  Cut out starch from your diet.  Kraft mac and cheese?  Are you kidding?  You can’t eat pasta on this diet.  I’m assuming that you mean AS and not AK.  Not sure what AK is.

      Read this post: http://www.sickopportunity.com/?page_id=36
      And this one: http://www.sickopportunity.com/?p=121

      If, after reading up on the basics of this diet, you have some questions then feel free to chime in again and I’ll try to answer.

  • Chris

    Lauren this has really given me hope. Also so good to hear how quickly the body responds. I have been an AS sufferer for about 12 years. The past few years it has been manageable but over the past 2 months it has become incredibly painful again (biggest problem is at night where sleep is a luxury). I am only 2 days into the diet but your story has really given me even more determination. Thanks for sharing.

  • Rhonda

    Lauren, Your story sounds gives me inspiration to “really” do the NSD. I was diagnosed November 2013 after years of on and off neck, back, hip, shoulders etc…pain. The rheumatologist wanted to put me directly on Humira. I said no and tried NSAID in low doses while researching other options. The day after Christmas I started the NSD and felt much better in just a few days. I have not done the iodine testing or journaling and still have hip and some back pain. So after reading your story I think this may be the missing link. Have been able to ride several times , but still have days I cannot mount.