Here's the story of my experience with Spondylitis. I have only recently become convinced I have the disease. The last few weeks have been miserable with pain and fatigue. I write this in response to advice from my girlfriend (she's an awesome and supportive girl). Maybe it will help to encourage someone out there to address their situation or help validate their experience. It will probably be therapeutic for me too.

History:

Low back pain started sometime in 2001. I was 32.
A doctor visit resulted in ibuprofen and some muscle relaxer medication which temporarily improved but didn't resolve the issue. I just lived with pain most of the time. Sometimes it was better, sometimes worse. I just accepted I had a bad back and tried not to complain. When it was bad I blamed it on over exertion or sleeping in a bad position. I took an Aleve or two pretty regularly which helped the pain fairly well. In hind sight I realize this was the start of the disease and the beginning of flare up periods that would continue for a decade.

Colon pain also started sometime in 2001
A doctor visit resulted in stomach acid reducing medication which made no difference. I had either bad constipation or diarrhea pretty regularly. I suspected and researched irritable bowel syndrome but decided I didn't have that. I was desperate for improvement. I cut back on the amount I was eating and tried to eat healthier and eventually it did improve some. Little did I know at the time this combined with the back pain was the height of my first real flare up of the disease.

Continued flare ups until mid 2002
I started calling my colon pain and associated constipation or diarrhea my "stress pain". I never could really associate it with any particular stress though. I tried to eat healthy, but never tried to connect a specific diet to the pain. I had a strong stomach. I could eat or drink anything… I thought. Past the stomach was where I thought healthy foods made the difference.

2002 - 2003
I couldn't stand the misery of my body. I didn't move much and was up 175 pounds and flabby on my slim 5'10" frame. I was 130 when I graduated college in 1990. I decided I couldn't live the rest of my life that way and vowed to change things. That's when I started obsessing about diet and exercise. My desire for 6 pack abs led me to cut nearly all carbohydrates from my diet, add nutritional supplements and exercise an hour or more per day. I felt great within a few weeks and kept up that exercise for years to come. I lost fat, added muscle mass and was in the best condition of my life at 145 pounds. I had no back or colon pain. I had succeeded!

2004 - 2008
I kept up with a decent diet and exercise but did add more carbs back into my diet. I had occasional stress pains and back pains… generally brief. Again it was Aleve to the rescue each time. In hind sight those occurrences were me misbehaving and eating carbs. I would snap back and balance my calorie intake over a week or two by restricting carbs again. I really wanted to maintain my fitness and the awesome feeling that I thought came with being in great shape and eating right. I gradually started eating even more carbs around 2006. They are so tasty after all. Working out a little less and all the while dealing with more frequent occurrences of the pains and taking more Aleve.

2008 - 2010
I gave up on working out when my job started requiring much more of my time and I decided to pursue other interests where I could stay active. I started eating more carbs regularly but still tried to eat well and not gain too much weight. I was on a path to being out of shape again and resigned myself to just not being overweight. The back pain was almost always present. It wasn't really gone unless I took two Aleve and then it wasn't gone for too long. The stress pains were more frequent too. I wanted to do less and less because of the pain. My weight climbed… 150, 155, 160.

In 2009 I experienced prostatitis, epididymitis and orchitis all together… intense inflammation in the nether region. Look it up if you want know in detail what each is. I rank it in the top two most physically unpleasant things I've experienced as an adult, right along with shingles. I was laid up for days and on antibiotics for many weeks to keep the symptoms away. My research led me to understand that a bacteria called klebsiella was sometimes to blame. The doctor said that I'd never know for sure what caused it.

In October 2010 I got a job that allowed me to work from home sitting behind a computer. I became even less active and for some reason started eating more carbs, many more bad carbs, than I had in years. I regularly ate pizza, potatoes, wraps, pasta, pancakes and packaged foods. I also cut way back on nutritional supplements. I noticed that my hips and knees and shoulders were really achy a lot of the time. The back pain became sharp most of the time. The stress pain still came and went.

I had ruined myself. However, I knew how to get back to feeling good… I had done it once before. I just needed to workout and eat less and get back on the supplements… but I couldn't find the energy or motivation. I was always fatigued. I couldn't understand why at 42 and 165 pounds I felt so bad. I wasn't overweight or old. I just went on working long hours on the new job and trying to enjoy a life with pain thinking someday I'd find the energy to workout again.

2011
I distracted myself from the pain with obsessive reading and research on whatever interested me when I wasn't working. In February my neck started hurting. I focused on my posture and took Aleve. Then one day in March, I had neck pain like never before. It radiated into my temples, shoulders and collarbone. It faded some with a lot of Aleve. Then mom made a visit and when I mentioned all my aches and pains, she said I had my father and some other relatives to thank for all that. Within a couple of days I experienced pains like I've never had before. It felt like my whole upper body was revolting, with the uprising originating from my spine. I though it might be the flu but then I thought of mom's comment and remembered dad's various issues. After a day or two of heavy Aleve usage to make sitting at my desk more tolerable, I started Googling. Then the stress pain came on worse than it's ever been.

What I Learned:

Dad's severe Psoriatic Arthritis/Spondylitis is part of a family of diseases called Spondylioarthritis with Ankylosing Spondylitis as the primary disease. I'm pretty sure he had mostly complete spinal fusion when he died. His death was an indirect result of the disease. He died at 53 from a cervical spine fracture in a car accident. He pulled out in front of another car which he didn't see coming… presumably due to his inability to turn his head. The arthritis was pointed to as the reason for the fracture as well. My dad's uncle apparently had Ankylosing Spondylitis too, as mom reminded me about his classic stiff hunched posture and I recall he had a lack of neck mobility too.

I read the symptoms of Spondylioarthritis and felt immediately that it was likely this was what I had been dealing with for the last decade… especially with my family history.

My symptoms include:
Lumbar spine (lower back) pain for more than 3 months that improves with NSAID use (Aleve)
Cervical spine (neck) pain
Sacroiliac (SI) joint (buttock) pain
Peripheral arthritis pain (hips, knees, shoulders)
Rib pain at the spine and breast bone
Plantar Faciitis like pain in the heel/foot
Stiffness that improves with movement upon waking
A heavy/achy feeling in my lower abdomen
Bowel inflammation/ulcerative colitis
Near vision issues with watery eyes and sensitivity to bright light (I actually installed dimmer switches on every light in my house in 2005.)
Significant fatigue

Average time to diagnose the disease is around 10 years. Exactly right for me.

Recent Insights:

I made a doctor appointment with my GP. He agreed to order spine and SI X-rays and blood tests. He prescribed an NSAID in place of Aleve. The x-rays didn't show anything of concern. Apparently because I have not yet had any bone growth or inflammation visible with an x-ray. The blood tests were normal too, but I wasn't given details. The doctor said it was very unlikely I have Spondylitis, with no further guidance. I know he's wrong.

After reading about the klebsiella bacteria connection, molecular mimicry and the dietary approach to controlling the disease I came to understand how I believe it all works. Not everyone believes this, but I do based largely on my own experiences over the last decade. It's fairly complex, but simply put, the bad bacteria (likely klebsiella) in my colon become overpopulated and some of them pass through (permeate) the colon wall into my body. When my immune system attacks the bacteria, it also attacks parts of me because it thinks the two look essentially the same at a molecular level. This is what's called an autoimmune disorder. The attack on the body leads to inflammation… in all the places I have symptoms. So what causes the the bacteria to become overpopulated in the first place? It's essentially undigested foods that make it to the colon, specifically starches which are from carbohydrates and possibly dairy products as well. An imbalance or shortage of the good bacteria apparently facilitates overpopulation of the bad too. But shouldn't the colon wall/lining keep the bacteria out? Theoretically yes, however some people apparently have a higher degree of permeability for some reason or a varying degree of permeability due to factors not well understood.

I am convinced that I achieved control over the last decade to varying degrees by controlling my diet, supplementing my nutrition and exercising without ever realizing exactly what the root cause of my issues were and the pathogenic mechanism or how it all fit together. After many hours of research, I've determined that I think I can control it better with diet and exercise than with a pharmaceutical approach.

Current Treatment:

I went back on the comprehensive nutritional supplementation plan I had been successful with. This includes vitamins, minerals, glucosamine, chondroitin, acetyl l-carnitine, alpha lipoid acid, green tea extract, turmeric extract, various phytonutrients and fruit and vegetable extracts, grape seed extract, quercetin, bromelain, choline, calcium d-glucarate, ginkgo biloba extract, herperidin, inositol, resveratrol, lycopene, lutien, zeaxanthin, coenzyme Q10, fish oil, pine bark extract, DIM, phosphatidylserine and digestive enzymes and pre/probiotics.

I am controlling the current inflammation flare up with the prescribed nabumetone NSAID and supplements Zyflamend and astaxanthin.

I am working to heal my colon with nutritional supplements including: l-glutamine, colostrum (also to help the adverse NSAID colon permeability impact), and berberine.

I have greatly reduced starches in my diet which currently consists of fruits, vegetables, seafood and meats, with just a little dairy. No grains for sure.

I'm trying to move around more… exercise is not easy at this point. I'm working on it though.

I have been doing these things a little less than a week. The back and joint pains are improved but still present. Amazingly, my near vision has significantly improved. The fatigue comes and goes. The colon issues have been severe for a few days but have just started to improve over the last day. I plan to stick with this routine until my colon issues are better and then reduce and hopefully stop the NSAID usage, with the hope I can control things completely through diet and exercise as I once did. If this turns out to not be possible for whatever reason, I'm going to make a rheumy appointment and seek further assistance.

What I Still Don't Know:
Am I HLA-B27 +? Does it matter now? I don't think so.

Summary:

I think I have a relatively mild form/progression of the disease based on so much of the reading I've done… and I feel miserable. I have great empathy for those of you out there suffering worse than I am and a much better understanding of my dad… 18 years after his death. I do wonder why I didn't see any connection between the types of food I ate and the pain over the years and why I never read more about dad's disease. I guess dad never made the food connection either. Probably denial… it's a strong force to be reckoned with. Ultimately, I'm confident I'll live a comfortable enough life with the disease, it just might take a while to find the balance needed to do so.

I found this forum and website a great resource and want to say thanks to all for that. I welcome your comments and any advice.

Welcome Brad,

Very informative post. Given your family history (father and uncle) and your symptoms, I'd be astonished if it turned out that you didn't have one of the spondys!

I hope you have good luck with the diet - way better if it works for you than all the drugs.

thank you for that detailed introduction.

good to meet you.

well done, Brad. Look forward to hearing about your progress.

Hi Brad and Welcome to KA!

The best tool for diagnosing a spondyloarthropathy would appear to be a Retrospectoscope - unfortunately these are hard to come by and you have to wait years to chance upon one... SO glad to hear that you have found yours - it took me more than 25 years to find mine.

I too have had significant results from cutting ALL starches, but unfortunately 25 years of chronic inflammation has resulted in significant mechanical damage, so I'm never gonna be "cured" of all the pain.

I'm not HLA B27+ either but I'm lucky to now have a rheumatologist who doesn't care about that - not the first one I've seen, but after a couple of frustrating starts over the years I discovered one whose name is "Ebringer" and he just gets on with managing what is going on inside of me instead of naming names!

The length of your post must go with the name - our other member whose name is Brad would be so PROUD of you!

Bravo on your detective work!!!

Keep up with the diet and keep us posted on your improvement!

I'm about to take the no NSD route myself, I've been wanting to for a couple of years now but I KNEW I wasn't disciplined enough... But things have gotten to the point that something has got to give and I'm tired of poking and stabbing myself with needles and eating so many pills that I feel like I've just eaten an appetizer... But yes, def had enough...

Good for you Michelle - it really does take *discipline* in truckloads, but the pay-off could be so worth it for you!

Of course you will fall off the wagon many times, but you can be sure that Donette and I will be standing there laughing at you covered in mud....oops, I meant to say *cheering you to get back on* cos we both SO KNOW how easy it is to slip off and how much you will regret it!

The first few weeks are the hardest, but once you start to see even a glimmer of hope it will give you strength in moments of Starch Temptation.

Ask all the questions you want... Oh, BTW - Bob just posted a couple of great links for recipes over in the NSD forum:

http://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=423928&page=2

It's post #437448.

Keep kickin' that AS!

Thanks Louise...I'm glad you'll be there to root me on!!! My biggest problem is going to rice, as we serve it with EVERYTHING here...and I absolutely LOVE cake and beignets!! But I must do something...I don't think my liver can handle any more...liver enzymes have been high for a very long time now...last lab result a couple of weeks ago, they were 3x what they should be... I've been on biologics and MTX for a very long time now...I actually did the clinical trials for Enbrel, so for a veeerrrryyyy long time, perhaps too long...that's what my body is telling me... Thanks for the encouragement...you're a gem! Sorry for hi-jacking your thread Brad...

Hi there and welcome to KA. Congratulations on your perseverence. You've obviously found what works for you. However, I would strongly encourage you, based on your family history and symptomology, to request a referral to a rheumatologist. If you do have AS, you should have a doctor overseeing your progress. There are too many things other than joint pain that can occur with AS and a rheumy knows what to watch for.

If it's meds you wish to avoid, you do not have to take them. Your rheumy can only recommend them. It's up to you to do your research and decide for yourself whether to fill the prescription. Just a thought.

Hugs,

First off all, thanks for the responses. It's been two weeks since my first post. A few things have occurred in that time.

I stopped taking the prescription NSAID toward the end of my first NSD week. I felt it was causing my severe colitis symptoms. That proved to be true and my colon healed to the point of no pain or diarrhea within a few days. During that time I replaced the NSAID with acetaminophen which isn't supposedly a colon irritant. I found that to be true and had a couple of days where I was back to my "normal achy" that I'd experienced for the last several months which allowed me to function in a more normal way. Although I need to feel much better than that on a regular basis to be content. I continued all of the supplements I've been taking.

Then I had a major flare up last Sunday night which sent me running back to the Dr for help on Monday morning. There was no lying down, no sitting, no deep breaths. Just the most severe all encompassing upper body and head pain I've ever had which radiated from every connective tissue point. I had to take something, so I went back to my old friend Aleve... 3 of them. After pacing for half the night while waiting for the Aleve to work, I started to get some relief.

I think it was caused by a poor food choice on Sat... lightly breaded fish. I also had homemade berry wine. Until Sat night I had been nearly starch free for two weeks, except for some "hidden starches". The only dairy I've had is a tablespoon of milk occasionally in a coconut flour based bread and some organic dark chocolate most days. None of which seemed to cause any increase in symptoms.

Fortunately, I got into the Dr first thing Mon. He didn't know what to make of me really. He the one that's sure I don't have AS, but I didn't have anywhere else to turn. So, he discounted the possibility that NSAIDs were causing my colon issues, but I told him I won't take them. He told me to go to a gastoenterologist for the colon which I can already feel flaring from the Aleve. He also says; maybe it's fibromyalgia, and prescribes me gabapentin for the pain and very low dose amytriptyline to help me sleep through the pain. At that point I'm willing to take what he's suggesting and hoping it will help. I researched the drugs, and decided they're a long shot but not too risky in my opinion and take them anyway... I need relief.

The pain did improve over the next couple days. I couldn't tell you whether it's due to the drugs or the strict adherence to the no starch diet and the ending of the last flare. I didn't care and decided to stick with the drugs until I'm pain free or at least nearly. Again I got back to feeling pretty good... back to my normal achy for a couple of days.

Then I went and did some dumb diet things on Thu. I ate beek jerky with soy sauce as an ingredient, a lot of tartar sauce with starch and drank wine again. Guess what I've been feeling since yesterday afternoon?!?! Right... not good. I resorted to taking one of the prescription NSAIDS before the pain peaked to the point of last Sunday night. I still feel miserable and I know my colon is going to pay for the NSAID use a little bit later. I made an appt with a gastroenterologist too.

I've realized I need to avoid every last bit of starch. I didn't really stop to think about the possible hidden starch in the foods I ate on Thu... I think because I was feeling pretty good. I've now learned that's when I have to really focus on what I'm eating... it's easier when you have pain reminding you to read the damn labels.

Maybe I also need to avoid my homemade wine or even all alcohol? I'm feeling pretty down over the idea that I might not be able to drink beer and wine anymore. I've been a home brewer and vintner for quite while now... I'm sad at the thought of maybe not being able to enjoy the consumption of my own products... I can't see continuing to make them if that's the case. It's still a price I'm willing to pay for a pain free existence... I'm just not happy about it.

I think I will go through all the food in my kitchen and categorize it as safe or not. Are green beans safe? I ate those with both meals that that caused a flare too.

I'm going to make a rheumatologist appointment too.

Lastly, I'm wondering how Michelle is doing with the NSD. I'm seeing other newbies arriving and pondering/starting the NSD. I wish everyone who's at or near the start of the NSD journey much success. Hopefully we can learn from each other as I see first hand just what a challenge it's going to be!

Glad your making an appointment with a Rheumatologist. Your current GP sounds like he's not the one to come up with a diagnosis.
Welcome to kickas, where sharing your knowledge and experience is much appreciated by it's members.
Cindy

Each individual seems to have a custom set of "safe" foods

• tolerance to starch varies
  some people do great with low-starch, while others need close to zero starch -- you'll need to experiment to find out personal level of tolerance
• tolerance to other complex carbs varies
  same thing goes for lactose, inulin, and FOS -- lots of us have problems with those too; the klebsiella are happy to live off of any carbs that end up fermenting in the gut (as opposed to simple carbs like glucose that ought to be absorbed earlier in the digestive process)
  http://en.wikipedia.org/wiki/Inulin
  http://en.wikipedia.org/wiki/Fructooligosaccharide
• food sensitivities
  gut problems being at the root of most AS cases, it is not a coincidence that most of us also have "food sensitivities", sometimes called food allergies but better referred to as food intolerances (to distinguish from the hives/anaphylactic shock type of allergies); someone who is intolerant to egg white protein should not eat lots of eggs because it will promote gut inflammation
• possible concurrent candida infection
  people fighting off candida overpopulation in the gut do best when limiting sugar as well as the other carbs mentioned above

suggestion: get tested soon for food intolerances!

In answer to your specific question about green beans, they are could be acceptable for a low-starch diet but don't qualify as starch-free
http://nutritiondata.self.com/facts/vegetables-and-vegetable-products/10523/2

I am so interested in the holistic approach to living with this dreaded disease. I have AS and I'm new to this forum. I'm horrified with the thought of biologic medicines. I'm definitely going to try a NSD. I read your other post and seen the extensive list of supplements you use as well. I'm lost on that part if it though. How do you know how much to take? I too have had this (in hind sight) for many years although was just recently diagnosed last month. My X-rays do show inflammation in my SI joints but nowhere else even though my whole body feels like I've been beaten with a baseball bat. I don't believe I have bone growth yet so I guess I'm considered "a mild case" but I can't imagine more pain and don't want to. Instill in disbelief that I "have a disease". One minute I'm ok with it then the next I'm in denial over the whole diagnoses. Sorry for babbling but I need to vent because I don't think my husband "gets it" . It's more like he thinks I just love to lay around all day . He doesn't understand fatigue. He thinks it's just wanting to be lazy.

I found when I started the diet something like that would set me back really quickly. Breaded fish is one of the worst starches too because of the frying. I'd say, find a few weeks where you are going to be able to really eat 'zero' starch, zero dairy and see what happens. You sound like you know exactly what you need to avoid and what you need to eat, you just need to realize that, at least at first , the diet can be very sensitive and you need to ELIMINATE things from your diet, not just reduce them. Consider buying iodine too! Only to use when unsure.

edit: In fact specifically, I remember about 3 weeks into the diet I was doing quite well but ate a large serving of fake-crab (pollock), assuming it was just fish. The next few days my symtoms returned and I was very discouraged because I felt I was being very strict. I then checked the packaging and both wheat gluten and potato starch were high on the list, and when checked with iodine the "crab" instantly went black, just like a piece of bread. So watch out for hidden starches, and be aware that one slip can really set you back.

Is there a list somewhere either on the forum or the web that has a complete list of starch free vegetables?

Oh, one more thing. Why cant I have tomatoes? IM ITALIAN LOL!!!