Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; No/Low Starch Diet Success/Failure Stories Ratio

Actually, it's the other way around. Prediagnosis, and for most of my adult life, twenties, thirties, and half the forties I mostly had very loose stools and a lot of what I now realize to be Crohn's-like symptoms. In those days I ate standard American diet stuff.

When I strictly follow a plant based program (with the occasional seafood indulgence), my stools are commonly softly formed, sink, and are much healthier. Just to clarify, by plant based I mean my food options are legumes, all vegetables, fruits, nuts, rice, oatmeal, quinoa, sweet potatoes, and grits. Those are the options I stick with--not really much of a careless rebel in my mind.

I was doing great too, eating that way for about 6 months, until the flare up that occurred end of August and first week or so of September. I re-evaluated things, read more on leaky gut (which I believe to be the gateway for AS activity) and decided to give up my last vice: coffee. My last cup was Sept. 2. This has been a real game changer in stool quality--they now are the most glorious specimens I can ever recall passing. I tend to believe this is an encouraging sign of a recovering and healthy gut.

Hello John:

I didn't think that the "explosive black grease" was from ulcers, but that could be the case. Nine months after that initial onset of AS symptoms stool tests did not show blood, nor ova, nor something else -- clean slate until I had a more comprehensive tests done.

Thanks for the encouragement to get a clean slate. I have been planning a trip to a clinic in Australia to do so.

I look forward to the day I can tolerate some starch.

KG

Hello jackson:

Thanks for the clarification.

Can you describe your stiff neck? In the morning mine is stiff, weak and hurts to move. The muscles all around (front, back, left side, right side) feel cold and damp inside. It feels like it is chemically burning too. I believe I feel all this in the outer connective tissues and muscles (especially at the bone attachment sites) but not really inside the joints. The muscle that has been effected the longest wants to cramp, shorten and is really knotty inside. There is more sensation but I would need to meditate on it in the morning while experiencing it then quickly make notes. My face develops pain and numbness while I sleep too. As I type this there is a strange cold/burning/numbness in my left cheek. I can't help thinking that this is related to long-term, untreated infection and has nothing to do with AS. I think this because I had no classic AS symptoms (just subtle and brief) before a scuba diving incident in which I got sea water into my head and developed various symptoms in my head afterward. Furthermore almost a year before the scuba incident a cyst burst in the sinus in that area and it made me sick for a weekend. I strongly suspect that it was a fungal ball since I lived in a mouldy home for about a decade.

See,.. I am trying to convince myself that these head symptoms are just an immune system reaction due to a body fluid build up and toxins from microbes that interfere with circulation and cell function. I am not convinced that I have some kind of arthritis. I want to believe that my arthritis is more like reactive arthritis.

I have high hopes. They keep me going.

KG

Full fledged AS attacks for me began around 34 and wound down around 42. I'm talking debilitating pain flares that would come and go fairly regularly and last from 2-4 weeks. When the attacks would leave life and physical abilities would return to normal. I had always run, cycled, and weight lifted and never stretched so if I was losing mobility bit by bit I wasn't noticing. I've never been limber. The attacks were always helter skelter location wise too--either in the hips, some part of the back, and also shoulders.

My neck was the last flare up destination in that time. Probably the worst too. It differed from the hip, back, and shoulder flares in that when the pain left the disease never felt like it did. i can't remember how bad the pain assault flares lasted in the neck but that part did subside. What never lifted was the tightness. I guess it was fusing. At its worst I was increasingly unable to stand straight, lie flat on my back, or stand against a wall with heels, buttocks, and back of head touching.

As I began tinkering with diet and slowly letting go of breads, red meats, poultry, pork, dairy, processed junk, and refined sugar as well as eliminating habits like liquor and mouth tobacco the bolts began to loosen and I was able to move my neck around a bit to work on it. Improvement at least.

I wouldn't classify anything I feel as pain these days. It's more just discomfort or frustration. It has improved now to where I can nod forward and backward nearly normal. My posture is good enough to never get questioned. Side to side movement is my tell. For instance, if you were seated next to me in a booth at a restaurant I would need to turn a good portion of my body to talk to you head on. I get asked often when this happens "what's wrong with your neck?" Bending my head ears to shoulders isn't an option. I have worked my way into being able to lie flat on my back or stand against the wall the way the rheumy asks if you give me about 10 seconds. Mark that as a success. I sleep well and don't have facial numbness ever. Some mornings it can feel weak, tight, or sore. I just move it around until it loosens. It always sounds crunchy, like stuff is breaking up. Sometimes when I tilt my head backwards to look up it feels like my brain stem is tightening. It's not really unpleasant but it doesn't tickle either. My face has never felt any effects.

Thanks Jackson, you described my neck to a "T." -- I failed to mention the crunching and inability to hold a phone between my ear and shoulder. I guess AS can also be in the head (it is part of the "axis").

A zero starch diet makes a big difference for me in many aspects: a calmer sympathetic nervous system, less heat/burning in the body, less stiffness, less insomnia,...

It is almost impossible for me to eat in restaurants. I am very tired of eating chicken salads, egg salads,...

I'm a nut and coffee addict and they are keeping me in flare probably.

KG

If it makes you feel better quitting coffee was not nearly as hard as i had feared. I guess I've just gotten to be a pro at depriving myself of past joys. You probably know all about that as well.

It didn't hurt that I quit coffee mid-flare and would not have been tip top either way, but still. The first couple of days were sluggish for sure, but I was spared head aches. After that it was pretty smooth and I definitely feel better for it--no more gerd, improved stool quality, and a general feeling of well being.

I'd encourage you to try giving it up. I agree with your thoughts on leaky gut. The consensus of articles I read about leaky gut all damned the effects of coffee and the havoc it wreaks on the gut due to its acidity.

What happened on your scuba mishap? Where and when was it? Just curious.

Hello Jackson:

I've heard about the gut damage and over stimulation that coffee should do. I did quit it for some time two or three years ago but I don't think that there was improvement.

I just bought a new bike to ride in the morning and afternoon; 35 mins each time. I am expecting the regular exercise to make a bigger difference than quitting coffee; perhaps coffee will be ended in a month.

I am of the understanding that resistance training (my legs need a lot of power going up little mountains) increases growth hormone (HGH) which increases leaky gut healing.

In August 2013 my diving partner and I were surfacing in Sipidan Malaysia from 40 meters. My inner ears and perhaps other air chambers in my head did not want to adjust to the pressure. We both were running low on air. I could hear bubbles streaming in my head and there was a fair amount of pain. After that I had a sensation of fluid in my years for a few months and occasional difficulty hearing. Serious symptoms slowly grew over months and years. ENT's and neurologists didn't take it seriously. Then there was the "domino effect" so that my gut, spine, sacrum, hips, hands,... were eventually effected. One rheumatologist believed that I needed to see a psychiatrist given my infection theory. Her partner adamantly claimed that there is no association between bacteria and AS. I could go on

KG