my experiences and thoughts seem to mirror drizzit's more than anyone's.

i've had GI issues longer than i've had inflammatory arthritis. thus for me, i do believe it starts in the gut.

and though no, i never did hard core NSD for months on end, i always wondered why LSD which has been amazing for my metabolic syndrome (lowered my blood sugar and triglycerides, raised my HDLs) didn't seem to affect my inflammatory arthritis.

but i really do think the "leaky gut theory" makes a lot of sense for me.

so, a combination of reading and testing, and trusting in the data.

biopsy, antibody blood work, and gene blood work said i did not have celiac. food allergen / food sensitivity testing showed no problems with any of the grains, not even wheat.

but, blood tests showed i was highly sensitive to casein in dairy and a little sensitive to eggs.

so to me, it made sense to stop eating those foods.

that was half of it.

also, so many journal articles these days on the gut microbiome and health. how a lack of the "good" bacteria, namely bifobacterium and lactobacillus, and an over abundance of other bacteria that have been shown to lead to "leaky gut" can really cause all kinds of disease. these shown direct correlations to IBD. also obesity, metabolic syndrome, heart disease, cancer, the list goes on.

its really only been in the last decade or less, since we've been able to sequence whole genomes without having to islolate microbes that this field has taken off.

i think the makeup of the gut microbiome affects our health more than anyone yet realizes, but as people are starting to realize.

and i don't think its "just" klebsiella.

stool sample testing showed that i had no lactobacillus in my gut, despite daily stoneyfield yogurt. so i started on probiotics.

those tests also showed that i had "potentially pathogenic bacilli" in my gut. so not necessarily klebsiella, but something else potentially harmful. i'm suspecting that they have outcompeted my lactobacillus and that's why i was missing those. that's the purpose of the probiotics, to replenish the "good" bacteria to outcompete the "bad" bacteria, the one's supposedly contributing to my leaky gut. hoping that the "good" little guys will allow the gut to heal.

then the food antigens (in my case, the casein and egg proteins) can't get through the intestinal wall and cause an inflammatory response.

is this what is really happening? don't know, but its a theory that makes sense.
and one that is partially based on testing and data (blood tests for the food sensitivities to casein and egg. stool sample testing to determine my bacterial composition of my gut). and then following protocols to rectify those (eliminating dairy and eggs from my diet. taking the probiotics.)

results? i do feel better now in between flares. but i am still flaring and thus still working on that.

could it be the other things making me feel better in between flares? possibly. its a complex experiment with too many variables. but since i am doing better, i will keep it up.

part theory. part experimentation.

so, similar to the klebsiella / starch theory. only for me it seems to be "potentially pathogenic bacilli" / casein and eggs. still leaky gut theory, food antigens, inflammatory response. but the specifics seem to be a bit different.

in the infamous study that me and john were discussing, AS patients surprisingly had higher levels of bifidobacterium compared to controls. we tend to know a lot more about the bacteria that we can culture, so a lot of discussion tends to focus on the ones that we can grow and that have been shown to be healthy to ingest, like lactobacillus and bifidobacterium however they are not even among the top 50 most abundant species in the gut. even a super strain probiotic containing 15 species is miniscule compared to the 500+ species in the gut. the benefits of probiotics appear to be mainly due to effects on intestinal immunity and competition with pathogens rather than restoring levels of good bacteria as even single strain probiotics can have a significant impact. in cases like yours where lactobacillus species are absent, traditional probiotics would obviously be especially beneficial.

as you mention there are also many species in the gut that have only been discovered and classified recently with metagenomic sequencing that are often low in IBD such as faecalibacterium prausnitzii and many that are increased such as bacteroides fragalis. if crucial commensal species that can't be made into probiotics are severely depleted or completely absent then there is very little that can be done to address this problem except what they are now calling a 'human probiotic infusion'.

just a few reading suggestions for any who are interested in learning more about some of the stuff that has been discussed in this thread. all papers have full versions available for free.

'A new vision of immunity: homeostasis of the superorganism' - http://www.nature.com/mi/journal/v3/n5/full/mi201020a.html

'Getting the Bugs out of the Immune System: Do Bacterial Microbiota “Fix” Intestinal T Cell Responses?' - http://www.sciencedirect.com/science/article/pii/S193131280800406X. the yin/yang figure in this article is awesome

'Food-based strategies to modulate the composition of the intestinal microbiota and their associated health effects' (pdf) - http://www.jpp.krakow.pl/journal/archive/12_09_s6/pdf/5_12_09_s6_article.pdf

'Therapeutic manipulation of the enteric microflora in inflammatory bowel diseases: antibiotics, probiotics, and prebiotics' (pdf) - http://tiny.cc/rai4bw

'The causes of intestinal dysbiosis: a review' (pdf) - http://tiny.cc/l6h4bw

'Therapeutic transplantation of the distal gut microbiota' - http://www.nature.com/mi/journal/v4/n1/full/mi201079a.html

Agreed.



Not what I communicated. Perhaps it is worth going back and reviewing.



Agreed. I, for instance, went vegetarian at the recommendation of a doctor. Big mistake for me. I wasn't getting enough iron from my diet and became disturbingly anemic. Additionally, I think a lack of stomach acid or the right enzymes made all that fiber difficult to digest. It really bound me up.



I don't know if I'd use the term "a lot". While, yes, some do come here with heart on sleeve, many, if not most, come here for advice, guidance, and to learn. Don't think I made that assumption. Again, read my posting again if need be. I simply commented on the ire some of the non-dieters have toward those who enjoy success incorporating strict dietary changes. Making these changes to your lifestyle is not easy. You of all people should realize this. Somehow, it makes me think that some are envious of the fruits of others labors. Again, if an individual gave it a fair shot and didn't realize benefit, I tend to believe them at their word. However, there are those who are quick to repeatedly dispute the effectiveness others enjoy. This is where other personal deficits might enter the picture. That's all.

The problem with probiotics is your guessing. some are actually promoters of inflammation.
From my experience I will never take them again. three times i've tried and all three times I've felt horrible.
I dont doubt our disease begins in the gut.
When I had my remission with the iniation of enbrel my gut was the first thing I noticed functioned perfectly.

since i was devoid of lactobacillus, from stool sample testing, made sense to start there. went one step further, started on lactobacillus plantarum, as research has shown it to have a positive effect on intestinal inflammation. and then, to me, the true test, does it work. for me, the answer was a big yes. then a few more added in by the advice of the GI doc. don't know if i need all three, but things are better with them, than without, thus i stick with it.

but if they made you worse, then by all means, it wasn't the right thing for you, at least not the specific ones you were on.




that was my reaction to the 6 day pred taper. 3 days in, and the constipation was completely turned around! its been a few weeks, "knock on wood", things remain good for the time being.

I haven't failed the no-starch-diet and it hasn't failed me, but what has failed is my ability to be so strict on the diet.

If I had started the no-starch-diet long before the AS has destroyed my body, then I believe I could have gotten much better results from dieting over long term. Aside from that, there are a few areas that contributed to 'what went wrong'.

I'm poor and living in a country setting so I can't afford to travel from town to town to hunt for starch free food. Most of the alleged starch free food I find here in town fails the iodine tests. All of the food that doesn't pass is wasted money in my opinion, especially if we decide not to eat it. Even if I am lucky enough to score on starch-free foods, some of it spoils before I can eat it too. If I had started the no-start-diet when I was able to earn a living then maybe I would have never had this problem (because maybe then I would still be able to work).

I have a problem with eating foods high in sugar too, so for me, I need to avoid both starch and sugars. I have to be strict on dairies, fruit, sweeteners (including natural), etc. There are times where I've had milk and fruit juices set off huge AS flares. I'm also lactose intolerant through colitis.

Whatever sets off my Ulcerative Colitis also sets off my AS pains, and that almost never fails, so I need to be sure to never upset my colitis. This includes eating healthy and starch free food too. I have to avoid some of the natural goodness all together, like seeds, nuts, anything with peels, and so on.

There once was a time where I went strict on the no-starch-diet and all of the natural unprocessed foods weren't agreeing with my Colitis. Everything I was eating was getting passed through as undigested too. Too much of the wrong fiber maybe? That is when I became interested in using blenders and juicers, and cooking veggies into mush, to help assist me with digestion, which seemed to help somewhat.

For some reason, I never seem to have any noticeable problems with the natural unprocessed starches. For instance, I can have a baked potato but I can't ever have potato chips, even the 'natural' kind. No problems with brown rice or whole grain breads either. So I'm baffled about whether if starch is being my worst offender or not. Over-processed over-sweetened foods in general are definitely a no-no for me, especially if they are starches. Naturally sweet food is also bad for me, such as a glass of OJ or grape juice. I hate having to eat things like candy, cookies and cupcakes anymore - nearly instant pain.

I can't have a lot of caffeine so I make an exception for a small piece of chocolate if I am having trouble waking up from fatigue though. Sometimes being awake and alert is more important than what pain it can cause. I make an exception for a few swallows of lemon-lime pop too, as it is the only drink that settles my stomach.

So for the past several years I have been following my own diet: Low starch, Low sugar, Low dairy, and as more wholesome and nutritious as I can make it. If I can at least do that, then I am eliminating at least half of my pain.

I am pretty much the same! This is why I am really confused with my body! I have Undiff Spondy and I seem to be ok with rice and grainy breads (obviously in limited amounts) but sweet/sugary foods (especially anything overprocessed and I am in pain) I also get pain from potatoes (but not bread?) We all seem to have such different reactions to different starches. Maybe it depends on the stage of disease and other GI issues we have (I also have IBS).

I have had a similar experience. Whilst I still can't eat unprocessed wheat with zero problems, I will have far less pain than if I had eaten a processed starch, eg. battered foods. So yes it is a similar experience. I would say that something in the processing is interfering with the fermentation / digestion process and encouraging too much bacterial growth for the body to handle AND the wrong kind of flora too.

>> Most of the alleged starch free food I find here in town fails the iodine tests.

I use the iodine test as a guide, not as a hard rule. It always reacts to cooked tomato / pasta sauce in my experience. Yet I can always at those without any trouble as long as they are not adulterated (I only had one brand that was adulterated without listing the added starchy thickener, it was an expensive brand too!).

>> I can't have a lot of caffeine so I make an exception

Hmmm... what about black tea or green tea? I have some minor issues with chocolate, and also find it leaves me *much* tireder after 2 or 3 or so hours. So yeah, black tea is better for me as a pick-me-up when fatigued. I have to be careful not to leave the leaves in too long as the tannins can get to strong and make me tired hehe. Green tea I can leave the leaves in as long as I want and it doesn't matter.

As an aside.. mint tea actually makes me sore for an hour or two. Nothing to do with starch. Appears to be purely a toxicity reaction, and that points me to look at the liver as part of the equation in AS. No question that gut flora is the major player though.

>> The problem with probiotics is your guessing. some are actually promoters of
inflammation.
>>From my experience I will never take them again. three times i've tried and all
>> three times I've felt horrible.


Well that just sucks. You aren't the first person to have troubles with probiotics. I presume you have tried different brands / different strains / checked with iodine for starchy fillers / made sure there was no Inulin or FOS (fructo oligo sacharides).

It kinda makes sense that people will react differently to different kinds of flora I suppose. I have had no real positive effect from the standard probiotics that you get in your average chemist / supermarket / vitamin store. They neither helped or worsened me.. they just did nothing.

I did try two different brands of "soil based organisms" which had a broad spectrum of different bugs. Also eating foods containing maltitol as a prebiotic food for the critters. I am getting stronger month by month now, so I strongly recommend people try them. Whilst I can guarantee that it was the soil based organisms that worked for me (could have been tai chi or just chance, who knows).. I think: hey, it is worth a shot. A small investment with a huge potential for gain and if it doesn't work then it was a cheap experiment and you get to share your results.