Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group The mechanism to full remission of AS?

Hey all - curious to know how some people are able to go into full remission of AS. I've read that some people are able to achieve remission via diet or fasting. When I say full remission, I mean that they can go back to eating most, if not all starchy foods without any reaction and no longer have inflammation.
I'm trying to understand the what's happening to the gut or the mechanism to this change. Is the microbiome better balanced? Less klebsiella? etc...
I'm would imagine this has already been discussed. If anyone knows of a thread and can post a link that would be awesome.
Thanks!

Hello, thebluedog:

It took about 6 years on my own AP for AS before I no longer reacted to starches, however, it was a long journey of healing and two steps forward one and a half back. So perhaps other people can achieve this much sooner than I did:

I. STRICT DIET
way down the list are--
II. Antibiotics
III. Supplementation
IIII. Exercise

In my opinion, the KEY was getting rid of SIBO; no other explanation explains my absolute remission! I can't accept the "burn-out" proposition because I no longer get kidney stones or iritis which were the main reasons I decided to pursue remission via this more radical way.

HEALTH,

John

John,

That's very interesting..."the KEY was getting rid of SIBO". From what I understand, AS, begins in the small intestine with an overgrowth of klebsiella. Therefore, it makes sense that if you can eliminate SIBO, provide better bacteria balance, then you have less overgrowth of klebsiella.
John, am I on the right track? Please correct me if I've misstated anything.

It makes me wonder how many people with AS are either symptomatic or asymptomatic with SIBO.

89% according to a recent Chinese study using lactulose breath tests - https://ard.bmj.com/content/78/Suppl_2/1482.2

John, your response suggesting that the key to AS remission is getting rid SIBO intrigues me. In my late twenties I began getting symptoms that suggested RA; they were very mild and dissipated within the first year. Then over the next few years, for a period of time, I would get very intense lower back pain that would be present in the morning and later subside. About the time of my very first AS symptom, I began having SIBO symptoms. I saw many doctors and at that time no docs were of much use. Finally, after several years, saw an alternative doc who diagnosed me with gut fermentation (SIBO). This was before the time SIBO was coined. He suggested an SCD diet. I did the diet and didn't really notice any improvement over 3 months. I decided to stop but added the very beneficial SCD 24 yogurt. That's when I noticed a significant improvement. That seemed to be the answer. Not sure why I didn't eat/make the yogurt during the diet. Maybe doing the diet for 3 months improved my microbiome and the yogurt pushed things in the right direction.
I kept a journal. It said that my digestion was perfect and that my neck pain and stiffness went away. I began to gain healthy weight that I had lost over the 4 year journey. At that point, I didn't have any diet restrictions.
So, I can relate to SIBO remission being the KEY.

The key for you is not necessarily the key for all of us. There is no single answer to this. But I am glad you found your answer.

So true, I don't mean to suggest it's the answer or key for everyone. It just may be a good starting point. As mentioned in the post above by jroc, 89% of AS patients were found to have SIBO.

That's a very limited study, at 720 participants. It's difficult to know whether the participants are demographically similar to individuals reading the study. It's also quite vague when it comes to how participants were chosen. I agree it looks like a case could be made, but fact is that we cannot assume that all patients with AS have SIBO, any more than we can assume that kleb p. is the cause of all cases of AS. Looks like you found your answer, but not mine.

The information is useful and a starting point, but not conclusive at these numbers. All they can say is that 89% of 124 patients (assuming the diseases were split evenly within the 720 cases) had evidence of SIBO.

Still, glad you found your answer.

Light and love.

Hi All

Very interested post, the small intestine involvement rings true with what I have observed on myself.

When I take pure food grade coconut oil about 4 tea spoons with water, my pain goes down dramatically and my joints and back start to crackup and loosen. I take it regularly for this reason.

This also proved to me that gut and bacteria play a role in AS. Especially the small intestine.

I also take iron, and soon Lots of vitam K (green leafy veggies) , zinc and gelatin to heal the gut linings....

Thanks for the help....

Cheers

Lee

Lee, I'm glad that you have found something that helps. I'm not sure how it proves that gut and bacteria in the small intestine play a role in all AS, but it seems to in yours.

I have to get my iron from natural sources because supplements can impact my Crohn's. I've never heard of gelatin to heal the gut lining. Care to share more?

Love and light.