Hi

I'll be brief. I've had AS for 18 years, fused vertebrae, pain all along, uveitis flares. 2 years ago I discovered the low starch diet and miraculously, and to my sceptical disbelief, the pain vanished.

I'm a professional structural engineer, having a scientific mind I've been researching and starting to self experiment after reading everything I can, particularly Alan Ebringers papers.

The only simple indicator of active AS is the level of C reactive protein (CRP) in the blood. Typically this is 6mg/L for normal person, 15 for light AS, 40+ for strong AS.

For the last 4 weeks I've been logging all my food with an Android app called Yazio. This gives a 'reasonable' measure of starch consumption. Once a week I pay for a private blood test . I'd say my strictness for the diet is not great over this period. For the next 4 weeks I'm going super strict, as close to zero starch as possible. Then next 4 weeks eat a heavy starch diet.

I'll post results soon.

My question to the community and the power of the internet, can we make this more scientific and increase the sample size with some more participants?

Just the sort of thing I have wanted but I doubt if you will get the results you want and .expect

Current CRP is consistently 13mg/L for past 3 weeks. One more week and will go to super strict starch free. Exciting to see if anything happens. 2 years ago when I started the diet I was very strict and CRP was at 7.

I doubt CRP alone can be used to evaluate the activity of the disease.

I have CRP below 5mg/l but still some pain in my feet.

Still, monitoring CRP frequently could be good to evaluate your inflammation level and maybe diet progress

George you're very brave to volunteer your good health for this experiment. I would be very surprised if you lasted the full four weeks on the heavy starch diet. I also would hate you to undo some of the good that you've achieved, by feeding the bad bacteria again. Why give them the upper hand? Please be careful and don't gamble with your health - it's not worth it in my opinion.

Hello, GeorgeHolland10:

I did a similar experiment about 20 years ago, using ESR which in my case was highly indicative of AS activity.

By then I had done several courses of antibiotics, in combination with NSD but I wanted to essentially characterize the corners of my operating window.

It is very difficult to be certain that what we are measuring is a system under "normal" conditions because our gut environment is so dynamic, but in general and over the long-term, we can get some measure of confidence in our numbers.

Looking at the ESR trend lines in Ebringer's "Etiopathogenesis..." paper there were 37 lines and 34 of these down, one flat and two "wrong-way" sloping. It is odd there were no interim tests, but the instructions to the patients were "eliminate dietary starches to an extent You are able and still feel comfortable with diet, overall."

One of the wrong-way subjects had a son, who was also a patient at the clinic, and said "...dad has a potato at every dinner--says it is not really a meal without it."

Naturally, we are not going to ruin our own experiments, but this demonstrates the difficulty with testing diet, in general.

My results were very supportive of diet and as a vegetarian I had an average ESR running about 44. Once I changed my diet, I got down to 23 and when eating starches it climbed to 29 where pains began once again in this range. During that time, diet was strongly linked to ESR (I could get this test on-demand in Philippines where I was staying several months and they had just opened up a pizza place in my city of San Fernando La Union).

After many cycles on my ABX protocol now, my ESR remains between 1 and 5 and is totally independent of diet.

My explanation for this is that I cleared out my SIBO, which was a primary factor in disease severity. Diet alone cannot achieve this, IMHO.

Good Luck with Your experiment and I hope that You do not hurt Yourself too much!

HEALTH,
John

John

Those are encouraging results!! It's the problem that diet is hard to test that keeps this potentially life changing remedy out of mainstream consensus. I know the diet works, I can feel it!
Ebringers results are very clear but unfortunately don't meet the clinical standards required. I emailed Alan about doing a test like this and he already had. The results showed that reducing starch consumption did reduce CRP significantly. It was a small pool in his experiment.


This forum has a lot of viewers. I will post results of my monitoring of CRP and also general level of starch consumption here. If it shows a positive correlation I'd encourage more of the community to try it.

If I'd know about this diet 18 years ago I might not have 5 fused vertebrae and years of pain!

Just curious since we are talking blood work and I didn't want to start a new thread, but have any of you ever had elevated Alk Phos (alkaline phosphatase). I just noticed this in my chart and am awaiting a response in my patient portal.

My latest CRP was 1.1 and ESR was 12.

It would be very interesting to see the result. Unfortunately, I am not sure how good CRP is at judging disease activity. I have psoriatic spondylitis, which is same family as AS. I have suffered for about twenty years now. Only ONCE was my CRP raised ( 25) , all other times, even when in severe pain, CRP was normal. I think this is fairly common in AS as the inflammation can be "hidden" .

I can appreciate your impulse, but those of us who have found success with diet have nothing to 'prove'. And I really can't imagine a universe where I would eat heavy starch and knowingly put myself in pain just to report some results that confirm what all of us already know.

The medical and scientific communities have largely failed to explore diet as a factor, and individual docs, beholden to pharmaceutical companies, aren't willing to believe that the solution could be so simple and have so few side effects.

Mind you, if you're still really keen on this, catch me next Christmas! Since starting this diet a few years ago, I have developed a perfect record of heavy, super indulgent starch eating through the month of December.

AS has never shown up in my blood work. HLA B27 and MRI are my only indicators. I do appreciate how you are exploring the science behind it!