Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Possibility for complete cure of AS in near future

Hi Inanna

I came to this website via success with gluten and corn free initially (over 20 years ago) - I was able to reach virtual remission within 1 year on no wheat, no corn, almost no refined sugar.

I am an old hand - 50 this year battling since age 17, my father is very badly affected by AS but copes with 2 hip replaced and fused ribs and back. He is just 71 but is still active and cycles from time to time.

Because of other research I have seen and discuss on other websites - I don't look at low starch as the end game - I believe that other proteins could be involved for some people.

I agree my analogy was not spot on but don't agree with the replacement either. It's chopping a few wires in the circuit board with a blind fold.

From other research in to other autoimmune diseases like Celiac, then RA, MS and AS - we know that these disease are not the body attacking us for no reason - but it is a misdirected attack against something else. Perhaps asymptomatic infection like Proteus Mirabilis in RA, Streptococcus in PsA.

..and that is just bacterial proteins, we also have other proteins citrullinated / deaminated (modified via enzyme reaction or via heating). There are so many other dietary valid angles to explore instead of low starch - and there are some related studies out there.

Research is even beginning to unpick why we make the misdirected attacks - nearly all of these point to overload of antigen through leaky gut, low zinc, low manganese, low vitamin D - estrogen overload.

The one area I am most interested in is commensal bacteria - using an analogy again - these other bacteria in the gut are 'witness to a crime' - so when an antigen is "arrested" by the immune system its presentation to the immune system is informed by these witnesses. Some of these are 'hang em and flog em' causing subsequent over-reaction (marking of B / T Cell).

In Rheumatoid Arthritis they believe that Prevotella Copri is one of these - and it likely that many proteins are 'presented' incorrectly to the immune system due to this imbalance.

If nobody has taken Ebringer's work to a definitive conclusion then that is criminal and reflect what I said about funding - there will be no profit for this cure.

Always gluten free - however, for the last 3 weeks I have been helping my wife with a diet called "Banting" - and with low carbs, little sugar I have to say my guts are incredible at the moment with a knock on effect to my inflammation (which wasn't too bad anyway).

Tonight I had my first rice for over 3 weeks.

Biologics for depression is madness - we know for sure that Gluten free, Casein free is being used with real benefit for many autistic children... and we know why it works too with reduction of LPS from gut bacteria (again) being key.

I suggest you read "Grain Brain" by Dr.Permlutter - the opioids in grains do more than contribute to depression and brain fog in many poeple.

Hi,

Grain Brain was an interesting read (read it a few years ago), however, since they have found a proliferation of inflammation markers in the brain in people living with depression, surely treating the inflammation along with any other lifestyle changes would be beneficial. NSAIDs don't help this. Biologics have in many people. I wish you could have experienced the revelation of a lifting of the depression curtain that I did when I started biologics 10 years ago. I was 42 and have been battling depression since I was a child. The idea of using biologics to treat depression is no more mad than using them to combat AS, RA, or Crohns. They aren't perfect, but then I doubt any treatment is.

As far as Dr Ebringer's work is concerned, a double-blind controlled study is almost impossible. You would have to hospitalize your subjects for the entirely of the study - no going to work, no going out to socialize, nothing, in order to control the starch intake of the subjects completely for a period of time long enough to determine whether or not it actually helps.

Do you discount the IL-17 and IL-23 research that has been done that has found these points on the genome are haywire in us? Food intake might exacerbate, but they are not the root of the problem. And your supposition makes no sense for some of us.

My father was diabetic. I grew up eating exactly as he did - an extremely healthy, no processed foods and very few refined sugars or grains, and portion-controlled diet. I've had signs of AS since childhood. You cannot explain that away easily. I know I am not the only one, either.

Neither can you discount the fact that many people with auto-immune disease develop other auto-immune diseases concurrently.

Also, while I respect your years of experience living with this, please do not make the mistake of lumping people with AS and the Spondys in with RA. The disease mechanism is different. The Spondys are closely related to IBS, IBD and Crohns, but not so much RA or any of the other immune based arthritises.

It's far too easy to read research stories and extrapolate that to what we are experiencing.

Warm Hugs,

Hi Inanna

I am not lumping RA in with AS - the disease process is slightly different but the causes may be quite similar.

If and not a big IF for me - Ebringer was right and AS is related to an errant response to Klebsiella bacteria in many cases - then his other research that showed that Rheumatoid Arthritis can be an errant response to Proteus Mirabilis bacteria (from UTI or other parts of the GIT - especially as Proteus and high motile).

BTW - we also have loads of studies on Streptococcus involved in Tonsil infection for Psoriasis - another errant immune response. Remember these infections do not have to be full on they can be asymptomatic.

I found this article - on il-23 / il-17 from 2014

The IL-23/IL-17 Axis in Spondyloarthritis Pathogenesis: Th17 and Beyond

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4058712/

the gut disease in HLA-B27-Tg rats begins shortly after weaning and is dependent on gut flora raising the question of whether changes in the gut microbiome are influencing activation of the IL-23/IL-17 axis. This is an important area for future investigation.

We also know from other conditions like autism that this happens just after weaning - everything is pointing to the gut microbiome, the regulation of the gut barrier and the way that antigens are presented to the immune system.

It cites this article -

Hypothesis: Time for a gut check: HLA B27 predisposes to ankylosing spondylitis by altering the microbiome

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3204318/

We have entered an era in which some have begun to explore the benefit of fecal transplantation to alter endogenous flora. The reduction of arthritogenic flora or the induction of non-arthritogenic flora are potential avenues of therapy which might be efficacious with fewer risks and even a safety profile that would justify their use for prophylaxis. Perhaps, nearly forty years after HLA B27’s impact on susceptibility to spondyloarthropathy was discovered, we at last have the tools to elucidate the mechanism for this remarkable association.

We cannot carry on blaming genes causing haywire responses - 40% of people carry the genes for Celiac disease - there are other triggers and diet can impact these triggers a hell of a lot - by radically altering our microbiome. We know that children that are born by Caesarian also have more susceptibility to autoimmunity - for similar reason.

Regarding diabetes - I have quite a few in my extended family that have T2D and have recently been following research in to this closely too. The advice on resolving insulin resistance is out of step with current research for this. Lower carb and high fat resolves IR in many people - and address metabolic syndrome allow weight loss. Kellogg funded research will undoubtedly say otherwise!

BTW - I once read it took 7000 studies for scientists to agree that smoking was really bad for you.

Yet - It took 1 man and 6 children - to discover celiac disease after the 2nd world war - there is validity in logic, common sense, joining up the dots. Educated hunch!

So you are right on studies - they can be next to useless even if they are well designed. We don't have time to wait for 7000 studies.

Dear Inanna, TMG, DG and all !

Thank you all for posting yours valuable replies.

Its only a year since i m into AS, so my knowledge about the researches and terminology used regarding AS is limited, having read all yours post , it has developed in me a urge to do a self study of disease myself so i can understand clearly all the related things to AS.

My question about biologics was just a random one as MY rheumy made a mention of it though i had fairly no idea about Biologics. Here in india, biologics treatment is too costly so apart from the effectiveness of Biologics on Disease, i will have to think from financial point of view too, as i ll have to make a years of saving to afford it.

i can figure out from all yours post that , dietary control is effective in fighting AS and improving the living conditions . I have already started on Low starch diet and feel like its helping and i hope it ll lead to a complete remmision.

As a novice to AS, i often wonder about the frequency of flare in a AS patient? . Can we assume that if we dont get any pain over a long time , then there also wont be any skeletal damage/fusion being happening over the same period of pain free time.
What are the periodic checks that AS patient needs to do ?

thank you all

having you all around, its giving me more strength to face AS.

Hi,

Just so you know, I do realize that haywire genes are not the only cause, but they certainly are at the root of the matter. There are other factors, no doubt, that must be in place for the whole thing to go pear shaped. However, I do feel that the genetic component must be in place for the immune-disease to activate. Otherwise, every baby that has ever been weaned would have developed some disease or other.

Sometimes I wonder whether, had breast feeding been in vogue when I was born, I would have developed my disease(s). I suspect so, as I'm relatively certain that my sister also has autoimmune disease, albeit undiagnosed because she won't go to doctors having watched my dad go on a constant basis her whole life. She was breast fed where I was not. It runs in our family on both sides between diabetes and AS.

I am a strong proponent of 'what we put in, we get out' and do not discount gut microbiology as being part of the equation. What I discount is that it is the be-all and end-all as some claim. As you say, there are many factors involved and certain combinations of factors will lead (or not) to disease.

Personally, wheat is a problem for me - it is the biggest single trigger I have. Other starches really don't cause a problem. So in my case (and my case only) I must avoid wheat. I avoid gluten because it's easier, but quinoa, spelt and kamut are also fine for breads and such and I buy them whenever I can.

Smoking studies, by the way, were blocked by tobacco companies that paid a lot of taxes and had a lot of pull. When my mother finally quit smoking in 1965 (I was 2) she did so using photos of ruined lungs given her by our extraordinary GP. Watch the film "Thank You For Smoking" some time. It's very good.

I imagine it's much easier to get the community at large to pay attention to studies that don't impact the tax revenues of the planet's nations. Just as herbals (some of which are tremendously effective) are having difficulty gaining credence - pharma companies cannot patent a flower and since they pay a lot of taxes it's easy for them to influence legislation and research against all herbals. (I'm not a pharma conspiracy theorist, by the way, just observing - that said, I don't trust any research paid for by a pharma company.)

Warm Hugs,

Hi Inanna,

I think you are right - There is research about breastfeeding and cesarian births - but recently also read about pre-natal exposure where the babies from mothers that live in the country or on farms also have less likelyhood of developing AI disease. It is so complex .

I was OK on 100% rye for about 10 years and tried spelt briefly but flared up. Cows milk affects my skin - especially milk chocolate. I think heating modifies some proteins and changes our immune response.

Some of the most interesting stuff (to me) in the last few years has been the research of Professor Alessio Fasano - He does a talk on YouTube called the "Spectrum of Gluten Related Diseases" and "The Gut is Not Like Las Vegas" - it is really entertaining.

https://www.youtube.com/watch?v=wha30RSxE6w

A protein called 'zonulin' seems to be produced more readily in us with AI diseases (not just celiac) - when the gut is presented with gliadin from wheat related products. (I don't think spelt is an different?) Causing Intestinal Permeability - hence allowing in any Klebs that are around.

So I think GUT barrier is as important as NSD - and no grains is one way to help this.

Bottom line for me from a lot of reading is that Celiac or AS or RA or MS or others - will be down to deficiency of a protective Microbiome - this is where antigens have been presented incorrectly and priming the immune system to recognise similar epitopes / amino acid sequences (our tissues).

When you see research in to Celiac and see that a few grains in the gut can go on to develop an autoimmune attack on the brain (Gluten Ataxia) or skin Dermatitis Herpetiformis - it is not a big jump to think that other proteins with amino acid sequence that are similar to our tissue could also be presented incorrectly to the immune system.

The immune system recognises protein fragments that it considers a threat - and creates B Cells which are tagged with markers depending on the perceived threat. It will recruit immune response either short term or long lived based on this tagging.

I think the tagging is going wrong - and that the genes are just an unlucky coincidence and not a cause of the disease.

If I ever lose control with my dietary approach - I will seek out Immumotherapy to 'retrain' my immune response to certain antigens - which ones - I am not sure but certainly Klebs.

I stumbled on this whilst googling - I have no interests in this BTW -

http://www.anallergo.it/en/products/sublingual/sublingual-bacterial-therapy.html


Take care, Sean