This is written by Jordan Gold. He contacted me through Instagram (goldjor) a bit less than a month ago and skeptically started the carnivore diet. This testimonial really made me happy. Ankylosing spondylitis is very similar to what I have except it causes arthritis in the spine (among other joints). It’s horrible. Anyway, Jordan emailed me the following:
“Mikhaila! Thank you, thank you, thank you!
I’m a 26 year old male with Ankylosing Spondylitis who discovered your diet at the peak of the worst flare up of my life. After many years of ongoing sciatica, crippling digestive problems, paralysing lumber spine stiffness and a terrifying, rapidly escalating back pain that I was told by a doctor “I will most likely die with”… I have finally managed to bring ALL of my auto-immune symptoms (the worst of my life at the time I started reading ‘Don’t Eat That!’) under control.
I’ve eaten nothing but salmon, shrimp, chicken and beef (mainly beef) for the last 30 days. I managed to actually go back to my 9-5 job – a job I had to quit due to stress and rapidly worsening morning struggles only a month before. I now move around pain-free in the mornings. A month ago I thought I would be crawling out of bed at 6 am in tears, sweating profusely for the rest of my life! The thing that means more to me than anything is I’ve stopped taking opioids for pain management (I’d been reliant on them to function normally for a good few months and it was starting to worry my GF).
I now see such an obvious correlation between what I ate and how arthritic, bloated and constantly fatigued I was. It’s so apparent to me now, I’m so conscious of it that I can’t believe I couldn’t see it before. I’m looking at food in a completely new way and I couldn’t feel better about it. In fact, I’ve never felt healthier or happier in myself. Even my skin is better FFS! I’m literally a better version of me. I cannot thank you enough. The word ‘diet’ really doesn’t do this justice.
THANK YOU!
Jordan
P.S It hasn’t even been a full 30 days! Carbs = poison. “
That’s great; unfortunately, they do cause a reaction for me. I guess in my body, carbs are carbs, even the unprocessed ones and they raise my bg/insulin levels every time :/
Look at the zero carb health website for more information on this.
I have a friend who was getting extreme back problems due to AS. She is an HLA-B27 tissue type. Just over a year ago I did a lot of research to try to find out if there was anything we might do to help relieve her symptoms. I have been intrigued to recently read in various places about the success people are experiencing with a “carnivorous diet” and I believe I know why it helps many people – which I wanted to share.
Many AS sufferers seem to be helped significantly by a reduction in STARCH – a kind of difficult to digest carbohydrate. I don’t think people necessarily need to massively increase their meat intake, but rather simply reduce their intake of starch, which is effectively what people are simultaneously doing when they go on these carniverous diets.
I would encourage any AS sufferers, especially those who know they are HLA-B27, to research this as it is based on actual research – which, criminally, doesn’t yet seem to be widely known? My friend tried it and it made a huge difference for her. In fact she has reduced her painkiller intake by 90% and is now almost pain free. (My friend had not got as far as vertebrate actually fusing, and if you are already past that point the effect may mainly be to reduce further decline, rather than solve it). Please, please Google “Low starch diet for Ankylosing Spondylitis”. If the following link will post here then this is a great starting point for some of the background information.
https://thedailyhealth.co.uk/low-starch-diet-ankylosing-spondylitis-00044/
Good luck and we hope this helps someone.
I just found out last December that I have hla b27 after getting iritis. It just flared up again a few days ago but this time I feel so exhausted I can barely do anything. I’m going to see a rheumatologist soon hopefully, but I’m pretty sure I have AS. Thank you for posting this link! I feel so awful right now and cannot imagine having to feel like this for the rest of my life. Feeling hopeful that I can fight this.
EM – I’m really sorry to hear that. My partner is from an HLA-B27 family and she has been through all of this. The biggest issues for her were Iritis and back pain. Two years ago she was in a very poor state and it was at that point I started to do the research to see if there was a way to help her. After a LOT of digging I found an article similar to the above which talked about Dr Erbinger’s research (the article I posted here is newer and a better item to start from). I’m not a medical man but I have a PhD in engineering and I’m quite good at spotting good and bad science and working out whether things are likely to work. The article I read seemed logical, credible and based on real science so we decided to try the suggestions to help manage the condition. In her case a low starch diet made a huge difference to her back pain. She has been virtually free of back pain now for well over a year. It’s still a little early to tell how her iritis has been affected as her flare ups were previously quite random (maybe 2 – 3 flare ups over 2 – 3 years). However, she hasn’t had a flare up for over a year now and the few episodes of “tingliness” which from dirt, bashes, etc, and which previously typically preceded a flare up, have all subsided rather than become problematic. It’s encouraging but probably not yet statistically meaningful.
But let me try to be clear here. I have no idea of the relevance of this research to other inflamatory conditions. The current general discussion (prompted by the Petersons) seems to talk about the value of a carnivorous diet to various inflamatory conditions, with possible additional benfits to mental health. What I am saying is that there seems to be a scientific basis for why some people who have the SPECIFIC inflamatory condition of ANKYLOSING SPONDYLITIS – AS) are likely to be helped by a LOW STARCH diet. Starch is a specific sub-set of carbs, so it is not necessary to embrace a “carnivorous diet” to see some benefit – what is specifically indicated is the reduction of starch.
The research suggests that people who suffer from AS, and who have an HLA- B27 tissue type (there is a strong correlation between the two) have an immune system which may be triggered by the presence in the body of a pathogen called Klebsiella. Kleb occurs naturally in the gut of most people, but has a high incidence in HLA-B27 people experiencing AS symtoms. Reducing the food source for the Kleb reduces the amount of Kleb and that reduces the incidence of the inflamatory response. IF you are HLA-B27, and IF you are experiencing the classic problems which go with that (mainly AS and iritis, but also some other conditions) then you are LIKELY to be HELPED by a LOW STARCH diet. (A low carb diet, which reduces starch, may achieve the same thing but is unecessary – and may be much harder to achieve and stick to).
So, if you are HLA-B27 (it sounds as if you may be but you may want a formal diagnosis?) then it is probably worth trying a low starch diet. That may be particulary the case if you recognise that your diet has included a lot of high starch food! If you want some practical help, or just want to find out more, then there is a good help group called KickAS – http://www.kickas.org/asfood.shtml
I hope that helps and good luck!
EM – shocking numer of typos in the above – sorry! I also actually realise that you may have the formal HLA-B27 dignosis – I meant to say that you may want the formal diagnosis for the AS! Hang on in there – there is hope.
Thanks Mark, for your reply and all the research you’ve put into this. Yes, I have the HLA B27 marker. I have to wait 3 weeks to see a rheumatologist. It’s possible that I don’t have AS and that the fatigue is unrelated maybe? I feel like I have all the symptoms just not all at the same time. I’m not in a lot of pain but just feel so tired. Today I decided to cut back on starches just to see what would happen, I figured it can’t hurt.
EM – That sounds like a difficult situation as the tiredness may be completely unrelated to your HLA-B27. There are many viral conditions which can cause fatigue for months at a time. Whilst reducing starch may be helpful, the only clear way to know if you are suffering from an inflamatory response to Kleb is to RIGOROUSLY follow a starch ellimination diet, probably for 2 months+. If any of your symptoms are caused by Kleb then you might start noticing some improvements after 2 weeks. Simply reducing starch may be helpful in the longer term (years) but it might not actually tell you anything in the medium term (weeks), and changing diet just before you see a consultant also risks impacting their ability to diagnose your problem. If I were you I don’t think I would change anything for now and wait to see the consultant. Whilst you are waiting read everything you can about AS and maybe participate in the user forums at KickAS? Basically use the next few weeks to work out if a starch ellimination diet might help you, mentally prepare for going down that path, plan how you would do that (meals, ingredients, etc) and if you are going to do it then do it 100%. That may be the hardest thing in the world to even contemplate right now, especially if you are feeling tired, worn down and fed up, but it’s likely the best path to learning the most about your condition in the quickest time. Do you have any friends/family, etc who might help you? People who are positive and maybe good with food who might help you think about meals? When my partner went down this path we tried to find meals that we liked the sound of and which we could eat together. Any diet is only successful to the extent that you are able to follow it(!), so having someone to encourage that may be a big, big help. Best wishes.
Mark– I think you are right about the viral condition. My doctor said basically the same thing.
I finally got all the tests back and nothing indicates that I have AS. I had a ton of x-rays done, from my skull to my hips from several angles–no sign of AS there. They also did blood tests to test for inflammation, celiac disease, thyroid levels, and some other stuff. The good news is that my inflammation levels are really low, and the doc said that the other results showed that I’m in good shape overall.
Now I’m wondering what happened to me in July that caused the iritis to come back. The doc said that some people get symptoms of reactive arthritis when they get a virus of some kind. From what I’ve read online, the only diseases/viruses mentioned that cause RA are STDs and other things that I’ve tested negative for. So it’s still kind of a mystery to me.
I ended up cutting down on my wheat intake (from maybe 2-3 servings a day to one at the most), cut out onions and garlic (which is a part of the FODMAP diet protocol) which has helped with bloating. I also discovered that I cannot tolerate red wine anymore. Exercise has been the best thing so far to help with any aches. Also I feel pretty much back to normal now which is such a relief.
Best of luck to you and your partner, and everyone else struggling w/ autoimmune issues! Wishing you all strength and health!!
Em – That’s fantastic news on two fronts – (i) that you do not have any inflamatory signs and (ii) that you are feeling much better! With luck your HLA-B27 will never get as far as having an extreme expression and you will be able to live normally. But, hopefully, knowing that even if you should start to develop some of the adverse inflamatory reactions that you might be able to manage that by reducing your starch/sugar levels will be of some comfort.
FYI – I am still on the path trying to help my HLA-B27 partner’s bloating/IBS problems. We’ve been down the FODMAP path too! So far we’ve found some benefits from eliminating wheat and substantially reducing onions/garlic (sound familiar?!) but we’ve not yet managed to completely get on top of it. Our two current working theories are either Lectins or Glyphosate. (I was shocked to learn how much the Glyphosate weedkiller is being increasingly linked with gut flora problems and is being suspected as the root cause of the apparent “gluten intolerance” epidemic afflicting the West). The problem is that the more you research all of this stuff the more you begin to think it might not be safe to eat anything! LOL
Thanks for the update. Fingers crossed that your health stays good!
I’m so glad I saw this! Jordan has a similar disorder as what my rheumatologist suspects, and I’m also hit rock bottom recently. This is my first week trying this elimination diet, and I needed the encouragement.
I can confirm that this works for AS. The carnivore diet has changed my life. Knee, heel, hip, upper back pain resolved. Depression went away. Waking up was easy (instead of laying in bed for an hour, groggy). Stopped having cravings for sugar. Within 1 week, I started feeling better, and it has gotten better every day I have one of the problem alleles of HLA-B27, and now I only eat beef, chicken, eggs, bacon, salt, water. .
After I discovered I had the genetic risk factor, I started researching this gene in the various medical journals. Within a couple of days, I collected enough research that I started seeing the big picture. Here is a little brain dump on what I know about the mechanism at play.
HLA-B27 is an immune receptor glycoprotein that recognizes proteins from invading bacteria & viruses. The defect in the gene, not only creates an inflammatory response by itself (related to it’s structural dysfunction), it also leads to certain strains of bacterial (Prevotella, Klebsiella) to over grow. These are both starch & glucose lovers. Additionally, these bacteria secrete neurotransmitters that lead hard to control sugar cravings.
So if you have this condition, and are eating lots of grains and greens, you are getting large doses of things like lectin, gliadin, etc. This will result in increased levels of a chemical called zonulin, which regulates the spacing between the intestinal cells.
In other words, increased intestinal permeability. When the immune antigens meant to control the gut bacteria start leaking into your general circulation, you start getting joint and skin inflammation. In fact, in AS patients, you find antigens for prevotella in the joint synovial fluid.
The end result is that you will be releasing lots of faulty immune signaling chemicals like (IL-17,IL-22, TNF-a) which lead to macrophages flocking to your joints (and other tissues).
Inflammation, in a normal person, is a good thing. 3 things happen: Swelling to encapsulate the injury, digestion (dissolving the diseased tissue, and finally reconstruction (synthesizing new tissue). It runs its course and you are healed. In people with autoimmune issues and inflammatory conditions, this process is frozen at stage 2. This is why it is degenerative.
Long story short, you need to 1) starve the gut bacteria 2) stop eating things that increase gut permeability. The carnivore diet does both.
Nick B – That’s one of the best posts I’ve ever read! Thank you for the research, all the detail and the clear explanation.
I don’t mean to sound negative but I’ve read/listened to lots of information/ideas about explaining/managing AS and much of it has turned out to be wrong/misleading. I suspect that everything you say may be right, but I need a little convincing as it seems almost too good to be true that you’ve managed to tie this all together with a little research in a few weeks! I do not doubt for one minute your conclusion in the final paragraph that reducing the gut permeability and reducing the incidence of certain gut flora is likely to be a big help to AS sufferers and sound advice. This tallies with Dr Erbinger’s research/trials and the many positive experiences of various AS sufferers who go on the carnivore diet.
What I would like to understand is your basis for the details of WHY you think this works – i.e. why you believe that the cause:effect relationships are as you describe, and what your confidence levels are in this explanation? You sound like a medical person, or at least someone who is familiar with reading medical research? Is that right?
The reason I’m asking is that I’m currently trying to untangle a 2nd condition that my AS suffering partner has, and I’m desperate to understand some of the cause:effect relationships here. IF what you are saying is right then it might give us a few more clues. FYI my partner rigorously followed a low starch diet, which was a massive help to her AS condition. Having done so for several months she was able to stop without losing the benefits. She is now eating reasonably normally and we are exploring stopping her pain medication completely! However, she is now experiencing horrendous abdominal bloating (plus some IBS), which we are advised is an Irritation response, rather than an Inflamatory one. We know that wheat is something of a trigger, but it is not the whole explanation. I am currently suspicious that either she is having an adverse reaction to lectins, or possibly to glyphosate (which is apparently now commonly found in commercial wheats, is increasingly understood to have an adverse effect on gut flora and is suspected to be the root cause of the growing “gluten intolerance” epidemic). I am also suspicious that this is somehow related to her AS in that maybe she still has a somewhat leaky gut – either gas permeability, or some other bacteria is leaking into her abdominal area and causing the irritation.
You mentioned Prevotella, which I have not seen mentioned anywhere before in relation to AS. Does it have a strong connection with HLA-B27, or is it simply one of the gut bacteria most likely to flourish in anyone with a high carb diet? Do you know what the body’s reaction would be to this leaking?
Do you believe that being HLA-B27 positive makes you more prone to gut permeability problems, or is is simply that IF you have gut permeability and high Kleb levels and you are HLA-B27 then you are more likely to experience an AS inflamatory response?
Finally, is the information you found available generally on-line or more restricted (to certain professionals).
Many thanks for any thoughts you can provide and thank you for your excellent post!
Mark,
Thanks for the kind words. I’m just a regular guy..but I’ll give you a little of my background, answer the specific questions you asked, then end with a list of the journal references I used to support my hypothesis.
Growing up, I lived with my grandparents, and seeing them in/out of the hospital and on many prescription drugs seemed normal. By the time I was ready for college, I had a very clear understanding of how the modern medical system worked; great for acute injury, horrible for chronic disease. My passion for understanding how our bodies works, started when my grandfather died. He was diagnosed with type II diabetes ( really, it was metabolic syndrome… but that wasn’t a term yet ). This was at a time when the leading edge of research was showing one could reverse the issue with diet. Within a couple years, the doctors decided to remove his kidneys based on poor kidney function. He died from a stroke within a year from side effects of Coumadin (blood thinner for dialysis). This lit a fire inside me to be as educated as possible in matters of health.
In terms of technical knowledge, I’m a nerd and love learning. I have a background in material science, software, and electrical engineering. I love troubleshooting complex systems. In other words, figuring out hard to solve problems is right up my alley. An engineering term is “You can’t control what you don’t measure”…so I keep a health journal and try to do daily urinalysis tests (reagent strips), as well as quarterly blood-work (I lucked out….wife works at a diagnostics lab).
Lastly, my wife recently gave birth to our daughter, and I don’t want to die or become disabled by the time she is 20. (and essentially repeating the pattern that happened with my grandfather and me)… so that really kicked me into “SOLVE THIS!!!” mode.
To answer your specific questions:
> You sound like a medical person, or at least someone who is familiar with reading medical research?
Not a professional, but I took a lot chemistry/biochemistry in college. Additionally, I’m not afraid to dive into a medical textbook.
> You mentioned Prevotella, which I have not seen mentioned anywhere before in relation to AS. Does it have a strong connection with HLA-B27, or is it simply one of the gut bacteria most likely to flourish in anyone with a high carb diet?
See references below. As a side note, I found a study on the gut bacteria of the Inuit in Alaska (when they had an all meat diet ), and the main differences the researchers found, were in the levels of Prevotella in inuit vs traditional western diet. I also included rheumatoid arthritis in my initial searching, to cast a wide net.
> Do you know what the body’s reaction would be to this leaking?
This depends on what is in your intestines at the time, but in general you are going to get an auto-immune/inflammatory response, as well as inflammation in the gut. Leaky gut is bi-directional, so besides stuff leaking out, stuff will be leaking in too.
> Do you believe that being HLA-B27 positive makes you more prone to gut permeability problems
No. You need to have other factors (either exogenous or endogenous) that are causing permeability issues. That being said, there are three different types of immune dysfunction that can manifest from HLA-B27 issues. See link below.
> or is is simply that IF you have gut permeability and high Kleb levels and you are HLA-B27 then you are more likely to experience an AS inflammatory response?
That is my working hypothesis
….
I tried to keep my post as terse as possible. I could ramble on forever. Lastly, I highly recommend this playlist for understanding biochemistry of the immune system. It’s 26 videos, but these are ~15 min each and very well articulated.
https://www.youtube.com/playlist?list=PL9jo2wQj1WCNaYmBK_B81PlrX4OYLwb13
References are in next reply.
The SPAM filter thinks my references list is spam… so I created a txt document to share.
My References: https://markdownshare.com/view/5409f505-b99a-474b-892a-b4e6df71dcb5
I also created a forum thread with the links that is a bit easier to navigate. https://mikhailapeterson.com/forums/topic/autoimmunity-microbiota-carnivore-my-journal-references/
Wow! Thank you so much for the detailed response and especially for the resource list. Genuinely appreciated! FWIW, you and I are not so different. I have a PhD in electronics and my superpower is problem solving! That said, you are way ahead of me in finding your way around the various on-line medical resources and in your familiarity with the terminology!
I’ve started reading various of the items that you linked, and I just wanted to check something. If I understand correctly various of the articles actually state that HLA-B27 sufferers are likely to have inherently higher gut permeabilities, and that this is likely to be worsened if they are taking NSAIDs (which is highly likely given this is (at least in my experience) the most often prescribed pain management regime for AS sufferers? Is that correct or have I missed something?
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