UPDATE: Steven has a new video update, to which I have added an updated commentary: Update: Attacking Ankylosing Spondylitis with PHD, November 18, 2014. FURTHER UPDATE, September 2015: Steven has created his own website with more information, www.recoveryfromas.com. Check it out!
Ankylosing spondylitis is a fearsome disease. The Mayo Clinic states:
Ankylosing spondylitis is an inflammatory disease that can cause some of the vertebrae in your spine to fuse together. This fusing makes the spine less flexible and can result in a hunched-forward posture. A severe case of ankylosing spondylitis can make it impossible for you to lift your head high enough to see forward….
Inflammation also can occur in other parts of your body — such as your eyes and bowels.
There is no cure for ankylosing spondylitis, but treatments can decrease your pain and lessen your symptoms.
But the “no cure” part is probably mistaken. Yesterday I received an email from Steven Morgan:
Hey Paul,
Your website and book saved my ass and gave me a chance to recover from Ankylosing Spondylitis, no small feat. I made a video about it here: http://www.youtube.com/watch?v=qvgjJTLrM3M
There was a thread on your site about high cholesterol and possible causes when going Paleo. That thread was HUGE in my recovery…. My cholesterol fell over 200 points in two months!
Anyhow, you’re the best. Thank you!
Cheers,
Steven
Here’s Steven’s story:
In a follow-up email, Steven elaborated:
My health is fantastic lately! I’m still able to push the edges of what I can tolerate, and am enjoying eating butter, some white-rice based gluten-free breads, some vegetables, and occasionally cheddar cheese. Sure beats just the 5 foods I took on my trip! Well, to be honest, after several months of just eating coconut, cacao, pemmican, fish, and white rice, I grew quite fond of it all. It’s amazing how your palate can change.
I gave Steven a few suggestions that I think would help anyone with AS:
- Nutrition:
- Vitamin A (1/4 to 1/3 lb liver per week plus spinach, sweet potatoes, yams, carrots, persimmons)
- Vitamin D from sun and supplements.
- Vitamin C
- Collagen from soups and stews with joints, bones, tendons, and tripe.
- Zinc and iodine.
- Circadian rhythm entrainment
- Intermittent fasting
Steven wants to share experiences with other ankylosing spondylitis sufferers; he asked me to “let folks know I’d be happy to connect; I’m especially interested in connecting with other people who have AS!” You can reach Steven by email at stevenmorganjr@gmail.com.
Conclusion
The Mayo Clinic is correct that medicine offers no cure for ankylosing spondylitis; but diet and lifestyle may do better. AS is probably an infectious condition caused by a pathogenic gut flora. Improved immune function and remodeling of the gut microbiome ought to be able to work a cure.
Steven experimented with a no-starch diet, but had better results on something more PHD like. As we’ve discussed, eating carbs is important for formation of the intestinal mucosal barrier and for proper immune function. A very low-carb diet often delivers short-term relief by starving pathogens, but it doesn’t support a probiotic gut flora and can bring long-term problems from suppressed immunity and impaired gut barrier integrity. That often leads to food sensitivities like those Steven suffered from. It’s better to obtain sufficient dietary carbohydrates to support a healthy gut. White rice is often one of the easier carbs to start with.
Thanks for writing, Steven! Your experiences and video should give hope to AS sufferers everywhere!
via this link:
Congrats on your success, Steven. That’s very enocuraging. As is a connective tissue autoimmune diseases but unlike others, do not have ready antibodies for testing (save HLA B27) except obligatory inflammation via CRP & ESR. So it’s probably not possible to check if autoimmune attacks have really ceased — that would truly be a breakthrough if we can show that you became seronegative for AS-specific antibodies. However, you seem to have attained at least “remission,” a symptom-free state which is, from the viewpoint of the sufferer, indifferent to whether being antibody-free.
It’s interesting that you were able to do this via a safe starch diet. I’ve heard of people reversing (and also becoming seronegative for their specific antibodies) on a gut-rehab such as GAPS and DrBG’s seal the gut protocols. I think the commonality in all this is that you need starches, whether safe or fermentable, that play a huge role in countering leaky gut. Underlying the leaky gut phenomenon, we seem to be learning, is really gut dysbiosis which precedes intestinal permeabilty; research articles are coming down the pike now regarding the involvement of specific bacteria (or lack of them) in autoimmune pathogenesis.
Having said that, I cannot emphasize and agree 100% with Paul’s point that a VLC/ketogenic diet may be palliative in the beginning for autoimmune sufferers; however, in the long run, such a diet will undermine the gut microbiome and result in immune dysregulation. The inflammation reduction you see when undertaking such a diet is deceptive — it’s really a reduction of arterial, not autoimmune, inflammation. Many people are hoodwinked by such a diet and are recommending it, which is a huge mistake. They’ll soon lead to (1) all kinds of food allergies that Steven experienced and (2) cold fingers, which is Raynaud’s, a precursor of full-blown autoimmune issues and a sure sign that your gut flora has been compromised. I can’t think of a single low-carber who did not experience the above two immune dysregulation issue to some degree.
Thanks Paul and Steven in sharing this important insight.
Hey Zorro,
Thank you for these insight. You know, my CRP levels decreased 15-fold in a few months, which as you mention, certainly correlated with a feeling of symptom reduction. But I agree with you that I am not antibody-free; I occasionally experiment with off-limit foods, and my symptoms come right back. I’ll be curious to see if over the years I become more able to handle a variety of starches.
The food intolerances I developed were very difficult to navigate at first. I’m not sure whether parasites played a role in their appearance, or if it was primarily leaky gut, or both. I do know that a serious round of antibiotics killed the parasites, but the intolerances remain. Some of my intolerances are pretty strange: for instance, I can’t eat birds. Turkey, chicken, and duck set off a stomach attack without fail. But I can eat red meat just fine.
There were a lot of efforts I undertook which I failed to mention in the video but nonetheless I’m sure helped. I ate lots of bone broths, took gillions of supplements (including probiotics, DGL, and other supposedly gut-friendly items), slothed down yogurts and fermented foods when I could, and even took bitters for awhile before any meal. I’m skeptical of supplements, so I can’t say for sure what helped and what hurt, and I’m happy to be taking only a few these days.
You’re right as well that safe starches played a huge role in my comeback. Before I read PHD, I was deathly afraid of any starch. For awhile, before I learned the composites of many foods, I was testing all my meals with iodine to see if they turned black. Indeed I was scared! It was such a relief to learn from Paul’s work that white rice and white potatoes might work fine. I’ll never forget the first baked potato I ate; it had been 8 or 9 months of no starches at all. I’m not sure if it was the re-incorporation of starches, the high dose vitamin C, the homeopathic remedies I was taking, or sheer time and luck, but a few months after that potato, my hair stopped falling out and my pain continued on its decline. The lowered cholesterol followed.
Professor Ebringer discusses the role of diet in treating AS by directly reducing the germ that causes AS through dietary starch restriction (“substrate modulation”).
http://www.youtube.com/watch?v=ZFFmqH66ORM
Hi Paul and Shou-Ching, I love your book (I have 2 copies so I can lend it to friends). I eat similar to the way you recommend but have some intolerances and medical issues that mean I minimise rice, tomatoes and goitergenic vegetables. My Anklyosing Spondilitis, rashes, IBS, anxiety, metabolic syndrome are all resolved. My big problem is that I seem to need to stay in ketosis to not put on weight (almost any amount of carbohydrate make me sleepy and gain weight). But I have had adrenal fatigue and do have some ongoing thyroid issues (thyroid nodules and cysts, hyperparathyroidism). Although I am basically fit and well I am still carrying about 15kg too much weight!
Hi Jenny,
The combination of low carb and hyperthyroidism from the nodules, not to mention hyperparathyroidism, will cause adrenal fatigue. So it’s pretty important to overcome the carb intolerance. Try the same keys I mentioned in this post — vitamins A, D, C, circadian rhythm entrainment, intermittent fasting but without calorie or carb restriction, and ideally a fecal transplant but failing that, fermented foods.
Thanks Paul, will do!
Paul,
I read this 2013 paper from Ebringer.
The Link between Ankylosing Spondylitis, Crohn’s Disease, Klebsiella, and Starch Consumption
http://www.hindawi.com/journals/jir/2013/872632/
Now, he advocates I think the same as you, basically glucose, simple starches…not complex…hence rice/carrots etc
I assume sweet potatoes are chosen over others since they are simple starches, less chains!
What about resistive starch, namely potato starch? I read various blogs about how it changes gut bacteria…but for the better? Would you advise?
Hi scott,
Ebringer was a pioneer.
I see recovery as multi-phased. At first, you want to support immunity and mucus production and gut barrier integrity without feeding microbes like Klebsiella; this may require eating something as simple as dextrose powder as a carb source. Many other beneficial diet and lifestyle steps can be implemented in this phase. White rice is the next step up toward real food from dextrose.
Once immunity is supported and you’ve made as much progress as you can without fiber, you need to shift focus to building a healthy gut microbiota. By this time the Klebsiella (or other pathogenic bacteria) populations should be low enough that the addition of fiber will be tolerated and will help build up populations of beneficial bacteria which will further displace the pathogens like Klebsiella. Fiber-containing natural foods like potatoes and vegetables can be built up gradually.
So it is a somewhat experimental and gradual process.
Thanks.
I have made good progress on paleo for years, but have recently started introducing resistive starch (red mill potato starch as a lot of people use!). A few tablespoons, and slowly building up. So far, so good, and I have less constipation. I believe slow and steady.
I think this post from 2009 is a good reminder of why resistive starch might have an advantage.
http://wholehealthsource.blogspot.com.au/2009/12/butyric-acid-ancient-controller-of.html
Now, question did paleo people get starch …watch this
http://www.youtube.com/watch?v=Ps7626gqL48
Ray Mears shows how a tribe gets starch from a sago tree!
Hi Paul
I have several skin problems including dermatitis and psoriasis but am having most difficulty with Lichen Scherosis which I was diagnosed with 5 years ago. Have read your book several times and have just started PhD but have been grain and sugar free for just over a month. just starting most of the supplements you recommend but as doctors sassy they don’t know much about Ls and it cannot be cured I wonder if you have any insights into the cause and if there are any special diet/supplements that would help. Ls is much more prevalent than doctors would lead us to believe so any hope you could offer would probably be of great interest to many people.
Just saw this mention of Ankylosing Spondylitis in a book on Crohn’s http://books.google.com/books?id=zOqbHTkysyAC&lpg=PA37&ots=29sIXT8EwI&dq=Lymphocyte%20proliferation%20response%20to%20baker%E2%80%99s%20yeast%20in%20Crohn%E2%80%99s%20disease.&pg=PA632#v=onepage&q=oral&f=false
Following on the potato starch and carb intolerance questions above, I have read the PHD book but remain confused –I know PHD suggests about 25% or 30% carb. Are vegetables like broccoli included, the green veggies?
Are vegetables like tomatoes and beets, the more sugary vegetables, included in the carb count?
If not–where do they fit in????
Hi preguntona,
We don’t count most vegetables as carb sources, but they are good to eat. Basically, subtract about 50 calories per pound from the carb content of vegetables to account for calories expended in digestion. Many vegetables are about that level. Sweet vegetables like beets are higher and should be counted.
Dear Dr. Jaminet,
Thank you so much for your reply. It intrigues me. And now I’m concerned that I have not been eating PHD even though I say I am—not getting enough carbs. I’ve been on PHD for a year, and still read with envy the success stories. I still struggle with health. So, bear with me and my brain fog and lack of concentration. But if I understand the implications of this post:
Nutrition data says that 16 ounces of broccoli florets (1 lb) is:
128 calories
80 calories from carbs
16 g carbs
But in actuality, what I’m eating/counting is:
78 calories total (128 minus 50)
0 carbs
Is this correct?
Yes, essentially, because the digestive tract will burn the 50 or so, so on a net basis, they’re not available to nourish the body.
Hi Dr. Jaminet
Happy New year to you and your wife. I ate quite a bit of gelatin food lately because I felt sharp pain in my joints (especially finger joints). I read from your writing and as well as Ray Peat that gelatin rich foods are anti-inflammatory and you even recommended beef feet soup as food for cancer patients. But I found research by MIT/Harvard saying glycine, the main amino acid in collagen that is supposedly to inhibit inflammation, is actually very powerful promoter of cancer cell proliferation. If you google glycine and cancer you will find the article. I want to hear your comment on the research results.
Hi Alex,
Well, it’s interesting research, but it is a long way from showing that cancer patients, much less non-cancer patients, shouldn’t eat collagen. The research itself found that slow-growing cancer cells release glycine — but tumors consist of a mix of slow-growing and fast-growing cells. So any individual tumor may have slow-growing cells that release glycine feeding the fast-growing ones that consume it, with no abnormal glycine flux into the tumor. The in vitro experiments are suggestive but that is very different than the in vivo environment.
Even if glycine promotes cancer growth, it might prevent cancer development by maintaining a healthy extracellular matrix.
The research is worth watching but doesn’t really provide dietary guidance yet.
The link of the article about glycine and cancer.
http://www.sciencedaily.com/releases/2012/05/120524143446.htm
Thank you so much. Maybe I haven’t been getting enough carbs to provide the healing environment for my gut, depression, SIBO, constipation, fatigue, muscle wasting, etc. I will have to try including some more. Thank you.
preguntona,
Above all, make sure you are getting enough calories. Very low carb can kill the appetite and be quite deceptive regarding total calorie intake. Combine that with plates of vegetables (lot of volume, few calories) and you have a good possible explanation for those symptoms. Many low carbers had or have them, including me. Getting a proper amount of safe starches makes the difference.
Hi Paul,
Are we there yet with the stool analysis from the usual companies, Metametrix, etc when it comes to definitively concluding what lurks in the gut? I bring this up because I’m sure you are aware of the $99 dollar test from American Gut Project (a non profit crowd sourcing effort) http://humanfoodproject.com/americangut/
which purports to graph out what your stool sample showed bug species wise with percentages and comparisons to other and other groups.
Isn’t this really where we should be going?
Finding this post was an absolute godsend. I am going to try a similar diet to cure my AS but with one exception. I can’t handle the caffeine from cacao beans. If I were to eat red meats, organ meats, fish, white rice, coconut, bone broth and occasional greens (spinach, kale) plus supplementing Vitamin C, D and Iodine, what would I be missing for a nutrient dense, PHD style diet?
Hi Alex,
Egg yolks, collagen-rich animal parts (bones, joints, tendons) cooked in soups and stews, plus magnesium, K2, and zinc would be good additions.
Good luck, let me know how you do!
Hey Alex,
The only thing I would caution against is taking iodine. I had bad experiences supplementing with it, and also with getting it naturally from dulce and other seaweeds.
Supplementing with iodine for autoimmune conditions is somewhat controversial, and I came to believe through my research that it was likely a hazard for my particular condition. I’ve managed to do alright getting very little iodine in the last year, which of course isn’t to say it won’t catch up with me, but it is to warn that if you run into trouble when trying on your diet, I’d look into it.
Cheers,
Steven
I had the opposite issue, I need to supplement with iodine daily as well as try and get some from seaweed etc. But I am coeliac and have absorption issues! Iodine came up as very low on my blood tests (as did magnesium and vitamin D). If I miss my iodine supp for a few days my thyroid swells up, it also happens if I overdo the brassicas!
Paul, thanks for a great website.
I am so sick and tired of this “no cure BS”. I think they should start calling it “no PROFITABLE cure” since they cant sell you anything that is.
Yesterday my father woke up with huge chest pains, he was shiverging and was very cold; went to a very reputable hospital, and had an electrocardiogram, a tomography, and cardiovascular enzyme testing. The tests came out good, nothing wrong was found with his heart. They said it was posibly Osteochondritis, and that the inflammation was causing the chest pressure and that was why he was having these pains.
He then asked what can he do to prevent it, and the reply was “nothing, for now just take oxadysten to reverse inflammation”. Of course I was angry as hell since I know inflammation can be greatly reduced by nutrition. It looks like they dont even want to try to solve the root of your problems, like on purpose they want it to continue so that they can keep patching and patching and charging a charging.
Anyhow, I would like to know what recommendations I can give to him.
Thanks in advance for a great website, i have been following your diet from Monday to Saturday (sunday cheat day) and have had great results.
This isn’t specifically related to ankylosing spondylitis, but Steven mentions at one point that while on a very low carb diet his cholesterol shot up to more than 500 mg/dl. I just had mine checked after several months of very low carb dieting and mine was almost 300 mg/dl. Of course, this is much higher than the conventional wisdom ideal, but just how worrisome this is is not too clear to me. Still, it has me worried — especially considering that my total cholesterol was ~180 mg/dl the last time it was checked. (As an aside, HDL and triglycerides were great, at 73 and 75, respectively. Low carb would seem to be good for that much at least…)
How worried should I be? Should I assume that the reintroduction of “safe” starches would lower the level? Would you recommend any other changes to bring LDL back into “normality?”
The thing is, I actually was following the Perfect Health Diet fairly accurately for a while, including the recommended carb intake. However, while most of the Paleo-type advice out there is reasonably consistent, on the subject of carb intake there is a lot of variation. Certainly the low-carb people make it sound like any carb intake is pretty deadly… So I cut down, and this is the result.
Thanks!
Hi Henry,
Yes, high LDL/cholesterol is a problem, because LDL is an immune sensor and having too much is inflammatory.
Check out the “high LDL on Paleo” posts in our cholesterol category: http://perfecthealthdiet.com/category/biomarkers/hdlldlcholesterol/
Yes, adding carbs will lower LDL and total cholesterol. In addition, tend to minerals like iodine, iron, copper, zinc.
Hi Paul,
I want to tell you that I took your advice, adding more carbs (mostly potatoes and fruit) and the various minerals. In the eight months since I was last tested, my LDL-C dropped from 201 to 105 and my total cholesterol from 289 to 210. (And my HDL-C is 94 and triglycerides are 56.) So I am thrilled, and I wanted to thank you!
One peculiarity of the test results was that my Apo B level came back a tad high, at 84. Given how good the rest of the data are, I was a bit surprised by this. Any ideas what might be causing it and what I might do to lower the number? Any response would be most appreciated.
Hi Henry,
I wouldn’t worry about that. Since your LDL is low the ApoB is probably from chylomicrons which are produced when you eat fat. They are precursors to HDL. Odds are yours are higher than normal because you eat more fat than is common, but that is part of having a high HDL. In the context of other numbers being good, I think the ApoB is normal.
Congratulations on your improvement!
can anyone help or advise?
I have AS and want to eliminate starch
does dextrose contain starch?…I may want to take this asmall a carbohydrate source. ….but worries it contains starch….Please help….or advise
I wonder what a prolonged vLC means…2 months? 6?
❗ 🙄 If you MUST talk about the miracles of diet for AS, do not use the word CURE. Ankylosing Spondylitis is not a curable disease with diet or anything else at this time. Modified diets such as SCD, Paleo, NSD and so on, may help some feel better buy lowering inflammation levels in the body. However, feeling better is not a cure. If you must use a “miracle” type word in touting a particular diet, you would do the AS community a favor by using “remission” instead of cure. Also keep in mind that modifying or changing one’s diet doesn’t work for everyone. For that reason alone, it cannot be called a cure. Just for the record, I am part of the AS community, having lived with this disease for nearly 30 years. I doubt that you can name an treatment that I haven’t researched or tried.
Hi Joy,
I am very sorry to hear that you have been a sufferer for so long.
My husband has just been diagnosed with Spondylitis.
I would be so grateful if you can direct us in the right way for the best support.
I appreciate what you have said above. It can all be very frustrating looking online for advise.
Thank you so much.
Please email me at neelalocke@hotmail.com
Congratulations Steven!
I’m happy to hear about effectiveness of alternatives therapy.
I’m also affected by Ankylosing spondylitis since I was 25. Now I’m 36 I’m following a therapy with biological medicine (Humira).
After some side effects connected with the medicine e with Ankylosing spondylitis (e.g. Uveitis), I’ve been started a diet in July 2013 (after some readings of Loren Cordain, Chirs Kresser, Nora Gedgaudas and others… I’m soon going to read also Perfect Healt Diet!), due to connection between Ankylosing spondylitis and Klebsiella P. this diet is definitely low carbohydrates.
My improvements have been very striking and now I’m totally in remission and I’m evaluating to give up Humira.
Anyway, besides losing too much weight (and I was already skinny!), in the last period, I couldn’t sleep and I was losing my hair (never happened to me!). In the lost month I added also white rice and sweet potatoes in my diet and, fortunately, these problems disappeared (I sleep in a good way and I don’t lose my hair).
Anyway, I’m afraid that these new carbohydrates (in form of starches) I can activate again Klebsiella and its problems connected with Ankylosing spondylitis. Moreover, some authors like Nora Gendgaudas (Primal Body, Primal Mind) speaks about cross-reactivity between gluten and rice!
I wonder, hoping that someone can answer me, if it is possible to find a balance between Paleo Diet and consumption of starches to maintain in remission SA
Thank you in advance for your answer
Everyone, I can’t tell you how comforting it has been to read this post.
Especially to you Paul & Steven, thank you so much for your time and information and hope that you give all of us with a diagnosis of AS.
I was recently diagnosed with AS. As part of the diagnosis I was also diagnosed with leaky gut, HLA B27, klebsiella b. hominis, and pretty much a lack of beneficial bacteria in my gut.
I went on a strict SCD diet for 60 days and my back/hip/neck pain improved dramatically. But as soon as I reintroduced some starch, white rice & potatoes, my pain came back immediately.
I want to build back my healthy gut flora with the safe starches but I react so negatively to them I’m not sure how to do it.
I’m taking probiotics, magnesium glycinate, zinc, vitamin C, and vitamin D3.
Based on your experiences, is there any advice you could offer me at this point?
I know that building up my gut barrier and integrity is what I need to do, but I’m not sure how to do it since so far eating rice and potatoes still makes my pain come back with intensity. Thank you so much. Annie
Hey Annie,
When you say that you reintroduced “some starch, white rice & potatoes,” how did you go about that process?
I am wondering if would be possible to introduce white rice alone (without any other sugars or starches in the diet) as your starch and see if you stay flare-free?
Hi Steven,
So the first time I ate starch it was white rice. I just added it in with my dinner, I’d say I ate 3/4 cup cooked white rice.
The next morning I woke up and immediately felt my stiff hands and knew I was in trouble. Terrible back, hip, neck pain for days.
Then after being starch free for a few more weeks I tried white potatoes. Same thing.
I’m guessing based on your question there’s a right way, and a wrong way, to do the introduction? Annie
What probiotics are you taking? Were you taking any when on SCD? Maybe go off starches again and really load up with probiotics, esp the solid based ones
People seem to be getting good results
With one or even all of these
Prescript Assist
advanced orthomolecular research probiotic 3
Primal defense
The AOR 3 contains clostridium butyrium…it creates butyriate to build up the gut wall
Hi Ellen, thank you so much for that information.
I had always taken probiotics, on and off, but never every day until I started the SCD Diet for that 60 days. I take Prescript Assit, Primal Defense and Culturelle.
I will def look in to AOR. I have not heard of this one and it sounds like it could be very helpful to me.
I’m also trying fermented foods again (just started yesterday). For a while there they were making my stomach balloon very uncomfortably! Had Hawthorne Valley sauerkraut yesterday and it went well.
THANK YOU!!! Annie
Hi Annie,
Try getting carbs from sugars including dextrose powder, honey, fruits, berries, beets, cooked carrots. The dextrose powder can provide a significant fraction of your carbs. You need the carbs to heal the leaky gut, but for the time being you don’t want to feed the bad microbes with starch. You don’t want to get all carbs from fructose-containing sugars because that will promote SIBO.
Support immunity with circadian rhythm entrainment, intermittent fasting, liver and sunshine, and our recommended nutrition.
See if you can get medical treatments for b hominis. Start making fermented vegetables to supply beneficial bacteria. See if there is a possibility to get a fecal transplant.
You have to work your way forward gradually and bootstrap yourself. It is a gradually process. Each step forward allows you to normalize diet a little more, which promotes growth of a good flora. It is ultimately the good flora that has to defeat the bad microbes for you.
Best, Paul
Hello Paul,
So…I’m wondering how to balance this approach you list–because I think this would be the way for me to go for at least a short while–with also having Candida and some level of histamine intolerance. Specifically, do I simply focus on cutting out the starches first and leave the Candida as a later priority–thinking it will be moved out when the ‘good guys’ increase in numbers? As are many, I’m sure, I’m underweight and experience ‘crashes’ if I don’t eat regularly enough or enough. How would one know that this ‘phase’ is ending…and what would a good next phase be? Thank you very much. Peace, Jon
And is there such a thing as a ballpark range for macronutrients for this? I’m using Cron-O-Meter on the paleo setting but can fine-tune. What percentage fat/protein/carb? And how much starch is ‘low’ starch…or is that purely a listen-to-your body thing?
Ankylosing Spondylitis is an inflammatory disease like Rheumatoid Arthritis, IBS, and Diabetes. The best diet to be on when you suffer from any INFLAMMATORY disease like AS is a sugar free diet and NO artificial sweeteners, they are dangerous. Use Truvia and any other stevia product that uses erythritol. (Sugar Alcohol & stevia are the ONLY safe sweeteners) NO maltodextrin & NO Agave Inulin. Hidden sugars are everywhere so you need to read labels. Hidden sugar is found in: Cereals, breakfast bars and drinks, salad dressings, ketchup, sauces (esp barbecue), soups, bread, fruit juices, dried fruits, canned fruits, alcohol, processed rice (Minute or Uncle Ben’s converted rice) & rice milk, and esp. any packaged food that says “LOW-FAT” is full of sugar. READ LABELS!!! The only good fruit is FRESH. Even though honey & and 100% maple syrup are considered healthy source of sugar they are still sugars that cause inflammation. Calories IN does NOT equal calories OUT. 160 calories in almonds or fresh fruit is NOT the same as 160 calories from fruit juice or sodas. Simple sugars go right into the blood stream making your blood sugar spike, while almonds & fresh fruit goes to the digestive system. Since they are slow, going into the blood stream, they do not cause blood sugar to spike suddenly, causing the pancreas to pour lots of insulin into your system. Causing higher production of cholesterol. Cut out ALL your sugar & artificial sweeteners and in a few weeks you will notice a lot less pain. If you want to suffer less pain, then you can do this. Be glad your not like me. I have to be on a low salt diet (almost none) as well.
If you question this reply go look on the internet for Anti-Inflammatory Diet. Ankylosing spondylitis is a form of chronic inflammation of the spine and the sacroiliac joints. Ankylosing spondylitis can also affect the eyes, heart, lungs, and occasionally the kidneys. AS is an autoimmune disease. Until I started researching AS I never thought so many autoimmune diseases there are. https://www.aarda.org/autoimmune-information/list-of-diseases/
Paul, I am so grateful for your response and input. I really mean that from the bottom of my heart.
I have just begun to discover your work, website and book. I heard a Chris Kresser podcast that you were on regarding food rewards the other day and I thought to myself, “that man is a genius”! So truly I am touched by your personal response.
I will implement your suggestions immediately. I can see from reading personal experiences that this is, like you say, a gradual process.
The b hominis is tricky for me to treat (I think?) because in the time between sending in my stool test and getting the results back, I found out I was pregnant. As happy as I am, I’m also extremely worried about the health of our baby considering the situation in my gut. I made the mistake of going on pubmed and reading about intestinal permeability, bacteria/parasites and fetal outcome. My doctor doesn’t want to treat me with antibiotics right now because of the baby. Another health care practitioner suggested Lauracidin in the meantime.
Again. Thank you very much. And to everyone that has insight and experience to share. Health to all, Annie
Suffering from As.plz help me in diet.my nme is vijay now on ayurvrdic mrdicine
The best diet to be on when you suffer from any disease like AS is a sugar free diet and NO artificial sweeteners, they are dangerous. Use Truvia and any other stevia product that uses erythritol. NO maltodextrin & NO Agave Inulin. Hidden sugars are everywhere so you need to read labels. Hidden sugar is found in: Cereals, breakfast bars and drinks, salad dressings, ketchup, sauces (esp barbecue), soups, bread, fruit juices, dried fruits, canned fruits, alcohol, processed rice (Minute or Uncle Ben’s converted rice) & rice milk, and esp. any packaged food that says “LOW-FAT” is full of sugar. READ LABELS!!! The only good fruit is FRESH. Even though honey & and 100% maple syrup are considered healthy source of sugar they are still sugars that cause inflammation. Calories IN does NOT equal calories OUT. 160 calories in almonds or fresh fruit is NOT the same as 160 calories from fruit juice or sodas. Simple sugars go right into the blood stream while almonds & fresh fruit goes to the digestive system. Since they are slow, going into the blood stream, they do not cause blood sugar to spike suddenly, causing the pancreas to pour lots of insulin into your system. Causing higher production of cholesterol. Cut out ALL your sugar & artificial sweeteners and in a few weeks you will notice a lot less pain. If you want to suffer less pain, then you can do this. Be glad your not like me. I have to be on a low salt diet (almost none) as well.
Two things which helps alot against AS are:
– Ghee butter (Butyric acid)
– Fermented cabbage
Wow, very good article. I am on a starch free diet and I think I might suffer from Ankylosing spondylitis. Thanks for writing this article and sharing it.
It has to be diagnosed, it’s not something you can figure out like fibromyalgia. For all AS suffers read about the heart problems that are associated with it. I knew I had a bi-cuspid aortic valve just by chance, and I have to have an echo-cardiogram every year to see if it has progressed to the point that I have to have surgery. You need to go to a cardiologist to make sure you don’t have these things. AS has also been reported to be specifically associated with aortitis, aortic valve diseases, conduction disturbances, cardiomyopathy and ischemic heart disease. The pulmonary manifestations of the disease include fibrosis of the upper lobes, interstitial lung disease, ventilatory impairment due to chest wall restriction, sleep apnea, and spontaneous pneumothorax.
Josh, I have AS. What leads you to believe you have it?
For those with AS that had success on a starch-free diet, how long would you say you were on that diet before you could successfully start reintroducing some starches without ill-effect?
Green tea has enormous benefits against AS also.
I have recently googled green tea and Kelbsiella and found quite a number of links to research papers that indicate the antibacterial properties of tea, especially green tea.
So for us simple minded folk with AS, what would a typical day look like as far as diet goes? Do we need to be as restrictive as Steven for a specific period of time?
When you reintroduce starch to your diets consider an antacid, or acid reducer. Carbs tend to inflame acid reflux in healthy people too.
I think you need to be very careful EVER taking an antacid. Most people suffer from too low stomach acid, not too high. So unless you have absolutely CONFIRMED you have high stomach acid I would be extremely hesitant to take anything that lowers stomach acid.
If simply adding the PHD level of carbs suddenly gives you acid reflux that probably means you already had an imbalance of bacteria. An acid reducer will not solve that problem. i agree with Annie
what about Grapefruit Seed Extract or perhaps some other herbal type antibiotics to fight the Klebsiella? GSE is pretty cheap on Amazon.
Sounds good! Thanks, never heard of it. Bu it kills everything and Klebsiella only on a high dose.
ANTI-BACTERIAL ACTIVITY – Grapefruit seed extract (GSE) demonstrates broad anti-bacterial effects against a variety of pathogens including Streptococcus spp, Staphylococcus Aureus, Enterococcus spp. An in vitro study of the effectiveness of GSE against 194 bacterial and 93 fungal strains observed that at 0.5% concentration, the growth of all microorganisms except for Klebsiella and Pseudomonas was inhibited, which were inhibited at higher concentration (1-2%).
I wanted to tell people with AS to eat an anti-inflammatory diet. The biggest inflammatory food is SUGAR and sugar is in processed foods. Beside sugar are all the artificial sweeteners like Aspartame, Sucralose, and Saccharine. The only thing that people with AS should eat is stevia. Now, Stevia is added to substances like Maltodextrin, and Agave Inulin (bad very bad) Agave is worse that HFCS and HFCS is another sweeteners that is exceptionally bad for you. The only one that is perfectly fine is Truvia. It is added to the sugar alcohol erythritol that is considered the best sugar alcohol since it has 0 calories and 0 glycemic level. Yes, that means you cannot drink sodas anymore. Oatmeal is the only cereal I eat, but you can add all kinds of fruit or cinnamon and also vanilla. All foods that say low fat are full of sugar. For all of you peanut lovers or peanut butter start buying almond butter, but only the kind you HAVE to stir. Peanuts are legumes and almonds are real nuts. Legumes are not really bad if you eat meat, but if you vegan or vegetarian they will affect you. Either way you need to buy the STIR kinds. DO NOT buy the NO STIR kind. They have all kinds of bad oils and sugar. All kinds of cereals will have lots of sugar as well as INSTANT oatmeal. You have to stop Minute Rice and Uncle Ben’s Converted rice. BROWN RICE & WILD RICE that you have to cook are OK. All I can say is READ LABELS!!!! Sugar is in almost every processed foods. Red meat eaters reduce the amount of red meat & increase chicken,(organic groceries as much as possible. FARMERS ADD A BETA-BLOCKER TO PIGS & TURKEY Esp, BUT ALSO MANY ADD IT TO THEIR CATTLE AS WELL. When cattle and swine are given beta agonists, they partition the extra energy into muscle instead of fat. Making the animals heavier and so they make more money on the animals. Farmers don’t have to list the beta-antagonist only artificial hormones and anti-biotics. The law will not allow hormones to be fed to poultry but they can feed them beta-antagonist. The beta agonists used in livestock production are ractopamine (pigs) and zilpaterol hydro-chloride for cattle. These are very inflammatory. I have never seen any organic pork and no longer eat it. Turkeys are the same. Organic beef and chicken will not have it in their meat. Since I have cut out processed foods my grocery bill has gone down more than enough to buy organic produce & meat & milk. Amazing how expensive processed food cost. Conflicting info about dairy, but I have reduced mine. Whole organic is suppose to be better than organic skim milk and whole organic will help stop your cravings for carbs. Of course alcohol is a big no,no since it turns into sugar. Calories in- calories out has been discovered to be wrong. Calories from, lets say almonds and calories from sodas are not equal. They are not processed by the body the same, just like fruits are good, but NO fruit juices. I had to stop all of those. Watch the movie FED-UP. I rented it from NETFLIX. Talks all about this. This is the way you have to eat the rest of you life. It took close to 3 to 4 weeks before I really noticed it. A Paleo diet is not good if you are trying to stop your inflammation. It allows sugars. There are many foods that help stop inflammation. Make sure you add magnesium with supplements. There are good kinds of magnesium and others that ate bad. Just type in “the best and worst forms of magnesium”. Look online for anti-inflammatory foods and you will get quite a few. This post is already too long. Don’t judge for at least 3 to 4 weeks. This diet goes for people with all inflammatory diseases. Rheumatoid arthritis, IBS, type 2 diabetes,AS and many more. Hope this helps.
Also I forgot to mention Butter – healthier than margarine. Watch out for Monsanto butters (animals fed GMO feed). They are really bad.
You should eat organic, Grass-fed, ghee, one brand that’s great is Organic Valley. Oils that are the worst for you to eat are corn, canola, soybean,
and the Best are Sesame seed oil,virgin olive oil, walnut oil, and I believe coconut oil. Read http://www.bodyandsoul.com.au/nutrition/nutrition+tips/10+facts+about+coconut+oil,18271
I have not been able to build a tolerance for any starchy foods. And every time I try I am in pain about 18 hours later. The bloating first. Then the constipation then the back or sacroiliac joints. And last but longest to recover from is the chronic uveitis flare. I have never tried white rice. Maybe I will try a half a teaspoon and start with that. As far as effectiveness eating almost no starch (see my food list down below)I have weaned myself off all my meds (see some of my previous meds down below). I am active and energetic. I handle 60 work weeks (physical on the feet and lifting heavy stuff type job), manage my home hang with my adult teens and teen kids and hubby. I was disabled before the no starch diet (or very low starch). I was in pain all the time and meds only took the edge off. I do believe I am starting to have worse digestive problems so that is why I will try the rice. I have been on my diet on and off for 7 years and sick only when off. It’s been 2 years since I last fell off my diet wagon.
food list: Spinach tons of spinach every day, cauliflower, broccoli, other leafy vegetables except cabbage (causes flares too ❓ ) frozen fruit all kinds except bananas and apples, fresh fruit all kinds especially citrus but no bananas or apples or pears, eggs lots of eggs, poultry, fish and shell fish, beef, bison, pork, goat dairy and some cow dairy, almonds without skins in all forms, lots of seeds (not sunflower) and left whole as much as possible, all sugars like white sugar, maple syrup, agave nectar, honey, no 0 calorie substitutes, prepared foods like paleo wraps and preserves and ice cream providing the ingredients are all stuff I buy and eat on my own. I bake, cook and blend these foods. I weigh 115 lbs. I am 5’2. and 40.
former meds: methotrexate pills, methotrexate injections, arthotec, Celebrex, Alzulfadine, Plaquanil, advil, rifampin, doxycycline, pred forte (I still use), and some others I don’t remember. I was on some of these the same time and others different times. I will do some more research on the white rice. Hope I don’t flare and if I do I hope it doesn’t last long or do any more permanent damage.
I should have mentioned I that I test low for sugar sometimes too low. If my blood pressure is 90/60 it is a good day. I have been so low the doc wonders why I am not passed out. low blood pressure runs in my family. My inflammations levels on the diet are almost non existent off the charts when off the wagon. I tend to test low on everything. Don’t know why that is. Tried to cut the added sugar out my life and was dizzy and light headed from day 2 to 15 when I replaced it for fear of driving with those symptoms getting more often and longer. I started taking magnesium and that has helped my digestive problems a little. Most supplements cause flaring for me even when they claim to be free of starch. So I don’t really take them. Tried probiotics for a year with no noticeable results I fell off and stop buying them. And by the way I have had rice but only when I was off my diet and eating all kinds of starched like oatmeal and cereals and breads. I have tried potato on my diet and flared. Also tried sweet potato. very small portions had me in pain for days up to two weeks.
Magnesium is a BIG deal. Most Americans are deficient in Magnesium & Zinc.
Fact is the calcium you take, cannot be absorbed by the body without magnesium. When you are in danger of osteoporosis you should be taking Calcium, Magnesium, Vitamin D3 AND vitamin K2, NOT K1 However there are good and bad forms of magnesium.
The BEST forms are:
Magnesium citrate — Magnesium citrate is the most popular magnesium supplement, probably because it is inexpensive and easily absorbed. Since citric acid is a mild laxative, magnesium citrate functions as a constipation aid as well as a magnesium source. It is a great choice for individuals with rectal or colon problems but is unsuitable for those with loose bowel movements.
Magnesium taurate — Magnesium taurate is the best choice of magnesium supplement for people with cardiovascular issues, since it is known to prevent arrhythmias and guard the heart from damage caused by heart attacks. Magnesium taurate is easily absorbed (magnesium and taurine stabilize cell membranes together), and it contains no laxative properties.
Magnesium malate — Magnesium malate is a fantastic choice for people suffering from fatigue, since malic acid — a natural fruit acid present in most cells in the body — is a vital component of enzymes that play a key role in ATP synthesis and energy production. Since the ionic bonds of magnesium and malic acid are easily broken, magnesium malate is also highly soluble. Best form for people with Fibromyalgia.
Magnesium glycinate — Magnesium glycinate (magnesium bound with glycine, a non-essential amino acid) is one of the most bioavailable and absorbable forms of magnesium, and also the least likely to induce diarrhea. It is the safest option for correcting a long-term deficiency.
Magnesium chloride — Though magnesium chloride only contains around 12 percent elemental magnesium, it has an impressive absorption rate and is the best form of magnesium to take for detoxing the cells and tissues. Moreover, chloride (not to be confused with chlorine, the toxic gas) aids kidney function and can boost a sluggish metabolism.
Magnesium carbonate — Magnesium carbonate is another popular, bioavailable form of magnesium that actually turns into magnesium chloride when it mixes with the hydrochloric acid in our stomachs. It is a good choice for people suffering from indigestion and acid reflux, since it contains antacid properties.
Magnesium-L-threonate (MgT) that could significantly increase magnesium in the brain via dietary supplementation.”
The WORST forms of magnesium
Magnesium oxide — Magnesium oxide is the most common form of magnesium sold in pharmacies, but it is non-chelated and possesses a poor absorption rate compared to those listed above.
Magnesium sulfate — Magnesium sulfate, also called Epsom salt, is a fantastic constipation aid but an unsafe source of dietary magnesium, since overdosing on it is easy.
Magnesium glutamate and aspartate — Avoid these two forms of magnesium completely. Glutamic acid and aspartic acid are components of the dangerous artificial sweetener aspartame, and both of them become neurotoxic when unbound to other amino acids.
Magnesium stearate – inhibits the nutrient absorption rate of dietary supplements. Another study published in Immunology found that stearic acid could suppress the activity of our natural killer cells, T cells, which could lead “to a loss of membrane potential and ultimately cell function and viability.”
Hello, this is a general comment, I want to give some advise, sometimes we need to go back to basic. Many AS patients have low vitamins in their system. I rediscovered Vitamin C two weeks ago, it is awesome, Vitamin C is not only here to prevent scurvy, receeding gums and joint pains and inflammation are all part OF scrurvy. Scurvy is often subclinical, but leaves a mess.
I still have inflammation in my lower back, but my hips are painfree, without medication.
Vitamin C is important for collagen formation, vital for seven enzymes building, and is a fantastic electron donor that neutralises every known toxin and waist products.
A fact is you need at least 2 grams per day for the fun to start. Sometimes this gives diarrhea, but that is rare. A sick or stressed person (AS qualifies) can easily take 10 grams per day, and when this does not give problems it means your body needs it. Goats make Vitamin C themselves and can produce up to 100!! grams per day when stressed or sick, so you can imagine the RDA of 60 mgrams is a bit of an insult. Please try it. Gum disease causes problems in the body, tooth decay is a sign that out bodies are not in balance. AS sufferers benefit greatly with large amounts of vitamin C.
I am currently on 3x 5 grams per day, and I never get problems from it. I feel great, and it give a good feeling of wellbeing!
Thanks.
Greetings from the Netherlands
Large ammounts of Vitamin C also reduce allergies and histamine levels. Also it restores the colon, and prevents large proteins or bacteria overgrowth, like klebsiella, it may deal with the root cause of AS!! I can allready eat whitebread and white rice. Please try it. Guide with fishoil and large ammounts of cooked and raw vegetables to clean the body and nourish the colon. Cooked vegetables are feeding good bacteria and these bacteria produce certain kinds of aminoacids that nourish the colonwall. Also read about Weston Price, a dentist, but with strong relevance for AS. Eat bonebroth stews and soups, from fish and beef, and chicken, it is delicious and very nutrient dense.
ELDON december 18, 2015 at 8:22
Steve… have you ever tried to experiment ..using carrots and yellow apples mixed in a juicer in order to build your immune system ? i find that it’s not an apple a day that keeps the doctor away but rather the lack of carotene that rids the body of ‘every’ form of toxic waste …it sure works for me …please get back to me…thanks
hi i am taking carrot juice everyday early morning. do you think i should add one apple to carrot juice to get better result in AS?.
Hi
I have been an AS suffer for most of my twenties and I am now in my mid fifties.
Those early days when I was mis diagnosed I will not dwell into it but I just want to say that there is hope for people like us. Although my spine is fused and my neck partially, I am glad that I still walk straight up without much stooping. Also I want to say that my diseases has gone into remission many years back, more than 15 years ago and I now longer feel pain any more on my lower back.
I am not particular on any food I eat, but I have taken jogging as my main exercise which I do almost every day of the week for 30mins. The perspiration when I exercise does help to flush out the toxin that our body accumulates and I attribute this to be very effective way of controlling our illness.
As for intermittent fasting I have just started last week and I intend to give it a try to see if my AS would get better. thank you
I wish you would reconsider jogging and start fast walking. Your spine could do what mine has. It has started to collapse and I have now lost THREE inches to DDD.
I can’t see where fasting could help alleviate the pain for an auto-immune disease like AS or RA. Stop eating sugar – NO sugar, NO honey, NO maple syrup, NO agave nectar or inulin, NO HFCS, NOTHING ending in “ose” like sucrose or maltose. NO artificial sweeteners, just pure organic STEVIA or STEVIA BLEND using erythritol a (sugar alcohol), NO others. That means absolutely no sodas. NO alcohol that turns right into sugar. READ LABELS!!!
There are very few processed & packaged foods that don’t have sugar so it means using fresh & maybe some frozen vegetables, only fresh fruit, NO dried or can fruits, & NO fruit juices and even some vegetable juices that add fruit juices.
And also, do people here have experience with the water cure? Many foods and beverages like coffee and fruit juice dehydrate the body, and we generally don’t drink enough water. This week I took 3 liters per day and illiminate coffee and I took a pinch of Celtic Sea Salt for balance and resupply. My hips and back are 80% better, but I did not have a big flare to begin with, now I only have some pain in my left shoulder, but that is from the carbohydrates yesterday I believe.
There are many videos and info online, dr Batman.
Thanks. Please try this, some things are too silly to be true, but at least try it.
Also try to take note what you have done when your shoulder starts to hurt. I realize that I am leaning on something and that starts making it hurt, However I was having pain around my heart or left breast area and it was because I was leaning on my RIGHT arm, against the sofa.
The big thing is to
STOP eating sugar, artificial sweeteners, & at least reduce wheat gluten & casein. I use goat’s milk that has very low casein or if you like almond milk that is OK and soy milk ONLY if it is organic. The only sweetener to use is organic stevia or a stevia blend like Pyure or Truvia.
It’s a combination of erythritol and stevia and this is the only blend to use. The other blends are bad in other ways. I like Pyure because it comes in bulk and you can fill up your sugar bowl with it, instead of opening a dozen packets for your oatmeal. You can eat fresh fruit but NO dried or canned fruit. Hidden sugar is in cereals, cereal bars and drinks, salad dressings, NO STIR peanut & almond butter, any sauces (pasta,tomato, alfredo, barbecue, ketchup) vitamin waters, alcohol
NO SODAS – they either have sugar, HFCS, or artificial sweeteners,
Fact is there is very little packaged & processed foods that DON’T have added sugar.
The sugar in fresh fruit and natural sugar in cow goat, almond or soy milk is OK since both of those go to the digestive system where the sugars will slowly enter the blood stream and will not cause a sugar spike.
NO sugar means NO sugar, NO honey, NO agave nectar,NO HFCS, anything ending in “ose” like sucrose or maltose etc.
Hi Paul
I have AS and started new diet to reduce starch intake.
For 1 week I have been eating No grains except white rice but in smaller quantities and alternating days not eating it.
No starchy veges
Less sugary fruits
No lactose
No beans legumes
Leafy green veges
No processed stuff…sugars etc
Before stating I had bad pain and hate taking drugs. I slogged it out this week but have had an increase in lower back pain even with statch reduction.
I feel better mentally and less lethargic but the pain today was intense. Could my already ramped up immune system now having less bad microbes in gut be focusing on my joints?
Can you help please?
Cheers Manna
Hi Paul,
Thanks for the time you’ve put in on AS. I’ve had the disease since I was 13 (45 now) and have tried everything going. I followed the NSD years ago with some success and am now considering trying out the protocol you recommend. I’m currently on Humira (an anti-tnf therapeutic), which has basically made me pain-free for the past five years. The downside has been a 25-lb weight gain that I can attribute directly to Humira, since all other main variables (diet, exercise, sleep) have remained constant. I’ve been considering taking a break from Humira to try and get my metabolism back in order.
I understand you can’t give out medical advice, but (theoretically speaking) do you think it makes more sense to stop taking Humira before trying the AS protocol you recommend? Is there (again, theoretically) anything about anti-tnf therapy that would interfere with the micro-biome restoration you’re suggesting?
BONUS QUESTION: no health care practitioner I have ever met has been able to make any kind of link between anti-tnf therapy and increased adiposity, although the interwebs are full of anecdotal (and some scientific) evidence that a certain percentage of the population gains weight rapidly and dramatically within the first two years of therapy. My experience is, not only weight gain, but a complete inability to lose any of it despite diet and exercise. Can you see a link?
Thanks,
Chris