Total remission of my AS on the Carnivore Diet.

Posted by: Mark55

Total remission of my AS on the Carnivore Diet. - 03/19/19 09:51 PM

Hi everyone,

I've posted on this forum occasionally over the years, and always really appreciated the support and information provided here. I've recently had tremendous success with a lifestyle/treatment I've adopted which has given me what feels like complete remission from my AS symptoms. It's been like a miracle for me. I literally feel ten years younger, and I'm active and doing things in a way that I haven't been in as long as I can remember. Although I feel it will be controversial for some I thought I would still like to share my case in the event there's someone else like me out there that could be helped by it. We all know what hell the disease is.

I'll go through my exact symptoms just to give as clear a picture of what was going on with me and the various things I tried to alleviate them.

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I had my first flare of SI joint pain when I was 16, which lasted a couple of weeks and caused me terrible pain at the time. The 2nd flare I ever had was at 19 years old, again lasting a few weeks and causing me to limp in pain and be prescribed anti-inflammatories from my GP. After that I think maybe one more flare up, until in 2008 when I was 23 I had my worst flare ever - I was essentially housebound and couldn't walk for almost a week at the worst point, with awful emiserating pain for 4-5 weeks total and general SI inflammation and pain for 2-3 months total. Since that episode, over the years I have progressively reacted to and become more and more sensitive to heavy exercise or later any stress on my hips / legs. More recently any impacts or serious stress / exercise with any part of my body would cause an SI flare. I also had recurring sore knees which would sometimes stop me sleeping, and I have had 2 bouts of iritis / eye inflammation also. I was quite active going to the gym, rock climbing and running before this, but had to give up all sport and exercise apart from activities done sitting down (like riding a motorcycle). Until recently even two sets of pushups or a hilly walk would cause me a horrible SI flare a few days later. Also getting an upset stomach from traveling in foreign countries caused me flares on 3-4 occasions.

I should add that my Mum, Sister, and Aunt are all diagnosed with AS and my Mum has a completely fused spine, and I am HLA-B27 negative and have had the test twice. Also I am a diagnosed Celiac (this comes from my Dad's side believe it or not), diagnosed with biopsies of my duodenum done by a gastroenterologist and a blood test. I have had multiple MRI scans and X-rays on my SI joints, but they never found any identifiable damage despite over a decade of flare ups many times a year.

In the last 5 years, I generally would have 5-10 flare ups a year, lasting from a week to 6 weeks, always in my SI joints but often with accompanying hip and knee pain also.

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Here are the treatments I tried over the years:

Things I was prescribed by my Rheumatologist: Celebrex, Diclofenac and other prescription anti-inflammatories in different forms. Tramadol and Amitriptyline were tried also. Also had cortisol injections in my SI joints which didn't help.

No immunosuppressants or DMARDs or anything like that. I had to stop anti-inflammatories apart from Celebrex very quickly because I had acid reflux / esophagitis which also runs in my family.

I tried physiotherapy from 3 different physios and a course of acupuncture also.

Treatments I tried myself:

Dozens of different supplements / vitamins
Megadosing fish / krill oil
MSM
Low-dose naltrexone (from an Israeli pharmacy)
CBD
Large amounts of probiotics
Resistant starch supplements for feeding good bacteria
Tumeric

Diets I tried:
Low starch (mostly no starch) for 6 months
Vegan (3 months)
Raw Vegan (3-4 weeks)
A super bacteria rich diet, with homemade sauerkraut and kefir every day, along with raw miso
Keto diet
No dairy
Also tried a 48 hours fast in the middle of a flare

Of every single thing I tried in the last 10 years, none gave me any relief at all, apart from possibly the Tumeric and occasional Celebrex which I felt might have made a tiny difference. By that I mean I feel like either or both of them would relieve my pain maybe 10-15% when I was having a flare, that's it. Aside from that no treatment I ever had or undertook ever felt like it was ever reducing my pain or inflammation or sensitivity to exercise in any way.

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Zero Carb / Carnivore diet

I heard about the carnivore diet I think from the doctor that only eats meat who appeared on the Joe Rogan podcast (Shawn Baker). I also came across Mikhaila Peterson's blog about her beef-only diet treatment for her arthritis and depression. I did a bit of research and joined some facebook groups (be warned some are rather zealous / strict, don't be put off by the people though as the information can be useful).

Since October 2018 I have strictly eaten only meat, with salt for seasoning. I eat 90% beef, with a little bit of pork / chicken and lamb also. Generally I try to get the fattiest meats possible to help meet my caloric needs. I also eat beef liver once a week for the nutrients and I make large batches of beef bone broth and drink a bowl before bed every single night. I take a supplement nightly with magnesium, potassium and calcium (electrolytes seem hard to come by on the diet) and that's it. I have cheated 3-4 times over the last 5-6 months by eating normal meals with carbs when eating out with friends or at Christmas, and it hasn't given me a flare up. I tried to reintroduce raspberries (as they're okay on the fodmap diet which is the one other thing I'd never tried) by eating some every day and felt like the inflammation was returning so I stopped. I plan to slowly try and reintroduce fruits or vegetables one at a time in the future, but at the moment I am enjoying being pain free so much I don't want to risk it.

Within a few days of starting the diet I started feeling really good, and I had to hold myself back from exercising and possibly triggering a flare. After a month I tried some light exercise and it didn't give me a flare, and in the following months I slowly tried heavier and heavier physical activities, until around January 2019 where I returned to working out using heavy weights in the gym which was just unbelievable for me. In terms of my weight, I have always been thin. On the diet my weight has remained stable after initially dropping 1-2 pounds, and my bodyfat has dropped several points, I'm noticeably quite a bit leaner.

Just to give you some idea, I have gone from being unable to run anywhere, go on a long walk or do any activity that involved any impacts or jolts, to being able to do heavy squats and deadlifts in the gym (these were the first exercises I had to give up 10 years ago). I feel unbelievable and it's been totally life changing for me, I can finally use my body again. Other symptoms like knee and hip pain have been eliminated, apart from 1-2 bouts of slight hip soreness for a few hours which I think is related to my weightlifting.

I know this diet flies in the face of all conventional dietary wisdom - literally no fruits or vegetables, no fiber, almost all red meat! I won't advocate for it in detail here or try to explain why it might be okay or why it works, I fully accept it's quite possible that it's bad for your / my long term health. If you search online there are various discussions and possible explanations and data for questions you might have or as to why it might not be so bad. I just wanted to make a post here so that people know it's an option they could try if they are truly desperate like I was.

Trying the diet was a huge leap of faith and still is pending any long term effects on my health. However I have to say I am willing to accept extra risks of other health problems to be able to use my body again, I feel incredible and being pain free is something I had not imagined was possible for me. I hope you don't mind me sharing my this. I'll answer any questions if anyone has any but won't try and advocate or promote it any further.

Thanks for all the help and support over the years, I came to this place many times in great misery and desperation and it was always nice to find people willing to answer my questions.

Thanks very much,
Mark
Posted by: mulehound

Re: Total remission of my AS on the Carnivore Diet. - 03/19/19 10:27 PM

High five! Everyone has to find their way. Way to go.
ETTE
Darrel
Posted by: Bazel

Re: Total remission of my AS on the Carnivore Diet. - 03/20/19 04:51 AM

Hi Mark,

Great to hear you found a diet that works. Before I found this site, I found out myself that a keto diet cured my IBS. I did it for a few weeks, but could not get my energy levels sorted out.

I think what makes the diet work is that it shuts out all alergies possible: lactose, fruit, dairy, eggs, what ever you can think of. There is no meat allergy.

Also, I read that plants require sophisticated gut flora to digest, because they developed 'poisonous' mechanisms in evolution to deter creatures from eating them.

Good luck with the diet. I heard a lot of good things about it. I read that it doesn't have to be bad for you. A lot of people seem to be doing great with the diet.

Good luck!
Posted by: Kellybells

Re: Total remission of my AS on the Carnivore Diet. - 03/24/19 07:22 PM

Right after I found KickAS and learned about the link between starch and inflammatory arthritis, I found a blog by someone with Crohn's who did a year long meat only diet that was very successful. He felt great and was completely symptom free. (There's a link between Crohn's and AS, insofar as HLA B27 is common in both pops and the diseases can overlap)

Bottom line: it's about the lowest starch diet you can do!!! So glad to hear it's working for you.

One thing to watch out for is sensitive or bleeding gums due to low vitamin C. Some meat-only dieters don't have an issue but it happened to me when I went NSD. I added a supplement and it went away.
Posted by: Mark55

Re: Total remission of my AS on the Carnivore Diet. - 03/25/19 09:15 PM

Thanks for the comments everyone.

And thanks for the tip Kelly. I have been eating beef liver which has some vitamin C, but I'll be on the lookout for that!

Cheers,
Mark
Posted by: Kellybells

Re: Total remission of my AS on the Carnivore Diet. - 03/25/19 10:14 PM

Ah yes, that's right....I recall reading about beef liver as a source of vitamin C in that community. Hope you're one of the lucky ones who doesn't need to supplement.

I just remembered that in my early days when I was so frustrated by the starch mistakes I was making that I tried eating just meat for 3 days and was so relieved to just be able to eat without fear!!! It was my best stretch of pain free at that point.

I also found it a million times easier than fasting, which was a miserable experiment that I hated every minute of! (I firmly believe in the virtues of fasting - there's some interesting research showing its benefits, but I'm not in a hurry to try it again lol)

Would love to know more abput what youre eating. Like, what does a typical day look like for you? Do you change it up from day-to-day? What's on your list of foods?
Posted by: Exacta

Re: Total remission of my AS on the Carnivore Diet. - 03/27/19 04:05 PM

I am curious whether you struggle with the social aspect of this diet?

Obviously this is dependent on your particular circumstances.
Posted by: Mark55

Re: Total remission of my AS on the Carnivore Diet. - 03/31/19 06:07 PM

Hi everyone, I'll try and answer your questions!

Basically my diet is currently:

Shallow fried ground beef patties for breakfast and lunch (I cook them each morning) with a lot of salt
A fatty steak (typically ribeye) for dinner
A bowl of beef bone broth (from a big batch made in a pressure cooker every 10 days or so) and a potassium, magnesium and calcium supplement before bed - these really help me sleep.

1-2 times a week I'll eat beef liver. I also eat chicken, pork, duck, and lamb, but just when I fancy it. I'm always on the lookout for specials on meats with a lot of fat, because I need the calories, and it can be difficult eating a large amount of lean protein.

Currently I also allow myself one cheat meal per week where I eat normally. The cheat meals do seem to bring on a bit of inflammation in my hips / SI area, but it's never gotten bad enough to give me a flare. My feeling is that if I had a few of them in a row then I'd get a flare up.

Socially the diet is a bit of a pain, I tend to save my cheat meal for eating out with others. I don't have a family, and friends / girls I date have been very accommodating once they realise how much it's changed my life. For the first 6 weeks I was really craving sugar and normal foods, but now that's almost entirely gone away. My palate has adjusted and now is just happy with the food I eat. I look forward to eating that big fatty steak for dinner each night.

Once I realised I could workout and use my body again without being pain it really changed things. Being pain free after suffering for years made sticking to the diet very easy honestly.

Please feel free to ask any more questions, I'll check back here every so often.

Cheers!
Mark
Posted by: Kellybells

Re: Total remission of my AS on the Carnivore Diet. - 04/02/19 09:47 PM

Mmm...that actually sounds very tasty! I love ribeye steak. And I LOVE fatty cuts. They are the heart of my diet.

I have accidentally found myself in ketosis a few times now, leaves me feeling weird and very wired. Very hard to sleep. Good to know about the supplements.

Sounds like eggs are off the menu....is there a reason for that? Or just personal preference?
Posted by: Mark55

Re: Total remission of my AS on the Carnivore Diet. - 04/10/19 07:15 PM

No real reason, I like eggs and was going to try introducing them soon, but honestly once I started to feel good and was able to exercise and go to the gym again I lost a lot of the strong desires I had to reintroduce more foods.

Recently I have been eating cheat meals maybe twice a week however and unfortunately it's bitten me in the [*bleep*], I'm having a flare up right now, the first one in 6 months frown

I guess I will be very strict with the diet for a month and then have a very occasional cheat after that I think. Oh well, at least I've found something that finally works for me, even if I have to be very strict with it.
Posted by: Dotyisle

Re: Total remission of my AS on the Carnivore Diet. - 04/30/19 10:13 AM

Happy you found a solution.

With eating only meat, how is your regularity? I emphasize veggies, nuts and fruit with my no/very low starch and I have issues if I do not emphasize the them.

Also I have incorporated sauerkraut and kefir for many years that really helped regularity as well.

How are other medical tests (blood pressure, cholesterol etc..). Everything is good?

Best wishes on staying pain free.

Tim
Posted by: JohnIreland

Re: Total remission of my AS on the Carnivore Diet. - 08/27/19 11:10 AM

Thats an amazing story. Thanks for sharing.

It seems like the carnivore diet is the reset button for your gut bacteria.
Id say you would need to take it very slow when reintroducing vegetables.
Posted by: Mark55

Re: Total remission of my AS on the Carnivore Diet. - 10/17/19 11:05 PM

Hi everyone, just thought I'd post an update here.

Tim: Regularity / stools were much reduced (I've read that almost everything in meat / protein / fat is absorbed in the upper GI tract), but seemed fine and normal when it did happen once I settled into the diet. I think it was just a case of almost nothing reaching the bowels.

My rheumatologist sent me for some blood tests when I saw her, I think mostly basic stuff like checking levels of vitamins (not sure about cholesterol) - nothing out of the ordinary showed up.

However I had to stop the diet in June. I had increased my cheating on the diet from having a meal / snack of normal food from once every 1-2 weeks to once or twice a week - I got an SI joint flare up and everything fell apart. In total I had about 3-4 months of complete remission and being able to do things that I had never imagined being able to do again. Also for the first 3 months of the diet I was very hesitant to exercise heavily (my trigger for flare ups) so have no idea if it was working during that stage, it may well have been.

It's hard to explain but it as if the disease was totally gone during that period, and I was able to exercise in a way that previously 100% of the time would've given me a terrible flare up for weeks and often left me bed-ridden. It literally felt like a miracle cure, and this is coming from someone that has never really experienced any relief or improvement from all the various things I tried over the last decade.

Unfortunately even being ultra strict on the diet again after the flare up I wasn't able to get it to work again within 3-5 weeks it seemed. My guess now is that once I had a flare up, it's like going back to square one, and it would take 2-3 months of doing the diet strictly to get back to a state of remission / no flare ups.

Another note: After being on the diet for a few months I started to get occasional dull pain in what felt like my kidneys. This was disconcerting but I kept going with it because the diet gave me such unbelievable results. I resolved to drink more water which seemed to help a bit, but I would still experience it occasionally.

I stopped the diet altogether for 3 months because I was going to travel for a month in the summer and it would have been extremely hard / impossible to maintain it while traveling. Now I'm back and I have restarted the diet - however I am experiencing what feels like kidney pain again, I'm not sure I will be able to keep it up. I will ask my rheumatologist if they can do some sort of kidney tests when I see them in December.

The fact the diet was seemingly able to completely shut off the disease is emboldening, it means it's clearly the result of some mechanism / disease activity that can be controlled or affected in some manner and is not simply a function of something completely unchangeable about my body. However the extreme measures I had to go to with it and the fact it broke down from me having only the very occasional normal bit of food makes me wonder if there are other ways to replicate it without being super strict for months on end.

Any suggestions or leads would be appreciated, thanks for the support as always!
Posted by: pspondylitis

Re: Total remission of my AS on the Carnivore Diet. - 01/01/20 03:29 PM

This is very very interesting. Thank you for sharing. Please keep us updated. This kind of result may give us clues to what is going on. I need to read your post again, but on the face of it, it could be various factors. Is it the high meat load, is it the absence of vegetables, or is it by chance, that you have /went to spontaneous remission for a period. Bit of a shame that the return to diet did not give benefits in the first month, but as you say, maybe once a flare is occurring, one may need to wait for that flare to die naturally. Perhaps,as soon as your flares go, repeat the diet ? Of course, there are risks, mainly of not having fiber and vitamines etc.
Posted by: Mark55

Re: Total remission of my AS on the Carnivore Diet. - 01/07/20 09:05 AM

Hi Pspondylitis,

I think the reason the diet worked is the absence of something that is part of the mechanism / root of the inflammation, rather than being an abundance of meat / protein helping out. I used to eat a fairly high protein diet normally anyway, especially when I used to work out a lot in my early twenties, and this didn't seem to help at all.

If I had to make a guess, I would guess that the inflammation is part of an immune response to a bacteria that eats sugar / starch / glucose, and eating none of those for 3 months is enough to kill off the population of the bacteria. People seem to have some success with the no-starch diet here, the carnivore diet is just a very extreme version of that.

I am now 3 months into the diet again and will start working out / exercising in the next few weeks to see if it causes me flareups. I'll report back here.
Posted by: pspondylitis

Re: Total remission of my AS on the Carnivore Diet. - 02/08/20 01:01 PM

Hi Mark , grateful if you will tell us how your diet is going ? and of course, how it is making you feel. Thank you.
Posted by: Mark55

Re: Total remission of my AS on the Carnivore Diet. - 03/05/20 11:38 AM

Hello, I thought I'd post here again to report back on how the carnivore diet has been going for me the second time around.

This time found I had no pain in my back that felt like kidney pain - When I had this the first time around I think it may actually have been muscle pain. It occurred on days where I was very busy at work and sat down without moving for almost an entire day. I spoke to my rheumatologist about it and she said kidneys don't normally themselves hurt, aside from kidney stones - which I had no symptoms of.

After 3 1/2 months being very very strict with the diet, meaning I ate foods that were not meat only 1-2 times in total, I built up the courage to go to the gym and try exercising again. Normally this would cause me to have a horrible flare-up 100% of the time. However, again, I had absolutely no reaction or inflammation as a result of the exercise, and my body was behaving as if the disease were in complete remission.

Normally I am only able to do the lightest of exercise without having a flare, even walking on flat ground all day can cause me to have a flare-up. Any sport, vigorous exercise (even just upper body exercise, like pull-ups) that involves light impacts, running, jumping, lifting weights, causes me to have a flare. Being strict with the carnivore diet seems to completely stop the mechanism of inflammation for me, and I'm able to exercise freely. On the diet I am able to do heavy squats and deadlifts in the gym, something that would be completely unimaginable for me normally.

I did a total of 4 gym sessions over the course of a month with no pain or flare-ups as a result. As with the first time doing the diet, it felt like a miracle.

After 4 weeks of exercising I introduced eggs into the diet, having 5-6 of them for breakfast each morning, this meant I had to eat less ground beef, which was great. Unfortunately within a week I started to get pain and inflammation coming back in my SI joints. I stopped exercising at this point, out of a fear of having a major flare up. All my worst flare-ups (the ones that have left me housebound) have been when I did exercise whilst already suffering from some noticeable pain / inflammation.

Adding eggs into the diet was an experiment to add some other foods that were high in fat / calories. I had hoped to also add nuts, avocados and leafy greens while keeping the protective effects of the diet. Unfortunately even adding eggs seemed to cause a return of the inflammation, and it seems like I need to be almost totally strict with the diet for it to work; it's all or nothing. This is really disappointing as the diet is very difficult to maintain long term. It is expensive, very monotonous, may result in other health concerns, and I lost a lot of weight because it's so hard to eat enough calories while only eating meat, even fatty meat.

For now I have given up on the diet and returned to eating normally (but gluten free, as I'm a celiac). I know that the diet works for me and is an extreme option I can take if needed. However it feels very difficult to maintain on a permanent basis, and seems to take a few months of being very strict before it starts to work, so it's not something I can use to get out of a series of bad flare-ups that won't seem to go away.

For now I am going to explore other possibilities, and will perhaps have to give up the dream of returning to being physically active and exercising a lot as I did before my AS got bad in my early twenties. Feel free to ask any questions! Peace.
Posted by: Yasir_Rathore

Re: Total remission of my AS on the Carnivore Diet. - 03/10/20 12:27 AM

Hi Mark, I read you posts and I have myself tried the carnivore diet a few times before. Once I made it to 11 days, twice only one day and once a week. This time I am 5 days in and have done a lot of research. I have found ways to make it both tasty and economical. I havent had any change in my AS but I have always thought it was because I didnt do it for long enough.

I want to personally thank you for making this post and continuing to respond to replies.

I also started with eggs but after reading about your experience I have dropped them too. I have basically had a continuous flare up for 8 months now. Before that my AS was pretty much in remission and I dont know what happened last year because I have had continuous pain since, this is what made me desperate enough to try the diet.

I want to ask you about spices. Since I am Indian we dont eat a lot of meat. I am used to many different kinds of spices so I cant eat meat with only salt (makes me gag). Have you tried any spices or any sauces?

Also what is your experience with artificial sweeteners? Pepsi Max and Coke zero have no nutritional value but can help with the sugar cravings. The sugar cravings usually make me drop the diet.
Posted by: ynot

Re: Total remission of my AS on the Carnivore Diet. - 03/10/20 10:40 AM

Originally Posted By Yasir_Rathore

Also what is your experience with artificial sweeteners? Pepsi Max and Coke zero have no nutritional value but can help with the sugar cravings. The sugar cravings usually make me drop the diet.


Do a little research on Glycine and see if it is something that may help your cravings. It is a non-essential amino acid that is good for gut health. It has a naturally sweet taste and is sometimes used as a sugar substitute. Add it into some tea or water to make a sweet drink. There are many benefits to it. As far as the Zero Sodas, the carbonation causes me problems. I am a big fan of PowerAde Zero. It works for me.
Posted by: Mark55

Re: Total remission of my AS on the Carnivore Diet. - 04/04/20 12:20 AM

Hi Yasir, you're welcome.

I used spices sometimes in my food and didn't find it gave me any problems. My uneducated guess is that the diet works because it's ultra strict in avoiding sugar / starch / carbs. Even if some spices are a bit starchy, the quantities consumed are tiny.

I did look into artificial sweeteners, but the more I read the more I kept finding evidence they're probably not good for you. If I was you I'd just try to go cold turkey. I know it's brutal but after a while your body will adjust and the cravings will go away. Keep drinking plenty of water and make sure you try and enjoy most of the food you are eating. Something I felt quite strongly was that I wanted to try the diet in the most hardcore way possible, so that if it failed I wouldn't be full of doubts thinking "maybe it would have worked if only I'd have done x..." I wanted to give it a real test, and if it worked then would try and find a sustainable compromise. Unfortunately I couldn't but I know it's always there as an option if things get really bad.

I didn't feel much better in terms of my AS for the first couple of months, although there was the clearheadedness that comes with being on a strict keto diet. I didn't sleep well until I started having bone broth before bed also. I found I had energy all day long and it wouldn't shut off at night to let me sleep. It took me 3 months to be brave enough to try some exercise, the surprise when I didn't have a flare up was just incredible though.

Right now I'm enjoying normal food again but am back to having near constant inflammation in my SI joints, and I can't exercise at all which is incredibly frustrating. I wish you all the best with it!

Cheers,
Mark