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#519595 - 04/30/19 09:13 AM Re: Total remission of my AS on the Carnivore Diet. [Re: Mark55]
Dotyisle Offline


Registered: 03/07/02
Posts: 9511
Loc: Rosario, Argentina
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
_________________________
AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

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#519869 - 08/27/19 10:10 AM Re: Total remission of my AS on the Carnivore Diet. [Re: Mark55]
JohnIreland Offline
Member

Registered: 02/09/10
Posts: 41
Loc: Ireland
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.
_________________________
Back on Salazopyrin after taking a break for 2 years. Might try going dairy free. Sugar & bread are the main killers for me!

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#519926 - 10/17/19 10:05 PM Re: Total remission of my AS on the Carnivore Diet. [Re: Mark55]
Mark55 Offline
Active_Member

Registered: 05/20/09
Posts: 53
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!

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#519973 - 01/01/20 02:29 PM Re: Total remission of my AS on the Carnivore Diet. [Re: Mark55]
pspondylitis Offline
Journeyman_AS_Kicker

Registered: 03/18/12
Posts: 123
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.
_________________________
Age 52. Psoriatic spondylitis. HLA B27 negative. MRI negative.

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#519982 - 01/07/20 08:05 AM Re: Total remission of my AS on the Carnivore Diet. [Re: pspondylitis]
Mark55 Offline
Active_Member

Registered: 05/20/09
Posts: 53
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.

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#520028 - 02/08/20 12:01 PM Re: Total remission of my AS on the Carnivore Diet. [Re: Mark55]
pspondylitis Offline
Journeyman_AS_Kicker

Registered: 03/18/12
Posts: 123
Hi Mark , grateful if you will tell us how your diet is going ? and of course, how it is making you feel. Thank you.
_________________________
Age 52. Psoriatic spondylitis. HLA B27 negative. MRI negative.

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#520071 - 03/05/20 10:38 AM Re: Total remission of my AS on the Carnivore Diet. [Re: Mark55]
Mark55 Offline
Active_Member

Registered: 05/20/09
Posts: 53
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.


Edited by Mark55 (03/05/20 10:48 AM)

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#520078 - 03/09/20 11:27 PM Re: Total remission of my AS on the Carnivore Diet. [Re: Mark55]
Yasir_Rathore Offline
Lurker

Registered: 03/08/20
Posts: 1
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.


Edited by Yasir_Rathore (03/09/20 11:27 PM)

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#520080 - 03/10/20 09:40 AM Re: Total remission of my AS on the Carnivore Diet. [Re: Yasir_Rathore]
ynot Offline
Member

Registered: 10/01/14
Posts: 28
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.


Edited by ynot (03/10/20 09:48 AM)
Edit Reason: error

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#520101 - 04/03/20 11:20 PM Re: Total remission of my AS on the Carnivore Diet. [Re: Yasir_Rathore]
Mark55 Offline
Active_Member

Registered: 05/20/09
Posts: 53
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



Edited by Mark55 (04/03/20 11:29 PM)

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