I am now in remission

[Aituk7]

Hi, I'm new to the board but I felt obliged to join and post what worked for me as my chrons is now in remission and I am on the road to recovery.

This disease is brutally awful and if this can help just one more person then this post will be completely worth it.

I'll cut straight to the point, I healed chrons without medication, I used a strict paleolithic-ketogenic diet that was administered and monitored by PaleoMedicina, a treatment clinic based in Hungary. I didn't have to visit Hungary or anything, I simply did everything over zoom calls on the internet. I monitored my ketones, blood sugar and blood pressure using a variety of devices and got blood tests done by my local doctor once a month before sending the results over to them for monitoring.

They adjusted the diet slightly sometimes dependent on my progress and bloodwork etc. but in short the diet is incredibly restrictive for about 1 year. You eat nothing but high quality (100% grass fed organically sourced) meat from 4 legged animals and organ meats. At the moment I live off beef steak and beef liver and that's it.

I know it sounds crazy but you can live off that, I've been doing it for the past 7 months. For the past month I've been in complete remission, my stools are back to normal, my symptoms are next to nothing. I still get a little bit of gas but I'm sure that will go in time. I can't believe how doing this with no awful side effects from the medication has worked so well.

After approx. 12 months I will begin introducing foods back into my diet with their help and this time next year I will have a varied and sustainable diet to live from. I've spoken to some of their other patients who are 3 years into this and they are now in a position where they just avoid certain foods but other than that are completely fine to do as they please.

They have a bunch of literature on their website about how this treatment is clinically proven, I did a lot of research before starting it, but I can confirm it works. I can't believe it but it really does.

If you have any questions please feel free to ask, I will respond.

I hope this helps somebody else.

https://www.paleomedicina.com/en/cr...y-treated-with-the-paleolithic-ketogenic-diet

 

[Jo-mom]

It's great that you are feeling better. Are you still having blood tests and other diagnositics done to check your inflammatory markers? For me, this doesn't sound like a very balanced diet, but then again, I don't eat any meat at all, so I would never recommend this to anyone, but everyone is different in how they respond to diet. Just wondering if you are still making sure that you are indeed in remission with the proper testing.

 

[Aituk7]

Hi, yes I still get blood tests done monthly. Whilst I am in remission my treatment plan isn't over. At 6 months my bloods were perfect then the healing process begins. While I have next to no symptoms if I were to eat something else that I am not used to say broccoli or eggs I would likely get a reaction and a chrons attack would ensue. I need to stay like this for approx. 5 more months before I introduce other foods, each time a new food group is introduced I get more blood tests done to check for inflammatory markers and this is how I build my new diet for the future.

As for the diet being balanced, it sounds ridiculous at first I know! but it is 100% nutritionally sound and absolutely stable to live on. You can live on the diet I am doing right now (strictly beef) for the rest of your life no problem and as I can see from my own bloodwork it is very good for the body. The key thing is getting the portions of fat to protein ratio and the amount of organ meat correct. This ensures you're getting all of the nutrients you need and the energy from ketones. It took me a couple of months to get this exactly right and you do it with the aid of blood tests, blood pressure checks and a ketones/glucose meter.

The reason I posted this was because I've searched far and wide online but am yet to find anyone for whom this diet and treatment has not worked. You can read the literature on their website but they have very good data to back this up and basically, not just chrons but any autoimmune condition can be made well by this diet it would seem. Essentially it's a reset of your entire gut and then building it back up again afterwards.

I decided to do this diet when the steroids didn't work and my next step was to go on immunosuppressants. Which unfortunately are brutal, have lots of side effects and usually you end up on the operating table at some stage. I didn't want to go that route and so I tried this.

 

[my little penguin]

Which unfortunately are brutal, have lots of side effects and usually you end up on the operating table at some stage. I didn't want to go that route and so I tried this.

There is a difference between potential side effects and side effects
A lot of meds have potential side effects
Meaning they could happen or they may not
Eating nothing but beef is not nutritionally complete
Are you taking vitamins or other supplements to keep your nutrition up ?

ending up with surgery is also not a given
It used to be but now with todays meds is not something most crohns patients have to deal with

my kiddo was dx at age 7
Now 19 so 12 years of disease
No ulcers
No strictures
No scar tissue
His colon looking pink and healthy
Thanks to 11 years of biologics
No side effects
No extra illnesses
Just a normal college kid

hope your diet works
But make sure a Gi is following you doing regular nutritional studies ,imaging , inflammatory bloodwork and scopes since crohns damage inside can be there without outside signs

 

[Aituk7]

There is a difference between potential side effects and side effects
A lot of meds have potential side effects
Meaning they could happen or they may not
Eating nothing but beef is not nutritionally complete
Are you taking vitamins or other supplements to keep your nutrition up ?

ending up with surgery is also not a given
It used to be but now with todays meds is not something most crohns patients have to deal with

my kiddo was dx at age 7
Now 19 so 12 years of disease
No ulcers
No strictures
No scar tissue
His colon looking pink and healthy
Thanks to 11 years of biologics
No side effects
No extra illnesses
Just a normal college kid

hope your diet works
But make sure a Gi is following you doing regular nutritional studies ,imaging , inflammatory bloodwork and scopes since crohns damage inside can be there without outside signs

The chance of experiencing unwanted side effects of immunosuppressants is nearly 100% according to NHS UK literature, this is why the treatment must be tailored over time usually taking between 4 months and 2 years to do so. Even when this has happened the chance of experiencing unwanted side effects from immunosuppressants is still around the 50% mark and even then the worst thing about immunosuppressants is your immune system is now compromised (which is unwanted but unfortunately inevitable).
If you are on immunosuppressants you have around a 60% chance of requiring some form of operation during your lifetime according to NHS UK literature.
They make all of this clear in the documentation you have to read before agreeing to take them.


As for the diet/treatment, with all due respect what you have said is not true. Eating beef consisting of muscle meat and organ meat is absolutely nutritionally sound. Beef in fact is the only single food source known on the planet in which you can do this. No I don't take any nutritional supplements as they are not required. The diet is 100% nutritionally sound.

I am still on the treatment plan and will be on this diet for another 5 months (12 months total) before other foods are introduced. I would never advise to do this diet by yourself, I do it through paleomedicina, a clinic that specialises in tailoring this diet to each specific individual to ensure they get all of the required nourishment while their body heals from autoimmune diseases and in some cases cancers.

The tailoring of the diet is specifically around what meats can be eaten, the ratio of fat to protein and the amount and type of organ meat required.
Doing this ensures you get all the nutrients you need

I also get monthly blood tests to check for progress and will be getting another MRI at the 12 month point to see how much inflammation has reduced by.

It might seem unbelievable, it might seem counter-intuitive to what you think you know about nutrition, I myself found it impossible to believe when I first heard about it.... but it works.

 

[Scipio]

The problem with the kinds of fad diets that are extremely restrictive and rely on eating only one food to the exclusion of all others is that they are not sustainable over the long run (for years). It doesn't matter whether they are 100% meat, 100% fruit, 100% brown rice, or 100% Milky Way candy bars. Eventually you get to the point where you can't bear to eat one more meal of those things and you go off the diet. Happens every time.

 

[Aituk7]

The problem with the kinds of fad diets that are extremely restrictive and rely on eating only one food to the exclusion of all others is that they are not sustainable over the long run (for years). It doesn't matter whether they are 100% meat, 100% fruit, 100% brown rice, or 100% Milky Way candy bars. Eventually you get to the point where you can't bear to eat one more meal of those things and you go off the diet. Happens every time.

This is not a fad diet. It's a clinically tested and proven diet for the treatment of auto-immune conditions and certain cancers, all of which can be read on the paleo medicina website or you can view any number of the talks Dr Zsofia Clemens has given at conferences regarding this via youtube.

It works by resetting the relationship between your gut and immune system, allowing time for your gut to heal before introducing other foods into your diet allowing you to eat more than just meat.

For some patients who cannot tolerate other foods, they have ended up sticking with a 100% meat based diet. The reason they don't stray from this is because it a) it works and b) the alternative is suffering from chrons disease.

If you break a diet that keeps you healthy for something that doesn't, then the disease can't be that bad in my opinion.

The reason I did this is because the only option I had left were immunosuppressants, which are in short, brutal.

 

[Jo-mom]

Ensure you drink a good amount of water because a full beef diet will be hard on your kidneys. I agree with @Scipio though. Good luck.

 

[Aituk7]

Ensure you drink a good amount of water because a full beef diet will be hard on your kidneys. I agree with @Scipio though. Good luck.

You have to change the amount of water you drink dependent on what stage in the diet you are at.

It's lots of water at first until your uric acid levels stabilize and then later as you get better it's less and less to increase the levels of acidity. More acidity = faster healing apparently. I don't know the science behind that, just what the doctors say

Why do you agree with @Scipio ? What he said isn't true. With all due respect I'd do some research before dismissing it, Paleomedicina are yet to have a patient this hasn't worked for. Just because you have preconceived notions of what is right and wrong nutritionally, doesn't mean you're correct.

I used to believe things about nutrition that were false, surely you can at least entertain the notion that you may also be wrong?

 

[Jo-mom]

Yes it is true that I may be wrong, but it can also be true that you can be wrong. I agree that balance is the key to nutritiion. I do not eat meat at all but still make sure that the food I eat has all the nutrition necessary. If it works for you, great, but you will not change my mind. Good luck.

 

[asadmom]

Didn't Peterson and his daughter cure their autoimmune problems this way? Mikhaila's illness is well know. No medicine could help her. She eventually went on a very restrictive diet and got her life back.

 

[Aituk7]

Yes it is true that I may be wrong, but it can also be true that you can be wrong. I agree that balance is the key to nutritiion. I do not eat meat at all but still make sure that the food I eat has all the nutrition necessary. If it works for you, great, but you will not change my mind. Good luck.

I could be wrong but so far the science is on my side considering I am in remission and there hasn't been a patient who has tried this we know of that it hasn't worked for.

Please don't say you won't change my mind, that is an incredibly poor way to approach any new treatment for disease no matter what field you are discussing. Everyone should be open to changing their mind, particularly when you yourself have not reviewed any of the research on the matter.

If I took that approach I'd have never tried this treatment and would still be suffering with chrons right now. Instead I did the research, reviewed the results and tested it.

 

[Aituk7]

Didn't Peterson and his daughter cure their autoimmune problems this way? Mikhaila's illness is well know. No medicine could help her. She eventually went on a very restrictive diet and got her life back.

Yes, Mikhaila stumbled upon the diet by trial and error and only later found out how much evidence there was to back up her theory. Paleomedicina actually got in touch with her at one point because she was struggling with folic acid (she put all of this on her twitter) and she decided to start incorporating organ meats at their suggestion.

Although I believe Mikhailas plan is to essentially stay on the most restrictive form of the diet, Paleomedicina uses that form of the diet to reset your gut-immune relationship and then builds up your diet again slowly to find something easier to live with, a little more variety is helpful!

 

[Aituk7]

A few people have direct messaged me regarding this asking how easy it was to do.

Yes I found it easy to do and no I didn't cheat even once.

The reason why is because I was so determined not to go on immunosuppressants and that was the alternative.

However it's also easy to stick to because you can eat a large variety of different meats (beef, pork, lamb, venison, elk etc.) and you can eat as much as you like. Any hunger cravings, simply have a burger!

After about 2 weeks I was fully adjusted and into a rhythm where I saw food as fuel, wanting to get better because once you're healed you can start reintroducing other foods you enjoy. That determination to eat other foods helps inspire you to do everything strict for a few months and get the healing process started.

The strictest form of the diet is beef and beef liver which I am doing right now, everyone is different but for me this is yielding the best results, so I'm sticking to it for the time being.

If you have any other questions, post on here or direct message me

Thanks

 

[my little penguin]

https://www.healthline.com/nutrition/lion-diet#recommendation

 

[Aituk7]

[UR=L unfurl="true"]https://www.healthline.com/nutrition/lion-diet#recommendation[/URL]

Just to be clear. The Paleolithic-Ketogenic Diet I am advocating for is not the same as the Lion Diet. Whilst they start off similarly they diverge over time with the PKD introducing other foods including fruits and vegetables.

Having said that, this article you have posted is full of inaccurate and unsubstantiated information and as a moderator I would just bare that in mind when posting such content.
I'm not here to advocate for the lion diet but even I know that:
A) It's not lacking in nutrients so long as you eat organ meats
B) Low Fiber is irrelevant when on a meat based diet
C) The diet is not low in calories, it's completely your own choice how much you eat.

In return I will link to an article properly describing the PKD in detail
https://keto-mojo.com/article/what-is-the-paleolithic-ketogenic-diet-pkd/
Here is a study on its affects on chrons
https://www.paleomedicina.com/en/cr...y-treated-with-the-paleolithic-ketogenic-diet

 

[Andersen007]

I think it's good to be a sceptic and challenge anecdotal stories, given how insidious Crohn's can be. But if this has given OP significant relief from his symptoms, and also lowered his inflammation markers, I think it's absolutely great that he posted it, as it might help many others too. I think it's great that he is doing dietary intervention under close medical supervision. From the different studies out there, an only-meat diet that includes organs does appear to be nutritionally complete, or at least, very close to it. And that's already more than we can say about the standard Western diet. As for the science behind it, unfortunately there are not that many companies out there financially motivated to organise and execute proper controlled group studies on interventions like this - CDED diet seems to be the only one that has good evidence behind it, but that's because Nestlé is funding it and they have a product to sell on the back of it. So the lack of evidence here should make you cautious, but not dismissive.

However OP it might be helpful to present your arguments a bit less confrontational, with less anti-medicine framing - at the end of the day, it is a very personal choice, not everyone has the lifestyle, circumstances, willpower, or current state of healthiness to be able to go all-in on these type of diets. I would be quite cautious for example in patients already severely malnourished or underweight, or facing a fistula. And even if everyone could, just like any treatment, for many people it simply won't work. Based on our current knowledge Crohn's is likely to be a grouping name for quite a few different subtypes of diseases, potentially with different mechanisms. Also medicine can have a role even in this more naturopathic approach, e.g. using steroids or a single dose of a biologic to trigger remission and then use nutrition to try to maintain it, etc.

I am currently doing decently well on a restrictive diet using SCD and further excluding things, I am in clinical remission, have decent and much improved, but not perfect inflammation markers, and soon having an MRE to check how I am really doing inside. Depending on the results I might try this approach.

OP, what type of Crohn's do you have - as in, mild / moderate-severe, ileal, ileocolonic, colonic? My biggest worry about this approach is, I only tried beef once, but I was dumb enough to do so with some wine and some other things, but I got quite blackish stool and didn't feel that good. Not sure if it was the beef, so I have to try it out in a smarter way one day, but I definetly do great with chicken. Do you think chicken + organ meat for instance is an option? Did you have any side-effects early on, such as diarrhea, darker stools, etc?

 

[Andersen007]

Also, to react to a specific point, the fact that this diet is low fiber may be a plus rather than a minus - if you think about EEN, that has great success rates, it also has no fiber in it. Some actually theorise it might be a main mechanism for it's success. And yes there is diminished bacterial diversity afterwards, just like with EEN, but that might actually explain why it works. For me, who is also a celiac and can't really take on any maltodextrin or glucose syrup here in Europe (or perhaps I can't tolerate some other processed stuff in EEN), this could be a great opportunity, given that EEN actually gives me a flare-up rather than calms me down.

 

[Aituk7]

I think it's good to be a sceptic and challenge anecdotal stories, given how insidious Crohn's can be. But if this has given OP significant relief from his symptoms, and also lowered his inflammation markers, I think it's absolutely great that he posted it, as it might help many others too. I think it's great that he is doing dietary intervention under close medical supervision. From the different studies out there, an only-meat diet that includes organs does appear to be nutritionally complete, or at least, very close to it. And that's already more than we can say about the standard Western diet. As for the science behind it, unfortunately there are not that many companies out there financially motivated to organise and execute proper controlled group studies on interventions like this - CDED diet seems to be the only one that has good evidence behind it, but that's because Nestlé is funding it and they have a product to sell on the back of it. So the lack of evidence here should make you cautious, but not dismissive.

However OP it might be helpful to present your arguments a bit less confrontational, with less anti-medicine framing - at the end of the day, it is a very personal choice, not everyone has the lifestyle, circumstances, willpower, or current state of healthiness to be able to go all-in on these type of diets. I would be quite cautious for example in patients already severely malnourished or underweight, or facing a fistula. And even if everyone could, just like any treatment, for many people it simply won't work. Based on our current knowledge Crohn's is likely to be a grouping name for quite a few different subtypes of diseases, potentially with different mechanisms. Also medicine can have a role even in this more naturopathic approach, e.g. using steroids or a single dose of a biologic to trigger remission and then use nutrition to try to maintain it, etc.

I am currently doing decently well on a restrictive diet using SCD and further excluding things, I am in clinical remission, have decent and much improved, but not perfect inflammation markers, and soon having an MRE to check how I am really doing inside. Depending on the results I might try this approach.

OP, what type of Crohn's do you have - as in, mild / moderate-severe, ileal, ileocolonic, colonic? My biggest worry about this approach is, I only tried beef once, but I was dumb enough to do so with some wine and some other things, but I got quite blackish stool and didn't feel that good. Not sure if it was the beef, so I have to try it out in a smarter way one day, but I definetly do great with chicken. Do you think chicken + organ meat for instance is an option? Did you have any side-effects early on, such as diarrhea, darker stools, etc?

Thankyou for your well thought out and reasoned response

Regarding being confrontational, I apologise if anyone was offended by my demeanour, I certainly didn't intend to be rude or insulting but I do think it's best to confront challenges from people head on, particularly when the challenges made are assertions and not questions, backed up by poor evidence or none at all. I don't want people who could be helped by this risk adverse (particularly compared to certain medical treatments) dietary treatment to be put off, I've put this out there and I want it to help others.

Regarding medicine, just to be clear I am not against people using medicine, I'm not against people using anything to find relief from this disease, if steroids had worked for me I'd never have tried this diet. I'm just expressing my own personal view which is that its better to find solutions that don't include harmful medication like immunosuppressants than not, because whether we like it or not immunosuppressants are harmful, just in a different way and if anyone out there has concerns about serious medications such as immunosuppressants then I empathize with them and I hope my story gave them some hope to avoid that route.

I heartily recommend trying this approach, it's very risk adverse as I said previously and so if it doesn't work for you, no harm done however Paleomedicina are yet to have a chrons patient this hasn't worked for and I've searched across the internet and can't find anyone it hasn't worked for either so hopefully this will help you.

I had/have moderate-severe chrons of the terminal ileum, whilst I'm in remission judging from my symptoms and blood markers I haven't actually had the all clear via MRI scan (getting that done at the 12 month mark in march).

The only fluid you are allowed on this diet atleast to begin with is water so yes wine is unfortunately off limits for the time being however there are alcoholic drinks they say are better than others and once you start introducing foods back into the diet they don't recommend them but they say if you intend on drinking these are better ones, the best I believe being fruit distilled such as schnapps.

Black stool is common with high meat diets due to the high iron content I believe, it's nothing to be concerned about.

Chicken is off limits until you are healed, it's fine once you're healed and can start reintroducing foods but until then you can only eat 4 legged animals. The reason being is there just isn't enough nutritional content and unfortunately a common occurrence with chrons is an increase in gut permeability which triggers all sorts of reactions so they really insist on high quality (grass fed, grass finished 100%) meats. They even stopped me eating pork after a while because my blood ALT wasn't lowering and it turns out it's something in the pork that was causing it even though I bought it from a local high quality farm. It's not just you are what you eat, it's you are what you eat AND whatever that eats aswell.

Regarding side effects, switching from a carbohydrate based diet to a ketones based one can give you "keto flu", you basically feel rough for a few days. In my experience it was two weeks but I felt rough from chrons anyway so I didn't really notice any difference until the 2 week period was over and I actually could feel like I had more energy. Had 2 weeks being lazy, that was it.

My symptoms then faded away at different rates. The going to the toilet 15 x a day reduced and then stopped about 2 weeks in, my skin rashes and soreness disappeared soon after that. Then there wasn't much progress for 3 months so they changed my diet, made it more restrictive, so it was just beef steaks and beef liver all from one local farm and voila my symptoms got better week on week till here I am now.

Also, to react to a specific point, the fact that this diet is low fiber may be a plus rather than a minus - if you think about EEN, that has great success rates, it also has no fiber in it. Some actually theorise it might be a main mechanism for it's success. And yes there is diminished bacterial diversity afterwards, just like with EEN, but that might actually explain why it works. For me, who is also a celiac and can't really take on any maltodextrin or glucose syrup here in Europe (or perhaps I can't tolerate some other processed stuff in EEN), this could be a great opportunity, given that EEN actually gives me a flare-up rather than calms me down.

Yes fiber, like many things in our diet isn't really understood very well. There are a number of lectures on this you can view on youtube demonstrating that in controlled studies fiber sometimes makes no difference at all. It seems to me at least that fiber is good if you have a bad diet because it removes alot of the bad stuff but if you have a healthy diet it isn't necessary.

Just speaking personally, my stools are really soft and easy to pass and I'm eating strictly meat only.

 

[Andersen007]

I had/have moderate-severe chrons of the terminal ileum, whilst I'm in remission judging from my symptoms and blood markers I haven't actually had the all clear via MRI scan (getting that done at the 12 month mark in march).

Cool! Btw, did you have elevated blood inflammation markers before? Strangely, for me they were always consistently normal, even at the middle of a flare. Do you also monitor fecal calpro? In my case, that is the most important marker.

 

[Aituk7]

Cool! Btw, did you have elevated blood inflammation markers before? Strangely, for me they were always consistently normal, even at the middle of a flare. Do you also monitor fecal calpro? In my case, that is the most important marker.

Yes my blood inflammation was slightly raised but PaleoMedicina aren't looking for just that, I don't understand the science behind it but my blood list is a mile long and they check everything, apparently they somehow deducted from it that my absorption was really low and this has improved aswell. They can deduce all sorts from your blood apparently.

I do fecal calpro once every 3 months. Sent a sample off today actually. I send them those results too but they don't really mention them. I don't know why but blood is everything for them. They literally give me an excel chart that has my blood test on every month and they have ranges at the end and they say once these are in these ranges you are healing.

They monitor blood very closely and they ask you to monitor blood glucose and ketones closely. When I started the diet I had to report ketones, glucose and blood pressure to them on a daily basis to ensure I was adapting to the diet properly. That lasted 4 weeks iirc. Now I just check my ketones and glucose every few days when I remember, just to check its still in range but I have my diet nailed down now so because I eat the same thing pretty much every day the readings barely move.

 

[Andersen007]

Keep us posted on how your fecal calpro + MRI will look once you get them! Curious to see how it all will turn out. Being without symptoms while maintaining a well-nourished state is definetly a great sign.

 

[Aituk7]

Keep us posted on how your fecal calpro + MRI will look once you get them! Curious to see how it all will turn out. Being without symptoms while maintaining a well-nourished state is definetly a great sign.

Thanks and yes I will keep this thread posted with results! Calpro should be soon.

 

[lukesjr]

I am surprised how defensive people get about alternate forms of therapy. There is definitely this crowd in the Crohns community that are adamant that "pharma is the only thing that helps". Personally I think we have enough stories and medical literature showing us alternate therapies have a place and are at least as good in many cases as the pharma path. Current biologics are not the answer, they are place holder or a method to hold on until the research figures this out.

My hope is that you continue to post your progress for the next few years so we can see if the results hold.

 

[Aituk7]

I am surprised how defensive people get about alternate forms of therapy. There is definitely this crowd in the Crohns community that are adamant that "pharma is the only thing that helps". Personally I think we have enough stories and medical literature showing us alternate therapies have a place and are at least as good in many cases as the pharma path. Current biologics are not the answer, they are place holder or a method to hold on until the research figures this out.

My hope is that you continue to post your progress for the next few years so we can see if the results hold.

Hi, yes that is a great way of putting it. Current biologics are a placeholder, because they don't really fix the problem, they just stall it sometimes.

The medical literature on PKD is growing, the exciting thing about this is it's not just helping chrons but a wide range of chronic auto-immune diseases and even some cancers.

It seems to reset the relationship between the gut and immune system somehow which in turn has numerous other knock on effects benefitting the body. I don't know the science behind it in full but my doctor, Dr Zsofia Clemens has appeared on a number of podcasts and medical conferences on youtube explaining this for anyone interested

Around 8 minutes in she begins to discuss a case study on chrons

 

[lukesjr]

Oddly enough, my wife is Hungarian and we have several friends that live in Hungary. Maybe I can ask them to check it out for the benefit of others. Hungary is a small country, and those that live in work in Budapest a much smaller population. You would be surprised how many people know each other.

 

[momsa]

Can you point me to any studies by Dr. Clemens has that aren't case reports?

 

[Aituk7]

Can you point me to any studies by Dr. Clemens has that aren't case reports?

I haven't looked through everything she or the other paleomedicina staff have published, there's tonnes of it out there. I just looked at the stuff related to chrons which were multiple case studies. The stuff she's done recently has been mainly focused on cancer. Using the same diet as a treatment. I assume because there's more money in cancer but essentially the results are the same. The immune system fixes itself, the body heals and the cancer starves.

This was posted 7 days ago, the opening section explains how leaky gut affects the body and the relationship between the gut, immune system and autoimmune diseases. She references lots of papers during the talk which may help you in what you're looking for.

 

[momsa]

The lack of controlled studies with this diet and Crohn's leaves me feeling skeptical.

 

[Aituk7]

The lack of randomized, controlled studies with this diet and Crohn's leaves me feeling skeptical.

I would agree if it was something chemically medicinal. However as it's merely a dietary change I thought the risk/reward was well worth it.

That's not to say there won't be randomized studies in the future I would imagine, it's just early doors right now. However they are honest about patients this hasn't worked for, I know there was one patient with epilepsy where it only reduced their symptoms and didn't remove them outright. I've asked them if any chrons patients haven't been successful and they told me they haven't found a single one yet.

 

[momsa]

Personally, I would worry about the other health risks inherent in eating large quantities of red meat for long periods of time.

Wishing everyone good health.

 

[Aituk7]

Personally, I would worry about the other health risks inherent in eating large quantities of red meat for long periods of time.

Wishing everyone good health.

Yes I've seen many studies citing red meat as a culprit in cancer, heart attacks etc. but diving deeper into the data it would appear that none of them are conclusive. The most common problem is the studies tend to show people eating a western diet without red meat then a western diet with red meat and/or they don't stipulate where the red meat is sourced, it could be really bad quality red meat where as PKD insists on high quality, grass fed grass finished meat. We know heart blockages are increased when you have a high fat high sugar intake. Well the fat is actually good for you its the sugar you can do without, these sort of things can skew the studies.

The WHO did the most famous of these reports into red meat long term declaring fresh red meat to probably be a cancer risk and processed red meat to definitely be a cancer risk. Dr Ken Berry did a brilliant short video explaining the flaws in their conclusion and why we should be more sceptical of this information.

 

[momsa]

Actually, the study that scares me most about red meat is this one:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3650111/However, I think we could go around and around on this one, and basically I just wish everyone good health.

 

[Aituk7]

Yes, correlation does not imply causation.
Actually, the study that scares me most about red meat is this one:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3650111/I don't think this has anything to do with an animal being grass fed or not.
However, I think we could go around and around on this one, and basically I just wish everyone good health.

Here's a blog post highlighting the issues with the study you posted and why you should take it with a pinch of salt.
Whilst it would appear there are a number of factors in the study that need ironing out before any conclusion can be made the biggest one is the one I mentioned earlier. We know nothing about the triallists diets. It's just one had a vegan diet and the other set had an omnivore diet. What else was in those omnivore diets exactly we are unsure of. It could be causing problems similar to how sugar and fat cause potential heart problems and as the blog below states it doesn't explain how communities like those of the inuits have very little heart disease yet live off a near exclusively meat based diet.

There's definitely something to the quality of meat you are eating and what you are eating with it that needs further investigation
https://www.diagnosisdiet.com/full-article/does-carnitine-from-red-meat-cause-heart-disease

 

[Aituk7]

My calprotectin test returned and I'm at 684, which is still high but not as high as my previous result of 1140 and that was less than my last result when I first started this diet which was over 1500.

Symptoms are staying low to non-existent and I'm on track to full recovery.

If anyone would like any more info please get in touch

 

[Andersen007]

Pretty good result, shows that the effort of dietary intervention was worth it but also reminds us that the path is long and it's about changing our life style to one that is more sustainable for us long-term. I have started Dec 2022 with 400 on diagnosis, creeped up to 1200 until February, when I started SCD, after a lot of experimentation and further restrictions, got it down to 130 by May, then cheated 2x and I was in the 1600s after. Right now I am back at 260 as of 2 weeks ago, keeping up a healthy weight, but can feel quite uneasy after days when I eat a lot of fiber, so gonna check again in a few weeks time, and might switch to carnivore for a few weeks, and see how it changes my calpro. Quite scared of the diarrhea in the first days, that in my case is pretty much a guaranteed occurence whenever I change something radically, as I have read even in healthy people going on carnivore early on. Will keep you posted!

 

[Aituk7]

Pretty good result, shows that the effort of dietary intervention was worth it but also reminds us that the path is long and it's about changing our life style to one that is more sustainable for us long-term. I have started Dec 2022 with 400 on diagnosis, creeped up to 1200 until February, when I started SCD, after a lot of experimentation and further restrictions, got it down to 130 by May, then cheated 2x and I was in the 1600s after. Right now I am back at 260 as of 2 weeks ago, keeping up a healthy weight, but can feel quite uneasy after days when I eat a lot of fiber, so gonna check again in a few weeks time, and might switch to carnivore for a few weeks, and see how it changes my calpro. Quite scared of the diarrhea in the first days, that in my case is pretty much a guaranteed occurence whenever I change something radically, as I have read even in healthy people going on carnivore early on. Will keep you posted!

If you want to try PKD but don't want to go through paleomedicina I recommend reviewing this book

https://sa.nutriintervention.com/the-cookbook
It's written by a dietician that Paleo Medicina schedule you a meeting with when you start and has a lot of information about what you need to be doing.

 

[Corinne]

Hi Aituk7, can I ask what your diet was like before you started PKD? Were you eating just about anything or doing another diet? Were there foods you were already restricting?
Also, you mentioned you are now eating to hunger - however much you feel like. How much is that on any given day, approximately?
And do you still measure your blood glucose and ketones regularly to make sure you stay within the required parameters?
Thanks.

 

[Jo-mom]

@Aituk7 - although it's good that your Cal Pro levels have reduced, 684 still is quite high and means active inflammation. You cannot really say you are in remission with those numbers. Are you having regular blood tests to measure other indicators of inflammation as well to ensure they are also going the right direction?

 

[Aituk7]

Hi Aituk7, can I ask what your diet was like before you started PKD? Were you eating just about anything or doing another diet? Were there foods you were already restricting?
Also, you mentioned you are now eating to hunger - however much you feel like. How much is that on any given day, approximately?
And do you still measure your blood glucose and ketones regularly to make sure you stay within the required parameters?
Thanks.

Before I started this diet I was eating a healthyish western diet. So while I did have the occasional treat it was mainly fruit, veg, meat (supermarket bought), tinned foods. Just general foodstuffs but not lots of takeaways and mcdonalds etc. I'd have those maybe once a month.

I'm eating to hunger yes so I usually eat 1 400g beef steak and 100g of calves liver each day. It's not a lot but I just don't get hungry like I used to. Occasionally I will get a hunger craving day and maybe once a week I throw another beef steak in to eat. I also cut out the liver once I reach 400g each week as that's got my nutrient levels just right.

I measure them every few days now because I eat the same thing every single day its not much of an issue for me. People who don't follow as strict a version of the PKD as me have to measure them daily to ensure they're correct still. If you are thinking about doing it without medical supervision I also recommend you measure blood pressure on a daily basis

 

[Aituk7]

@Aituk7 - although it's good that your Cal Pro levels have reduced, 684 still is quite high and means active inflammation. You cannot really say you are in remission with those numbers. Are you having regular blood tests to measure other indicators of inflammation as well to ensure they are also going the right direction?

I've just had to check the dictionary for remission to make sure I was using it correctly. I think my circumstances fit that but I'm happy to be corrected!

My symptoms have reduced to next to nothing but you are most certainly right, I'm not in complete remission and still have some time to go. To be fair to the people at Paleomedicina they said it would take around a year for me to just to start feeling better and that happened at the 7 month stage which was a nice surprise.

Yes I have blood tests once a month, at the 6 month mark my blood test were perfect showing no malabsorption, good nutritional levels and no inflammation. The blood tests went up and down for a while but they settled once I finally got the diet into its strictest form. For the longest time we couldn't get my folic acid level to raise and my ALT to reduce. Eventually cutting out other meats and sticking to just beef made that happen.

And I'll continue to do blood tests for a long time yet, so at the 12 month mark i'll get another mri to check for inflammation, if nothing is there i will start reintroducing foods and the blood tests will be used to decide which foods affect my gut and which don't.

 

[Scipio]

I've just had to check the dictionary for remission to make sure I was using it correctly. I think my circumstances fit that but I'm happy to be corrected!

In Crohn's disease the term "remission" could mean different things. Remission as a general term means being free of disease or the disease is so low and quiet that your condition is pretty much the same as having no disease. There are several types or levels of remission in Crohn's disease depending on how the remission is assessed.

1. Clinical Remission - this is remission based on symptoms. If your symptoms of Crohn's have been abolished or reduced to a very low level, you are said to be in "clinical remission." This is what most patients are interested in achieving - to feel normal and healthy again.

2. Endoscopic Remission - Also called "mucosal healing." This is where there is no visible sign of ulcers or inflammation in the gut upon examination by colonoscopy. Your bowel looks normal, pink, and healthy. This is what most gastroenterologists are trying to achieve. Clinical remission and endoscopic remission do not always align. You could feel great again (especially sometimes after first starting steroids or some other new therapy), but the doctor may still see a lot of trouble during colonoscopy. Thus the gastro knows to keep adjusting the therapy to find the right long-term solution even though the patient feels pretty good right now. And vice versa too. Your gut can sometimes look fine after treatment, but some of the symptoms have continued to linger - frustrating both patient and doctor.

3. Histologic Remission - This is the highest or strictest form of remission and the hardest to achieve. It means that not only are you in endoscopic remission but also the tissue specimens that were collected during the colonoscopy show no signs of inflammation when examined by a pathologist under a microscope. This is probably the closest to a true total remission.

4. Chemical Remission - This term isn't used all that often. It means that blood or stool inflammation markers such as CRP or fecal calprotectin have dropped to normal levels. It's not usually used as a stand-alone definition of remission but is more of an adjunct to the other forms of remission - sort of added proof that, for example, the endoscopic remission is looking pretty good because the markers are also low. Or maybe the clinical remission the patient has enjoyed might be coming to an end because the markers are starting to rise. Assessing this can be a handy way to routinely monitor the disease in between colonoscopies - just run a simple blood or stool test instead of having to do another colonoscopy every time.

So based on what you have posted above, you are in clinical remission but not in chemical remission. Unless I missed it, you didn't mention any colonoscopy results, so it is impossible to say whether you are in endoscopic or histologic remission.

 

[Aituk7]

In Crohn's disease the term "remission" could mean different things. Remission as a general term means being free of disease or the disease is so low and quiet that your condition is pretty much the same as having no disease. There are several types or levels of remission in Crohn's disease depending on how the remission is assessed.

1. Clinical Remission - this is remission based on symptoms. If your symptoms of Crohn's have been abolished or reduced to a very low level, you are said to be in "clinical remission." This is what most patients are interested in achieving - to feel normal and healthy again.

2. Endoscopic Remission - Also called "mucosal healing." This is where there is no visible sign of ulcers or inflammation in the gut upon examination by colonoscopy. Your bowel looks normal, pink, and healthy. This is what most gastroenterologists are trying to achieve. Clinical remission and endoscopic remission do not always align. You could feel great again (especially sometimes after first starting steroids or some other new therapy), but the doctor may still see a lot of trouble during colonoscopy. Thus the gastro knows to keep adjusting the therapy to find the right long-term solution even though the patient feels pretty good right now. And vice versa too. Your gut can sometimes look fine after treatment, but some of the symptoms have continued to linger - frustrating both patient and doctor.

3. Histologic Remission - This is the highest or strictest form of remission and the hardest to achieve. It means that not only are you in endoscopic remission but also the tissue specimens that were collected during the colonoscopy show no signs of inflammation when examined by a pathologist under a microscope. This is probably the closest to a true total remission.

4. Chemical Remission - This term isn't used all that often. It means that blood or stool inflammation markers such as CRP or fecal calprotectin have dropped to normal levels. It's not usually used as a stand-alone definition of remission but is more of an adjunct to the other forms of remission - sort of added proof that, for example, the endoscopic remission is looking pretty good because the markers are also low. Or maybe the clinical remission the patient has enjoyed might be coming to an end because the markers are starting to rise. Assessing this can be a handy way to routinely monitor the disease in between colonoscopies - just run a simple blood or stool test instead of having to do another colonoscopy every time.

So based on what you have posted above, you are in clinical remission but not in chemical remission. Unless I missed it, you didn't mention any colonoscopy results, so it is impossible to say whether you are in endoscopic or histologic remission.

I would hazard a guess you are correct!

 

[Andersen007]

Thought I will check in to say that 5 days ago I have started the carnivore diet. This was after my almost-keto SCD wasn't able to get me back to a good enough calpro level the second time after I cheated on it in August, and I was experiencing very loose stools, calpro rising again, and felt miserable on a plant based EEN after just 2 days. So I went to measure my calpro, and started the next day (dont have my results in yet). I am going for beef + salmon + chicken + eggs as except beef these foods have been staples for me in the past.

On the plus side, my flatulence / bloating is completely gone, which I had probably due to the amount of almonds and fiber I was consuming. Also no pain so far, and weird stomach noises on the first 2-3 days seem to have calmed down too. I found some nice beef patties that taste great, have 1:1 fatrotein ratio, 99% meat, rest is 0.9% salt 0.1% pepper, and its organic with some badge of animals being well-kept. To my surprise, I seem to tolerate them quite well.

On the negative side, I do have very consistently liquid stools, 2x a day. Fortunately no urgency associated with it. To be fair, I had very loose stools in the last weeks even before carnivore, but I feel like the lack of fiber makes it worse rather than better. When I poo, its almost like peeing, and if I push my abdomen in at certain places, I can almost feel and hear the liquid moving. But quantity is very limited compared to the liquid stools I got from EEN, so that tells me I am probably digesting most of what I eat. I am planning to try liver next week. I am kind of hoping this is normal and will eventually clear up. Planning to measure calpro again in around 2 weeks to see if its not making things worse. Color is also darker than usual, which I attribute to the beef that I introduced.

Any advice on how I should use these at-home ketone testing kits and what I should be going for?

 

[Aituk7]

Thought I will check in to say that 5 days ago I have started the carnivore diet. This was after my almost-keto SCD wasn't able to get me back to a good enough calpro level the second time after I cheated on it in August, and I was experiencing very loose stools, calpro rising again, and felt miserable on a plant based EEN after just 2 days. So I went to measure my calpro, and started the next day (dont have my results in yet). I am going for beef + salmon + chicken + eggs as except beef these foods have been staples for me in the past.

On the plus side, my flatulence / bloating is completely gone, which I had probably due to the amount of almonds and fiber I was consuming. Also no pain so far, and weird stomach noises on the first 2-3 days seem to have calmed down too. I found some nice beef patties that taste great, have 1:1 fatrotein ratio, 99% meat, rest is 0.9% salt 0.1% pepper, and its organic with some badge of animals being well-kept. To my surprise, I seem to tolerate them quite well.

On the negative side, I do have very consistently liquid stools, 2x a day. Fortunately no urgency associated with it. To be fair, I had very loose stools in the last weeks even before carnivore, but I feel like the lack of fiber makes it worse rather than better. When I poo, its almost like peeing, and if I push my abdomen in at certain places, I can almost feel and hear the liquid moving. But quantity is very limited compared to the liquid stools I got from EEN, so that tells me I am probably digesting most of what I eat. I am planning to try liver next week. I am kind of hoping this is normal and will eventually clear up. Planning to measure calpro again in around 2 weeks to see if its not making things worse. Color is also darker than usual, which I attribute to the beef that I introduced.

Any advice on how I should use these at-home ketone testing kits and what I should be going for?

So first up, just remember carnivore is not the same as PKD. I personally would advise the PKD but if you want to go carnivore that's fine. Most people do absolutely fine on carnivore, PKD is a lot more restrictive at first to ensure results are achieved.

You want to be aiming for 2:1 fat to protein ratio or if you look at the size of your portion of meat you want about 30% of that to be fat, especially at first, I would advise adding some beef tallow (beef fat) to your meal or if you're happy going generic carnivore you can add much tastier butter such as kerrygold (100% animal based). If you go the beef tallow route you don't have to buy it pre made, to save cash I just ask for the fat from my local butcher, he gives me it for free and I just render it all for a few hours in the oven. It keeps in the fridge for like 3 months. Every time my ketones drop a bit I just add some to my meals.

The loose stools are absolutely normal when switching to carnivore as your body adjusts from using carbs for energy to ketones and has a lot more protein and fat to adjust to (it's called becoming fat adjusted). This can go in a few days or a few weeks, for me it was 3-4 weeks. It's when your body gets into a decent ketosis level consistently it tends to stop.

You will find you don't have as much stool and don't go to the loo as much after a while, I literally defecate now once every 1-2 weeks. I absorb everything. The higher quality the food, the more satiated you are, the less overall you eat but the more you absorb.

Your stools will be much darker in colour purely down to the amount of iron you are now consuming, I'm not sure if other factors make it darker but again completely normal.

Bare in mind that meats that say grass fed aren't always grass finished (they load them up with crap in the last few weeks to bulk them), I would advise shopping from an online farm shop, not sure where you are based but there are loads here in UK.

I wouldn't do salmon, eggs or chicken just yet personally, I would let your body properly adapt to the new diet first and stick to 4 legged animals. So beef, pork, venison, lamb etc. Also remember that chicken while nice to eat is not nutritious at all in comparison to other meats on this diet. You shouldn't be eating it regularly, it's not a staple. Your staple should be beef whilst mixing in other 4 legged animals for variety. Eggs are great and if you can handle them that's fantastic but I would wait until you are adjusted before having them. Again this is just friendly advice, it might work fine for you ignoring it.

Remember on carnivore you can eat cheese and dairy too but some people struggle with this so be very careful doing it. That goes for the butter too, allowed on carnivore but not on PKD. Stick to tallow if it doesn't sit well with you.

Important note about organ meats, you must research how much you can eat safely, beef liver has a tonne of vitamin A amongst every other vitamin. It's the most nutritious food on the planet. But your body can't get rid of the excess vitamin A fast enough and its toxic after a point so limit yourself to 400g of beef liver per week. That's what I stick to and am absolutely fine. I look at organ meats as medicine and muscle meats and fat as my food. So I eat my prescribed amount of medicine purely for the nutirents and then do what I want with everything else

As for keto testing kits, yes the best one is this one
https://www.amazon.co.uk/KETO-MOJO-Bluetooth-Glucose-Ketone-Testing/dp/B0BV8D17ZS
https://keto-mojo.com/ are perfect for this stuff and have loads of handy articles you can use to find out more.

If you're interested in healing your gut, you can induce autophagy in yourself by sticking to a low GKI index. They have a chart on their website explaining it. Basically its about keeping your ketones high and your blood glucose low. This is crucial to the PKD diet I follow.

I wouldn't expect any results after a couple of weeks, 90 days is the benchmark in my opinion before you can truly decide how much of a success you have had with the diet. Remember any bloods you do, your uric acid will be high, so don't panic, this is normal, mine is still high now, it is what it is, more protein = higher uric acid but it's not an issue.

Any more questions feel free to get in touch

 

[thike1966]

https://www.paleomedicina.com/en/cr...y-treated-with-the-paleolithic-ketogenic-diet[/QUOTE]

I want to thank you for the inspiration. I for one know my diet is UBER IMPORTANT and am open to learning more to benefit, since for the last 6 years, between C-Diff 7 times, bad care from a GI doctor, most every biologic and Prednisone that took most of my teeth away and two surgeries, Skyrizi seems to be my answer. But after 376 days in the hospital and three days away from death when I was diagnosed at age 51, this has been a journey that I know I could have done better and I need to keep learning and growing until the day I die. I've lost a sister last year who had Crohn's since 1976 but led a full life until liver cancer took her, that could not be operated on due to Crohn's and having two babies. My brother died of a heart attack a few years after my mother died of Alzheimer's, 6 months before my diagnosis. Each stress period landed me in the hospital.

My dad died last May, and since my ileum was taken along with being on Skyrizi, I stayed out of the hospital for Crohn's. I did end up in the hospital after because like a Pavlov dog, my intestines swole with the stress, but there was no Crohn's.

So, I am strongly considering this diet and will do the research and get my GI's opinion, he is very open to new ideas and supportive. For example, I had to get an ileostomy bag due to an ignored for 7 months fistula. I am now using the acid in my Ostomy bag, filtered to a consistency I can inject into the tube I used to use manufactured acid and medicine. My doctor is somewhat surprised, but supports me as it it is working and my reversal recovery will be far better as it won't be as much of a shock for my colon to get back on full time work.

It was supposed to last 3 to six months, but my crazy train of hospital stays, I have not been strong enough for the surgery for the last 3 years until now, I have a a colonoscopy and endoscopy on December 1st. When I clear that, I will get my reversal and get my stomach back and continue my journey to a full recovery. After my surgery and hospital food, I am thinking I will likely try this for six months and do everything I can to stay out of the hospital until my final day of life.

 

[Aituk7]

I want to thank you for the inspiration. I for one know my diet is UBER IMPORTANT and am open to learning more to benefit, since for the last 6 years, between C-Diff 7 times, bad care from a GI doctor, most every biologic and Prednisone that took most of my teeth away and two surgeries, Skyrizi seems to be my answer. But after 376 days in the hospital and three days away from death when I was diagnosed at age 51, this has been a journey that I know I could have done better and I need to keep learning and growing until the day I die. I've lost a sister last year who had Crohn's since 1976 but led a full life until liver cancer took her, that could not be operated on due to Crohn's and having two babies. My brother died of a heart attack a few years after my mother died of Alzheimer's, 6 months before my diagnosis. Each stress period landed me in the hospital.

My dad died last May, and since my ileum was taken along with being on Skyrizi, I stayed out of the hospital for Crohn's. I did end up in the hospital after because like a Pavlov dog, my intestines swole with the stress, but there was no Crohn's.

So, I am strongly considering this diet and will do the research and get my GI's opinion, he is very open to new ideas and supportive. For example, I had to get an ileostomy bag due to an ignored for 7 months fistula. I am now using the acid in my Ostomy bag, filtered to a consistency I can inject into the tube I used to use manufactured acid and medicine. My doctor is somewhat surprised, but supports me as it it is working and my reversal recovery will be far better as it won't be as much of a shock for my colon to get back on full time work.

It was supposed to last 3 to six months, but my crazy train of hospital stays, I have not been strong enough for the surgery for the last 3 years until now, I have a a colonoscopy and endoscopy on December 1st. When I clear that, I will get my reversal and get my stomach back and continue my journey to a full recovery. After my surgery and hospital food, I am thinking I will likely try this for six months and do everything I can to stay out of the hospital until my final day of life.

Good luck my friend. I strongly recommend that you do everything properly. Strict PKD, measure ketones etc. If you have any questions please do not hesitate to get in touch

 

[momsa]

"Skyrizi seems to be my answer."

My I ask how long ago you started the Skyrizi?

 

[Andersen007]

I want to thank you for the inspiration. I for one know my diet is UBER IMPORTANT and am open to learning more to benefit, since for the last 6 years, between C-Diff 7 times, bad care from a GI doctor, most every biologic and Prednisone that took most of my teeth away and two surgeries, Skyrizi seems to be my answer. But after 376 days in the hospital and three days away from death when I was diagnosed at age 51, this has been a journey that I know I could have done better and I need to keep learning and growing until the day I die. I've lost a sister last year who had Crohn's since 1976 but led a full life until liver cancer took her, that could not be operated on due to Crohn's and having two babies. My brother died of a heart attack a few years after my mother died of Alzheimer's, 6 months before my diagnosis. Each stress period landed me in the hospital.

My dad died last May, and since my ileum was taken along with being on Skyrizi, I stayed out of the hospital for Crohn's. I did end up in the hospital after because like a Pavlov dog, my intestines swole with the stress, but there was no Crohn's.

So, I am strongly considering this diet and will do the research and get my GI's opinion, he is very open to new ideas and supportive. For example, I had to get an ileostomy bag due to an ignored for 7 months fistula. I am now using the acid in my Ostomy bag, filtered to a consistency I can inject into the tube I used to use manufactured acid and medicine. My doctor is somewhat surprised, but supports me as it it is working and my reversal recovery will be far better as it won't be as much of a shock for my colon to get back on full time work.

It was supposed to last 3 to six months, but my crazy train of hospital stays, I have not been strong enough for the surgery for the last 3 years until now, I have a a colonoscopy and endoscopy on December 1st. When I clear that, I will get my reversal and get my stomach back and continue my journey to a full recovery. After my surgery and hospital food, I am thinking I will likely try this for six months and do everything I can to stay out of the hospital until my final day of life.

Wow, you went through a lot, respect for fighting and keeping your chin high. You have a lot of options to try, in this thread we are talking PKD / carnivore, but also consider other options such as CDED, SCD, or even EEN if you feel like you are going into a flare. I am a huge believer in dietary changes but unfortunately almost impossible to know in advance what may or may not work for you - and it can even change over time. A good dietatian or nutritionist can help to choose if you feel overwhelmed (but there are many really bad ones out there too) and also a medical professional should monitor you for malnutrition and inflammation, ideally. Great to hear Skyrizi is helping. Wishing you a lot of strength.

 

[Aituk7]

Wow, you went through a lot, respect for fighting and keeping your chin high. You have a lot of options to try, in this thread we are talking PKD / carnivore, but also consider other options such as CDED, SCD, or even EEN if you feel like you are going into a flare. I am a huge believer in dietary changes but unfortunately almost impossible to know in advance what may or may not work for you - and it can even change over time. A good dietatian or nutritionist can help to choose if you feel overwhelmed (but there are many really bad ones out there too) and also a medical professional should monitor you for malnutrition and inflammation, ideally. Great to hear Skyrizi is helping. Wishing you a lot of strength.

How are you finding the diet so far Andersen?

 

[Aituk7]

With my symptoms getting better even quicker than expected my doctor ordered another Calprotectin level last week. The results came back today and it was at 85. I guess that means I'm officially in some sort of remission. Waiting on MRI in March to confirm 100%

I never thought I'd see that level but I have the PKD diet to thank for it. It's just nice to know my nightmare is over and I hope you all find solutions too.

If anyone has any questions please feel free to ask them on here or via DM.

 

[czmom]

Hello All. I am the mother of a 23 year old son who was recently diagnosed with Crohns . While currently searching for a doctor and dietician who specializes in Crohn's I thank you all for this wealth of information. My son is currently on Mesalamine and although this has limited his stools so he's not waking up 3-4 times a night to go to the bathroom his stools still are runny.
I'm just starting to grasp what sort of things I should be looking for in his tests. Is there anything that I should be paying strict attention to? He has lost so much weight these past 4 months, it hurts to look at him so thin.
Thanks for any thoughts..I am currently keeping him on chicken and white bread.. Oddly enough he did have a hamburger the other day and that seemed to go well. However, I'm not sure if that's wishful thinking ...

 

[Andersen007]

I recommend regularly checking calprotectin and probably CRP too (you have to figure out which one shows his inflammation best (which one was high on diagnosis), and do a food journal for symptoms (e.g. what he ate, when, what supplements, and how many stools with what consistnecy) to notice trends. Sometimes things that cause inflammation do not cause immediate symptoms, and vica versa. White bread is often excluded from the usual Crohn diets like SCD, Mediterranean, CDED, carnivore. But that doesn't necessarily mean its bad for him, unfortunately its a lot of trial and error. Also that restricted diet is prone to cause malnutrition. Would be good to find a dietatitian or ask doctor to monitor blood for deficiencies and electrolyte imbalances. Unless carefully calculated and portion sizes are ensured, if he is only taking that 2 things, weight loss is almost a guarantee too, even if inflammation would not cause that in itself. At least take a multivitamine. But following one of the Crohn's diets has the benefit that most of them can be put together in a nutritionally complete way. EEN is also an option in that regard. Good luck!

 

[Jo-mom]

I hope you find a doctor soon. When my son was in a state of high inflammation (before he was on his medication), no diet could help him. He too was very thin and he had trouble eating a whole banana. He started on Sulfasalazine (I believe similar to what your son is on now), but that really didn't do much. It wasn't until he was on Remicade that things changed so very quickly. On the day of his first infusion, he wanted to eat. It was a game changer for him. I think once you find a doctor (and hopefully that won't take long), and he is put on the right medication, you will see the drastic improvement. Due to the inflammation, my son also has arthritis from his Crohn's, and once he had his first infusion, he was able to walk properly (whereas he wasn't able to walk at ease before). My son was 19 when diagnosed and is 25 now and doing wonderfully btw.

Hope you get answers soon.

 

[Aituk7]

Hello All. I am the mother of a 23 year old son who was recently diagnosed with Crohns . While currently searching for a doctor and dietician who specializes in Crohn's I thank you all for this wealth of information. My son is currently on Mesalamine and although this has limited his stools so he's not waking up 3-4 times a night to go to the bathroom his stools still are runny.
I'm just starting to grasp what sort of things I should be looking for in his tests. Is there anything that I should be paying strict attention to? He has lost so much weight these past 4 months, it hurts to look at him so thin.
Thanks for any thoughts..I am currently keeping him on chicken and white bread.. Oddly enough he did have a hamburger the other day and that seemed to go well. However, I'm not sure if that's wishful thinking ...

I would highly recommend trying the PKD diet I am on. Within 2 weeks I went from going to the toilet 10+ times a day to going to the toilet once evry 1 or 2 days.

If you need any further info please get in touch.

 

[Corinne]

Hi @Aituk7, just wondering how you are doing on PKD. How are your inflammation markers? Any symptoms? Have you had that MRI you mentioned?

 

[Aituk7]

Hi @Aituk7, just wondering how you are doing on PKD. How are your inflammation markers? Any symptoms? Have you had that MRI you mentioned?

Yeah, things are clearing up for me great. Had an MRI last month, no inflammation markers. All my bloods are looking great. Calprotectin is around the 50 mark.

Symptom free too which is brilliant!

 

[Corinne]

That's great news Have you considered reintroducing other foods yet?

 

[cheka]

Yeah, things are clearing up for me great. Had an MRI last month, no inflammation markers. All my bloods are looking great. Calprotectin is around the 50 mark.

Symptom free too which is brilliant!

how many different plant foods do you eat/day? took a quick look at that diet, looks like it includes plenty of microbiome friendly plant fibers. is this correct? if you will, list the plants/fibers you are using. thanks!

 

[Andersen007]

Aituk, could you share your MRE results with personal identifiers removed? It may help others believe that PKD approach could genuinely work and is worth a try. Even better if you also share a previous MRE where results were worse, if you do have that.

 

[braveheart]

Sometimes it is not enough but I am sure Paleo diet helps a lot. Congrats Aituk7.
Keep in remission forever

 

[Maer]

Yeah, things are clearing up for me great. Had an MRI last month, no inflammation markers. All my bloods are looking great. Calprotectin is around the 50 mark.

Symptom free too which is brilliant!

Hi! Very impressive. You said some time ago that at the beginning, you had to monitor your blood pressure frequently? Why? What kind of tweaks
did they make based on blood pressure? And why does it matter if ketones go too high? Hope this isn't too much to ask, but your history is very intriguing.
Thanks for your postings!

 

[Aituk7]

That's great news Have you considered reintroducing other foods yet?

Yes, I currently eat beef, venison and pork, soon I will be reintroducing eggs and then fish.

And hopefully in another 3-4 months vegetables!

 

[Aituk7]

how many different plant foods do you eat/day? took a quick look at that diet, looks like it includes plenty of microbiome friendly plant fibers. is this correct? if you will, list the plants/fibers you are using. thanks!

No it's a full meat based diet that resets your gut and only at key stages do you reintroduce the plant based foods. I've been doing this for a year and a half now roughly and am still yet to reintroduce plant foods but honestly I don't care it's just lovely being symptom free

 

[Aituk7]

Aituk, could you share your MRE results with personal identifiers removed? It may help others believe that PKD approach could genuinely work and is worth a try. Even better if you also share a previous MRE where results were worse, if you do have that.

I live in the UK so the NHS keep them, I'll ask next time I'm in the doctors if its possible to get hold of them.

 

[Aituk7]

Sometimes it is not enough but I am sure Paleo diet helps a lot. Congrats Aituk7.
Keep in remission forever

Just to be clear my diet is PKD, Paleolithic Ketogenic. It's not the same as Paleo.

But thankyou!

 

[Aituk7]

Hi! Very impressive. You said some time ago that at the beginning, you had to monitor your blood pressure frequently? Why? What kind of tweaks
did they make based on blood pressure? And why does it matter if ketones go too high? Hope this isn't too much to ask, but your history is very intriguing.
Thanks for your postings!

I don't know because my blood pressure was always ok. I assume I had to measure it to make sure my body was adapting well to ketosis and I was getting enough energy.

My ketones were always around 3-6 and that's never been an issue, apparently around the 9 mark is when it can become an issue but I honestly am not an expert so I can't really comment. I just aim to keep mine above 2.5