This is how I'm going to put my Crohn's into remission

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acemagic

acemagic

Joined
Feb 22, 2012
Messages
99
Location
Calgary, AB, Canada
Hey guys,

I've taken about an hour to write the following information out to you. I want it to be super concise, but easy to read. I hope you can get through it all because I think it will be important for everyone on this site. Over the last 3 weeks, I have read almost every posting on this website, in every category. I've read books on Crohn's disease, diets, and looked at all the different medications available to us. I've literally spent about 40 hours, simply reading everything I can and taking down key information. I've done this because I've been laid up in hospital for the last 3 weeks, having undergone my third and hopefully final resection of bowel. And I want to share what I've discovered with you. I know there is a TON of information out there, half of which contradicts the other half, and it's nearly impossible to weed through it all (unless you have 3 weeks with nothing else to do). So here goes:

1- Diet IS a factor in treating your disease. I'll talk about why I'm so certain of this a little later in this post. Many western doctors feel that this is not the case, but I have been listening to my Western doctor for 14 years, have gone on every medication available to us from Prednisone to Remicade, and still have had 3 resections. Once I accepted that *maybe* the western docs don't know everything there is to know about the disease, I was able to look further into the role of diet. And here is what I've found:

2- First and foremost, I found Robert747. He is an active user on this forum who has been in remission for about 13 years (no small feat). From age 40 to age 50, he was in a complete remission and from ages 50 to 53, his Crohn's has slowly crept back into his life. I asked him to provide me with a list of his general food intake from ages 40-50 and his intake from ages 50-53 to see if anything has changed in the last 3 years. Here is what he sent me:

40 to 50

Dairy Average to high
Grains Low
Meats Average
Raw vegetables / Fruit High (juicing)
Sugar Average to low

50 to 53

Dairy Average to high
Grains High
Meats Average
Raw vegetables / Fruit Low to medium
Sugar Average to low

Based on this list, I started looking into grains as a potential cause of Crohn's disease, since that was the biggest change in his diet. And what I found out was pretty astonishing.

3- The SCD diet, The Paleo diet, the LOFFLEX diet...they all in some way remove grains and/or fibre and/or dairy from the diet, and they all seem to have some degree of success. The most success lies within the strictest diet: The Paleo diet. I literally can't find anyone on this forum that has said the Paleo diet did not work for them. Every person who I've spoken to and read about on this forum seem to be in a complete remission (with no medication or very little medication) if they can stick to a strict Paleo diet. There is a moderate degree of successes and failures with the SCD Diet, but it allows a significant amount of dairy in the diet, whereas Paleo does not. If you have SERIOUSLY tried the Paleo diet for 30 days and it didn't work for you, then please feel free to comment, but even a google search of "Paleo doesn't work" didn't come up with any IBS related results, just weight loss ones.

4- For those unfamiliar with it, the Paleo diet essentially states that processed foods (such as dairy, grains and refined sugars) are relatively new to the human digestive system and humans haven't completely adapted to digest these foods yet. It makes sense from an evolutionary standpoint and is backed up by the fact that our diseases (IBS, Crohn's and colitis) never existed before we began cultivating grains and milking cows. For those who are underweight (such as myself), a Paleo diet seems to help with weight gain, and for those who are overweight, it appears to be very successful with helping weight loss.

5- My best educated guess is that there are 3 types of foods: Crohn's CAUSING, Crohn's IRRITATING and SAFE foods. Crohn's CAUSING foods are foods that will bring back the disease no matter what stage of health you are in. These foods include Grains (not just gluten, but wheat, corn, rice, etc), dairy and processed sugars. However, these foods don't actively HURT us when they're being digested, which is why a "low residue" diet prescribed by doctors (lots of noodles, rice, and white bread) feels just fine when we're on it, but does nothing to remove the disease itself. Crohn's IRRITATING foods are high fibre foods such as raw fruits and vegetables, seeds, nuts. This is why when a person has ACTIVE disease (aka, a flare-up), we can't seem to stand raw fruits and vegetables. It's because the high fibre content of these foods irritates the active crohn's in our digestive tracts. Since my surgery a few weeks ago, I am Crohn's free (for all intents and purposes), so I have vastly increased the intake of my fruits and vegetables (raw) and I'm finding very very little ill effects. I have gotten the occasional cramp just before a bowel movement, but that's it. The 3rd type of food is crohn's SAFE, which from what I've gathered, seems to include chicken, fish, and most fruits/vegetable juices (watch out for acidic juices such as pineapple or tomato or juices containing pulp!). This will neither irritate active crohn's, nor will it make the disease any worse. This also supports the juice diets that we know can be successful at bringing ourselves back to health from a flare-up.

6- Finally, stress seems to be a major factor in contributing to the disease. I haven't really determined its exact role, but definitely try to do some moderate exercise, yoga or meditation. I HATE exercise with a passion (I'm a computer geek!), but I'm going to do my damnedest to try and go for a 20 minute walk every day for starters and move to some weight bearing exercises over time.

Now guys, I'm not a doctor. But my personal doctor is world renowned at being a leading expert in Crohn's (he was the guy who brought Remicade onto the market and conducted the clinical trials), and not even HE knows what causes the disease. I'm sick of letting this disease rule my life and I absolutely refuse to put my family and friends through the weeks of hospital visits and suffering that we both endure every time I have to go back. I've already lost 3 feet of intestine and am vowing to do everything in my power to not lose any more. I'm going to do my best to fully commit to the Paleo diet and I will come back to all of you with HONEST results. If I'm totally and completely wrong, I will let you know and I will commit to reporting back every few days or weeks with progress. If you want to join me, I'd certainly appreciate the support. If you're currently in a flare, my advice is to buy a good juicer and juice fast for at least a few days (and maybe have some SCD legal chicken soup - no noodles!) to get your gut healed. Report back with any results (good or bad!). I hope we can tackle this thing and get some people disease free.

I also want to say thank you to Robert747 for his awesome communication and support. I'll be in touch, and feel free to email me or PM me at any time.

Sincerely,

Adam C
[email protected]
 
This is awesome and I hope it works for you! On the other hand, Paleo, destroyed me. I was on a complete paleo diet for over two years before my Crohn's started. I tried to maintain the paleo even amongst the Crohns, but kept losing weight, and had zero energy whatsoever. For me, fiber is my biggest irritant (food wise), and it was sending my body over the edge. I still maintain a high protein (all organic) and try to keep paleo when I can (rare to low temp cooked), but have added in some simple carbs for energy sake. As an endurance athlete, with crohns, the protein even in huge quantities was not sufficient.

I would love to know how your experience goes! I hope it works better for you then me. I miss living my paleo life, and hate putting "bad things" like grains into my diet, but the most important thing is listening to your body.
 
Hey Nikimazur,

That's great information, thank you for posting that. Crohn's varies so much from person to person, and you're quite right, the most important thing is listening to your body. My fear with Crohn's is that it comes back so gradually that sometimes you don't realize anything is wrong before it's too late. Giving up rice, noodles and potatoes is going to be immensely hard for me, as it was a staple in my diet (and pretty much every meal) for a decade or so. But I'm worried that if I re-introduce those things, I may feel better in the short run, but it could do damange in the long run. Although I just posted today, I've actually been on Paleo for 3 days and have already felt a considerable drop in energy. I'm exhausted, but from what I've read, that's pretty normal when starting out.

Oh, I forgot to mention in my last post about my weight. After my last surgery 5 years ago, I had dropped from 140lbs to 110, and then bounced back to 145 after the operation, where I've stayed for the better part of 5 years. Just before this operation I just had, my Crohn's was active again and it had brought me down to 140, from 145. I now weigh 120, as of this morning, post-op.

-Adam
 
Great read. I saw that you might think Grains are a part of what inflames it.

This might be a dumb question, but is spaghetti a grain? I've been eating a ton of spaghetti the past week due to trying to gain weight and working out, and thus far my crohns has been seeming to be getting better. I haven't added any new meds (yet). Ill let you know if I continue eating a lot of grains if anything changes.
 
Hey Ethan,

Yes absolutely! Noodles have wheat in them (even egg noodles). Which sucks, because they're my favorite thing ever and were a staple of my diet for years. Rice noodles are "better" but are still not Paleo legal because they're a grain. Paleo advocates recommend using spaghetti squash as your new noodle. I wasn't a big fan when I tried it years ago, but maybe you'll think differently. One Paleo book I read said that if you HAVE TO HAVE TO cheat, go with rice noodles.

As far as your lack of pain, I'm not surprised. Wheat (noodles) fall under the doctor recommend "low-residue" diet, which doesn't seem to aggravate and irritate Crohn's in the short term, but it's one of those things that may bring about Crohn's in the long term. I never had any pain associated with heavy noodle eating. But my Crohn's came back over the course of a couple of years and going by what I've read, eliminating grains seems to have the most success in keeping the disease away for long periods of time.

-Adam
 
Ethan..spagetti is wheat, so it is a grain. Any pasta is. But docs recommend it for weight gain, and it's low residue.

Ok, so having a full paleo diet. Do you have (have you found), any info to say pulses are bad. Legumes? Lentils beans ect. And also, what about qunoia? I can understand that white bread pasta etc, can be bad, but not how or why legumes would be. And rice? I want to try scd, and not have rice for a while, just to see if it improves the crohns, but rice has been eaten for thousands of years, and I'm not sure that fits with 'it a new grain and so we can't digest it'. It's gluten free, so if it isn't the gluten, what in grains, do you think, causes the disease? I question sugar more, then the grains themselfs, as white carbs all have high levels of sugar. But legumes... I thought were supposedly healthy all round, and the rice, I just want to at least try for a month, not to have, after the other refined sugars, carbs, and most starches, which also turn into sugar.
So what about grains, do you feel, causes crohns? I'd say sure, I'll try paleo and support you, but I want to wean pred as I slowly have less and less milk, as I already have osteoporoses (I'm 29), and the breads etc, I thought bit by bit, so it's not a huge leap, as a candida diet made me really sick last year. But I really hope it works for you, and please keep us posted on your progress. I asked if anyone has tried a no sugar diet, and someone on paleo, had a lot of good things to say about the diet, so maybe by scd stage, I'll give it a try. Best wishes xo
 
Hi adam,

thanks for doing this, in my head i kept saying i must read it all but it is all so contradictory and huge!

my plan now is to go read the Paleo diet stuff and see what it says,if its achievable for me the chocaholic!

I had my first resection 2 months ago and thats when i received my diagnosis. On discharge I was told no active crohns was left in my system. I was eating low residue after surgery and have expanded my diet now a bit more. I'm just wondering if the crohns has come back since my surgery, can anything make it go away again or will it always be there?
i hope that makes sense?
x

i hope that question makes sense!
 
Hi Acemagic.. I can guarantee that you do *not* want to hear me right now. What really helped me in my quest for better ehalth.. as there is no cure for Crohns.. was prayer..*and* meditation !!
For me prayer is talkign to God and meditation is listening to God. I ahev lsiten a lot but I also talk a lot. I am am very frustrated these days as it feels as if no oen is "listening." I think I am finally accepting taht people.. usally health care professioanls coubnsellors ect.. just do nto have the capacity to understand.
BAsically I have "outgrown" the peopel who are suppose to be supporting me. Their time is over. my quest now is to find get help to help me move forward. That is the challenge. I need people to not only "think" but "act' outside the box.
That ishow I got healthier with my Crohns. Changed lots of things and behaviours in my life !!
Unforatunately some realtionships had to end becasue of this. I am grateful for the bond we "did" share btu I am on a different path now.
And there are *many* paths !!
 
Hey Irene,

I believe the theory behind avoiding grains is not the gluten itself. You avoid gluten if you have celiac disease (an allergy to the gluten molecule, I believe). But we all know that you don't necessarily need to have Celiac if you have a form of IBS. The reason for avoiding grains (including rice and yes, and unfortunately quinoa) and Legumes (including pulses) is something called Lectins. I don't know much about it. As a matter of fact, when I read your post, I had to Google it. But here are a few links I found:

http://www.smart-diner.com/tag/paleo-diet-lectins/
http://www.paleoplan.com/2011/03-30/why-no-grains-and-legumes/
http://board.crossfit.com/showthread.php?t=64684

You're also right, rice has been eaten for thousands of years in some countries. But in the grand scheme of things, thousands of years is not a very long time. And rice was only first cultivated in the late 1600's in the Americas (and Australia) for the first time, which really only gives us about 300 years to make biological changes that allow us to digest it. That's not a long time at all.

Regarding your osteo, I totally understand. I'm also osteopenic (thanks Prednisone!) but interestingly enough, during my readings, I found that light, weight bearing exercises are more responsible for building bones, than a high intake of calcium. Even so, calcium is probably important, but it's far better to get it from dark leafy vegetables (I hate spinach, but if I juice it and add some fruits for taste, it's awesome) or calcium supplements.

I also found during my reading that biphosphate drugs that help "build bones" such as Fosamax, Actonel, Boniva and Reclast seem to be popping up more and more as causing bone FRACTURES! Here is one of the articles that mentions it from last year:

http://articles.mercola.com/sites/a...ngthening-drugs-actually-cause-fractures.aspx

Hope that helps you!!

-Adam
 
Fromthe gut.....I'm also a spiritual person. In that, when I am most upset, I always talk to God. I thought for so long about deutoronomy, and how it says if we ignore sabbath, all kinds of illnesses come upon us. For a while I thought, if I speak to god about everything, then even if I don't agree with ancient deutoronomy laws, about tithing etc, that god still loves and understands, that I'm a good person. I felt I could go without tithing etc, and it didn't really matter. Well, I got more sick, so then I started studying the bible again. But reading it again, just made me realize that I either tithe, and keep sabbath, or I just keep studying and saying I believe in god, but disagree to do as the bible asks. So I started tithing again, and try to keep sabbath now. Not with all the Jewish tradition (im not Jewish), but just as the bible says. I dont speak to others who do, as most people I know who believe in god, feel tithing and sabbath are not necessary. What do you think?
 
Mia E said:
Hi adam,

thanks for doing this, in my head i kept saying i must read it all but it is all so contradictory and huge!

my plan now is to go read the Paleo diet stuff and see what it says,if its achievable for me the chocaholic!

I had my first resection 2 months ago and thats when i received my diagnosis. On discharge I was told no active crohns was left in my system. I was eating low residue after surgery and have expanded my diet now a bit more. I'm just wondering if the crohns has come back since my surgery, can anything make it go away again or will it always be there?
i hope that makes sense?
x

i hope that question makes sense!
Click to expand...

Hey Mia,

Oh chocolate, RIP.

Actually, some people on Paleo, seem to indulge dark chocolate once in a while. I hate the stuff personally I loved milk chocolate, but that's a definite no-no. But I think I've read about 2 Paleos who still indulge every once in a while in DARK chocolate. So if you like dark chocolate, you might be able to get away with it once in a while.

Again, I just want to re-iterate that this is really just a "best guess" strategy based on boatloads of information available. I highly doubt your Crohn's could come back that quickly, but if you were to follow this strategy, I would suggest weaning yourself off of the low-residue stuff and try to go more into the cooked vegetables and juices and meats for starters, and try introducing raw fruits/veggies very slowly. You may get some initial cramping, similar to what I have had, because remember: those foods can be Crohn's irritating due to the high fiber content. But since low-residue could be bringing the Crohn's back gradually, I would opt definitely try and limit your intake of those foods until you can get rid of them altogether. Besides, lets face it. Fruits and vegetables are simply better for you than processed noodles and breads. But yes, if your Crohn's is ACTIVE, stay away from raw anything. Buy a juicer and juice for a while to get some bowel rest.

In the past, when I have had a bowel obstruction that landed me in the hospital, I have had to go off foods for a week and gradually re-introduce things because my bowel is so inflamed. It's awful, being on nothing but an IV drip for so long, but it certainly has helped repair things!

-Adam
 
fromthegut said:
Hi Acemagic.. I can guarantee that you do *not* want to hear me right now. What really helped me in my quest for better ehalth.. as there is no cure for Crohns.. was prayer..*and* meditation !!
For me prayer is talkign to God and meditation is listening to God. I ahev lsiten a lot but I also talk a lot. I am am very frustrated these days as it feels as if no oen is "listening." I think I am finally accepting taht people.. usally health care professioanls coubnsellors ect.. just do nto have the capacity to understand.
BAsically I have "outgrown" the peopel who are suppose to be supporting me. Their time is over. my quest now is to find get help to help me move forward. That is the challenge. I need people to not only "think" but "act' outside the box.
That ishow I got healthier with my Crohns. Changed lots of things and behaviours in my life !!
Unforatunately some realtionships had to end becasue of this. I am grateful for the bond we "did" share btu I am on a different path now.
And there are *many* paths !!
Click to expand...


Hey Fromthegut,

I am not a religious person at all. I was born into a Jewish family, but I can't honestly say I practice any form of religion. But I do agree with you that healing comes from many places. I wholeheartedly agree that meditation may very well help people along (I even mentioned it in my original post!), and I am glad to hear that you have achieved a form of healing through your journey. I'm simply offering yet another path to those who are still searching for answers. Whether they find it in God, Paleo, or any other means, we're all tried to achieve the same result - healing. Thank you for contributing what has helped you!!

-Adam
 
Hi adam

thanks for your response. i understand this is just a theory so dont worry about me taking it as gospel truth! but i like the process you went through to get to your hypotheses so i am willing to try it out as an idea.

RIP chocolate indeed! after surgery i vowed to never eat crisps (chips) again (purely so i wouldnt put the weight back on again, i may have loved them more than chocolate!) and i have stuck to that, so i'm sure i could manage without chocolate too....i hate dark chocolate!

how does vitamin supplements and medication fit into your theory?
 
Mia E said:
Hi adam

thanks for your response. i understand this is just a theory so dont worry about me taking it as gospel truth! but i like the process you went through to get to your hypotheses so i am willing to try it out as an idea.

RIP chocolate indeed! after surgery i vowed to never eat crisps (chips) again (purely so i wouldnt put the weight back on again, i may have loved them more than chocolate!) and i have stuck to that, so i'm sure i could manage without chocolate too....i hate dark chocolate!

how does vitamin supplements and medication fit into your theory?
Click to expand...

Hey Mia,

Chips were my vice too. Matter of fact, when i got released from hospital a few days ago, I bought a big bag of ruffles original and ate them all and have another bag sitting in my pantry, begging to be eaten. Unfortunately, now that I'm committed, I'm giving it to my girlfriend.

Well, vitamins are important through and through. They're essentially the fuel that your body needs in order to survive. So if you're not getting your essential vitamins on ANY diet, you should be supplementing. I take a vitamin D tablet daily, along with Fish Oil and probiotics (which are on hold because I'm still on a healthy dose of antibiotics -- courtesy of the hospital visit -- until tomorrow).

Medication is an excellent point to bring up. Medication prescribed to Crohn's patients have a chance of reducing inflammation in the gut. That's what they're all designed to do. From Prednisone to 6-MP to Remicade, they're all just aimed at reducing inflammation. Prednisone is a prime example. Prednisone reduces inflammation and suppresses the immune system, which is why we usually feel better while we're on it. But it doesn't tackle the source of the inflammation! It's like banging your head on the wall, and taking Tylenol to make you feel better! Sure the headache will go away, but you should really stop the banging your head thing ;) As I'm sure you've heard before, Western medicine is amazing at treating symptoms of disease, but rarely the root cause.

The "best theory" right now according to Western docs is that Crohn's disease is an autoimmune disease, which is essentially the immune system attacking itself, causing inflammation. They don't know why the immune system is attacking itself, so they just aim to reduce the inflammation. So all the medicines available to us do exactly that. But something is still continuously causing it to come back. The other interesting thing I found is that there have been very little studies done on the role of diet in Crohn's disease, because studies cost a great deal of money and no pharmaceutical companies want to spend millions of dollars only to discover that diet plays a role! Why? Because if they discover that diet is the cause of Crohn's disease, then they can't SELL us anything and get their investment back. It makes perfect sense from a business point of view, but it really sucks for all of us who are suffering. So all of their studies are aimed at introducing more drugs into our system to combat the inflammation.

So in summary, keep on your supplements and if you're concerned you're missing something, definitely do some investigating to find other food/supplement sources!!

-Adam
 
Adam... Thank you for your response. I'll try paleo, but without even lentils, just meat and veg, it will be hard. I'll try to research meal ideas. Ill be staying on humira and 6mp though, but if the diet improves things dramatically, then I'll see what my gi thinks about not taking the 6mp at least, then maybe humira. At this point, I'm happy with humira though.
Best wishes :)
 
acemagic said:
The "best theory" right now according to Western docs is that Crohn's disease is an autoimmune disease, which is essentially the immune system attacking itself, causing inflammation. They don't know why the immune system is attacking itself, so they just aim to reduce the inflammation.
Click to expand...

Doctors who still believe in that need to start reading more, that theory has been debunked over and over and over and over and over and over ad nauseam.

There are so many reasons that explain why this isn't true.

Studies show that crohn patients have a reduced reaction against harmless bacteria, when you infect a crohn patient with a harmless bacteria they react slower to bacteria than controls.

"Importantly, in the second biopsies, a lower cytokine
production and an abnormally low neutrophil accumulation
was observed in patients with Crohn’s disease
compared with healthy controls. It is difficult to interpret
these data in any other way than with the hypothesis that
patients who suffer from Crohn’s disease have an impaired
acute immunity.""

Studies show that crohn patients have an immune deficiency.

Genes show crohn patients have an immune deficiency.

People with Crohn have increased chance to get C. Difficile.

Animals with genetic NOD2 disorder have increased chance of bacterial infection.

http://www.youtube.com/watch?v=vCVt7eZNqhk&feature=relmfu

Our body didn't just decide one day to attack our own intestine for no reason whatsoever, the idea is stupid, there is no proof whatsoever that that is happening, the inflammation is being caused by excess TNF-Alpha, that's why every medicine, herb, and vitamin that reduces inflammatory cytokine is helping crohn, and why every one of them is targeting TNF-Alpha.

Doctors who still say crohn is autoimmune where our own body attacks harmless bacteria, just suddenly, one day, for no reason whatsoever, without any proof to back it up, should be charged for malpractice, cause the only doctors who still believe that are doctors who haven't opened a book in 60 years.
 
Last edited:
Hello Acemagic,
You reports are most interesting.
Thank you for sharing
Hugs and best wishes
Trysha
 
acemagic said:
Crohn's varies so much from person to person, and you're quite right, the most important thing is listening to your body.
Click to expand...

You're right, it does vary from person to person.

Once you have one resection your likelihood of having another one increases. Some of us are more fortunate than others though. I've also been in remission for 13 years but I treat it with medication only. No exercise, poor diet and most certainly not stress free (no can do since I'm a caregiver for my grandpa, although I guess that could count as exercise as well).

It'd be great if everyone could go med free but the reality is that we all must do what works for us since we're all different. There is no cure for Crohn's as its in our DNA. Once its activated it can only go into remission but will always be there.

The main thing we have to do is seek treatment, whatever that may be and continue to see our doctors so we can have regular tests done to make sure that our choice of treatment is still working. This is the best way to stay in remission.
 
I instinctively knew that my Crohn's came back because of a change of diet - despite what the doctors said. I am now on Azathioprine and have discussed with my doctors about moving away from medication in favour of diet. They look at me as though I am mad!

Since being on Aza I have suffered from shingles (a direct result) and have to stay out of the sun plus the concerns about increased cancer risks. Is this going to be my life from now on....er....no!

Truth is adopting a new diet is really, really hard. I have started off with the best intentions but very slowly I have relaxed my 'regime'. I think I will end at a compromise situation - 80% good diet / 20% enjoy life diet.
 
kiny said:
Doctors who still believe in that need to start reading more, that theory has been debunked over and over and over and over and over and over ad nauseam.


http://www.youtube.com/watch?v=vCVt7eZNqhk&feature=relmfu

Our body didn't just decide one day to attack our own intestine for no reason whatsoever, the idea is stupid, there is no proof whatsoever that that is happening, the inflammation is being caused by excess TNF-Alpha, that's why every medicine, herb, and vitamin that reduces inflammatory cytokine is helping crohn, and why every one of them is targeting TNF-Alpha.

Doctors who still say crohn is autoimmune where our own body attacks harmless bacteria, just suddenly, one day, for no reason whatsoever, without any proof to back it up, should be charged for malpractice, cause the only doctors who still believe that are doctors who haven't opened a book in 60 years.
Click to expand...

I couldn't agree more Kiny! Doctors need to keep informed. I watched a few of the videos so far. Very interesting stuff. It's interesting to note that MAP appears to originate in the body through the intake of milk and milk products because the bacteria doesn't get killed during the pasteurization process. Yet another reason to avoid dairy.

Is there anyone on the forum who has participated in any of these studies? Are there any currently available medications that target MAP specifically?

-Adam
 
Hi Adam,

Thanks for sharing your ideas! As you're going to try paleo, I want to throw two thoughts your way:

All meat is not the same.

Research the difference between factory farmed meat and naturally raised meat such as grass fed beef.

In addition, I'm of the opinion that our society moving away from eating nutrient dense organ meats such as liver, kidneys, heart, etc leads to problems as well. There's a reason people of the past thought these had magical properties. Just something for you to research a little :)

Best of luck to you!
 
David said:
Hi Adam,

Thanks for sharing your ideas! As you're going to try paleo, I want to throw two thoughts your way:

All meat is not the same.

Research the difference between factory farmed meat and naturally raised meat such as grass fed beef.

In addition, I'm of the opinion that our society moving away from eating nutrient dense organ meats such as liver, kidneys, heart, etc leads to problems as well. There's a reason people of the past thought these had magical properties. Just something for you to research a little :)

Best of luck to you!
Click to expand...

Hey David,

Thank you for that! You're absolutely right about the meats. Unfortunately I'm ridiculously squeamish when it comes to the organ meats. I'm going to stay more on the chicken & fish side of things, (while keeping beef to a minimum), but I don't think I'll ever get the guts to ingest liver ever again. It was traumatic as a child having to eat that stuff.....let alone a heart.

For those who are wondering, I'm on day 4 of the Paleo diet and I'm feeling exhausted. Like....really really tired, as if I've just got out of surgery all over again. I went for a 40 minute slow walk to the store, and I feel like I just ran a marathon. I don't know if it's because I'm still post-op (but it's been 3 weeks) or because I'm vastly changing my diet, but I've read that going Paleo can make you tired for a couple of weeks. This morning I downloaded an app onto my phone called MyFitnessPal, which helps at tracking what your goals are and whatever you're eating and calculates your program. Unfortunately it doesn't take 3 resections into account, but it's a good start. It's actually really handy. So now I'll know if I'm missing my required intake of carbs on the Paleo Diet. I highly recommend it to anyone who has Android (I don't know if it's available for IPhone or not)

-Adam

-Adam
 
I know the feeling, I'm the same way. Problem somewhat solved: http://www.grasslandbeef.com/Detail.bok?no=821 This stuff is delicious. It's not as good as pure organ meats, but it's certainly the next best thing in my opinion.

And the same statement I made above stands for poultry. They're not meant to be fed massive amounts of corn like the factory farms feed them. For example, give this a read: http://www.drhoffman.com/page.cfm/892
 
Glad to hear your doing well at staying on the diet Adam. Hope your feeling a bit better soon.

Robert...I felt horrid on aza. HATED it!!! Couldn't go outside without feeling I was burning within 5 min. My gi put me on 6mp instead. When I mention diet to him, his the same. Thinks it's a very bad idea to try to get well without medication, and diet alone. I went against his advice mid last year, and ended up in hospital on cortisone. So now I'm staying on the humira and 6mp, and if things improve, then I'll see if it states that way without 6mp, Nizoral, and leave the humira until I'm in complete remission. IF diet improves things THAT much. Best wishes with beginning a diet.

I'd love to be able to afford organic food, grass fed beef, all the free range and best, but it's just not possible. :(
 
Irene3 said:
Glad to hear your doing well at staying on the diet Adam. Hope your feeling a bit better soon.

Robert...I felt horrid on aza. HATED it!!! Couldn't go outside without feeling I was burning within 5 min. My gi put me on 6mp instead. When I mention diet to him, his the same. Thinks it's a very bad idea to try to get well without medication, and diet alone. I went against his advice mid last year, and ended up in hospital on cortisone. So now I'm staying on the humira and 6mp, and if things improve, then I'll see if it states that way without 6mp, Nizoral, and leave the humira until I'm in complete remission. IF diet improves things THAT much. Best wishes with beginning a diet.

I'd love to be able to afford organic food, grass fed beef, all the free range and best, but it's just not possible. :(
Click to expand...


Hey Irene,

What diet were you trying when you had your relapse?

-Adam
 
Candida, lots of green tea, couldn't stomach barely any food because my inflammation markers were over 120. 5 is normal. Kept thinking it will be fine after a while, because candida die off symptoms drain you, but then in hospital, when told I needed cortisone, I said to the doc, I had gone without meds for ages, and she basically said, you can either go on cortisone, or die from the inflammation. I didn't even have full on crohns pain. Hadn't taken pain meds in a while. 2 days into the cortisone I was back on morph, back in agony, eating lots, so bowels cramping. And back on low residue. Felt like I started the candida diet for nothing. Had to defer Uni as well, so I promised myself to follow what my gi says from then on, to a t. Except the aza. That I honestly couldn't keep taking, but thankfully he put me on 6mp instead. :)
 
I think paleo is a great idea and it's worth a try but I will say we did try it for my young daughter with UC. And it was NO carbs, eggs, dairy at ALL. It was low carb veg and certain meat. At first it seemed to be a miraculous turn around but then it suddenly stopped working (before she reached remission) and it turned into a total disaster, huge flare. Good luck to you though.
 
Yeah, it can take awhile to get used to eating fewer cards and probably more so not eating grains. In particular, many people go through wheat withdrawals.

Dr. Eades had some nice articles on overcoming the run down feeling when eating fewer carbs. Basically you'll want to eat more fats. Even though it isn't paleo, I'll eat some aged cheese from time to time, and that seems to help. I'm actually nibbling on some cheddar as I write this. Coconut oil doesn't cause me problems either, and seems to give good energy. (Many have gut issues with the medium chain fats in coconut oil.)

"Tips & tricks for starting (or restarting) low-carb Pt I"

http://www.proteinpower.com/drmike/...cks-for-starting-or-restarting-low-carb-pt-i/

&

"Tips & tricks for starting (or restarting) low-carb Pt II"

http://www.proteinpower.com/drmike/...ks-for-starting-or-restarting-low-carb-pt-ii/

And on wheat withdrawals:

"Wheat withdrawal: How common?"

http://blog.trackyourplaque.com/2008/10/wheat-withdrawal-how-common.html
 
killcolitis said:
I think paleo is a great idea and it's worth a try but I will say we did try it for my young daughter with UC. And it was NO carbs, eggs, dairy at ALL. It was low carb veg and certain meat. At first it seemed to be a miraculous turn around but then it suddenly stopped working (before she reached remission) and it turned into a total disaster, huge flare. Good luck to you though.
Click to expand...

This is exactly what I worry about. That without immune suppressants I'll flare. That's why I want to try to very slowly go on a good diet, and if things improve, slowly go off meds, and reintroduce foods, but at the sign of the slightest flare (if I ever go into remission on the diet), I'd be quick to ask my gi for immune sup again. Thing that worries me, is 6mp takes 6 months to work, humira 3, plus time to be approved, so if I did go off meds, the short time solution my gi and gp favor are pred. The only alternative to that, is entacort. Which is costly, but I'd much prefer it then pred. Worst case is cortisone 3_4 needles per day, then high dose pred. Which is what happens everytime I flare and go to hosp. :/
 
killcolitis said:
I think paleo is a great idea and it's worth a try but I will say we did try it for my young daughter with UC. And it was NO carbs, eggs, dairy at ALL. It was low carb veg and certain meat. At first it seemed to be a miraculous turn around but then it suddenly stopped working (before she reached remission) and it turned into a total disaster, huge flare. Good luck to you though.
Click to expand...

Hey killcolitis,

The diet you mentioned above doesn't quite sound like a Paleo diet. Paleo isn't about low or no carbs. Matter of fact, it's recommended you DO get as many carbs as possible on the diet... just not from grains. It's essentially a no "processed food" diet. Which includes grains (wheat, rice and corn) and dairy and refined sugars.

But you are supposed to have loads of meat and vegetables and fruits. And eggs is especially one of the necessary items on the diet. They recommend a few a day!

-Adam
 
Hey guys,

End of day 6 on the Paleo diet!

My energy level is still WAY down. I have trouble even walking around, which is awful because I'm back to work tomorrow! I weighed myself this morning and I have dropped 1 pound, down to 119. I'm still going to give the diet a fair shot though. Especially during the process where my intestines start to heal. Probably 30 days or so, at the minimum. Apparently it takes a good 2 weeks to get over the tired feeling, which is essentially my body going through withdrawals, much like a cigarette addiction or alcoholism (thanks to Beach for those links providing that information!!)Today I even went out to eat at a restaurant! Chicken and ribs with some veggies! It was delicious (except for when the veggies turned out to be string beans, which aren't Paleo legal)

...Also, the sauce on the ribs were probably not Paleo legal, but it was very very minuscule. Other than that, I've been doing really good with sticking to things. 24 days (at least) to go!

I also found a site called www.Paleohacks.com which is essentially another forum with Q&A about the Paleo diet. I asked a question about weight gain and got 2 answers within an hour, so that's good. There are some people that advocate that potatoes and/or rice could be legal on the Paleo diet and that the diet is more about minimizing processed foods than anything. If I need to gain weight, then it's OK to change things up a bit.

So if the downward trend continues, I'll start with some potatoes to hopefully reverse it.
I'll keep you posted!

-Adam
 
I would much prefer beef raised on the free range for two reasons. 1. Raised on grass means that the meat is more natural, not filled with growth hormone etc like you will see in factory farm raised beef. 2. The range is much more humane to the cattle.My father was raised on a cattle ranch. My Uncle continued to run that ranch when I was a kid.I spent time on that ranch and learned a few things about raising beef.Quality feed, meaning good range, raised the best quality beef.
 
I am 51 and have had CD since I was 9. Ive felt for a very very long time that the first and foremost this disease is caused by our mental makeup and it is exacerbated by our diet. Ive never met a CD or IBD patient that did not have an underlying nervous disorder lurking. We worry, we stress and then we worry some more. Sure every human has these issues but people with CD are the ones who it effects. I don't know if its because we are genetically wired for this to happen or if there is an enzyme or dna problem going on but I have little doubt it stems from this. Secondary to the cause is our diet which has already been talked about at length...it just adds the fuel that starts this disease rolling. Autoimmune disease? Nope. The op has it right....you can go in to remission simply by changing diet....but further this disease can nearly be cured by changing how we think, how we handle stress and how we feel about ourselves in our own skin. Some have said they do it with prayer or meditation and thats great....whatever works for you. Some may need help from anti anxiety meds in combination with meditation. Some find help in forums such as this. Whatever makes you feel better about yourself or relieves stress in your life that is the route to go as well as changing that diet. The doctors that advocate crazy drugs that wipe out your immune system are uninformed imho.
 
VapeKing said:
I am 51 and have had CD since I was 9. Ive felt for a very very long time that the first and foremost this disease is caused by our mental makeup and it is exacerbated by our diet. Ive never met a CD or IBD patient that did not have an underlying nervous disorder lurking. We worry, we stress and then we worry some more. Sure every human has these issues but people with CD are the ones who it effects. I don't know if its because we are genetically wired for this to happen or if there is an enzyme or dna problem going on but I have little doubt it stems from this. Secondary to the cause is our diet which has already been talked about at length...it just adds the fuel that starts this disease rolling. Autoimmune disease? Nope. The op has it right....you can go in to remission simply by changing diet....but further this disease can nearly be cured by changing how we think, how we handle stress and how we feel about ourselves in our own skin. Some have said they do it with prayer or meditation and thats great....whatever works for you. Some may need help from anti anxiety meds in combination with meditation. Some find help in forums such as this. Whatever makes you feel better about yourself or relieves stress in your life that is the route to go as well as changing that diet. The doctors that advocate crazy drugs that wipe out your immune system are uninformed imho.
Click to expand...

I've been in remission for 13 years on 6MP an immune suppressant. Its not being uninformed, its fact. There is no cure for Crohn's.

Edit: And yes Crohn's is an autoimmune disease.
 
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VapeKing said:
I am 51 and have had CD since I was 9. Ive felt for a very very long time that the first and foremost this disease is caused by our mental makeup and it is exacerbated by our diet. Ive never met a CD or IBD patient that did not have an underlying nervous disorder lurking. We worry, we stress and then we worry some more. Sure every human has these issues but people with CD are the ones who it effects.
Click to expand...
Stress no doubt plays a role in IBD. How much, I don't know, it's probably different for everyone. Most people, IBD or not have an underlying nervous issue, it's the nature of the world we now live in. Those who then have an IBD phenotype have their disease worsened by stress.

Diet is no doubt one of the changes that people with IBD need to make. Lifestyle changes such as stress reduction and developing tools to properly deal with it are of utmost importance as well. No argument with you there.

And I do believe some people are able to control their IBD with those two facets alone, but due to the world we live in, they're in a minority. For example, you said it sometimes it comes to the point where some need anti-anxiety medications? Why is that? Why can't they just deal with their stress? Because it is really hard on a good day and impossible on a bad. And that's where this comes in:

VapeKing said:
The doctors that advocate crazy drugs that wipe out your immune system are uninformed imho.
Click to expand...
No, they're not. Do you know why enteral nutrition which is shown to induce remission on par with prednisone isn't prescribed as a sole mode of treatment very often in adults? Non compliance. People can't stick to it.

The world we've created for ourselves makes sticking to a strict diet and living stress free EXTREMELY difficult. As such, and for other reasons, flareups happen. And the problem there is the more flareups you have and the longer you have chronic inflammation, the more scar tissue you begin to develop. And sooner or later that scar tissue narrows your intestines enough that you develop a stricture. And from there, terrible complications begin to develop. And this is of course just one example of the many ways this disease can cause terrible complications.

Whether people are unable to stick to a proper diet (if they're even able to figure out what is proper for them) and low stress lifestyle or simply choose not to, the inflammation needs to be kept in check. If it's not, sooner or later this disease will catch up to you in a very bad way. For some, that's sooner, for some, that's later.

I'm all for diet. I'm all for lifestyle changes. I'm all for alternative treatments. But we must also realize that sometimes you have to call in the big guns. And there's nothing wrong with that and people shouldn't be made to feel guilty for taking such medications when they get to that point. They should be supported. And as we're a support forum first and foremost, that's where we come in. We educate (in a supportive manner) about all the possible choices out there. We help people learn as much as they can about this disease so they can advocate for themselves. And then when they make a decision about what path for treatment they decide to take, we support them.

Welcome to the forum by the way :)
 
As I said...this is just my opinion from nearly 40 years of research and study on this issue. Ive seen the doctors who claim one thing then they claim another. Ive seen their thoughts on this issue go full circle. I have yet to meet a gastro doc who has crohns who fully understands. Ive seen the drugs come and go. Ive talked to many many many people thru out the decades who have this disease. The two constants are the 2 things I have mentioned. Yes the body attacks itself but what makes the body attack itself? There is a reason. You zero in on that reason you fix this disease or control it.
 
Nobody fully understands Crohn's.

I definitely understand where you're coming from but you're simplifying an extremely complicated disease. Yes, diet and lifestyle changes can absolutely help people with IBD. But you can't zero in on what makes the body attack itself (if it is indeed even attacking itself) because THAT is not a THAT. THAT is a mind exploding number of possible variables from microbial to environmental to dietary to genetic to lifestyle and everything in between. And very likely different from person to person and a combination of god knows how many variables, some possibly dynamic in nature.

For example, over 20 genes have thus far been implicated in IBD and some genes have multiple possible mutations. And then those mutations can affect a wide variety of pathways from the mucosal lining to extraintestinal manifestations to microbial sensing to lysosomal targeting to antimicrobial functions to regulation of the inflammatory response, and many more. Take 100 IBD patients and each will have a different phenotype, different symptoms, different pathogenetical processes, and respond differently to like treatments.

You can't zero in on something that is all over the map. But you can take a big step back and nuke it from orbit by trying to find the dietary changes best for you, reducing stress, exercising appropriately, utilizing alternative treatments, and a whole host of other lifestyle changes. All the while utilizing western medicine to monitor your disease state and to provide that additional treatment regimen when needed, which unfortunately, is quite often.
 
Interesting discussion. You both have very valid points.

Vapeking, I personally agree with you that there is a specific reason the body attacks itself. As far as "curable" diseases go, there always seems to be one source. Target the source, and you remove the disease. We just haven't found the source yet, so as David says, we try to Nuke the disease from orbit.

But I have to disagree on the "doctors" topic. Yes, no one knows everything about the disease, but those medications can help some people. I had a terrible flare about 8 years ago, took 1 dose of Remicade, and I was fine for a year. No, it didn't solve the problem of the disease being present, but it certainly masked the symptoms enough that I was able to function again. If a "cure" is found, then hopefully it will be shared with everyone and we'll move forward, but in the meantime, because we have no known cure, they can only do their best, which is resolve the symptoms. As Crabby mentioned, he's been in remission for 13 years, and that's no small feat, and nothing to sneeze at. But yes, if you get a bad doctor, who tells you that diet and stress aren't a factor and that you should just take steroids...well, then you've got a bad doctor.


PS, Thanks for re-posting that link on potatoes Crabby. I think I'll continue to stay away from them.

-Adam
 
Hey guys,

Day 8, 121 pounds.

So far, so good. My energy levels are starting to come back, which is great! I'm actually back at work (just a computer job), but am definitely spending a great deal of time in the bathroom. Im missing my terminal ileum now, so I'm getting plenty of D, gas, cramping and bloating, possibly from all the fruit/vegetable fibre or from the steady stream of antibiotics I've just been on. Now that they're done, I'm restarting my Probitics, so hopefully that will help things along.

I have an appointment with my surgeon this afternoon. He mentioned that he is interested on putting me on Cholestyramine, which would be responsible for reducing the D, but it can also cause blockages if there is an overdose, and can reduce your absorbtion of Vitamins A, D, E and K. Has anyone been on this? Have you had any success with it?

I've also made an appointment with a Naturopath (who has a dietician in house) Next Saturday (the 30th). I'll talk to her about Paleo to see if it's something she supports.

The crappy news is that I got an email from my mother begging me to stop the diet because when she saw me the other day (at 119lbs) she said I looked like I was about to die. She's pretty frantic about me gaining weight. But I'm too far in to stop now, so I had to tell my mother that I wasn't going to stop unless I continued losing weight. So that was fun. but hopefully as long as I gain weight, she'll be ok with things.

That's about it! I'm actually not having a lot of trouble sticking to things. I might still try to re-introduce rice, if I get ballsy enough. We'll see! I'll keep you posted!

-Adam
 
David said:
Nobody fully understands Crohn's.

I definitely understand where you're coming from but you're simplifying an extremely complicated disease. Yes, diet and lifestyle changes can absolutely help people with IBD. But you can't zero in on what makes the body attack itself (if it is indeed even attacking itself) because THAT is not a THAT. THAT is a mind exploding number of possible variables from microbial to environmental to dietary to genetic to lifestyle and everything in between. And very likely different from person to person and a combination of god knows how many variables, some possibly dynamic in nature.

For example, over 20 genes have thus far been implicated in IBD and some genes have multiple possible mutations. And then those mutations can affect a wide variety of pathways from the mucosal lining to extraintestinal manifestations to microbial sensing to lysosomal targeting to antimicrobial functions to regulation of the inflammatory response, and many more. Take 100 IBD patients and each will have a different phenotype, different symptoms, different pathogenetical processes, and respond differently to like treatments.
Click to expand...

It is a complicated disease or a lot of simpler diseases. Given the range of symptoms (stricturing, fistulating, inflamation) and locations it appears (ileum, cecum, ascending colon, sigmoid colon, etc.) it is surprising it is considered a single disease.
 
Since having a resection and ileostomy I have become acutely aware of the importance of diet, vitamins and minerals and hydration. Whether diet can prevent Crohns is debatable, but what I am 100% sure about is that for me to feel the best I can (within the constraints of having this illness) I need to get my diet, vitamins and minerals and hydration exactly right. It can make the difference between a miserable life and a really good one, so it is worth spending time and effort on finding what works for you.
 
Yeah, the latest Consumer Reports had an article on prevention as being the best way to get the most out of doctor visits. It went on to explain that they sent a survey to medical schools around the country, asking whether their curricula required 25+ hours of nutrition education, and only something like 25-30% actually did. (too lazy to look it up, sorry).
 
JMC said:
Since having a resection and ileostomy I have become acutely aware of the importance of diet, vitamins and minerals and hydration. Whether diet can prevent Crohns is debatable, but what I am 100% sure about is that for me to feel the best I can (within the constraints of having this illness) I need to get my diet, vitamins and minerals and hydration exactly right. It can make the difference between a miserable life and a really good one, so it is worth spending time and effort on finding what works for you.
Click to expand...

Hey JMC,

Mind if I ask what your diet is? What vitamins you take, how much water you get per day? What foods do you try to avoid? How long have you been feeling "good" for? And are you on any medication? Thanks!

-Adam
 
Adam, thought I'd chime in briefly regarding your terminal ileum resection, D, and potentially using cholestyramine. A bunch of people on the forum have had great luck using psyllium husks -- definitely do a search and check it out if that's something you're interested in, as it seems to act in a similar way by absorbing the bile salts that your terminal ileum used to take care of (which ends up being an irritant to your colon and causes D). Not sure if psyllium husks are "Paleo legal," but I thought I'd make a mention of it. Best of luck and keep us updated on how you're doing!
 
acemagic said:
Hey JMC,

Mind if I ask what your diet is? What vitamins you take, how much water you get per day? What foods do you try to avoid? How long have you been feeling "good" for? And are you on any medication? Thanks!

-Adam
Click to expand...

Vitamins: B12 and D daily, Calcium occasionally
Medication: 150mg Azathioprine

I eat a fairly standard low fibre diet. It maybe isn't that varied, luckily I like chicken and rice! I also eat at least one banana (for potassium) each day.

Breakfast: banana, rice crispies with milk, bottle of Lucozade
Morning snack: latte + pastry
Lunch: Chicken and rice (Chicken Katsu Bento, Sweet and Sour Chicken and rice)
Afternoon snack: salted crisps
Dinner: White pasta + sauce (carbonara, tomato), fish + potatoes

Drinks: 2L made up of 1L lucozade (low sugar) and 1L water. Occasionally I drink Ribena with a large pinch of salt if I am bored of Lucozade. I tend to drink one small coffee (latte) per day and several cups of tea.

Generally I avoid:
Nuts
Anything with a tough skin
Salad
Green vegetables
Red meat, with the exception of bacon (once per week), and the occasional burger (ground red meat is easier to digest)
 
JDTM said:
Adam, thought I'd chime in briefly regarding your terminal ileum resection, D, and potentially using cholestyramine. A bunch of people on the forum have had great luck using psyllium husks -- definitely do a search and check it out if that's something you're interested in, as it seems to act in a similar way by absorbing the bile salts that your terminal ileum used to take care of (which ends up being an irritant to your colon and causes D). Not sure if psyllium husks are "Paleo legal," but I thought I'd make a mention of it. Best of luck and keep us updated on how you're doing!
Click to expand...


Hey JDTM! Thanks for the advice! Unfortunately Psyllium husks aren't legal on Paleo, and they can be irritating to the gut. Glad to hear that some of us are having success with it though! I've been on the Cholestramine for 2 days now and haven't noticed much of a huge change. My doc said it could take up to a week to see results though.

-Adam
 
Day 10: 123 lbs!

I'm very happy I'm actually putting on weight. I would have had to have dropped the diet if I wasn't. Energy levels are pretty normal now, but because I'm eating so much (2380 calories minimum/day, and on a Paleo diet, that's not easy), I'm feeling pretty bloaty. Also, the more I read about the SCD diet and the Paleo diet, the more I hear about the initial first few days where you eat broth and SCD friendly yogurt (SCD Diet) or cooked veggies (Paleo diet) and how important that is to reset your bowels... Something I didn't really do. My last blood test also showed a growing number of Candida in my gut, and apparently those little buggers feast on fruit.

So I'm starting to think my gut is in a bad place right now. A 2 week dose of IV antibiotics, followed up by 1 week of oral antibiotics, plus with my candida result, I imagine my intestine is in no shape to be doing the work it's doing (hence the bloating/gas)

Does anyone have any experience with a Candida cleanse or re-populating good bacteria? I'm lazy and won't take the time to make SCD yogurt, but I have been taking the 50 billion critical care probiotic from Renew life for the last 3 days. How long doesit take to get your gut back to normal? How long does a Candida cleanse take and what does it entail? Would I starve to death, knowing what I can eat right now is limited?

PS, The diet isn't very hard at all so far. Meat and veggies and fruits and for snacks: nuts, raisins and beef jerky. Eggs and Bacon every morning. I can't complain!

Thanks for reading!

-Adam

-Adam
 
Hey all,

Day 14 on the Paleo diet. I was a bit concerned because over the weekend, I had dropped down to 121, but my sister (who is trying to lose weight) says that fluctuations are normal when trying to lose or gain weight, and to just keep at it. Sure enough, I was back to 124 this morning!

So...pain wise, I'm doing fine. Nothing to report there. Matter of fact, the only time I *might* have a cramp is when having a BM (which have been SOLID for the 1st time in years thanks to the Cholestyramine). I can't decide whether I like that or not. I feel a little bloaty more often, but no contstant bathroom trips!!

Diet wise, I think I'm inadvertantly cheating here and there(sorry!!!). For example, I went to Nando's chicken for the last 2 nights, and got a half grilled chicken, with a salad (oil and vinegar dressing) and some coleslaw. Well the coleslaw, had a slightly creamy sauce, and when I asked about it, they said that it contains a bit of mayonnaise. Mayonnaise isn't Paleo legal, because I believe it contains corn starch, but it's in SUCH minute amounts! I'm trying to be rigorous about sticking strictly to the diet, but sometimes I just never know. It's mostly sauces I have trouble with.

Bacon is the other one. bacon is a meat, but MOST bacon contains Nitrates. I've been eating 5 slices of bacon from A&W every morning to get my calories up, and just now discovered that the nitrates that they most likely have makes it illegal on the Paleo diet. Naturally, 5 slices of bacon each morning is a big factor in assisting with weight gain. not sure what I can replace them with, or if I should even bother. Thoughts? Do you think this is killing my whole experiment?

Other than those 2 mishaps, I've been very rigorous.

Also, I've noticed that yesterday and today, both my BM's and my gas have been extra smelly. I was always that way before my operation, but I thought it was caused by the disease. Could smelly gas be caused by Candida? I'm going to talk to my naturopath about a cleanse this Saturday when Is ee her. We'll see what she recommends.

But all in all, feeling great! My scar from my surgery has healed very well and my energy level is back to normal. I'm also back on L-glutamine (for leaky gut), probiotics, and fish oil.

Talk soon!

-Adam
 
there will be a 'die-off' after a week or two and you will feel like hell,
there will also be the addiction withdrawals after a week.

I can't say this loud enough-

CARBS (from paleo sources) ARE FINE ON PALEO, -
Where the carbs come from is what matters.
All meat, veg, nuts , eggs, etc contain carbs ,
Paleo is called a low carb diet because there is a reduction in the amount of carbs eaten by excluding sugar and grain, but pumpkin, carrot, tubers (sweet potato, yams) etc are OK.

If you don't get enough carbs you will feel like shit.
The amount of fat (animal, olive oil, avocado,nuts) eaten increases and you derive more energy from them.

Vegetable oils MUST be avoided

It's all about repairing intestinal integrity (reducing intestinal permiability- leaky gut),
so reducing stress, avoiding antibiotics, NSAIDs, grain, legumes

A 'Paleo' diet can be unhealthy if it is unbalanced

Paleo can be specifically tailored to Autoimmune diseases.
These links discuss the Paleo for Autoimmune Diet
I've posted these before but i'll do it again.
.
http://paleodietlifestyle.com/dealing-with-autoimmune-diseases-and-digestive-problems/
"Let me reitterate that it’s really important that you stick to this stricker version of the diet 100% because only one little intruder will tend to mess everything."
http://paleodietnews.com/2494/cooling-inflammation-with-the-paleo-diet/
http://www.eat-real-food-paleodietitian.com/support-files/sibo-gut-healing-protocol.pdf
 
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I've never done Paleo since I can't eat any form of starch without feeling like I ate glass for 3-4 days. My GIs haven't ever told me not to watch my diet since it definitely is the culprit of the pain, inflammation and shut down of my colon. (As a matter of fact the first one told me no more starch ever and my newest one told me that sounds logical to me so don't eat it. Now she didn't say that's all I should do though.) I had to learn so much more about food and enzymes than I ever wanted to know. I learned a lot though. There's a difference between amylose and amylpectin forms of starch and different enzymes break them down into glucose. I have what I need for amylpectin and no Amylase to break down Amylose. Nuts are processed differently so I can tolerate most nuts but cashews and peanuts are too much. I could never figure out why I could tolerate beans better than other starches when they are full of starch. Turns out they have antiamylase and your body ferments them through the system so they are known as resistant starches. Hence, Amylase has no effect on them. Green bananas always killed me and I didn't like bananas unless they were super ripe. Turns out bananas are full of starch and turn to sugar as they ripen. I can eat them now if the skin is black and I can NEVER touch a banana from a regular grocery store. Why? Because they gas them when they are not ripe so they look ripe. This is true of all vegetables and fruits in stores so do yourself a favor and only buy from a farmer's market or vegetable stand.

Starch is in almost all curing, preservatives, thickeners, etc so I have to know the name of every form of it and read every ingredient on every label every time. Foods change their ingredients constantly and if I slack off, I'm in agony for days.

Starch is used as a binder and filler so it's in all pill and capsule forms of drugs/vitamins and most liquid forms. For me that means if it's not compounded, I'm not taking it. No exceptions. If I don't know, I refuse it. No exceptions.

Starch is also used in things like commercial yogurts, ice cream, chocolates, salad dressings, etc. When this first started, I threw out all food, meds, vitamins, dressings and seasonings. All of it. And at that time no one said you have Crohn's. I took one look at my endoscopy/colonoscopy reports and thought about how my father and niece died of stomach cancer. It all went. When I'm tempted, I take out those pictures and look at them and it turns my stomach. I can't even tell you how many times I've refused to eat because I'm not sure. I am just not doing it.

Anyway, I learned more about this stuff than I ever cared to know. Most recently I found out my body makes Amylase so it's not releasing it right which means my digestive system doesn't send the signal to say I've eaten starch. No wonder it feels like I've eaten glass for days. Without Amylase, my body cannot digest any starch with Amylose. It's that simple. I don't need a doctor to tell me that - all the research is online. For Amylase deficiency that I have every symptom but one.

No other foods bother me at all and in two years, my erosion of the esophagus and two ulcers healed. No matter what else I do, I'm going to continue to avoid the starch. It's hard and it's basically ruined my life, but I refuse to feel that kind of pain and watch my right side look like I have a tumor.

I hope this helps you. Listen to your body. If you look at what bothers you and really research the chemical composition, I have a feeling you are going to be very surprised when you find a pattern.

Give up your meds? Not sure about that, but diet certainly can't hurt.
 
I was looking into doing the paleo diet for some time now. I have not yet been dx with crohns disease, I am still doing the whole song and dance with my GI doc. He says IBS. I am not so sure. I have not been through any tests yet as my GI doc says there are risks with the tests. He wants me to try a couple different meds first before we do testing. I have been suffering for the last year, more so the last four months though have been the worst.

I also have other chronic health issues so I have seen many many doctors and specialists over the last 9 years. I will say this, chronic illnesses are not very well understood, especially by western med doctors. They just do not have the knowledge at this point as these diseases are just so complex.

As far as what causes crohns or any other of these different diseases, I have to say that it could be any number of things from bacteria, to viruses, to parasites, who the heck knows. What ever the reason, it is something that ignites the immune system into going haywire. Our DNA also play a huge factor in how our bodies respond to these different afflictions.

Interestingly, when my gut issues started this last year I was already on a very bland diet sort of speak due to all my other health issues. My diet consists of the following foods; roasted chicken, salmon, or roasted turkey. Those are the meats I eat. Brown rice, quinoa, or boiled potatoes are my carbs, and for vegis I usually would eat carrots, or very soft cooked green beans. I only drink water which is 7.5 on the alkaline scale and a cup of chammomile tea every morning, sometimes with a little honey. I have been gluten free for the last five years. So as you can see, my diet has been pretty healthy for the most part , even before all my gut issues started.

I do have a theory as to why my gut is messed up though. I have IC( interstitial cystitis) which is another chronic disease of the bladder. I also get chronic UTI's. Because of this I was put on a low dose antibitoic(keflex) daily for the last 4 years. I am certain that the antibitoic is one of the reasons my gut is in the state it is now. I just do not know what to do as havine chronic severe UTI's is not good for you either. I have also read that antibitoics can cause crohns disease. This is worries me.

Anyhow, I am going to look into the paleo diet as I do believe that diet does play a huge role in our overall health all around, meaning us, people who do have chronic illnesses. Not that eating poorly will cause any person to get a disease like crohns, that is not true. My brother eats horribly and drinks lots and lots of alcohol and he is healthier than me!! So again, I think it just depneds on the person.

A question about the plaeo diet I have: I am unable to tolerate any type of vegetable unless it is cooked extremely soft. Also, I cannot tolerate eggs or beef, they upset my gut. Nuts are an absolute no for me as well. Just wondering if one starts a diet like this, should it be under the supervision of a nutritionist???
 
Ihurt said:
A question about the plaeo diet I have: I am unable to tolerate any type of vegetable unless it is cooked extremely soft. Also, I cannot tolerate eggs or beef, they upset my gut. Nuts are an absolute no for me as well. Just wondering if one starts a diet like this, should it be under the supervision of a nutritionist???
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That depends on your health,
I'd definitely find help if i was already 'at deaths door' but if your in a good place at the moment you can try it and go to your GI if you feel you need to.
This is only my opinion and you need to monitor your health

It would be good to line up a nutritionist so you don't have to look when you feel bad.

If you can find a sympathetic 'paleo - friendly' nutritionist then great, but there's no point going to a SAD (standard american diet) nutritionist.

Everybody has their own take on Paleo, generally based on either what works for them or what they want to believe.

Start with a restricted immune friendly version and add from that
I'd stop potatoes - but sweet potatoes are ok
I've found white rice to be a safe cheat FOR ME, maybe for you to, but keep it for a last resort.
Juicing (vegetables - not fruit) is a good way to get high quality nutrition.
Bananas are safe snacks
Check out the limk i posted earlier
http://www.eat-real-food-paleodietitian.com/support-files/sibo-gut-healing-protocol.pdf

@ Acemagic - stay away from potatoes for now. rice is safe but potatoes are proven to contain high levels of glycoalkaloids - a proven cause of intestinal permeability.
Yes they are paleo 'legal' (although there is lots of debate in paleo world) but they are not a good idea for autoimmune sufferers
 
Thanks for the reply. I am going to give the diet a try. I have a brand new juicer so I will also try the vegi juicing. When you do the juicing, does it cause diareha? How much would you drink in a day and which vegis are considered safe??
 
That's wonderful about the lack of cramping, other than a bit when on the porcelain god. That's one of the first items I noticed on the paleo diet, the cramping went away. I stopped farting. Well, I rarely fart anymore, and when I do they rarely stink. I never saw that mentioned as a selling point for why to eat this way, but as an IBD'er it gets a hearty big thumbs up! :thumleft:

My guess about the smelly gas, it probably came from some of the fast foods eaten. Maybe the coleslaw. Hard to say.

There is bacon sold that is advertised as nitrate free. What it has though is celery juice in it, which is naturally high in nitrates. So overall if you are feeling well, and the bacon doesn't seem to be bothering the gut, I'd stick with what you are doing. Lots of paleo eaters enjoy their bacon from what I read.

With that said, of all the meats in the paleo community pork has received some concerns. One writing from the Hunter-Gather web sight on that:

"The trouble with pork"

http://hunter-gatherer.com/blog/trouble-pork

As for weight gain, I guess if there was any advice I could give it would be to concentrate on being well to the gut. Once you have the intestines in working order, the weight should come. It will take time but it will happen. That is one of the nice items often mentioned about paleo eaters, we tend to grow thin and muscular. Since I began eating this way, I've put on a little over 30lbs. I lift weights a few times a week, but have sometimes wondered if the diet isn't playing a bigger part in the gain I've experienced. Once again, hard to say.

Arthur de Vanny, is sometimes referred to as the grandfather of paleo eating. Now in his early 70s, he and his wife are looking great being thin and muscular. If I remember correctly, Arthur has written some about muscle weight gain seen with paleo eating.

http://www.arthurdevany.com/

Good luck! Hope all continues to go well.
 
@ Beach -i love bacon but i've always been a bit suspect of the pig, thanks for those links

@Ihurt - those questions i can't answer,
I would take it easy on the juice to begin, you need to do the bland, overcooked, monotonous, safe but totally paleo thing to begin with.

It depends on your stomach (and your juicer, - some have alot of pulp (fibre) so you may want to strain it)
My favourite was carrot and beetroot with spinach/kale/cabbage.

There is a movie out there called "Fat, Sick and Nearly Dead" about a guy with a different AI (chronic Urticaria) who drank nothing but juice for 30 days (one guy went 60 days), but they both had alot of fat to live off.
But it proves that you can live on juice (and fat)

It's not a juicing diet, the juice is just a nice way of getting nutrition.

It's about strictly avoiding 'neolithic' foods, basically anything that wouldn't have been available before agriculture.

I believe it's about intestinal permeability and gut flora.

If you feel you need help there are a couple of people who offer it for a very reasonable fee (less than $40 with a one year money back guarantee i think) - i have no affiliation to them and don't subscribe to their service (but i do receive their free emails and read their blog).
-they will be more help than me so pm me if you want the name as i don't want to advertise a service i haven't used

Remember, my opinion is only my opinion, this is your journey and i wish you well.
 
Meh, ok, this is what I think.

I don't think diet actually helps that much unless you are completely in remission and then use the diet to stay in remission. A diet will not knock you into remission if you aren't already. I think diets are overrated as a "cure", I think herbs are underrated since many are potent cytokine inhibitors and many are able to kill macrophages. But not trying to alter your diet to accommodate your disease is just as stupid, if we know milk is full of MAP, why are you still drinking milk, if you know something is hard to digest, why try it right, why not avoid it.

The discussion about suppressing the immune system when crohn is likely bacteria. On the one hand it sounds completely idiotic, and I think anyone who says it's idiotic is partly right. What it does do is lower inflammation by lowering TNF-α and it might actually in some weird way fight bacteria because the excess an inflammation in the mucosa is why the bacteria is thriving. Another thing is that E. Coli and MAP exploit TNF-Alpha and macrophages, macrophages are able to engulf MAP but MAP is multiplying inside the macrophage.

On the other hand, it's still stupid because it doesn't target the cause at all, people aren't getting better with suppressing the immune system all, they are at best in remission, and many people (University College London) have asked how wise it is to suppress the immune system when you're dealing with a bacteria, in the long run they believe it might actually worsen crohn.

Antibiotics do affect crohn, which is another reason why the autoimmune theory is complete and utter bullocks, it's a bacteria, TNF increases, you get inflammation, and some drugs suppress the inflammation but they are not going after the cause, the bacteria. And why would they, companies don't give a **** if you get cured or not, the longer they hold a cure off the more money they are making from you. That's why there is so little research interested in herbs, in diets, in antibiotics (most used for crohn are cheap as hell because anyone is allowed to make the ones for TB), because there is little money in it. You have to realise how much money the companies are making on these things that suppress the immune system, billions.

So, I don't think a diet helps that much because it's not that powerful against intracellular bacteria, but a diet combined with the right herbs that lower cytokine and kill macrophages and some probiotics might work much better. I think relying on a diet alone is not going to do much, unless you are for some reason, already in remission, and even then, some diets like the SCD diet are good on the one hand because they lower sugar, but stupid on the other because they exclude short chain fatty acids needed to repair the intestine.
 
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Acemagic -

I LOVE your hypothesis about three types of foods for Chron's disease: 1) those that cause the disease, but don't feel bad when you eat them (e.g., pasta) 2) those that irritate you when you eat them while flaring (vegetables, fruit) and 3) those that are safe.

I agree with your hypothesis and often think along these parameters when I try to decide what to eat.

I greatly appreciate this thread. This is the type of discussion I would like to have with friends but can't.
 
kiny said:
I don't think diet actually helps that much unless you are completely in remission and then use the diet to stay in remission. A diet will not knock you into remission if you aren't already. I think diets are overrated as a "cure", I think herbs are underrated since many are potent cytokine inhibitors and many are able to kill macrophages.
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There is study after study showing the efficacy of enteral nutrition. It has the same remission induction rates as prednisone when stuck with. And enteral nutrition is a form of diet. A form of diet that doesn't (directly) kill bacteria or inhibit TNFa and yet it works.

Diet works. Not for everyone, but it can most definitely work.
 
I've been in remission for 13 years after severe Crohn's for 35 years or so, numerous resections and associated operations and, finally, a proctocolectomy and ileostomy. I have been on no medication since the proctocolectomy.

I am fine with lamb, rabbit, turkey, occasional beef but not pork or chicken; most fish, but not shellfish (except scallops) or crustaceans. Not soy in any form.

I eat limited white bread, usually sourdough and organic, white spelt if I can get it and oats for breakfast (as porridge - I can't cope with uncooked oats). No roughage grains.

Potatoes, sweet potatoes, only leeks (well cooked) in the onion family, no chillies but well-cooked red capsicum, celariac, fennel, eggplant and various other vegetables - all cooked.

I can't cope with pulses at all. (I spend hours picking through green beans to get tiny ones with the seeds undeveloped.)

Milk and almost all milk products have always been lifesavers with me. There are a few cheeses, like blue cheese, that I can't cope with.

Few fruits - bananas (one a day), apples, if I peel and grate them or chew very thoroughly, stewed plums, watermelon, pureed and sieved berries in small quantities and that's about it.

Sorry that this has been so long, but I find it hard to categorise my positive foods except that - and this is the bit that will bring out the extreme reactions - I follow an adapted (because of avoiding roughage and irritants) Blood Type diet for B+. Before anyone leaps up and shouts "Nonsense", "voodoo" or the like, just remember that I have been in remission for 13 years on no medication.
 
David said:
There is study after study showing the efficacy of enteral nutrition. It has the same remission induction rates as prednisone when stuck with. And enteral nutrition is a form of diet. A form of diet that doesn't (directly) kill bacteria or inhibit TNFa and yet it works.

Diet works. Not for everyone, but it can most definitely work.
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I've seen the study and it showed what you said, think it was you who linked it.

My gripe with diets is this:

*many times I have seen people say, I do diet X, even though diet X has nothing to do with crohn, was not tested for crohn and no one is able to say why it works, they just do it, because it's a "good diet"

*my assumption is that crohn is a bacterial infection (it's one of the main theories right now) and those bacteria are incredibly nasty, it would be akin to someone saying that they can cure tuberculosis with a diet, everyone would tell that person they are out of their mind

*many people who say diet X works are on meds, how can you possibly know it's the diet if you're taking meds

*many people are losing weight on diets because many are excluding fats, sugar and protein, the consequence is rapid weight loss

*SCD diet is a diet many biologists wonder about because it's low on short chain fatty acids, you need those to repair tissue, so how does it make sense to recommend something like that for crohn. On the other hand recommending lower carbs like the SCD does does make sense, but lower SCFA does not, which the SCD diet does.

Those issues bother me when ppl say "diet works", yeah, maybe it does, but I still need to see the first person, not on meds, who is in a flare, who stopped the flare through a diet. Sure diet might work for long term therapy for someone in remission, but for someone in flare who is already not eating much, and they then go on a diet, that's a good way to make your disease far worse, they will lose weight and I bet they will end up being worse than better. Diet when in remission, why not.
 
kiny said:
I've seen the study and it showed what you said, think it was you who linked it.
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Studies. There are a lot of studies that corroborate that enteral nutrition is efficacious.

kiny said:
*many times I have seen people say, I do diet X, even though diet X has nothing to do with crohn, was not tested for crohn and no one is able to say why it works, they just do it, because it's a "good diet"
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I'd be concerned as well. If we're going to try to help control our diseases with diet, it needs to come from well-researched information and tracking what you can consume so that you can change the diet to fit your own needs as you get data.

kiny said:
my assumption is that crohn is a bacterial infection (it's one of the main theories right now) and those bacteria are incredibly nasty, it would be akin to someone saying that they can cure tuberculosis with a diet, everyone would tell that person they are out of their mind
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I was going to say, "Nobody is claiming to cure their Crohn's though" and then looked at the thread title :D I don't believe diet is going to cure Crohn's, but I believe it can lead to remission. Or even better, diet along with other treatments can lead to remission and help you stay there.

kiny said:
many people who say diet X works are on meds, how can you possibly know it's the diet if you're taking meds
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How can they possibly know that their meds are working when their diet is potentially the cause for the remission ;)

kiny said:
many people are losing weight on diets because many are excluding fats, sugar and protein, the consequence is rapid weight loss
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I agree that it is vitally important to make sure that all nutritional needs are being met with any diet.

kiny said:
SCD diet is a diet many biologists wonder about because it's low on short chain fatty acids, you need those to repair tissue, so how does it make sense to recommend something like that for crohn. On the other hand recommending lower carbs like the SCD does does make sense, but lower SCFA does not, which the SCD diet does.
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What we know is we don't know everything. Who knows why the SCD works for some people but if it does, it does. Heck, they don't even understand why prednisone works and it is an OLD medication. But if something works, it works. A doctor friend of mine has a great saying, "It works in practice but not in theory".

kiny said:
Those issues bother me when ppl say "diet works", yeah, maybe it does, but I still need to see the first person, not on meds, who is in a flare, who stopped the flare through a diet. Sure diet might work for long term therapy for someone in remission, but for someone in flare who is already not eating much, and they then go on a diet, that's a good way to make your disease far worse, they will lose weight and I bet they will end up being worse than better. Diet when in remission, why not.
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Give this book a read. I think the data found in it might give you a new perspective.
 
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David said:
There is study after study showing the efficacy of enteral nutrition. It has the same remission induction rates as prednisone when stuck with. And enteral nutrition is a form of diet. A form of diet that doesn't (directly) kill bacteria or inhibit TNFa and yet it works.

Diet works. Not for everyone, but it can most definitely work.
Click to expand...

Thanks for this. I'm new to this, but it is what I strongly suspect. I have to look at the fact that when this started two years ago, I suddenly had erosion in the esophagus and colon and two ulcers. This after no problems at all (not even a stomach ache or diarrhea or gas or acid) in my entire life except when I had the rare flu that everyone else had with the same symptoms. Onset was immediate when I suddenly moved to a country where starch dominates the foods eaten and that was the one ingredient that I never liked, it never tasted right and it made me gain weight like crazy. So there was always something not working right there and moving to a place where it was in everything caused my body to react within two months. (When your right side pops out to the point where you can't wear your clothes within two months, that's pretty extreme.) I know it wasn't H-pylori or the C bug because they tested for it in biopsies along with everything else. I might have been in Latin America but they tested me for everything from end to end. They explained everything to me. The GI told me to stop eating starch.

Two years later the erosion in my esophagus and my two ulcers are gone. And before you say that wasn't Crohn's, we don't know that because Crohn's can be all the way through even in the mouth, it's just not common. It also isn't common to have it show up in someone who is 52 with no diarrhea, cramps or blood. So right now it's possible but can't be verified.

Yes, my GI had me on Omeprazole, but that does not cure erosion or ulcers so the only thing left is diet.

I did a few simple things:

  • Cut starch (because that was my trigger)
  • Ate organic yogurt because it has the good stuff and no added starch
  • Took probiotics and digestive enzymes
  • Ate only lean chicken and fish (cooked in olive oil with no seasoning), spring mix (or other colorful lettuce with only olive oil, no vinegar), colorful veggies and a variety of very, very ripe fruits
  • Cut acidic juices (goodbye cranberry and pomengranate juice) and only ate the fruit
  • Took starchless vitamins
  • Drank Aloe juice with chunks of aloe in it

Nobody told me to do all of this. I did it because it made sense to me. Your gut is all about balance and somehow (probably because Naproxen ate holes in me) my body got out of balance. It perceived starch (which I ate when I took Naproxen) as the enemy and began to attack (inflammation). The rest was probably just a cascading effect of one problem leading to another. So it made sense to me to A) get rid of the trigger, since starch is the most useless food ever anyway and easy to replace for nutrients and fiber; B) take enzymes, probiotics and vitamins to get my body back in balance; and C) take something internally cooling to get the inflammation down.

I did about 400 hours of research on the chemical composition of starchy food and how the body breaks it down and what can go wrong with it (that's how I came to understand Amylase and how it breaks down starch into sugar so you can digest it). I had my brother, who is a researcher, pull all of the research we normal people can't see to find out what else they know. Then I made a decision and took a shot. When I told my GI in Costa Rica he was fine with it. When I told my GI here what I did, she was fine with it. I didn't go crazy, I just used deduction and common sense.

Diet is not a one size fits all treatment or cure. You really need to understand food and your own body in depth. My diet would not work for the majority of you because you problems and symptoms are different. You need to understand how it all works together. If you aren't willing to do the research and you can't be committed to the resulting diet (enough to leave a $50 meal sitting on a table while everyone else eats around you because it's dangerous to you) then you aren't going to be able to have success. Diet change is an intense commitment that requires a lot of work. It's hard to do under the best of circumstances and most of us are already so sick and in so much pain that it's hard to think straight let alone read hundreds of hours of research and stick to a diet that is very hard when our lives are already hell.

At the end of the day, each of us must make our own choice and take responsibility for the consequences. When my GI comes to me with suggested treatment, I'll be responsible to know everything about those drug options, their efficacy and side effects and make the best choice I can. I'm the only one who will live (or not) with the consequences so it's up to me. I'm not going to judge anyone on this board because we're all just doing the best we can to feel better and survive. But I will say approach everything with an open mind because science discovers things all the time that discount or change previous theories. If we aren't open to at least looking at those, we only hurt ourselves in the end.
 
ZM, based upon what you're saying, you may want to get this book or research the Specific Carbohydrate Diet. It may connect some dots for you and give you other ideas. The paleo diet discussed in this thread will also likely be interesting for you to learn about.
 
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Interesting. SCD's premise seems exactly like mine and follows exactly what I think happened to me right down to the increase in waste:

  1. When the body receives complex carbohydrates (disaccharides or polysaccharides), these substances must be broken down before they can be absorbed.
  2. In the body of a person who is not able to break these substances down efficiently, an influx of undigested material causes harmful bacteria to flourish.
  3. Bacterial overgrowth is accordingly followed by a significant increase in the waste and other irritants they produce.
  4. Irritation in the lining of the digestive tract results in the overproduction of mucus and injury to the digestive tract, which in turn causes malabsorption and makes it even more difficult to maintain proper digestion.

I do believe I looked at it this way of eating at one point, but I will take another look at it. Paleo has to be scaled way back for me because alot of things it allows, I can't eat. SCD is probably closer to what I can do.

Oddly enough, milk doesn't bother me at all and never has. I count my lucky stars there because when I travel it's all I can have on the plane. Having nothing for 20 hours is tough.

Thanks for this!
 
ZM1019 said:
Interesting. SCD's premise seems exactly like mine and follows exactly what I think happened to me right down to the increase in waste:

  1. When the body receives complex carbohydrates (disaccharides or polysaccharides), these substances must be broken down before they can be absorbed.
  2. In the body of a person who is not able to break these substances down efficiently, an influx of undigested material causes harmful bacteria to flourish.
  3. Bacterial overgrowth is accordingly followed by a significant increase in the waste and other irritants they produce.
  4. Irritation in the lining of the digestive tract results in the overproduction of mucus and injury to the digestive tract, which in turn causes malabsorption and makes it even more difficult to maintain proper digestion.
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See, some stuff she says in the book makes sense, but here the issues I have with the book beging, what is she writing about, mucous collitis or crohn, or does she believe it's one and the same. She never mentions inflammation through excess tnf-alpha production, she thinks it's mucus overproduction. So what is it...if it's mucus overproduction then how come lowering TNF is stopping inflammation. I mean the stuff she says makes sense, but she says a lot of stuff that has nothing to do with crohn specifically, she uses that theory for multiple diseases.

I think the SCD diet might help, if someone changes it to work for crohn specifically with good research behind it, and the issue of SCFA is solved.


what she says:

"a significant increase in the waste and other irritants they produce"



what actually happens in cows with johne's:

"mucosal tissue damage results primarily from severe immune pathology and chronic inflammation.In the late stage of the disease, large numbers of acid-fast bacilli (AFB) are found in lesions (3, 6)."

what she says makes sense, but I don't think it's that powerful, diet that is, unless you are in remission, and the excess TNF is resolved, then maybe to stay in remission, but I don't think going from flare to remission with a diet is possible.
 
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Another thing is, let's say someone wants to claim that going from a flare into remission is possible with a diet. How come, that there are so many people who stop eating altogether don't go into remission at all.

If it was that simple that you only needed to avoid X and Y, and avoid waste and slow digesting carbs (that's her theory, she has no issues with fast digesting carbs like honey) like the SCD diet, then how come everyon who stops eating, and many do with crohn, get sicker and the inflammation doesn't go away.

The inflammation and excess TNF are NOT going to go away by changing to a diet, it would take years to starve a bacteria, and even then, they can see bacteria can survive in very harsh conditions, they adapt, deplete them in iron and sugar and they simply adapt and survive. Once you are in remission I believe in it, but a diet that knocks you from a flare straight into remission, I do not believe that, the inflammation will stay for those people and they will just lose weight.
 
kiny said:
Another thing is, let's say someone wants to claim that going from a flare into remission is possible with a diet. How come, that there are so many people who stop eating altogether don't go into remission at all.
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Remember your theory (I think it's a theory of yours at least) that Crohn's Disease is an immunodeficiency? I agree with that. I think that vitamin, mineral, and other nutrients play a vital role in disease pathogenesis. Stop consuming any forms of nutrients and the available nutrients become further or completely depleted and the cycle continues.

Inflammation can go away with enteral nutrition. It can even promote mucosal healing.

And I think you're focusing on TNFa a little too much. Yes, some of these medications are marketed as TNFa blockers but why then did Enbrel do worse than placebo in trials and it's a TNFa blocker?

Now, I absolutely believe that your bacteria play a role. But ponder the idea that the bacteria might be taking up more than their fair share of various vitamins and minerals and other nutrients OR not producing them or synthesizing them like they usually do and what might result. The result can have cascading affects, and those affects would be different in various phenotypes. Throw enteral nutrition into the fray and the body gets all its nutrients and the bacteria get their nutrients and everyone is happy. Go on the SCD and don't provide food to a specific type of bacteria that out-compete bacteria that synthesize vitamin B2 which is causing iron deficiency anemia which is causing which is causing which is causing (so many cascading affects)... and once they're no longer an overgrowth and you're getting vitamin B2 again, then homeostasis returns. This is just one of a million potential reasons why diet can help or hinder.
 
I think everyone has to do a lot of research for themselves. Some things she says are legal, I could never eat because they do contain starch that is an amylose starch. Some of those foods are low starch, not no starch. Some she says are illegal are fine with my body which couldn't care less about milk but that would probably do most of you in. I don't believe any diet, including the diets given by Crohn's specialists, are one size fits all. I could never be on the diet that most of you have been given. It would put me in the hospital in three days.

Also, inflammation is a symptom of a problem that is not just different for the different diseases, but different in the different people within those diseases. If that wasn't true everyone could be on the same medication for the same length of time to get it under control. So that is why some people won't respond to diet alone. I don't believe that inflammation can't go away in anyone with diet alone any more than I believe that inflammation will go away for everyone with diet alone. What I do believe is everyone is different and there are no cookie cutter solutions.

I also believe that the drugs used now are treating symptoms and not the underlying cause and that not a lot is known about those drugs or how they work. If you read about those drugs, none of them purport to be effective for everyone with Crohn's. Lowering TNF works in some but not in others and some go into remission for years and others don't. It's the same thing. This is a disease in its research infancy. In 20 years it is very possible they won't use TNF inhibitors at all. It's very possible that they will be in the exact same place as researchers are with migraines where they keep realizing that they thought they knew the ultimate causal factor but in fact they were only treating a symptom. Once they treat the symptom successfully, they find out there is something behind that and something behind that and so on. This is the case with most research for illnesses or abnormal functions.

I'm more of the opinion of this is what we know right now. Nothing has been proven beyond a shadow of a doubt. It is imperfect and not the end of the story. All we as sufferers can do is find out as much as we can, talk to our doctors as much as we can and make the best decisions for ourselves based on as much as we can.
 
David said:
The result can have cascading affects, and those affects would be different in various phenotypes.
Click to expand...


This is something my GI pointed out when I first saw her and one of the reasons I like her. She gave me a list of tests she was going to do and said more were coming. Then, she told me that one problem can lead to another and another in a cascading effect. She said that she needed to uncover all of the problems, assess them and then determine in what order she needed to treat them and what she needed to use. She said this was important because if she did not treat them in the correct order with the correct things, she could end up causing other problems. She told me that if I had multiple problems, it was all about the balancing act but that we would figure it out and come up with a plan. It sounded very logical to me.
 
I love that your GI sat down with you and explained something like that :) If she is on the gulf coast, PM me as I need a new GI :D
 
Wow, there's a lot of good discussion here. First and foremost:

David said:
I was going to say, "Nobody is claiming to cure their Crohn's though" and then looked at the thread title :D I don't believe diet is going to cure Crohn's, but I believe it can lead to remission. Or even better, diet along with other treatments can lead to remission and help you stay there.
Click to expand...

Yeah I'm sorry about that. I actually re-thought about that about a week ago. It really should have read "This is how I'm going to put my Crohn's into remission"

To be honest, I don't know for sure if diet is going to make a lick of difference. As you mentioned, everyone is different, and there are no real solutions available. But most of us are also grasping at straws and the general consensus is that diet seems to matter. I just don't personally feel that we should sit back idly and assume that just because it hasn't been proven that diet plays a factor in treatment of the disease, that we shouldn't try to take a look at the broken evidence that does exist and take our best shot at it. As someone mentioned earlier, there's no money in that, so no one is going to do the research. If I come to you and ask you for 5 million dollars to conduct a study on diet, but if it doesn't pan out you're going to lose your 5 million, but if it DOES pan out, you'll help a lot of people, but you're still going to lose 5 million dollars....well...there's not a lot of people who would jump on that opportunity.

From what I've read, SCD has had a good deal of success, but doesn't work for everyone. Paleo seems to have a slightly better rate of success (again, just from what i've read). Does it work 100% of the time? Absolutely not. Do we know why it works? Nope. But there are thousands of people on this diet and the testimonials I have been reading (from Hugh and Beach and others on this forum and other forums) lead me to believe that my best bet for healing is to remove a lot of the junk in my diet.

Also, regarding meds, I'm just not a big fan. I've been med free for years, but I've also had a poor diet. I've tried almost every medication available to us and have always felt that the side effects were worse than the disease. Plus, many of the meds offered to us have long-term side effects (like "Can Cause Cancer") and with our already increased risk at developing bowel cancer, I'm not too interested to go on them. So yes, maybe it's really dumb, but I've been down that road. I ignored diet for 14 years and took all my meds like a good boy. It got me 3 resections within 14 years and my gall bladder and appendix out. I'm a results oriented person, and I wasn't getting the results I wanted. Cause and effect.

As someone mentioned...we know very little about the disease, but everyone wants to get better. Based on the information available to us and from everything I've read and people I've talked to and my personal experiences, this is the path I'm going on (diet and supplements, herbs etc). If it bombs, so be it. Next surgery, I'll try something else, but for the time being, it's my best odds at achieving REMISSION ;)

-Adam
 
this link sums it up for me........
http://www.swaraj.org/shikshantar/swimology.htm.
less talk, more healing:lol2:

burger.jpg
 
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Hey everyone,

Day 19 on Paleo.

I haven't gained anymore weight unfortunately, I'm still sitting at 124. I saw my Naturopath yesterday (who seems to be very good) and when I mentioned I was on paleo, she wholehartedly agreed that it's a very good place to be, regardless if you have Crohn's or not.

She said that my gut is still probably leaky and potentially inflamed / still healing from surgery, so the first step is to heal the gut so it can absorb nutrients better, and the weight gain will come after that. So I'm taking L-Glutamine for the leaky gut and strong probiotics. I was tested for Candida before my surgery and there was a slightly higher than normal amount, so we're going to try a mild cleanse in a week's time. She's also been treating me with NAET (which I think is totally hokey and crazy, but I'm willing to try everything and she says she's had good success with it).

Energy levels seem to be a bit down today, and the cramps that I get before a BM are pretty intense. I'm thinking I may have jumped onto "nuts" too quickly. I feel like I'm pooping razor blades. Other than that and occasional copious amounts of gas, I'm pain free. No cramping every few minutes. I think I can safely attribute that to the surgery, however, not necessarily the diet.

I'll be trying out the new juicer tonight too! It arrived yesterday!

-Adam
 
I love this forum! And my friends on it! :) Love how we can discuss and debate, all of it for our own health's sake. And just when my brain goes into overload, in comes Hugh to make me laugh out loud. Thanks everyone!
 
acemagic said:
Hey everyone,

Day 19 on Paleo.
I'm thinking I may have jumped onto "nuts" too quickly. I feel like I'm pooping razor blades.

-Adam
Click to expand...

I'd stay away from nuts for a while longer, they can irritate,
In a while try nut flour as you get to trial nuts without the abrasiveness of chewed up nuts, also soaking in water overnight might help but you don't need them on paleo
(i'll try to post some paleo nut muffin recipes soon)

I'd be interested in which 'version' of paleo you are flowing (low fat,high fat etc).
A good resource......
Paleo Principles – Blog Posts You Should Read
http://www.paleoplan.com/resources/paleo-principles-blog-posts-you-should-read/

This might be of interest
Paleo Diet Myths http://www.youtube.com/watch?v=UmmUlgckXF4
- i'd still avoid nightshades (because of glycoalcaloids?)
 
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Hugh - You've really been a help to those of us who are trying to Paleo-ize our diets. thanks for all the links. I've read so many different Paleo bloggers - some say yes this, no that; others say no this, yes that. Then I found this link (through one of your links):

http://chriskresser.com/beyond-paleo-moving-from-a-paleo-diet-to-a-paleo-template

I like the idea of making it a template. Especially with Crohn's, everyone has their individual triggers and tolerances, so I liked having more generalized guidelines than a list of "do" and "don't" eat.

I've been working on keeping to a Paleo-style diet for a little more than 10 days, and overall have so much more energy. I was primarily vegetarian before, and I didn't realize how much damage I was doing with raw veg and whole grains (which my brain said were good) and no protein (which I have found my gut really likes). I think the glutamine in the protein is helping me. My GI doc even said "you look good" yesterday...but he wasn't so happy to hear that I wasn't taking the meds he tried me on. When I started trying to talk to him about how I thought my diet changes were helping, he literally stood up and started walking toward the door (!). Well, he's referring me to another Dr now. Guess I am too radical!
 
Just to clarify a point- Quinoa is not a grain. It is actually a seed but it's appearance is grain like. Quinoa has more Omega 3 than Flax. Also, the problem with grains is the processing. Look at wheat in the field and then at bleached flour. I personally do my best to stay away from grains but if you must eat them, go for the least processed ones.

Adam, I think you are on the right track. Make sure you get enough healthy oils. Ease into ab exercises! Go slow with those. Learned my lesson on that one. Stress relief is essential. I tell people that diet, stress relief, and exercise are the 3 keys to staying in remission.

Good luck and good health!
Wendy
 
Ack Quinoa. Talk about feeling like you ate razor blades!

Sorry. I know most people can eat it but someone talked me into that once I had three days of pain so bad I couldn't sleep or concentrate. I won't even eat food that has been prepared any where around that because it gets into everything. Bad memories.
 
Quinoa contains saponins, which can damage the gut lining

@LaLaNapa - yup , i'm heading towards Archivore and Perfect Health diet, almost identical but arrived at from different thinking, I call it paleo based
 
Glad I'm not the only one that has trouble with nuts! It isn't particularly paleo, but I ate some spicy cashews the other day, seemed like a tasty treat at the time, but last night and this morning .... lets just say I'll be laying off nuts, cashews in particular, for a good long awhile. That wasn't any fun. And once that was over I got to workout at the gym! It was a leg day, which has the pleasant effect of hitting the stomach muscles also. I'm exhausted.

I can remember the days where I would anxiously check to see where my weight was. Any movement upwards was exciting. And I would wear as many cloths as possible, along with keys, shoes and occasionally a jacket. Anything to make myself heavier! I'm glad the paleo or primal diet helped me to put on some weight and muscle. I'm hoping the same happens for you.

No fun about the sharp pains when using the toilet. Along with the operation, I recall earlier in the thread a mention about normal bowel movements after taking a new drug. If that is the case, maybe a stool softener will be helpful. If I might suggest, the mineral magnesium has anti inflammatory effects, and softens stools. Possibly it could be helpful. Drinking water high in magnesium I guess would even be considered paleo. When our ancestors obtained drinking water from stream, it was higher in minerals, magnesium in particular. Along those lines, recall this article:

"Magnesium and you-Part I"

http://blog.trackyourplaque.com/2009/05/magnesium-and-you-part-i.html

snippet from the article:

If this were 10,000 B.C., you’d get your drinking water from streams, rivers, and lakes, all rich in mineral content. Humans became reliant on obtaining a considerable proportion of daily mineral needs from natural water sources.

21st century: We obtain drinking water from a spigot or plastic bottle. Pesticides and other chemicals seep into the water supply. Municipal water purification facilities have intensified water purification in most communities to remove contaminants like lead, pesticide residues, and nitrates. (For a really neat listing of the water quality of various cities, the University of Cincinnati makes this data available.)

But intensive water treatment also removes minerals like calcium and magnesium.

Many people have added water filters or purifiers to their homes,, like reverse osmosis and distillation, that are efficient at extracting any remaining minerals, converting “hard” into “soft” water. In fact, manufacturers of such devices boast of their power to yield pure water free of any “contaminant,” minerals like magnesium included. The magnesium content of water after passing through most commercial filters is zero.

Modern enthusiasm for bottled water has compounded the problem. Americans consumed a lot of bottled water, nearly 8 billion gallons last year. In the U.S., nearly all bottled water has little or no magnesium.

The result is that we can no longer rely on drinking water to provide magnesium. The Recommended Daily Allowance (RDA)—the amount required to prevent severe deficiency—for magnesium is 420 mg per day for men, 320 mg/day for women....
Click to expand...
 
hugh said:
I'd stay away from nuts for a while longer, they can irritate,
In a while try nut flour as you get to trial nuts without the abrasiveness of chewed up nuts, also soaking in water overnight might help but you don't need them on paleo
(i'll try to post some paleo nut muffin recipes soon)

I'd be interested in which 'version' of paleo you are flowing (low fat,high fat etc).
A good resource......
Paleo Principles – Blog Posts You Should Read
http://www.paleoplan.com/resources/paleo-principles-blog-posts-you-should-read/

This might be of interest
Paleo Diet Myths http://www.youtube.com/watch?v=UmmUlgckXF4
- i'd still avoid nightshades (because of glycoalcaloids?)
Click to expand...

Hugh,

As LaLanapa said, THANK YOU very much for your helpful posts. They're always great.

Matter of fact, thanks to EVERYONE who is helping me along (Beach, ZM, David & Kiny just to name a few!). This is exactly what I was hoping for.

In answer to your question, I'm not following a particular version that I'm aware of. I'm just sticking to fruits, veggies, nuts (but i'll try and reduce these based on your advice) and meats. No dairy, no grains, no refined sugar.

That being said, I rarely have the time to cook, so my Paleo is based on a lot of eating out. Lots of Vietnamese food (meat and veggies -- no noodles), eggs and bacon for breakfast, and some fruit, and for dinner, I'll usually BBQ a steak or chicken and steam some asparagus or broccoli. If I'm eating out for dinner, I'll usually eat at Nando's Chicken.

There's probably a "cheat" in there (the coleslaw has a mayo style sauce, but very minimal, and I eat the occasional Larabar -- not one with peanuts) and I occasionally have a glass of Moscato wine. Overall though, my diet is significantly better than the fried foods, potatoes and noodles diet I was on before. Matter of fact, its VASTLY different. I think I'm on the right track at the very least, even if I can't go forage for things myself ;)

-Adam
 
Beach said:
I can remember the days where I would anxiously check to see where my weight was. Any movement upwards was exciting. And I would wear as many cloths as possible, along with keys, shoes and occasionally a jacket. Anything to make myself heavier! I'm glad the paleo or primal diet helped me to put on some weight and muscle. I'm hoping the same happens for you.

No fun about the sharp pains when using the toilet. Along with the operation, I recall earlier in the thread a mention about normal bowel movements after taking a new drug. If that is the case, maybe a stool softener will be helpful. If I might suggest, the mineral magnesium has anti inflammatory effects, and softens stools. Possibly it could be helpful. Drinking water high in magnesium I guess would even be considered paleo. When our ancestors obtained drinking water from stream, it was higher in minerals, magnesium in particular. Along those lines, recall this article:
Click to expand...

Hey Beach,

Haha I can totally relate. I used to weigh myself with all my clothes on and tons of stuff in my pockets too....until my MOTHER found out and guilt tripped me into doing otherwise. Now I have to make sure I weigh myself in the morning with nothing but my boxers on so I can ensure I'm the most depressed possible ;)

The drug you're referring to is Cholestyramine. It's actually a stool BULKER. Without drugs, I end up going to the bathroom 12+ times a day, and it's always loose/watery. So the doc recommended this as a way to reduce that effect. But it might be working a little too well. Luckily, it's in powder form and the doc told me to experiment with it until I find a happy medium. I'm going to try and reduce the nuts in my diet and see how things are pain-wise. After I determine that, I'll play around with the Cholestyramine a bit more.

And in reference to magnesium, yup! I take 2 Calc/Mags every morning :) Along with Vitamin D!

-Adam
 
Well, nearly every time I ate a salad or Subway Veggie sandwich (both my former faves) it would feel like a weedwacker was going through my gut. In my rationalization I thought, "well at least it's healthy food doing that, not cookies and donuts". But I've been doing a lot more research and have found that especially during a flare it's best to have the veggies cooked to break them down a bit before ingesting, so I've been sticking to that. I recall the the SCD diet started that way too, even pureeing the carrots in soup and not eating them cooked.
 
Gotcha.

Yeah, in a flare, I would definitely agree that raw foods hurt like a b*tch and should be avoided. But veggies are good for you and if you're not in a flare and can tolerate them, I personally think they're a good idea.
 
That's all true. I think I just didn't realize I was in a flare. I'm coming to believe that I have a low, smoldering kind of inflammation. As my diet deteriorated I gradually had more and more symptoms. So now that I've backed off on all of that I can see that indeed the inflammation was (is) active.

But I am so grateful that you started this thread and wrote about the Paleo Diet. I was thinking about restarting SCD but it was really difficult, and I didn't agree with everything she had allowed (saccharin?!). The Paleo seems manageable, but probably because I understand the principles better. And I love coconut - I've made coconut flour cookies twice.

You should try some home cooking :) Of course, I just like to cook it myself because I like the control over it. (Control freak.) I panic now when we will be eating out of the house and don't know how the food is being prepared. But we used to eat out all of the time so I guess all that money in the dining budget goes in to groceries now. It's a little more expensive being a carnivore than a vegetarian!
 
Hope you don't mind me chiming in...it's late so please bear with me...I'd like to throw a few things out there and try to make as much sense as possible....give some thought (keeping in mind I have not read all the replies in this very interesting post--it's late--) so forgive me if I repeat anything that's already been discussed.

Most of this is according to research so I won't keep repeating it with each "topic/theory"

Researchers have discovered bacterias that differ between CDers and Ucers that non-IBders don't have and these bacterias even differ some between the CDers and UCers which play a huge role in IBD and how the immune system attacks otherwise harmless bacteria(s).

There are at least 9 different gene clusters that contribute to the development of IBD and define the severity and behaviour of the disease over time. Some of these genes encode factors involved in recognition and defense against bacteria. Mutations in immune response genes may adversely affect how the immune system reacts to harmless bacteria and this probably contributes to the development of IBD. Also why IBD is likely so individualistic because it's coded into your genes as to how it will behave and the severity as well.

Cigarette smoking is one of the strongest known envrionmental risk factors (trigger) for the development of Crohn's disease. There's even evidence that second-hand smoke may increase the risk of children developing IBD (either UC or CD). This does not mean that smoking/second-hand smoke is necessarily every CDers trigger either...Birth control pills are also strongly suspected as being an envrionmental trigger for IBD.

Dr. Kathy Siminovich and her team of IBD researchers have identified one of the genes that predispose development of crohn's disease. The gene is located on chromosome 5 and normally produces a protein that sits on the cell surface and controls movement of specific substances in and out of the cell. When altered (scratched), the gene produces a protein that functions improperly, allowing toxins increased entry into the cell. This gene alteration is primarily observed in crohn's disease.

Hormones play a huge role in IBD, often the reason why most women find they have "mini flares" or increased flare symptoms just before/during/just after their menstral cycle. Also why some women may go into remisson/stay the same/get worse with their disease during pregnancy.

Diet has not been completely ruled out as a "trigger" for IBD....it may not necessarily be the type of food itself, it may be the types of bacterias that are on/in foods that are the issue.

There are 5 subtypes of crohn's disease;

The five types of Crohn's disease with their symptoms are:

-Ileocolitis: Ileocolitis is the most common type of Crohn's disease. It affects the small intestine, known as the ileum, and the colon. People who have ileocolitis experience considerable weight loss, diarrhea, and cramping or pain in the middle or lower right part of the abdomen.

-Ileitis: This type of Crohn's disease affects the ileum. Symptoms are the same as those for ileocolitis. In addition, fistulas, or inflammatory abscesses, may form in the lower right section of the abdomen.

-Gastroduodenal Crohn's disease: This form of Crohn's disease involves the stomach and duodenum, which is the first part of the small intestine. People with this type of Crohn's disease suffer nausea, weight loss, and loss of appetite. In addition, if the narrow segments of bowel are obstructed, they experience vomiting.

-Jejunoileitis: This form of the disease affects the jejunum, which is the upper half of the small intestine. It causes areas of inflammation. Symptoms include cramps after meals, the formation of fistulas, diarrhea, and abdominal pain that can become intense.

-Crohn's (granulomatous) colitis: This form of Crohn's disease involves only the colon. Symptoms include skin lesions, joint pains, diarrhea, rectal bleeding, and the formation of ulcers, fistulas, and abscesses around the anus.
There can be overlap between these types of Crohn's disease. Some people have more than one area of the digestive tract affected.

With respect to there being 5 subtypes, this adds to making crohn's very individual, which is likely why what works for some (diet, meds, etc) may not work for all.

MAP is also strongly suspected to play a role in IBD, it's found in beef, water and soil.

That's it for now :)
 
GAPS diet is similar to Paleo but incorporates healing foods such as fermented milk kefir, yogurt, fermented vegetables and such. I cannot tollerate milk but through the fermentation process, fefir is very easy for me to digest. I started this diet months ago and thought this diet was going to kill me for two weeks. I had a die off reaction of bad bacteria but then my crohns symptoms began to subside for the first time I can remember. Then I felt so good, that I went back to normal eating. (stupid)

Now, I am convinced I must go back to the diet-but the intro diet. The book that outlines the diet and gives good reason for it is The Gut and Psychology Syndrome.

Definately worth a read.
 
Gut & Psychology Syndrome
by Dr. Campbell-McBride

Take a look--I'm not selling anything, but I really believe there is something to it.

I believe that I've developed additional health problems from years of Humira. Time to look at something a little less traditional (with doctor supervision of course).
 
I have not been dx yet, but I have alot of other health issues and now am having intestinal/gut issues for the last year.

I do not smoke nor drink alcohol, never did. I was a pretty healthy eater and lived a pretty healthy lifestyle. But I got sick! I got sick 9 years ago with a virus that inflammed why whole throat and upper esophagus. I had extreme burning pain to the point where I was in tears. it lasted for about a year and half. I could not even talk the pain was so bad. No doctor ( not even mayo clinic) could figure out what was wrong. IT was all down hill from there. Coencidentally, I had gotte a flu shot about two weeks before all this happened. Was it a immune system reaction to the flu shot?? There is a good possibility, but I will never know.

One thing for sure, I really do not think smoking causes crohns disease or other diseases, there are just toooo many people out there who smoke, drink, abuse themselves and they are perfectly healthy! It has alot to do with genetics and how each individuals immune system reacts to different elements that it is exposed to. I also have interstitial cystitis. What is curious is that with IC(interstitial cystitis), some develop ulcers in the bladder and the bladder is very inflammed. Yet, they do not offer steriods or immunosupressents to treat IC. I think IC, crohns disease, and alot of these orphan diseases are all an overdrive of the inflammatory process going on in the body. Whether it was caused by genetics, a drug, environment, who knows. But it is definitely an individual thing. You cannot really blame it on smoking, or alcohol or living an unhealthy lifestyle, otherwise there would be alot more people running around sick with these various diseases.

I do believe it may be a bacteria that in certain people, the body just reacts negatively to. For example, you take 20 people that have this bacteria in them. Well 17 of them have no issues at all, their bodies live in harmony with this bacteria, where 3 of these people the body looks at this bacteria as an invader and attacks it with a vengence. As we all know, you cannot kill these bacteria, you can kill some of them, but not all of them so the immune system just keeps attacking relentlessly causing damage. This is of course just a theory, but it makes sense.

It all depends on the person, their genetic makeup, and their immune system. They have come up with a drug that can stop AIDS now. I was watching a documentary on it. A man who had full blown AIDS was on his death bed. Well they started giving him this trial drug that is not yet on the market and he has been on it for 10 years. He is the picture of health now. The way they were explaining it was that certain people have an extra chromosone in their DNA that will not allow certain diseases to attack them, so they can never get AIDS, crohns, MS, or alot of these issues that some people get. They are trying to make a drug that can replicate this chromosone that some people have sort of speak, like this drug they have people on with AIDS. Not sure when the drug will become available, but they said it would be out in the not long off future. I wish I could remember what the documentary was called, I think I seen it on discovery health channel a couple months back.

Anyhow, these diseases are so complex and I think there are alot of variables to how a person comes down with these diseases. Bottom line is that it sucks for those who are dealing with these debilatating diseases and I hope that the researchers will come up with something that will help us all!
 
Ihurt,

Researchers have found a definite link to smoking/second-hand smoke to crohn's disease, that does not mean it's every crohnies trigger. Part of the genetics is smoking being able to trigger CD for some patients. For people that smoke and have not gotten CD from it, just means that they are not genetically predisposed to it is all, doesn't mean that it can't be a trigger (known trigger according to researchers) for those that are predisposed to gettin it and smoking/second-hand smoke just happens to be their trigger.

There are many possible triggers that researchers are looking into, smoking just happens to be known one (again, not necessarily for every CDer)...the flip side is smoking for some UCers can be beneficial since they discovered that the carbon monoxide from smoking soothes inflammation in the colon. Lot's of people that end up with UC often had recently quit smoking, researchers figure that it was the smoking that kept their UC in "hibernation". Some even go back to smoking and are able to find remission.

There's so much more that needs to be learned, and I agree that I hope they will find something that helps us all get our lives back.
 
Ihurt said:
One thing for sure, I really do not think smoking causes crohns disease or other diseases, there are just toooo many people out there who smoke, drink, abuse themselves and they are perfectly healthy!
Click to expand...


"plenty of people fall from stairs and are fine, so falling from stairs does not cause broken bones, fragile bones does"

Something doesn't have to be the cause to have an impact on a disease, often you just need a trigger. Many factors influence crohn, and limiting smoking and second-hand smoke is the first thing you can do to help yourself, plenty of studies have shown a relationship, not to mention it's good for your overall health as well.

Ihurt said:
It has alot to do with genetics and how each individuals immune system reacts to different elements that it is exposed to.
Click to expand...

It's another small part of the puzzle together with bacteria you mentioned I think. There are exact twins where one of them has crohn and the other is completely fine, the genetic part is a predisposition, and for some reason, whatever we did, or ate, or were exposed to, triggered it in one twin and not in the other. There's a case I read and the twins were seperated at birth, they both lived miles apart, and both got crohn, but one got it 6 years later than the other, some don't get it at all.

"Thomson et al traced 144 twin pairs with inflammatory bowel disease from 16 000 members of the National Association for Colitis and Crohn’s Disease.10 Six of 38 monozygotic twins with ulcerative colitis and five of 25 with Crohn’s disease were concordant for the disease. The relative risk for an unaffected identical twin developing inflammatory bowel disease compared with that for a non-identical twin was 3.49 (p=0.03). Once again, in the majority of cases only one twin had developed overt inflammatory bowel disease; however, there was no pair of twins with mixed inflammatory bowel disease. These studies and case reports all indicate a higher concordance for inflammatory bowel disease in monozygotic than dizygotic twins suggesting that genetic factors rather than environmental factors play the primary role in disease pathogenesis. "
 
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Hi there!

I've been following this thread with great interest for some time now. I am not sure that diet causes Crohn's, but I definitely believe that it can have a huge roll in controlling it. Earlier on this forum I was interested in a raw foods diet - but to paraphrase David's doctor, sometimes things work in practice but not in theory - and I think this works vice versa as well, sometimes things might make sense in theory but not in practice. For me, a raw diet was bad news! And I presume for a lot of other Crohn's sufferers. But my gut is happy with meat and cooked veggies, so just by my own food experience, I've already started leaning towards a paleo diet anyway.

I wanted to thank everyone for this thread, and especially Adam for starting it and reporting back faithfully about your experience with this paleo trial. It's so interesting, and informative. And thanks to all who have posted links for further information.

pb, I had a question about something you just posted:

pb said:
Birth control pills are also strongly suspected as being an environmental trigger for IBD.
Click to expand...

I would love to read up on this, do you have any links or books or anything that I should be looking into? When thinking back on when my Crohn's started acting up again recently, it coincides with starting on birth control. I'd love to learn more about this "coincidence".

Thanks all!
 

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