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Have my Crohn's under control with diet

EDIT: I've learned a lot on the last 3 months, updated post here: http://www.crohnsforum.com/showthread.php?t=47701

I'm 18. I was starting to notice symptoms in September of this year, things gradually got worse (intense diarhhea and cramping) as I avoided the doctor and ended up with an inflamed eye and joints. I was admitted to the hospital, and got a colonoscopy, resulting in an "indeterminate colitis" diagnosis. Left with a prescription of Mesalamine (Asacol HD) and a waning Prednisone prescription. I am now completely off of Prednisone and take apriso 1500mg per day.

Other than that, I have only made dietary changes. I have completely eliminated any and ALL genetically modified (GM) foods (as well as foods derived from animals that eat GM corn), am restrictive about my intake of carbs, and for the most part have eliminated processed sugars. (Honey holds me over..) I have eliminated most forms of dairy (as most come from cows that eat GM corn) and I also take a ton of probiotics, as well as digestive enzymes.

Overall, I feel slight discomfort in the abdominal area maybe once per day, but have not had any problems with my stool or any other inflammatroy issues as of yet. I plan to start a cabbage juice regiment in the near future to hopefully completely destroy any ulcers that may be left in my colon, and hope to be off the mesalamine in the near future.

You are probably reading this and thinking I must be a miracle child who never really had that big an issue in the first place. Well, I was 100 lbs. and 6 feet tall in the hospital not even 2 months ago.

Warning: Underwear picture! http://i.imgur.com/FSfgL.jpg

I am now 135 lbs.

Completely cutting out all kinds of corn in general has also seem to be beneficial.

My daily diet (in general).

Breakfast:
3 eggs, usually mixed with almond meal and honey to make pancake-like breakfast patties. They're delicious if you mash a banana in with them!.. and don't go too easy on the butter in the pan. High-fat shouldn't cause any major issues for those with Crohn's/Colitis. (contrary to popular belief)

Lunch:
Raw spinach. a lot of it. Usually a lot of fruits, grapes, (pineapple is a great digestive enzyme! Also, papaya and advocado!) similar fruits. I usually eat some kind of cooked meat too, organic farm raised cold-cuts... etc.

Dinner:
Pretty much the same as lunch. I try to avoid most foods listed as illegal on breakingthevicouscycle

Dietary Supplements:
Garden of Life Primal Defense Ultra - 2 capsules, twice daily
Fish oil - 1 capsule twice daily.
Garden of Life Vitamin Code - 1 capsule, twice daily.
Wobenzyme N - 4 small tablets, twice daily.
Sovereign silver - 2 teaspoons twice daily

Meds:
Apriso, 1500 MG - once daily.... I plan to start using this less as I get my very little amount of symptoms gone completely.

If you have any questions regarding my diet or any of the probitics/enzymes I'm taking feel free to ask!

What I want to debunk here, is the myth that you can't beat Crohn's/Colitis with drastic diet changes and the addition of probiotics to stabilize bacteria levels in the gut. You can. I have almost done it.

Cut out ALL the garbage. ALL the processed foods, ALL the GMO derived products, and most importantly, HELP YOURSELF HEAL. You don't have cancer, (yet) and the doctors thought Celiac was incurable until this most recent decade. Oh, surprise! It's just a gluten allergy. I believe Crohn's/UC is a sister disease caused in similar ways. We're being poisoned by Monsanto and the food industry in general. Some people's bodies are able to pass most of it through. We happen to have something that causes us to be a toxic waste dump for this harmful bacteria. The pesticide most farms spray on corn kills the insects by destroying their intestines. Coincidence? Time will tell, but every day I become more convinced.

My brother was diagnosed with Crohn's 3 years ago and is on absolutely no medication as of today. Change your diet. Change your life. Take it from an 18 year old.
 
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SarahBear

Moderator
Location
Charleston,
Welcome to the forum, Diet.

I'm a little confused, as you said you're using diet alone, but you're still taking Apriso?

Other forum members control their disease with diet, as well. You might want to check out the Diet, Fitness, and Supplements section of the forum. If it works for you, that's great! Are you still seeing a doctor, though? Although you may not be feeling or seeing the symptoms, it might still be causing damage. It might be best to find a GI willing to work with you on your dietary treatment so you can keep an eye on things.

I hope things continue to go well for you!
 
Welcome to the forum, Diet.

I'm a little confused, as you said you're using diet alone, but you're still taking Apriso?

Other forum members control their disease with diet, as well. You might want to check out the Diet, Fitness, and Supplements[/url] section of the forum. If it works for you, that's great! Are you still seeing a doctor, though? Although you may not be feeling or seeing the symptoms, it might still be causing damage. It might be best to find a GI willing to work with you on your dietary treatment so you can keep an eye on things.

I hope things continue to go well for you!
Thank you! Well, I say diet alone, but I am on significantly less mesalamine than I was before and I plan to continue removing it. Sorry for that. Anyways, of course I am under the supervision of a GI and he was impressed with my dramatic recovery and plans to see me every six months.

Hope some of this information can help those that are suffering. Diet change is the hardest kind of change (especially for Americans) but I think that the above advice would prove fairly universal for all kinds of people.

Crohn's is very person-specific. But eating right isn't. I don't mean the cliche american definition of "eating right." I mean completely overhauling what you think of food and eating what our bodies were made to eat.
 

Gianni

Moderator
Hey Diet, Thanks for the message.

I'm so glad to see another fellow "diet is the key" member on this forum.

I too believe that GMO's are a major problem and could very well be a causing factor here.

Unfortunately most people look at you funny or shrug it off when you say that you believe Crohn's can be completely managed or cured through diet. If we get more people like you active on these forums then I think we can change that mentality. I feel like drugs should be the thing that sounds weird:D.

Crohn's is very person-specific. But eating right isn't. I don't mean the cliche american definition of "eating right." I mean completely overhauling what you think of food and eating what our bodies were made to eat.
Well said. Too many people think they are eating healthy or right because they avoid the bad things... the extremely processed foods, fast food, and processed sugars but this thought process can be very dangerous. Rather a healthy diet should be exactly that, HEALTY by incorporating beneficial foods rather than just avoiding the really bad things.


I plan to start a cabbage juice regiment in the near future to hopefully completely destroy any ulcers that may be left in my colon,
Let me know when you do this, I may want to join you:) I don't believe I have any ulcers but I love applying myself to a juice regiment/fast:D



I'm glad to hear you are doing so well. My only real advice to you would be to retain on this diet for sometime if not for the rest of your life. Many people will try a diet for a few months or a year and give up because they aren't seeing immediate results. I do believe this disease can be turned off and reversed but I also think that this takes a long time. Stay active on the forum, it is inspiring to read other diet success stories and really keeps me motivated to keep my diet going. Thanks for sharing your story and your success. Don't stop educating others :)

Gianni

PS. You might want to change your username. There is a tagging system on this forum that whenever your username is mentioned, it will notify you that you have been "tagged". So I imagine you'll be getting notifications quite often as many people will be talking about "diet". David can help you with changing your name if you would like.
 
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my little penguin

Moderator
Staff member
Glad to hear your dietary changes are working and that your doc is on board with you going off your maintence meds.
Keep in mind the scientists in Ibd are now thinking there may be more than two subtypes of Ibd.
They are still working on how to classify and test who has what type so it could be a while.
They do know that some people do well on diet modifications, some need meds , some need a combo and some need something else yet to be determined.

The key I think is until they experts figure out who can truly get better on diet alone to proceed with caution.
Ibd can be silent and still causing damage.
Once the damage has been done that part of your Gi tract is useless .

Good to hear it works well for you but as with Ibd not everything is one size fits most.
 
Glad to hear your dietary changes are working and that your doc is on board with you going off your maintence meds.
Keep in mind the scientists in Ibd are now thinking there may be more than two subtypes of Ibd.
They are still working on how to classify and test who has what type so it could be a while.
They do know that some people do well on diet modifications, some need meds , some need a combo and some need something else yet to be determined.

The key I think is until they experts figure out who can truly get better on diet alone to proceed with caution.
Ibd can be silent and still causing damage.
Once the damage has been done that part of your Gi tract is useless .

Good to hear it works well for you but as with Ibd not everything is one size fits most.
I do think this is important. I believe there are many more than just two classifications of IBD and they vary in symptoms, severity, and cause! However, I think eating vitamin and nutrient dense foods (or even a biblical diet) is a journey everyone suffering from IBD should embark upon.

Oddly enough, I have never experienced the "urges" that seem like such a universal symptom among IBD sufferers. :shifty:
 

FullM3lt

Activate CB2
Location
Pacific NW
The more I read on this forum, the more inclined I am to drastically alter my diet. I exercise a ton, but I'm pretty much clueless when it comes to nutrition.

After reading a lot about juicing on this site and on other sites, i'm inspired to try it myself. Like Gianni said

Well said. Too many people think they are eating healthy or right because they avoid the bad things... the extremely processed foods, fast food, and processed sugars but this thought process can be very dangerous. Rather a healthy diet should be exactly that, HEALTY by incorporating beneficial foods rather than just avoiding the really bad things.
I'm one of those people that just tries to avoid bad things....I need to further educate myself on this subject and this forum is helping tremendously.
 
Hi Diet, glad your crohns is much better on this new diet of yours and best wishes that it stays that way. However...I think little penguin is right, when she says that though you may not have severe symptoms, you can cause a lot of damage on diet alone. If you have inflammation, eating high fiber foods can cause strictures. Sorry but I had to laugh when I read your daily meal plan, at the thought of actually trying high fiber diet with current stricturing. I thought you can improve crohns if not full remission, with diet alone too. Then I tried it and my crohns became much worse. I love the idea of SCD, and if my bowels were healthy, I'm sure it would be a healthy diet to be on. But because I have stricturing, some days a small piece of fruit, or very small amount of veg, can cause a lot of pain. So it's great it works for you, but for many with crohns this kind of diet could cause a lot of problems. Best wishes :)
 
Hi Diet, glad your crohns is much better on this new diet of yours and best wishes that it stays that way. However...I think little penguin is right, when she says that though you may not have severe symptoms, you can cause a lot of damage on diet alone. If you have inflammation, eating high fiber foods can cause strictures. Sorry but I had to laugh when I read your daily meal plan, at the thought of actually trying high fiber diet with current stricturing. I thought you can improve crohns if not full remission, with diet alone too. Then I tried it and my crohns became much worse. I love the idea of SCD, and if my bowels were healthy, I'm sure it would be a healthy diet to be on. But because I have stricturing, some days a small piece of fruit, or very small amount of veg, can cause a lot of pain. So it's great it works for you, but for many with crohns this kind of diet could cause a lot of problems. Best wishes :)
I can see how the fibrous foods (such as large amounts of leaf spinach) could cause problems for those that have strictures. Best wishes to you!

But on top of eating right, I do everything I can to give my Immune system the power to help heal my gut. One of the biggest confusions I've seen is that Crohn's or UC is a problem with your immune system being confused. It's not confused, it's doing it's job! Why not give it a little boost, rather than telling it to stop it's work with Remicade or Humira. It simply doesn't make sense. I don't think 1.4 million americans have confused immune systems.

That said, there is definitely something different about *our* immune systems and how they treat our intestines. The upcoming whipworm treatments are very exciting to me! Crohn's and UC are almost non-existent in developing countries, and more and more studies are being released every day that say parasite exposure is a big reason. (Here's a little bit of back-up research: http://foodheretic.wordpress.com/2012/07/) We all have some amount of parasites living in us, but I guess something about us Chronies makes us have less.

You can import 3 months worth of the stuff from Europe for 3500 euros, but not everyone can afford that. (Source: http://abcnews.go.com/Health/Wellne...crohns-disease/story?id=17148676#.ULL09oc82So) They have shown almost no side-effects and have in recent studies proven to completely return the gut to its normal state. Will big pharma ever let them become legal here in the US? Time will tell, but I think if a pharmaceudical company was able to market them, they would have 1.4 million Americans' business.

For the time being, I'm going to give my body the nutrition it needs, and retain my gut flora with an ABUNDANCE of probiotics. Sure, just cause I'm not seeing symptoms doesn't mean nothing is wrong, but I feel MUCH more comfortable eating a biblical and PROVEN diet. A combination of Juicing, the miracle effects of Coconut oil (example of how it kills bacteria: http://healthimpactnews.com/2012/virgin-coconut-oil-and-stomach-acid/), the miracle effects of Cabbage juice(DRAMATICALLY improves ulcers: http://www.naturalnews.com/027454_cabbage_ulcers.html), the proven effects of intense probiotics, and cutting out ALL processed sugars and breads. On top of that, never eat anything that has ever come close to genetically modified corn. Cows that eat the corn, don't eat their cheese, for example. HFCS is a poison in my humble opinion.

I would rather not use any mesalamine, but clinical studies have proven that cervical and colon cancer is a lot less common in those that did use the maintenance drug. So until the day I get a colonoscopy that confirms my diet has healed me, I will continue (lower dosages of) my maintenance drug as the doctor requests.

Let it be known that if I am ever told that my diet has in fact healed my gut, I will never be returning to the typical American diet. I will never be eating Pizza Hut or Chick-fil-a again.

If you're wondering where I get a lot of my crazy and "radical" stance on this topic, see the following resources.

http://www.biblicalhealthinstitute.com/
http://www.amazon.com/Makers-Diet-Jordan-S-Rubin/dp/1591857147
http://www.amazon.com/Restoring-Your-Digestive-Health-Transfom/dp/0758202822
http://www.amazon.com/Patient-Heal-Thyself-Remarkable-Groundbreaking/dp/1893910245
 
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Location
Houston
Couple Debbie downers in this thread ehh? I take Metamucil everyday which is straight up pure fiber! The more I take the better consistency my BM become. It binds some people like me. If you have structuring then you are past the point where diet alone can help. Diet advice need not apply, you need a good medication regimen. If/After strictures are taken care of then diet would be implemented, and addition of fiber can be tried/tested. This is standard knowledge btw.

You keep on preaching that diet advice. Gosh I wish I lived closer to a trader joes or some organic super market. Would make it so much easier to stick to!
 
glad you are having some luck my friend.
i have used diet and alternatives to also control crohns, its definitly not easy. for me it has been a full time job. 3.5 years since diagnosis, no meds no surgerys, no hospital visits, only 3 additional doctor visits and almost no signs of extraintestinal manifestations like joint pains etc or bowel obstructions like vomiting. but again, it has not been easy and i dont want anyone to believe it is easy, it would only be easy if someone would take advice and learn easily, what i learned, the hard way. which was,obsessive note taking, research, creativity, and trial and error. i could easily have died and come close many times from blood clots due to chronic inflammation, which i still deal with. im not sure how far into the game you are, but its only begun dont pat yourself on the back juuuust yet. many obstacles to overcome, drugs or no drugs, prepare yourself with knowledge and dont think you have won every battle ahead of you. read everything. All in all, i would say i have been somewhat better off without meds, i have retained all of my intestinal tract thus far, thats a major plus, but others seemed to have done equally well or sometimes better then me following standard therapy, and sometimes even worse then me. its hard to judge which routes are better or not, i believe doing both is the best. good luck.
 
Wow...ok, didn't think I was being a Debbie downer, I did say that it's great that this is working for Steven. :p

Steven- you seen extremely enthusiastic about your research, and admittedly a couple years back, I was the same. I was scheduled to have a bowel recsection, and found all these websites on how diet could cure me. I had the same perspective, as far as- maybe things like humira- imuran- make is worse not better. Then I 'tried' a diet- no meds, and became VERY ill. I believe in the bible- as far as you saying your eating biblically- however, I believe that we have doctors to help us, to cure us, with diseases which are chronic where there is no cure- to at least help our symptoms. I now believe, if your sick- you need a doctor to prescribe medicine. I just recently had someone preach(this isn't to say your preaching- I understand you just want to be well, and am glad diet is helping you), preach to me, that doctors are basically no good, and that you don't need them?!? So I asked- really, what if you have a chest infection? His reply was - eat lots of garlic and you never will. Well I'm sorry but that's easy for a healthy person to say. I believe in doctors, because when I had a perforated bowel- lets just say no amount of garlic would have cured me. I didn't look at any of your links (thanks non the less), because I spent hours researching what could help my crohns, and it didn't. There is no way, unless a doctor tells me too, that I will stop humira, and treating my crohns with medication. Having said all that, many say, their crohns is dramatically improved with diet alone, and I say, best of luck to them. I thought that the idea of only having low residue, no fruit veg- anything in general that is persieved to be healthy, was crazy too. But then there are days when I have a salad which I didn't slice fine enough, or a bit if veg and I'm in pain, when it no longer seems so crazy. So if a doctor tells me- I need to do a b c, I will.

Sorry for the long reply- but I feel very strongly about this topic, only because of how sick I became on diet alone. But if a doctor told me to do things differently with diet, and it would improve my crohns, I'd do it, no question.

Hope your crohns continues to improve. Xo
 
Diet is absolutely key, but I think so is proper medication. It sounds like you're doing things right, but I think the avoidance of GM foods has little to do with it. Avoiding fibrous and carb heavy foods are both well supported dietary modifications, though. The GM thing, a bit superstitious in the absence of data.

The fact that you're still having abdominal discomfort concerns me because you are likely experiencing some low level inflammation at least, and over time that inflammation can scar you up pretty badly and cause strictures and even fistulae.

Keep on researching and testing dietary modifications, but don't shun medication increases if you're still uncomfortable. When you're young with this disease you want to work on your tolerance (at least, I did) and bear "lesser" symptoms rather than take more pills. In the long run, though, those lesser symptoms can have cumulative effects.

I had a 7 year apparent remission on no drugs at all and only diet from age 18 to 25. I now have a permanent, externally draining fistulae to show for it, the very small amount of inflammation I was still experiencing, but tolerating, most often not even noticing, was still going to work on my gut.

Be careful!
 

Gianni

Moderator
I had the same perspective, as far as- maybe things like humira- imuran- make is worse not better. Then I 'tried' a diet- no meds, and became VERY ill.
Hi Irene3.

I don't think you're being a debbie downer:) your opinions are valuable.

Having said that, I do believe that diet is the key here and I'm sorry it didn't work so well for you. After hearing everyones "healthy" diet on their once thought journey to "cure" their crohn's there is almost always a backstory that I was never told but find out later. Things like they tried the diet for only a few months, they cheated on the diet regularly, or they made their own modifications to the diet.

We as a society now have this quick fix mentality or the fast food mentality that everything in life comes quick whether it be getting our food quick or feeling better quick. Because of this pop a pill for every ill system we have going people don't give diet the credence nor patience to really devote themselves to it and give themselves an honest shot at the benefits. People will get into a diet expecting results within days, weeks, months or maybe a year or two but I think a diet should be taken seriously much longer.

I would love to hear more about the specific diet you were on at the time.

It sounds like you're doing things right, but I think the avoidance of GM foods has little to do with it. Avoiding fibrous and carb heavy foods are both well supported dietary modifications, though. The GM thing, a bit superstitious in the absence of data.
I told myself I wouldn't respond as I didn't want to hijack the thread with another classic muppet vs Gianni debate.

http://www.naturalnews.com/037249_GMO_study_cancer_tumors_organ_damage.html

http://research.sustainablefoodtrust.org/wp-content/uploads/2012/09/Final-Paper.pdf

Monsanto owns the patents on these GMO's and have only done short term, low dose studies to "prove" that they are perfectly healthy.

From the monsanto site:
There is no need to test the safety of DNA introduced into GM crops. DNA (and resulting RNA) is present in almost all foods--the only exceptions being highly refined materials like oil or sugar from which all cell material has been removed. Thus, DNA is non-toxic and the presence of DNA, in and of itself, presents no hazard.
They decided to mess with something they know nothing about and claim that there is no need for longterm studies.

Monsanto owns the patents on these GMO's and therefore only the government and Monsanto can provide the studies otherwise independent studies are conducted at their own risk under the threat of litigation and an all out blitz by Monsanto.

So why doesn't the government demand longterm studies? Because Michael R. Taylor the ex lawyer and ex Vice President for Monsanto is the Deputy Commissioner for the FDA.

These longterm studies have been done but they are called pseudoscience by the FDA based of delusion, yet there is a clear conflict of interest here.

I know you think the systems of regulation and research are perfect in this world but they aren't there are clear huge divisions of powers that effect what really gets researched and what automatically is deemed safe.

California had a ballot initiative this most recent election to require labeling of GMO foods. If GMO's are so safe then why did the no campaign spend 48 million in just 4 short weeks... does that not seem like a waste of money for a "perfectly safe" food?

The initiative wasn't a ban on GMO's, It wasn't a requirement for more research it was a simple 1 inch label to be put on foods that contained GMO's. Yet Monsanto and other Biofood companies squashed the campaign from the get go.

Sure, maybe GMO's don't have a piece of the causation pie here for Crohn's but why not do longterm studies. If it's safe and people are mad why would you not do longterm studies.

If I was the CEO of kale (complete hypothetical) and everyone started questioning whether kale caused cancer I would just give a longterm health study to put faith back into my product. Yet Monsanto says that the GMO crops are just as healthy as the natural crop but they won't support a non conflicted longterm study? Does that make sense?

I think it is worth looking into.

The studies have been done but they are widely ignored.

You should watch "Genetic Roulette" Documentary. I couldn't find it online for you but I've seen the film a few times and it is very educational.

Gianni
 
A documentary is not a study. :)

Anyway I don't want to hijack the thread either, but there's no well corroborated, well documented evidence of harm from GM crops. Now, I personally have some doubts and I'd like to see more science done and I'd like to see Monsanto and all of its executives launched into space on a one-way trip, but I wouldn't ever say to someone with Crohn's that a diet focused on eliminating GM foods is the most effective way to go. There are far better, more well proven diets for Crohn's remediation that don't focus like a laser on GM.

You also REALLY need to stop saying that Crohn's can be "cured" through diet. It can't. You can potentially eliminate all symptoms for some period of time through diet. I've done it myself. However, that is not a cure, it's a remediation. You have not removed the Crohn's Disease, you've just made it dormant by not aggravating it.

Saying that Crohn's can be "cured" is a disservice to everyone researching an actual, medical cure; promoting that research; dying while they wait for more research; raising funds for that research; etc.

Right now, there is no cure for Crohn's. Period.
 

Gianni

Moderator
A documentary is not a study. :)
Yes of course but can still be educational.


but I wouldn't ever say to someone with Crohn's that a diet focused on eliminating GM foods is the most effective way to go.
Nor would I but I wouldn't be surprised if it is a piece of the puzzle. I suppose at this point I just want to see the longterm studies. Unfortunately corporate greed hinders scientific advances.

Gianni
 

Gianni

Moderator
You also REALLY need to stop saying that Crohn's can be "cured" through diet. It can't. You can potentially eliminate all symptoms for some period of time through diet. I've done it myself. However, that is not a cure, it's a remediation. You have not removed the Crohn's Disease, you've just made it dormant by not aggravating it.
If you read the post that I was referring to you would understand why I used quotations around the word.

From Irene3
was the same. I was scheduled to have a bowel recsection, and found all these websites on how diet could cure me.
Many websites claim this "cure" and I think most of these websites are full of it. That is why I said
.

I do believe lifestyle change can reverse the disease. I'll stick to my opinions, I'll let you stick to yours.

Gianni
 
Unfortunately most people look at you funny or shrug it off when you say that Crohn's can be completely managed or cured through diet. If we get more people like you active on these forums then I think we can change that mentality. I feel like drugs should be the thing that sounds weird:D.
There's no quotes here.

You go tell the people who have religiously followed diets and still lost their colons, their jobs, loved ones, etc that Crohn's could have been cured if only they'd just taken your advice, Gianni.

There's no cure for Crohn's and as a member of this community it's irresponsible to claim that there is one. Awareness of Crohn's is just finally starting to become mainstream in the last decade, and many people (who don't have Crohn's) already believe, erroneously, that it's been cured, that there are foolproof treatments, like just avoiding beans, or whatever. These mistaken mainstream beliefs have a profound detrimental effect on research by hampering fund raising or other financing/budgeting efforts, since most research, after all, takes place in democracies either through private or public funding. To promulgate a mistaken belief that Crohn's is a solved problem is to undermine those efforts, to the detriment of every Crohn's sufferer of any age.
 

Gianni

Moderator
I have adressed Muppet privately. This thread will no longer be hijacked sorry about that stephen.

I realize you like the debate Stephen but I really want people to respond about your knowledge and know-how with comments, questions and suggestions rather than responding to the debate of Muppet and I that we have already had in a different thread.

Gianni
 
What are examples of food that are 'safe'??? I know I cant eat many types of vegetables as they make me flare...thats mainly all I notice. I find that 'junk food' doesnt really tend to have much of an affect on me (but thats just me..)
I used to drink aloe vera juice and have tried a wheat free diet and also soya but nothing made a difference. Would just like some advice :)

I find that when im flaring- anything I eat makes it worse! xxx
 
I have a lot of luck with a low-residue, no dairy diet. I also avoid greasy and spicy foods.

Fast food doesn't always affect me, but it will if I eat too much of it or if I'm already flaring.

Lots of people do low residue or no dairy or both. Lots of people do the Specific Carbohydrate Diet, but that one's pretty hardcore, or some other paleo or modified keto diet.
 
god i love dairy so so much. Im a cheese lover :( lol! Spicy foods are a massive no no for me which is a shame as I love indian food. I will have a look at the low residue!

Thanks :)
 

kiny

Well-known member
Watching your picture again it reminded me where I was 5 years ago, I was 80 pounds. I now weigh about 165 pounds. I wish you the best on your journey.
 
Stephen, I like your attitude, and I do believe it is possible to halt progression through diet/supplements. Just wondering if you notice any definite benefit from the Wobenzyme N--this is something I've always considered but never tried?

Prebiotic fibers/starches are key. I've noticed if I stop eating salads for a while I take a couple salads before my endogenous enzymes compensate and handle it better. I feel, and cannot prove, that spinach especially promotes such enzymes and is dramatically easier to digest than iceberg/romaine. I am conscious of the whole high nitrate content which may be a culprit and only eat organic lettuces, but, of all lettuces, spinach just seems to make digesting everything easier once you're accustomed to it and don't pile on dressings (homemade sugarless ones should only be used).

If anyone cares, see my GMO News & Info post in the multimedia/articles section.
 
Stephen, I like your attitude, and I do believe it is possible to halt progression through diet/supplements. Just wondering if you notice any definite benefit from the Wobenzyme N--this is something I've always considered but never tried?

Prebiotic fibers/starches are key. I've noticed if I stop eating salads for a while I take a couple salads before my endogenous enzymes compensate and handle it better. I feel, and cannot prove, that spinach especially promotes such enzymes and is dramatically easier to digest than iceberg/romaine. I am conscious of the whole high nitrate content which may be a culprit and only eat organic lettuces, but, of all lettuces, spinach just seems to make digesting everything easier once you're accustomed to it and don't pile on dressings (homemade sugarless ones should only be used).

If anyone cares, see my GMO News & Info post in the multimedia/articles section.
Regarding Wobenzyme, I take about 12 a day (they're small) and I absolutely do notice a benefit. In large amounts, it's nearly a replacement for Prednisone in my opinion. Im exaggerating a bit. Although it's essentially high concentrated amounts of Papaya and Pineapple enzymes, it brought down my joint inflammation fairly well while I was in the middle of my first flare-up. I used it and emu oil topically before I was on prednisone and it dramatically helped the inflammation in my knee.

Now, I take it for maintenance and couldn't imagine a day without it.

Disclaimer: Do NOT use it as a replacement for Prednisone if that is what your doctor has prescribed. I am only saying I noticed a difference while I was in a flare before I was on Pred.

That said, I don't think you should keep yourself from taking supplements that you don't see immediate results from. Much like our dedication to juicing and strict diet, the effects long term will be much more apparent. For example, just because eating spinach or whatever doesn't make you feel immediately better, doesn't mean you shouldn't eat spinach. It is still going to benefit you in the long term.
 
When doing self study like this, it's really important to remember a few things:

* You are a sample size of one.
* Your observations are inherently biased, no matter how objective you try to be.
* Crohn's is a disease which sometimes has spontaneous remission, and this can screw with your observations.
* Your life is not a controlled experiment, and it's nearly impossible to isolate variables or control for all or even most external ones.

That said, it's great to do your best and add what you can to the community's knowledge, but it should be with a good dose of humility and tempered with honesty about the validity and "purity" of your process. Most people who find us on a Google search aren't likely to go digging through pages and pages of context to put your posts and claims in perspective, so careful use of vocabulary is pretty important when embarking on ambitious threads like this one.
 

David

Co-Founder
Location
Naples, Florida
When doing self study like this, it's really important to remember a few things:

* You are a sample size of one.
* Your observations are inherently biased, no matter how objective you try to be.
* Crohn's is a disease which sometimes has spontaneous remission, and this can screw with your observations.
* Your life is not a controlled experiment, and it's nearly impossible to isolate variables or control for all or even most external ones.
So everything is exactly the same as a normal study except the sample size? :)

Muppet said:
That said, it's great to do your best and add what you can to the community's knowledge, but it should be with a good dose of humility and tempered with honesty about the validity and "purity" of your process. Most people who find us on a Google search aren't likely to go digging through pages and pages of context to put your posts and claims in perspective, so careful use of vocabulary is pretty important when embarking on ambitious threads like this one.
Nicely said :)
 
Well, for a clinical study involving human participants you probably have a point, but I wouldn't minimize the effect of low sample size too much. It's very significant. :tongue:

Also, bias in observations is generally better dealt with by folks trained to recognize and moderate it, also by peer review.

But still... you've got a point. :smile::tongue:
 

David

Co-Founder
Location
Naples, Florida
Certainly. Though in the case of Crohn's disease, I could make a very strong argument that every single trial/study out there is a group of single sample sizes. I say that because there are so many subtypes of Crohn's disease (and I'm not just talking Crohn's Colitis, Ileitis, etc) and variables within those subtypes. One person may have Crohn's Ileitis, a build up of aluminum in their peyer's patches, a homozygous carrier of the Nod2 gene, deregulation of Interleukin 10, is refractory to steroids, is thiopurine naive, has perianal disease, eats McDonalds 4 times a week, is deficient in Vitamin B12 due to damage to so many of their cubam receptors, and has Uveitis. How many more people like that do you think are in a study of 50 people?

But I do understand what you're saying. I'm just being difficult ;)
 
Certainly. Though in the case of Crohn's disease, I could make a very strong argument that every single trial/study out there is a group of single sample sizes. I say that because there are so many subtypes of Crohn's disease (and I'm not just talking Crohn's Colitis, Ileitis, etc) and variables within those subtypes. One person may have Crohn's Ileitis, a build up of aluminum in their peyer's patches, a homozygous carrier of the Nod2 gene, deregulation of Interleukin 10, is refractory to steroids, is thiopurine naive, has perianal disease, eats McDonalds 4 times a week, is deficient in Vitamin B12 due to damage to so many of their cubam receptors, and has Uveitis. How many more people like that do you think are in a study of 50 people?

But I do understand what you're saying. I'm just being difficult ;)
Also showing off. :p

:D
 
Yes, in fact I shared it around on a few other forums full of graduate and post-doc students who think the pharmacological industry is sacrosanct and altruistic.
 

David

Co-Founder
Location
Naples, Florida
Also showing off. :p

:D
Knowing my ego, probably a little.

But I was more trying to showcase just how many variables there are with this crazy disease and really, you could list variables all day long but even MY ego gets tired after awhile. It really is about finding what works best for you. If anything, threads like Stephen's here gives people ideas on things to try and showcases personalized experimentation which is great. It's threads like these that helped me learn about Turmeric which HAS helped me. A LOT.

Sure, the sample size is 1, but in so many ways, it's always a sample size of 1. It's part of the reason I love that they're starting to develop tests like the TPMT testing to help personalize treatments to people.
 
Knowing my ego, probably a little.

But I was more trying to showcase just how many variables there are with this crazy disease. It really is about finding what works best for you. If anything, threads like Stephen's here gives people ideas on things to try and showcases personalized experimentation which is great. Sure, the sample size is 1, but in so many ways, it's always a sample size of 1. It's part of the reason I love that they're starting to develop tests like the TPMT testing to help personalize treatments to people.
I probably still have a chip on my shoulder from other recent threads. I just want to make sure nobody's representing something as established fact when it's personal testimony, even accidentally.

I was HORRENDOUS about this 10-15 years ago when I was in the middle of my 7 year remission and feeling pretty smug about my genius. :)
 

David

Co-Founder
Location
Naples, Florida
The interesting thing is discussions like this almost always surround diet. For portions of the population, various medications just plain don't work and the science backs that up. Yet we don't have debates when people start, "My disease is under control thanks to Remicade!" Where are the posts in such threads stating, "Well, be careful and monitor your disease because you may be in spontaneous remission and it's not the Remicade. Many people with Crohn's Disease don't actually respond to TNF blockers so be sure you're being carefully monitored to ensure there isn't some inflammation that is currently exhibiting symptoms but can do serious damage over time. We don't want you to give the idea that this medication is right for everyone."

Keeping in mind I'm not aiming this at you. I'm as guilty as anyone.
 
I actually was going around to a lot of Remicade threads and posting links to the horror stories on my blog, but eventually stopped for fear I'd put people off their meds.

I do still go around posting "Make sure you journal ALL of your symptoms and pay attention to even the least of them!! Nag the crap out of your doctor if you're the least bit worried!"

I think part of the anxiety of the diet threads is that there is very often an implicit statement that these things are being tried without the advice or supervision of a professional. If those threads all started "I talked to my GI/dietician/holistic specialist about this and..." then I'd be less worried.

We all like to have sovereignty over our own bodies but like you shouldn't be your own lawyer I think you equally should not try to be your own doctor. I've encountered people over the years who have even tried to be their own surgeon. Scary stuff.
 

SarahBear

Moderator
Location
Charleston,
I'm surprised we haven't scared Stephen off yet! His thread has spiraled out of his control! :rof:

Stephen, feel free to come into the chat if you want to talk about yourself. :p
 
David, I think there is just more a sense that someone on Remicade is being monitored, at least that is the case with C. The GI stated we have to do a colonoscopy so show remission. But, with diet there is the general sense(false perception possibly) that a GI is not monitoring the progress. I know this isn't pertaining to diet per se but that is why I appreciate the fact that members like crtlz and kimmiedwife are posting their journey with LDN that includes testing results as well...oh and of course Kev.
 

SarahBear

Moderator
Location
Charleston,
I agree with Clash, by the way. I typically try to ask if someone using diet alone is still seeing a GI, because I've seen people talk about how their doctors aren't supportive of the diet option.
 
I think the only thing we can effectively agree on is that genetics plays a major role in whether or not someone ends up with some form of IBD. That being said, there are definitely plenty of examples of people with no gastrointestinal disorders in their entire family tree that still develop Crohn's/UC, or IBS.

Both of these statements suggest that something else, whether it's GMOs, bacteria, allergies, vitamin deficiencies, or some combination of those is a big contributor.

I think the sad thing is that the medical community knows so very little about what really causes this, so all we can do is look at similar diseases that we know more about, I.e. Celiac.

Now, I definitely do not understand the more biological aspects as well as David. But I do know that all forms of IBD are very individual. I refuse to let the pharmaceutical industry blindly treat my symptoms when I have found whole, raw, organic foods (as well as cutting culprits and adding TONS of beneficial supplements) that treat them just as well if not better. I will proceed with caution, but I think everyone would be doing themselves a favor to at least try various diets and do their own research.

Of course, I am not lecturing you, Muppet, as you have been there, done that. It's not a stretch, in my opinion, to say that you are probably better off than you would have been had you solely depended on medication. I just want the newly-diagnosed to know that there are ways to go about treating this disease (depending on the person) that have in some cases nearly brought a "cure."

Don't depend on a doctor to dictate how you should proceed. He might suggest dietary changes, but you might respond with "But I love fast food!" Okay then, Humira in 6 weeks it is for you. Then when that stops working, surgery time. Sorry, is what he'll say.

Mesalamine, sure. It's topical, but we don't even know the long-term effects of even the most "light" drugs. Who knows what immunomodulators do your body in the long-run. If you're only worried about treating your symptoms, it's definitely worth it to do some self experimentation and adhere to basic nutrition principles first.

Maybe I assume too much, but I like to think most people know that the USDA food pyramid is not an example of "basic nutrition principles." Maybe if everything on the pyramid was in it's raw, natural state. But today's processed foods are (debatably) poison, and you have to go to great lengths to avoid them.

Lengths that most are not willing to go.
 

David

Co-Founder
Location
Naples, Florida
I can tell you've really educated yourself Stephen, good for you :) I don't have Crohn's, I have a different form of IBD called Lymphocytic Colitis. I'm detailing my holistic journey here. If you ever want to pop in and see if you have any suggestions, I'd be all ears :)

Oh, and I haven't been to a GI since 2010.

:runaway:

LC doesn't lead to the complications Crohn's or UC does when the disease is mismanaged so it's not a big deal. I agree anyone with UC or Crohn's SHOULD be closely monitored.
 
I totally agree that more people with this disease need to be way more serious about their diet.

I think that you are a very enthusiastic, very young man, with a lot of potential to expand the knowledge and experience here on the forum.

I share your unease regarding the commercial food industry, but I also know that if the entire world relied on organic foods using current methods, we'd have even more starving people than we do now. This is a nasty balancing act that can't be discounted.

I also think that you need to be careful about drawing parallels to other diseases that seem superficially similar. Some people even go as far as claiming that Crohn's and Colitis are just other forms of Celiac, though I know you're not saying that. This could turn out to be a big red herring, is the problem. While some forms of Crohn's and Colitis may share traits with Celiac and even, maybe some day, we'll find parallel or convergent pathologies, we don't really know that yet. LOTS and LOTS of diseases have similar presentations and symptoms and impacts upon the patient, and that's why there's a such a thing as a differential diagnosis done by trained specialists (and only the most experienced and intelligent are generally any good at it.)
 
David while it's probably not a fatal risk for someone like you, experienced, well read, intelligent, and open minded, to eschew professional advice, not everybody is such an academically inclined, scholarly powerhouse and I hate to picture people hunched over their juicing recipes, getting sicker and sicker, avoiding the doctor because they believe all doctors are poison peddlers...

And yeah, I could phrase this a whole lot better and expand on it a whole lot more but I'm nearing the end of my work shift and I'm out of here soon... ;)

Just saw your fine print. :tongue:
 
I agree with Clash, by the way. I typically try to ask if someone using diet alone is still seeing a GI, because I've seen people talk about how their doctors aren't supportive of the diet option.
This is a HUGE problem, especially in childrens' GI doctors. Kids can't change their diet without BIG changes happening at home, and those doctors are prescribing Humira or Remicade on a daily basis. My brother was 17 and seeing one of these and was bluntly told to his face "I have *never* had a patient maintain remission with diet alone, you don't have to listen to your mother."

Sure, he has domain over his body, but that's ubsurd. It's an entire group of children's GI doctors associated with Dell Children's Hospital in Austin. They said this in Austin, of all places. It makes me livid to see a child put on immune suppressors.

I have a doctor (and added him to the directory) that understands that IBD is extremely personalized and is willing to join me on my Diet regiment as well as monitor my progress. Luckily, he agreed to see my brother as well. (Who has actually seen even better results from diet changes than I have!)
 
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David

Co-Founder
Location
Naples, Florida
I share your unease regarding the commercial food industry, but I also know that if the entire world relied on organic foods using current methods, we'd have even more starving people than we do now. This is a nasty balancing act that can't be discounted.
Source please.

And be sure to look up the definition of, "starvation" and see if you want to get into this argument with me :)
 
Source please.

And be sure to look up the definition of, "starvation" and see if you want to get into this argument with me :)
Not at 2 in the afternoon. :)

I'm sure there's craptons of propaganda masquerading as research out there on this topic, but I honestly do feel that the population of the planet is such that some pretty severe methods of food cultivation are called for to keep it all going.

I like my steaks, David. :p
 

David

Co-Founder
Location
Naples, Florida
Indeed. Turn vast areas of the the world into an organic, permaculture food forest.

Incredible amounts of locally produced, highly diverse, nutrient dense food utilizing sustainable methodologies.

Or we can continue to produce vast amounts of corn and soybeans covered in herbicides and pesticides (or as part of the plant thanks to GMO) and shovel it full of synthetic fertilizers and ship it long distances leading to high embodied energy then turn it into highly processed foods because you can only eat so much corn on the cob and edamame and continue to be bewildered that we're all deficient in various vitamins, minerals, and other essential nutrients and getting sick in some form or another.
 
I'd sincerely love to read about how to maintain massive permaculture food forests that remain nutrient dense over generations and don't require massive quantities of synthetic fertilizers to maintain the soil. I'm not sure crop rotation scales but I'd love to be wrong.
 
I can tell you've really educated yourself Stephen, good for you :)
I had an advantage because I went into the disease with my younger brother diagnosed 3 years ago. I should have known to start changing my diet then. I literally had the worst diet humanly possible all of my early teenage years, just because I thought I could do it.

I'm definitely blessed to have a mother that cares about us more than just taking us to the doctor and doing what they say. :ysmile:
 
Stephen I find that statement a little condescending, there are no parents on this forum that don't want the best care for our children. There are GI's that prescribe to the notion that diet doesn't play a role. There are also parents who have tried the diet only route only to have their children decline to the point of emergency surgery. Treatment is individual, as you stated.
 
If my parents hadn't insisted upon a dietician after my diagnosis I'd be much worse off

David I'll read it but it strikes me that as stressed as the rain forests are, they're not being seasonally harvested (removing nutrients and energy from the system) for the purpose of feeding a large first world nation.
 
Stephen I find that statement a little condescending, there are no parents on this forum that don't want the best care for our children. There are GI's that prescribe to the notion that diet doesn't play a role. There are also parents who have tried the diet only route only to have their children decline to the point of emergency surgery. Treatment is individual, as you stated.
And there are also parents that don't know any better, or simply trust anything and everything a doctor says without doing further research. Obviously, every parent in the world (and this forum) wants the very best for their kids.

Sorry, that does sound a little condescending in hindsight, my bad.
 
I think your statement is true for the majority of patients dealing with any illness, not just parents. I think diet plays an important role and like I previously stated can help some patients more than others depending on disease progression, type and alot of other various factors that I know nothing about. As a parent, I decide on what basis I am going to base my treatment decision for my son, through doctor's reccomendation, research and my own personal concerns with each treatment option. But I do understand that other parents may choose a medication based on the reccomendation of their doctor and as long as they are aware of risks vs. benefit and they stay on top of treatment monitoring then I would not judge their decisions in the least.

I think it is great you have been able to achieve what you have with your treatment
 
Because it has been mismanaged. Read the whole article I linked you to.

And the book is amazing.
I can tell that this is obviously an issue that is very near and dear to you, and that you are very likely to be much more knowledgable than I am about agriculture. My failed little raised bed garden is testimony to that. :)

I've read the article, and I have some questions about it and issues with it. I hope that I didn't sound flip when I said I'd sincerely like to read about it, because I was totally in earnest. I hope you'll take this post in the spirit of respectful debate that it's intended in.

The article talks a lot about local populations and the issues they've faced in trying to farm the land despite the local climate issues, most notably flooding, and how those local populations can overcome these issues using ancestral farming techniques that have been proven to solve many of the same problems that contemporary farmers in the region face. What it doesn't address is the concern I raised: whether this will scale to a large first world nation like the US. Firstly, we don't own (at least publicly) the Amazon rainforest, and to try to recreate such an ecosystem in North America would be nearly impossible. Now, lessons learned from this technique might be adapted in efforts to more effectly farm the land "with the grain" of the local climate and terrain conditions, but the article doesn't address any of that. Similarly, it doesn't address regions with the population size and density of the United States.

The article also has one or two phrases that raise red flags for me. It talks about using an aquatic plant to "purify" the water in the irrigation/retention ditches, but doesn't expound on this at all. What do they mean? Do they mean de-nitrification, filtration via biological magnification, what mechanism for purifying are they talking about? If they're talking about literally removing toxic compounds from the water, unless as part of a larger biological cycle and not biological magnification, how is it then that the plants become effective fertilizer when transferred to the soil? To be fair, the scope of the article is probably intended to be high level for readers of this site (magazine?).

Does the book address these mechanisms of purification/fertilization? Does it address redemption of the soil (ie, are they relying on the floodwaters to bring in new nutrients and base elements (maybe the char mentioned earlier is how they're addressing this?))? Does the book address scaling this to larger, denser, culturally diverse populations? What about adaptation of this technique or similar techniques to other climes, where the flood mechanic just isn't present at all or with much less regularity (something I would argue is probably necessary to make this technique very relevant to the US)?

I'm really not trying to be beligerent, I would really love to come away from this thread with a coherent agenda to address the woefully broken agricultural industry in the US. Maybe we need a new thread for this so that poor Stephen can have his back. :)
 

Kev

Senior Member
You know, one of the things that was really frustrating early on for me was that the so called 'experts' couldn't reach some sort of accord... harmony.. agreement.. whatever; on whether diet played a part in IBD... either onset, maintenance, avoidance, tolerance... whatever you want to call it. One GI would tell me diet was extremely important, another would say that.. 'in his experience' (decades) he'd never witnessed diet helping in any way AND there were no studies that iron clad confirmed it played a part. He told me to eat whatever I felt like... it wouldn't make any difference. Might make me feel better.... you know, comfort food. One of my own biases from way back was that I took with a grain of salt anything a young, self proclaimed expert would tell me. Figured I would revise that... include all so called experts... regardless of age or lack thereof. Went to see a nutritionist who specialized in IBD/IBS. Most of what she taught/told me was pretty much just plain common sense. But there was a lot of 'stuff' that was outside my knowledge base. I started reading labels, looking at ingredients, and started keeping a daily diary... intake, output, consequences, all that stuff. Just doing that paid off... I was lactose intolerant... Crohns made it worse (assumption) OR it got worse independantly/simultaneously/coincidentally.. who knows. But, I went on a quest... and found lactose in places I never would have looked. And eliminated it ASAP! And things improved. Immensely! But it didn't cure me... it didn't control my disease. I looked at the SCD. I was desparate! Nothing was working, and I was going downhill in my fight with IBD like a theme park ride. I contemplated the SCD diet, but I also knew that I couldn't... just me personally... couldn't attain it, or maintain it, and a part of me also felt... rightly or wrongly.. that I didn't want to permanently sacrifice that part of my life... I think I characterized it like eating like a monk... to stave off this disease. I'd search heaven and earth till I found something else, before I'd let the disease change my life for me forever. I dunno... guess I thought going SCD or whatever was more like a stalemate than a victory. If I hadn't found LDN, if it hadn't worked, then I might have reconsidered my position... but if I had... capitulated????... I don't know if I would have been truly happy. I would have made peace with it, ... but that is just me... not happy.

OK, enough rambling monologues for one night. Anyone on here, regardless of whatever form of intestinal disease/issue they have, KNOWS, (no matter what the experts say OR don't say) that foods affect us. A sensible diet is key for everyone, even more so if you have a chronic condition (health) AND it may be absolutely possible to contain/maintain a healthy condition if you find a diet that accomodates whatever ails you, and maintain it. There is the rub.... tho the list of side effects is fairly moderate if you go this route.
 
Gianni- fair enough I didn't diet for years. I tried a green tea and garlic cleanse, and no medication, eating healthy stir fries to beggin with, within weeks I couldn't eat anything, and ended up in hospital with crp- high as can be- in the hundreds.

Muppet- I couldn't agree more with your posts. To say diet can cure crohns, in my opinion, is completely wrong. I researched- wont drink chlorinated water, thinking its that. Then probiotics, thinking its bacteria- fungal- that causes crohns. While my gi kept insisting that its simply a chronic illness which needs medication. When I ignored him, I got more sick. So there is nothing that can change my mind, as far as needing meds for crohns, and that there is no cure, unless a doctor himself was to say - a or b- can/could cure it. Until then, I'm glad that we have things such as humira etc to help with symptoms, and put many in remission. I believe if they ever find a cure- it will be medicinal. But that's just my opinion.

One of you wrote about how being in remission, on diet alone- long term, caused a fistula. That was my initial point. That its great if diet works for anyone, but I think without medication, long term, strictures and ulceration, are common in anyone eating a lot of fiber with Crohn's disease.
 
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