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Crohn's Disease Forum » Your Story » Have my Crohn's under control with diet


 
11-30-2012, 01:24 PM   #31
David
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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
11-30-2012, 01:26 PM   #32
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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

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11-30-2012, 01:27 PM   #33
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Also, bias in observations is generally better dealt with by folks trained to recognize and moderate it, also by peer review
Nice ninja edit

Read this yet?
11-30-2012, 01:29 PM   #34
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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.
11-30-2012, 01:29 PM   #35
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I think I effectively disclaimed that I'm not advertising a miracle cure.
11-30-2012, 01:30 PM   #36
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I think I effectively disclaimed that I'm not advertising a miracle cure.
I think you did, too. I just felt like the forum in general needed a little cajoling in this area, as of late.
11-30-2012, 01:32 PM   #37
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Also showing off. :P

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.
11-30-2012, 01:34 PM   #38
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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.
11-30-2012, 01:39 PM   #39
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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.
11-30-2012, 01:43 PM   #40
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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.
11-30-2012, 01:43 PM   #41
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I'm surprised we haven't scared Stephen off yet! His thread has spiraled out of his control!

Stephen, feel free to come into the chat if you want to talk about yourself.
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11-30-2012, 01:43 PM   #42
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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.
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11-30-2012, 01:45 PM   #43
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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.
11-30-2012, 01:52 PM   #44
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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.
11-30-2012, 01:56 PM   #45
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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.



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.
11-30-2012, 01:57 PM   #46
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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.)
11-30-2012, 01:59 PM   #47
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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.
11-30-2012, 02:00 PM   #48
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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!)

Last edited by Stephen; 12-01-2012 at 12:17 AM.
11-30-2012, 02:00 PM   #49
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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
11-30-2012, 02:03 PM   #50
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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
11-30-2012, 02:10 PM   #51
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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.
11-30-2012, 02:14 PM   #52
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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.
11-30-2012, 02:18 PM   #53
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*points to the amazon rain forest*

And since you'd sincerely like to read about it, here you go. I expect a book report before Christmas break
11-30-2012, 02:19 PM   #54
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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.
11-30-2012, 02:21 PM   #55
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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.
11-30-2012, 02:22 PM   #56
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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.
11-30-2012, 02:24 PM   #57
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Because it has been mismanaged. Read the whole article I linked you to.

And the book is amazing.
11-30-2012, 02:25 PM   #58
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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.
11-30-2012, 02:27 PM   #59
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Your ability for self reflection and honesty is impressive Stephen. Kudos!
11-30-2012, 02:44 PM   #60
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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
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