Diet frustrations

Low res/fiber seems to be doing pretty well at the moment, but I worry that it's not healthy in the long scheme of things. Yet at the same time, I feel like I have more energy now - enough so that I've started running again after having to take off a full year because of my flare-up. I try to make healthy "crap" choices (going for organic refined products or whatever has the least amount of ingredients), but I continue to get nagging advice from people on other forums about how I need to go SCD (which I've done) or Paleo (too restrictive) and everything in between. Like seriously, if I read one more comment from someone suggesting I read "Breaking the Vicious Cycle" or "Life Without Bread" or "The Makers Diet", etc, I'm going to scream.

First off I've tried a lot of those things and I didn't notice improvement. Maybe I didn't do it in the right manner - maybe I ate too many "advanced" foods too soon or something, who knows. The thing that frustrates me about those diets is that they aren't clear on how to do them, and furthermore I'm tired of getting advice about a disease that NOBODY really seems to understand anyway. I mean, that's great if those diets have worked for people but for me it just makes me feel incredibly anxious about everything I am putting into my mouth. Sometimes I think my symptoms would be 90% better if I just stopped listening to the people on forums, or the books, and just ATE when I felt hungry and stopped worrying about what it may or may not do to me. Obviously if something causes a reaction, that's merit to cut it out, but I agonize about literally everything I shovel into my mouth these days. This disease has caused me to have a horrible relationship with food, and then when I DO find things I like eating - that might not necessarily be considered "healthy" by some people on these extreme diets - I get reemed out like I'm a moron or something. Maybe their diets are healthier than mine, but darn if they aren't preachy as hell when it comes to them, and part of me wonders why, if they are doing so well, do they feel the need to stomp around shouting their triumphs? Shouldn't they be out enjoying life instead of visiting a bunch of miserable people like myself to tell us we're all messing up because we don't follow XYZ diet?

I'm really just tired of all the diets, the advice, the feeling like anything I do is going to make my condition worse. Can't I just enjoy my vanilla Ensure without some Paleo a-hole telling me it's garbage? Yeah, well so is NOT EATING ANYTHING. I mean really, I'm just super tired of everything related to this disease right now but I can't escape it because it's unfortunately a very large part of my life. I want to make the right choices and I really do try to, but the more voices I get from the outside, the less sure of myself I am when it comes to these things, and then I start to feel like I need to recluse. At the same time, though, I need the support now more than ever.

I hope some of this made sense. I'm just really frustrated lately. I want total remission so badly it's not even funny. :|

That's how I feel about it - that short of having a reaction, it really doesn't matter where the source is coming from so long as I am eating. I'm one of those people that needs to put on weight because of the scary weight-loss from flaring, and things like Ensure I feel have been helping (and I honestly enjoy the taste). But I'm constantly being looked down on by those crazy smug extremists who like to make their condescending comments because I'm not eating what they believe our ancestors ate millions of years ago - and seriously, they must be smoking something if they think the food we have available now is anywhere close to what it was millions of years ago. I'm not saying a diet rich in fruits, veggies, and good meats/fats is unhealthy or stupid... But why be a jerk to someone who can't tolerate, or maintain, that way of eating?

I do worry about my health in the long-term but I feel like these diets, and the stress that can arise from them, can cause more damage than just having Crohn's by itsself.

And thank you for letting me rant :D

Crohn's is one of those diseases that manifests differently in everyone (with some main shared symptoms of course), and everyone has different things that work for them. I have encountered the exact same intolerance by people who are on these diets (full disclosure, I am on the SCD, though I have modified it) and it just boggles my mind. There is NO known cure, and this disease is so varied that no one has the right to get onto their high horse and proclaim that there is only one right way to treat Crohn's. It makes me feel so rejected and unmotivated when people tell me that what I am doing to successfully control my disease is wrong and isn't enough. I am just trying to do the best I can!!!

I completely agree with NiceCupOfTea - do what feels right. I would argue that stress has far more impact than diet with our disease. I can be completely perfect with SCD and then get stressed about something and just feel absolutely awful afterwards (cramps, nausea, diarrhea, the works)! Just take care of yourself the best way you know how and stick to it - ignore the self-righteous people who claim they know what is best for anyone other than themselves.

In the positive, congratulations on the improvements you have been able to make, and also with picking up running again! That is great news, and I wish you all the best with regards to achieving remission.

The idea behind a paleo diet (and SCD) is to consume meats and fats in place of grains/bread. Meats are typically very high in Omega 6/inflammatory fats, so a Paleo Diet can actually worsen symptoms in some people. That's not to say that SCD/Paleo doesn't work for people, but not for everyone, and my problem is with those people who insist that it's the silver bullet for this (and many other) disease.

It's not always bacteria that is the problem. I've had all the stool tests, etc, to see if that was the case and it's not. I've taken probiotics (even high potency ones) with no marked improvement. I know you had a post about seeing a new GI who's theory is that it's strictly bacterial - and while I agree that it is to some extent - there are so many other factors that can affect your bowels. I really think it's foolish for anyone to say that they know what causes this to happen. None of us really know. We're just in an eternal struggle to try and figure it out and some of us are willing to go to extremes in hopes of finding relief.

Balancing out gut flora (bacteria & yeast) has worked for me and many many others. I just can't see anything else but an environmental factor being a cause for intestinal inflamation. Balancing out gut flora can take a long long time.

NCOT...Your links all say "may" and one of them actually just mentions a western diet and not red meat. If red meat was such a causitive factor I wonder why the entire western population don't have an IBD. As far as the autoimmune theory, I think the mainstream is catching up to that one. There hasn't been any proof yet that people with IBDs immune system is acting inproperly. The reseaech shows that that the immune system is acting to a pathogenic agent. They just haven't found the agent yet. The location of must inflammation (iieum and colon) also points to this as well.

dfdavedf said...
"The idea behind a paleo diet (and SCD) is to consume meats and fats in place of grains/bread."
Grains and breads are 100% not on the diet, so your point is sort of true. However the amount of meat and fats is not recommended. I wish the balance was, as I am still trying to figure it out. FYI - At this time I think for me a 30% fat, 30% protien, and the rest fruit and veg is best for me

" Meats are typically very high in Omega 6/inflammatory fats, so a Paleo Diet can actually worsen symptoms in some people."
First, most of the omega six imbalance comes from processed foods. This is eliminated in SCD. Also, I try to eat free range protein and that has a much better balance. I learned about the 3 to 6 balance from Paleo and have incorporated it into my diet. An example of this is the mayonnaise I make. I use pastured eggs, macadamia oil (has the best 3 to 6 ratio of any oil and tastes fantastic), coconut oil (for the anti fungal), sea salt, indian pepper, and my home made french Dijon mustard.

My problem with the meat and fat based diets is that you will be consuming a large quantity of meat/fat to get your calorie needs for the day (which tend to be doubled or even tripled in IBD patients). I don't see how this ends up being any better than if you ate a modest amount of grains/starches, really (assuming they don't cause problems), in terms of the Omega balance.

I do agree that processed foods aren't great for you and I don't think there is anything wrong with following a diet if it works for you. My problem, once again, is with the insistence that it's the "one size fits all diet" - because it's not. We all have different needs. I've tried these diets (not Paleo though, to be fair) - they didn't work. I've been trying to "balance my gut flora" for 14 years now, before I was on medication, and unfortunately even my "fanatical adherence" to all these miracle diets over the years hasn't changed anything.

I do think a good diet is important, but it's different for everyone. What works for you might not work for me and so forth. Just because it works for thousands of other people doesn't mean it works for everyone. And diet is not the only aspect of this disease that needs tweaking. For me, I really think my stress level is what gets me in hot water. Maybe when I figure out how to manage that the diet that works best for me will follow? In the meantime, I'll just stick to my food diary and see what happens.

NiceCupOfTea said...
@livingwell - All of those links specifically mention 'animal protein' or 'meat', amongst other things. And all scientific studies use qualifiers like 'may' instead of 'proven', because nothing is ever proven 100% in science. The relevant phrases are ones like 'positive association', 'association with increased risk' and so on.

"If red meat was such a causitive factor I wonder why the entire western population don't have an IBD" -

Because they don't have the 'right' genes. If you don't have a genetic susceptibility to IBD in the first place, you are not getting IBD no matter what your lifestyle is or how often you are infected with MAP.

"There hasn't been any proof yet that people with IBDs immune system is acting inproperly. "

Yes, there has.

http://www.ncbi.nlm.nih.gov/pubmed/18161747
http://www.ncbi.nlm.nih.gov/pubmed/16890491
http://www.ncbi.nlm.nih.gov/pubmed/20860961

There is nothing definitive in those links that point to a disfunctioning immune system. it's all hypothetical.  If anything it all points to immune systems acting on a infectious agent. More like by products(toxins) from infectious pathogens. And by the way..thos used to be in the medical literature years ago.

 

NiceCupOfTea said...
Sigh, of course it's hypothetical. The whole point of scientice is that scientists think up hypothesies and then devise experiments to 'prove' (in inverted commas) whether they are true or false.

You denied there was any proof that people with IBD don't have dysfunctioning immune systems, so I gave you that proof. Which you are still busily denying, just like so far you have denied or ignored anything which doesn't match up to your preconceptions.

You admitted that you do think that SCD and it's premise "should" work. You also mentioned that it would "effect" your quality of life. But you sit on your keyboard and attack the "fanatical" dieters. Have you ever thought your comments might prevent someone from actually trying to help themselves by eating well? It loks like the diet is too hard for you so you attack it. You should be ashamed of yourself.

NiceCupOfTea said...
You admitted that you do think that SCD and it's premise "should" work.

Uh, no, nowhere did I say that.

You also mentioned that it would "effect" your quality of life.

It would. By taking away the few remaining pleasures I get left from eating.

Have you ever thought your comments might prevent someone from actually trying to help themselves by eating well?

Nope, if they're interested enough they'll do it, as many have done and many will do.

It loks like the diet is too hard for you so you attack it. You should be ashamed of yourself.

You should be ashamed of yourself for knowing nothing about IBD and promoting false information about it.

False information? everything I said has been proven..again..I'll send you my labs.  Good luck waiting for a drug to cure you while you snack on your twinkies

 

Nothing you have said has been "proven". You don't even know science, dude. You don't know science, you don't know the basic facts about your own disease.

*rolls eyes* Hey, thanks dude.

PS: I'm a dudette >_>

PPS: There's several kinds of diets which work for Crohn's. But you wouldn't know about them 'cos you're too busy gnawing on mammoth meat >_>

[quote]False information? everything I said has been proven..again..I'll send you my labs. Good luck waiting for a drug to cure you while you snack on your twinkies

This is an extremely unnecessary comment. I think it's best if we don't turn this into a crap-flinging fest just because we might not all agree with eachother.

The fact of the matter is, none of us know what causes disease to happen - if we did, we'd have cures for just about everything from IBD to cancer. If your case happened to be a bacterial one and you've successfully managed to treat it with diet and whatever else, great. But the reality is that everyone is different. Different triggers, different diets, different medications. Nobody is saying your method of treatment is wrong - the original point of my post was because I'm sick and tired of being told that *mine* is. There is no need to look down on someone just because they don't share the same view as you do.

WingZero said...
[quote]False information? everything I said has been proven..again..I'll send you my labs. Good luck waiting for a drug to cure you while you snack on your twinkies

This is an extremely unnecessary comment. I think it's best if we don't turn this into a crap-flinging fest just because we might not all agree with eachother.

The fact of the matter is, none of us know what causes disease to happen - if we did, we'd have cures for just about everything from IBD to cancer. If your case happened to be a bacterial one and you've successfully managed to treat it with diet and whatever else, great. But the reality is that everyone is different. Different triggers, different diets, different medications. Nobody is saying your method of treatment is wrong - the original point of my post was because I'm sick and tired of being told that *mine* is. There is no need to look down on someone just because they don't share the same view as you do.

I agree..But what I don't like is people attacking diets and other natural methods because there is no scientific evidence that we will never get from the mainstream. Attacking it on a message board might sway someone that might benefit from it from not trying it. That's irresponsible and dangerous. I'm sorry the diets haven't worked for you. I do know that it takes different amount of time and usually alot of tweaking for it to work for most people.