Anyone else just get really frustrated with all the dietary advice?

yes, I felt that way for a long, long time.

In the end, I just figured out what to eat that didn't make me miserable. Sometimes I'd get it wrong, and the feedback was immediate. So over the 11 years since my diagnosis I have gradually eaten less salad (used to eat a large one every day), fewer apples (used to eat one almost every single day), more lean protein and fewer carbs, more animal proteins (used to eat animal protein maybe once/week now it's probably 2-3) and finally no gluten. The last change took a while for me to embrace but has really made a tremendous difference.

Be patient with yourself and you will figure it out. My advice is to approach it like a science project and don't change too many things all at once.

Eva Lou said...
when you start to over-research, things get way out of hand. Eat this, eat that, don't ever eat this..... this will cure you! It's a little ridiculous...[/img]

Exactly! I'm sure that these diets have worked for some people, but I can't help but feel like a majority of us just need to figure it out on our own.

Yes!!! REcently my boss and I've been doing Genotype dieting and it's working for him being gluten free now and he's losing weight and feeling better. But I have a chronic illness and my insides are not right and he just doesn't get why it's not working for me. He actually said, why don't you go to the bathroom all at once in the morning and get it over with...and you'll be fine for the rest of the day! I wanted to kick him! He just doesn't get it!!!!

Hi-

The problem is....everyone is different so you just have to try a lot of different foods to see what works for you.

For instance, I like salad and over time have realized that the only lettuce that I can tolerate well is romaine.  Love those mixed greens but they "come out" pretty much as they went in.  Anything that does that is not good..... like whole kernel corn.

 

Eating small meals more frequently is better, but is sometimes a pain when you're having a busy day. 

 

Having read info provided by InSoFla, there appears to be convincing evidence that eating organic grown/raised foods can make a real difference.  I'm going to try to go that route as much as possible.

 

I think Eva Lou has made some good points...sometimes you just need to have that pizza (or whatever) but be prepared to feel the consequences. 

I like her yoga, meditation suggestions. 

 

 

Yes, but I also value quite a bit of the dietary discussions. I think there are several distinct sources of the confusion. Not to blame, criticize, or judge - just to distinguish distinct sources in the interest of a more informed discussion:

• Although many GI tell patients to eat low residue but to eat whatever they can tolerate (because no clear clinically supported advice is available), there is some suggestive evidence that diet is involved. This leads to lots more confusion than if there were no evidence or very clear evidence. You can trace the differing rates of UC by latitude or country and see some correlation to differences/changes in diet. But this also corresponds to differences in annual sunlight, difference in environmental toxins, differences in genetic heritages ... etc. Correlation is not causality, and it is very tempting to assume simple links when the truth is very complicated.

• What works (and why; e.g. SCD eliminated excess food for undesirable luminal bacteria) during a flare and during remission are often not the same (e.g., fiber). Also, a "flare" is individually defined as anything from well formed stool with occasional blood to the other end of the spectrum just one step out of the hospital. What "diet" works along the spectrum also differs. Finally what works differs with our individual genetic and immune system makeup. Just be careful of one-size-fits-all advice, and try to sus out the "why" of how some dietary element is supposed to help.

• While progress has been made, the cause of UC is poorly understood, so is the cause of relapse. In this situation we can feel a bit helpless. There is not clear enemy to attack, no specific behavior or trigger to fix. Attention to diet is great as part of a holistic approach to managing UC, as also in managing UC symptoms - two different things. However more zealous focus on diet, to the exclusion of established treatments, or with the insistence that this will "cure" or "work for everyone" is evidence more of denial and bargaining in something like a UC grief process. It is a way of feeling some control: identify a dietary problem, and fix the problem. We have all felt desperate when treatment did not seem to be helping much. The instinct try more/other things is sensible. Sometimes this manages symptoms, but does not affect underlying autoimmune. Sometimes there are placebo effects. Sometimes "it" works, but standardized dosages and exactly where in the disease cycle to apply is not clear.

• IBS frequently occurs secondary to IBD as our anxiety and stress response all get involved. Also, harder to digest foods we normally tolerate, may be very irritating during a flare. So we end up with lots of symptoms, that are the UC symptoms plus all the secondary symptoms. This is why we see postings reporting almost clean scopings, but still lots of symptoms - or UC present on biopsies, but very few symptoms. The disease and the symptoms are highly correlated, but do not go 1-to-1 exactly the same in every person. When people talk about diet or any alternative therapy, or even medicine for symptoms (e.g., tincture of opium), it is never clear if the benefit target symptoms or underlying UC. 

 

• Personally, I find it very hard to "listen to my body". Not all responses to diet occur overnight, or give a clear an unequivocal response. It is also seldom that we try only one new thing at a time and wait a few weeks between trying something else. When my colon gets hot, I reach for several things I have been studying/considering. More vit-D, more spinach, different probiotics, less gluten, add rectal meds, find a non fermenting fiber ... etc. (Did I mention desperate). While a strong allergy may show a clear response in 24 hours, it is likely that removing the allergen will take a few days to show response. Other changes may take longer (some manybe months), and we may fluctuate a bit from better to worse even as we overall improve. This can be very hard to judge.

 

There are likely a few more points to be made, but I think these are some of the larger ones. Support, and advice, and sharing tips, is great because we want to feel better now, and clinical trials can take so vary long. But when we choose to venture into the world of anecdote and "common sense" we should try really hard to ask "Why does this work?" or "How does this fit with what is known about the aberrant signals in the immune system?" Without the careful design and controls of clinical trials, we need to strive to filter all the advice. Otherwise, we end up swimming in all the contradictory advice that was mentioned in the original posting.

I value hearing all the ideas. But I also try to ask "Why should this work?" and I look to see what clinical evidence exists, and I consider if anything about what is being advised might not fit with something else I am trying. It is mostly when I get barraged with more stringent messages by someone who does not appear to have asked "why" that I get frustrated. Some of this frustration is sadness for newer members who might take the assertions as more "proven" than they are.

I'd like to add to my post above that my dietary modifications had little to do with any benefit I thought I'd get in terms of reducing inflammation in my gut, but everything to do with my full and sometime ridiculous optimism that I could at least not have a bubbly, nauseated stomach and maybe even fewer days of crampy bleh. Those symptoms probably fall into the IBS bucket as DBwithUC so nicely identified above.

While my GI might describe my complaints as IBS, and others including me might call it that, these issues stem from my IBD in my opinion, whether they are directly linked to acute or chronic inflammation, or just a result of the wacky gut flora that exist due to my IBD. So eating the way I have come to eat has in fact helped me FEEL a lot better.

I do want to finish by saying the eliminating gluten has done more than resolve my gut issues and I do attribute some of my other problems in hindsight to an undetected gluten sensitivity. I have been gluten free for 7.5 months and I have much less upper GI gas, lower GI gas, spastic cramping and somehow my lactose intolerance appears to have resolved. That was weird. But most importantly I am not anemic or feeling low, my concentration is better and my knee pain, which was constant for the last 3 years, is about 99% gone.

OK, I guess I am not really done with this post. Eating grass-fed beef, pastured poultry, drinking milk from grass-fed cows and eating organically grown fruits, vegetables and grains is not just a good idea for us IBDers. It is a good idea for EVERYONE. Without a doubt if people could access these kinds of foods more easily and include them in their daily diet most humans would feel better in many unpredictable ways. Just saying.

Yes it can be really overwhelming if you read into all the rules of all the diets out there, so I simplified it and use common sense....I never eat anything processed or fast-foods, or refined sugar. I eat completely healthy and I eat small meals as it's easier to digest and I also chew my food well before swallowing...therefore my body is overall better off, still have some IBD issues but I do have a disease afterall that isn't curable at this point however I still feel that eating healthy and exercising regularly is important for my overall health including my CD and especially considering I have CD I feel it's even more important to eat right and exercise.

Kazbern,

"OK, I guess I am not really done with this post. Eating grass-fed beef, pastured poultry, drinking milk from grass-fed cows and eating organically grown fruits, vegetables and grains is not just a good idea for us IBDers. It is a good idea for EVERYONE. Without a doubt if people could access these kinds of foods more easily and include them in their daily diet most humans would feel better in many unpredictable ways. Just saying."

I whole heartedly agree, except for the eating grains....

WingZero said...
I'm one of those people that tends to go overboard with research and info-searching on what might help keep me nourished with this stupid disease. Around every corner, there is so much contradictory advice. Low carb, no carb, SCD, raw foods, vegan, juice, vegetarian, anti-candida, etc... They all tend to contradict eachother and in the end I'm just left feeling overwhelmed and uncertain.

Does anyone else ever feel this way?

No. I dont seek dietary advice, what works for one person may not work for another. I suppose I listen to anti-inflammatory foods but I experiment myself and learn what works that way.

yes I am going crazy I eat a lot but recently cut dairy, gluten, corn, chocolate spice. what can I eat is the question cuz I'm a great at it!! I love chocolate! and desserts.