Food Doesn't Matter?

[Crohnsnewbie]

I have a food journal with over 30 pages in it and there doesn't seem to be a pattern. Seems like I randomly have diarrhea throughout the day up to 10 times. People say there's always a pattern but there's not If I go out once a month, I have more diarrhea but sometimes if I stay in I have more diarrhea. I really don't get how food is supposed to help Crohns Disease............They say food doesn't give you Crohns therefore why should it matter?

 

[David]

One of the biggest problems is people look for a direct and short term correlation between foods and symptoms. "If I eat X, I get Y symptom Z duration later". Now, for some people a few foods ARE that way. Ask around and see how many people can eat popcorn for example

I am of the opinion that diet matters a TREMENDOUS amount. Why else would enteral nutrition have the same remission rates as prednisone in certain populations? And why after ending enteral nutrition do some many people quickly relapse if they don't utilize a very strict elimination diet?

Food journals are great to help find those short term, direct correlations. But in many respects, it is so much more complicated than that. For example, the specific carbohydrate diet in essence feels that foods that contain starches, lactose, disaccharides, and other complex sugars can't be broken down in the gut by people with compromised digestive systems. This leads to those undigested sugars and starches fermenting and feeding non-beneficial bacteria which then cause all sorts of problems which creates a vicious cycle. So eating those cheetos and sugary cereal might not lead to diarrhea 3 hours later, but they're perpetuating a cycle that doesn't allow the gut to properly heal.

 

[S mom]

Hey, we are going through the same thing right now. My 16 year old son was diagnosed last Sept and we diligently kept a food journal... pages and pages... and like you, there seemed to be no rhyme or reason behind his "good" days and "bad" days with respect to food. There are a couple of obvious things - like eating really spicy or really greasy foods that seem to make his diarrhea worse, but generally speaking, we can find no other patterns. I talked to his GI about this and she indicated that reactions to food are really individual and for lots of people, there are no foods that "cause" symptoms. She suggested that we just work to have him eat healthy foods to keep nutrition up and to not drive ourselves crazy looking for patterns - cause Crohns just does it's own thing and maybe the day to day variations are not even related to food (like stress, battling a virus, lack of sleep... just Crohns being Crohns...). So, my understanding is that there are some foods that make some people feel worse but that doesn't apply to everyone and that diet usually will not "fix" the problem... finding the right drug(s) will.

 

[CLynn]

My specialist told me "if it bothers you, then don't eat it", and left me to figure it out, however, once the ilium started building up scar tissue, and inflammation on top of that, he would order me to restrict my diet accordingly, no fat diets, baby food fruits and veggies and V8, no bread or buns with sesame seeds, nuts, etc.

 

[CLynn]

And certain days, I can eat things and be fine, other days the same food will bother me.

 

[Crohnsnewbie]

I though of trying the SCD Diet but after reading that over 50-60% of people were unaffected by months of the diet, seems almost pointless. Plus you end up restricting yourself from most food only to find out that it didn't help anyway?

 

[David]

And certain days, I can eat things and be fine, other days the same food will bother me.

That's not too surprising. One example is the intestinal epithelium (the layer of cells that line the intestines) is completely renewed every 4-5 days! So you can go from a total mess to doing great in 4-5 days depending on diet, medicine, pathogens, nutrient levels and a million other variables, most of which I don't understand

 

[David]

I though of trying the SCD Diet but after reading that over 50-60% of people were unaffected by months of the diet, seems almost pointless. Plus you end up restricting yourself from most food only to find out that it didn't help anyway?

Can you link me to where you found that statistic please? And ask those 40-50% that were affected by the diet if it was pointless

To me, it's about finding what works for you. Why continue doing something that we know DOESN'T work when there are lots of options out there that MIGHT work? Yes, it may take years to optimize diets and treatments for yourself, but good god would it be worthwhile in the long run You're doing great keeping a food journal but, when you're ready, expand that scientific self-inquiry. Continue to take control

 

[David]

See, now I feel better, David, if you don't understand some of our stupid, frustrating disease. You know way more than me, for sure. Would love to eat all organic or homegrown, just not feasible on some incomes and some areas of the country.

Oh my, I know SO LITTLE about IBD and all the mechanisms involved but I'm committed to learning so I can advocate for myself and others. What's really frustrating for me is for every 10 things there is to learn about Crohn's Disease, maybe .001 things are published about my form of IBD. So I have to take information on Crohn's Disease, UC, and other forms of IBD and then see if it might applicable to Lymphocytic Colitis. So far so good on the specific carbohydrate diet at least

And I hear you on the cost of organic/homegrown. But every bit helps! Even a SMALL garden that costs you $15.00 a season can be beneficial AND so satisfying. And stores like Target are getting in on the action! I just started to buy a few organic things there at MUCH cheaper prices than Whole Foods which is wonderful

 

[mario]

This may or may not help but i reduced dairy products because they made me feel a bit queasy. Then recently i eliminated all dairy, substituting soy and the change was dramatic. I have even begun to gain weight. Google'lactose intolerance' you will be amazed at how many people are intolerant or allergic. Also cows milk is pretty yuk when you start reading about it.
Good luck
Marie x
Ps I assume you are on meds for D?

 

[Crohn's Mom]

That's not too surprising. One example is the intestinal epithelium (the layer of cells that line the intestines) is completely renewed every 4-5 days! So you can go from a total mess to doing great in 4-5 days depending on diet, medicine, pathogens, nutrient levels and a million other variables, most of which I don't understand

Very interesting David! I didn't know this and it makes such good sense
Do you think this theory could also apply to why a person could be starving and eat and eat and not feel "full" or "satisfied", and then a few days later feel like they are going to explode and can't eat for days ?

 

[chrisnsteph1022]

I tried an elimination diet for several weeks and noticed zero improvement. In fact, I got worse. Maybe I did something wrong. I didn't do EN before starting. I didn't buy all organic. I still ate rice, which is a grain. There are so many factors. But seeing NO improvement whatsoever has deterred me from trying dietary changes again. There are certain things that make my symptoms worse, like excessive alcohol or red meat, but for the most part, I just eat whatever I want.

 

[AlliD511]

I tried an elimination diet for several weeks and noticed zero improvement. In fact, I got worse. Maybe I did something wrong. I didn't do EN before starting. I didn't buy all organic. I still ate rice, which is a grain. There are so many factors. But seeing NO improvement whatsoever has deterred me from trying dietary changes again. There are certain things that make my symptoms worse, like excessive alcohol or red meat, but for the most part, I just eat whatever I want.

Same here, no changes in my diet affected my Crohn's, flares or no flares, there was no improvement. Today, I still eat pretty darn healthy and buy organic as much as possible, but I personally don't feel like I fit into the "I eat x and I flare x hours later" template.

 

[Jennifer]

Everyone is different and every flare is different. While already in a flare any food could set you off, just depends on how poorly you are on the inside. While in a flare you can avoid extra greasy foods, spicy foods or foods that contain high amounts of fiber and steam your veggies rather than eating them raw. That's just a very basic diet to follow and is the most dieting I ever did during a flare. What's the point? The point is to reduce the amount of symptoms you have in the first place. If any food at any time is affecting you then maybe you could try smaller and more frequent meals throughout the day and try supplement drinks like Ensure. Irritating a gut that's already irritated by eating things you know aggravate it only prolongs your symptoms but when you're in remission, food is not a factor.

 

[CLynn]

Speaking of food and discomfort, am trying Chinese today. I miss it, have to have it sometimes. Just eating it very slowly, take all afternoon to nibble on it, lol!

 

[Jennifer]

I don't think anyone can digest at least Americanized Chinese food. Even though I'm in remission, it comes out quickly looking just like Chinese food.

 

[David]

I tried an elimination diet for several weeks and noticed zero improvement. In fact, I got worse. Maybe I did something wrong. I didn't do EN before starting. I didn't buy all organic. I still ate rice, which is a grain. There are so many factors. But seeing NO improvement whatsoever has deterred me from trying dietary changes again. There are certain things that make my symptoms worse, like excessive alcohol or red meat, but for the most part, I just eat whatever I want.

I feel your pain.

The very first diet I tried was 10 days on rice and squash. It was terrible and good god did it not help. I thereafter assumed that my disease had no connection to diet because what could be more benign than rice and squash?

Since then I've been reading everything IBD related I can get my hands on. And I keep coming back to bacterial overgrowth. That so many people benefit from the cipro/flagyl cocktail tells me that bacteria is involved (my specific IBD has excess lymphocytes which hunt bacteria which tells me bacteria is likely involved). It all just seems to fit. I don't think diet is going to cure Crohn's Disease just as diet doesn't cure Celiac Disease, but I think in many people, it can help substantially if the puzzle pieces are put together. Thing is, I think at this point we just dumped the puzzle onto the table out of the box and some pieces fell on the ground and the cat ran off with one.

Anyway, IF the Specific Carbohydrate Diet and Paleo Diet theories are right (both work to deal with bacterial overgrowth) then your and my rice elimination diets were doomed to fail If my current SCD doesn't work (so far so good!) then I'm going to try a new elimination diet. My base food will be ground turkey. Hopefully I don't have to test out that theory though.

 

[Misty-Eyed]

while I agree with practically everything David has said, I still think that diet over emotional wellbeing has to be balanced too.

I was on an egg and milk free diet for over a year and within that time I was also on a complete EN diet for over 3 months and have been on it many times since. Unfortunately none of it helped at all. In fact I ended up clinically depressed from being ill for so long and not being able to eat anything. Eating is a very social thing as well!

I think keeping a food diet and trying different diets is definitely a good idea. There are so many people who have gone into remission from EN diets. But try not to feel so disheartened if results are not seen. And please don't keep trying them if it's not doing your mental wellbeing any good too! Stress is also a factor in making Crohn's worse. I now have an awful relationship with food and it even got to the point where the hospital thought I had an eating disorder! Eeek!

David said it well when he pointed out to do what works best for you. There are certainly no definite rules when it comes to remission tactics in crohn's! That's why we have such a diverse forum!