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Crohn's Disease
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Posted 2/5/2010 5:39 AM (GMT 0)
I"m so confused. Foods that I have put down as no no's give me a flare one minute and the next all is fine.

I don't know whether to fo dairy free, gluten free...

My GI said that there's no diets etc for Crohn's just that if it gives you a flare, don't have it and yet other people are telling me to cut out just about everything.

I've never been good with diets and the thought of cutting out gluten and dairy scare me.

ANy thoughts or suggestions?
Posted 2/5/2010 6:29 AM (GMT 0)
It can take a long time to fiugure out for sure which foods may be your no no foods....are you keeping a food journal? Even with a food journal it will take some time to figure out for sure which foods are more bothersome to you....you just have to be patient. You could start with just cutting either dairy or gluten and go from there, you may not necessarily have to cut out both.


:)
Posted 2/5/2010 6:31 AM (GMT 0)
You don't need a gluten free diet unless your a celiac (your tested?) although that diet helps some of us. You don't need a diary free diet unless your intolerant in which case you can take lactaid. Some people are actually allergic to dairy but you may need to be tested to be sure. Some of us tolerate dairy I'm ok with it unless I'm flaring. Your second sentance is soooo true! A safe food today could be disaster tomorrow and fine again next week. Listen to your body and try to figure out when things are starting to go bad for you. I weigh myself every night if I'm putting on weight 2 days in a row and my bm's are less than normal it's time to go easy on the diet. If my weight's going up and bm's stop, go to a liquid diet. I can catch about half of my flare ups this way.
Posted 2/5/2010 10:31 AM (GMT 0)
I'm the same way (confused about food), it does seem to me that something that has been fine in the past will cause me lots of pain and something that has made me so sick will be fine. I'm keeping a food diary to help now but it is a long process figuring this stuff out... I've only been diagnosed for a little over a year, I'm still trying to figure everything out. At the beginning I tried dairy free and gluten free too. Now I have both of those in my life but steer clear of excess sugar, fat and fried things.
Posted 2/5/2010 2:23 PM (GMT 0)
I have found in the past that there are things I can have once in awhile, but for example can't eat two days in a row. I know it sounds weird, but you aren't alone.

I won't do any diets that is going to deny me alot. I personally follow a modified low residue diet all the time and it agrees with "ME". You need to find out thru trial and error what works best for you.

Good luck!
Posted 2/5/2010 3:39 PM (GMT 0)
I follow the Specific Carbohydrate Diet (SCD), which is gluten, starch, sugar, and lactose free. Sounds very daunting, but it's not bad at all. I've been on it over a year, so it's now second nature and very easy to follow. It has helped me so much! Since my fistulas healed, I know that one of the above no-no's was the cause. I will never go back to eating the way I used to.

Like the others said, definitely start keeping a food diary. If a food bothers you as many times as it agrees with you, it would probably be a good idea to cut it out. There are so many foods out there to enjoy that there's no point in eating ones that make you sick!
Posted 2/5/2010 3:54 PM (GMT 0)

Just chiming in to say that we have the same problem here with my daughter. Some days she's okay and seems to tolerate things fine. Then the next time we're like "oops, steak gives you a tummy ache so no more steak". We go thru this constantly. 

Sickandlucky, I can say tho that we have found that those same exact foods (sugars, fats, fried things) are almost a guaranteed stomach pain trigger.  Not gluten, sometimes dairy but only if there's LOTS of it (ie, milkshake). 

This is so hard to figure out.  She seems to do best on a Low residue, Low fiber diet.  So much less tummy pain this way, but also so limiting.

Posted 2/5/2010 7:38 PM (GMT 0)
Me too! I haven't been able to make sense out of what I can eat, even with the help of a food diary. I'm currently doing SCD, which I do think is helping immensely. I'm in the process of moving though so I had to go off the diet because I just didn't have the time necessary to prep the SCD food. So I've been off the diet for a couple days now, with no ill-effects. Plus, for me, no matter what I eat, if I'm stressed about something, I'll get a flare.

ETA: Wren, I guess my post didn't offer much helpful advise to you, but just wanted to say I totally understand your frustration :)
Posted 2/6/2010 2:51 AM (GMT 0)
It's all about trial and error. Believe me, you'll KNOW when foods are not good for you!
Posted 2/10/2010 6:52 AM (GMT 0)
I can do dairy and gluten, but the one big trigger for me is fiber. My system can't handle a lot of it...which is the one thing I've found with "dieting" is that most diets to lose weight focus on eating lots of fiber, which triggers obstructions for me...so I'm just overweight and that's how it'll be for me. I know this wasn't what you were really talking about, but that's the one thing I try to avoid.

Also, I've gotten a juicer and can have more fruits and veggies that way since it breaks down the food and my body can handle it. Right now I'm on coumadin for clots, so I'm avoiding juicing the greener veggies since I'd have to start all over with coumadin dosing, but in a few months (hopefully) I'll be off and see how my body does with more juiced veggies.
Posted 2/10/2010 6:54 AM (GMT 0)
Forgot to mention also, that I'm so like you in the fact that one day I can eat something and it doesn't bother me at all, and another day it's a problem food. I just judge what foods I can eat (salads especially) by whether the past couple days have been good or bad belly days.

For most people with CD, you can't handle popcorn, but I've found that if I break it apart and pull out the shells, it's no problem (granted, it takes me about an hour to eat a snack sized bag of popcorn)
Posted 2/10/2010 3:28 PM (GMT 0)
I've had cd since1970, 9ft of small instine have been cut out, inflamed at resection area, I find it is a lifestyle change you have to make, no fried foods, stay away from snack type foods,i.e. potato chips etc. candy bars, evan protein bars can be like a candy bar, try not to consider it as a diet, lifestyle is so much easier to accept, and be proud of that change. remember, eat to live, don't live to eat. stay consistent and you will have less issue's. imuran 50mg x3 pred. 15mg x1. vicodin when needed.

Posted 2/10/2010 4:17 PM (GMT 0)
 

Some foods are easier to avoid: popcorn, green salads, seeds, high fat (causes/worsen D), big steaks (for me), alcohol (lots of).

While other are more subtle... if you eat 2, 3 or 4 days in a row you can get a flare, but they doesn't "flare" you immediatly, but they vary from on to another, like: coffee, dairy, soda, yeast (not sure), black beams, chokolate, citric fruits and there we go...

Some times I feel like a living lab. 

Posted 2/10/2010 8:09 PM (GMT 0)
Hi Wren12,
I am fairly confused about food myself. Basically, when I was having a flare, I felt really bad after having onions and lettuce.
After my firts surgery I had to be on low residue diet and was eating mainly chicken, white bread, cous-cous and cooked carrots,parsnip and celery. Stopped it after a blood test that showed malnutrition and doc was really surprised when I told her about my diet and recommended eating everything and excluding only what makes me feel bad.

Since then I reached remission and can eat everything (still avoid eating bigger amounts of onions thoughskull ) and feel fine, with occasional D. Blood tests showing I am a healthy person cool .

So out of my experience, eat what makes you feel good and avoid what doesn´t.
Posted 2/10/2010 10:08 PM (GMT 0)
if you're bad with diets, don't waste your time with SCD. you have to be a hyper-motivated individual in order to follow through with the 2 year course.
Posted 2/11/2010 9:37 PM (GMT 0)
Thanks everyone for all your replies and sorry for not replying to all.

Yep fibre seems to be a bad one for me too as are onions, tomatoes, oranges, wholemeal or seed bread and chocolate...though when tummy is ok I can sneak a small amount of chocolate but try not to.

But yeah, it changes all the time and like to confuse and keep me on my toes.

I had a look at the SCD and it does look pretty intense. I wondered about perhaps trying to incorporate some of the ideas into my eating habits but suppose you have to go the whole hog to see the benefits.
Posted 2/12/2010 7:58 PM (GMT 0)
Wren 12, it seems to me that you could benefit from reading: "The New Eating Right for a Bad Gut" - written by Dr. Phd. James Scala. He is a Phd in nutrition and has interviewed hundreds of Crohns/IBD persons prior to writing this book. To be ordered at www.amazon.com

He suggests how to reduce diarrhea. How to eat if you're having strictures/obstructions.
Why eating fiber. Why avoiding certain fibers. Why eating fruits and vegetables, what fruits and vegetables to avoid. How to avoid being dehydrated. How to balance your K-factor and why this is important to avoid fatique and tiredness.

I suggest this book because it's a good starter to use to understand why we react the way we do. It's easy to read and to understand, he's not talking in heavy medical terms./Bee
Posted 2/13/2010 5:32 AM (GMT 0)
I would take all the advice and then break it down very slowly and carefully.

For example, first take out what you know can be known offenders likes alcohol, caffeine, popcorn, fried foods, artificial ingredients and trans fats, etc in addition to processed foods. No fast foods.

Then maybe try taking out all raw foods or uncooked veggies/fruits (googles low residual diet)

The s l o w l y ad a powdered fiber to your diet to compensate for the above...

then try with the no wheat/gluten, dairy, etc .... just an idea of where I started with as I'm not lactose intoleratant nor have Celiac disease ...

hope this helps a little. FYI, I find that when I'm not flaring or when I'm on prednisone, I can get by tasting a little bit of anything. Just having a bite of something I miss helps to get by ...

Good luck and keep us informed!
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