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so, is all food harming us?

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Crohn's Disease
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Posted 11/19/2010 7:10 PM (GMT 0)
I'm 30 year old 10 with crohn. this time I'm taking imuran, prednisone and pentasa, and not getting remission.

I feel I never have remission and I see many diets around. But each and every diet seem to have some food will harm us.
SCD allows honey and paleo says honey is not for us. The same is for 24hours yoghurt.
Nuts are not allowed because we are inflamed.
All carbs are not allowed this is easy cause ALL diets says this. No this is not true raw veganists say you can eat steamed potatoes. No sugars at all (apart honey?)
Fruit? I don't know SCD allows fruit but not citrus if you have diarrhea (is there anyone withouth diarrhea here?) and bananas only if ripen. No citrus fruits neither citrus juices. But other claim fruits have fructose and we are not tolerating fructose due to the lack of enzymes. What about meat? Seems to be good but only if you get enzymes cause proteins need enzymes. Boiled vegetables? Someone says it has fiber you can't eat it. And no vitamin cause it's boiled. Perhaps you can have it juiced. Eggs. You could not tolerate eggs! Stay away from there! Bacon? If it has not sugars, maybe... Fish is ok, oh, wait no! It has high mercury concentrations stay away! And probiotics? Bifidum no good! No bifidum is good! It goes straight to the colon! No it causes diarrhea! It is for constipated people!

This is making me crazy. I'm beginning to feel WHAT WE EAT have nothing to do with the disease as doctor are saying! And if you don't respond well to the medications (I'm waiting for the infliximab and I am already sure it won't work or it will worsen my health!) you can keep your intestines inflamed, or perhaps have a ostomy! But I don't want an ostomy. I'm feeling lost my friends I really don't know! Sorry for me whining I need to whine at this time. Is any of you living with the crohn, never in remission and never have surgical like me?
Posted 11/19/2010 7:42 PM (GMT 0)
I shared your frustration as for many years have seen food as an issue but couldnever quite work it out.

I recently started FODMAP which is big in OZ and NZ and growing overseas esp in UK.  After 20 years of crohns with the last 10 really miserable I am now having no symptoms. My only supplement is Vit B injections ans Vit D as I had a resection last year.

This link is to the article explaining the science behind the diet.

http://www.healthsystem.virginia.edu/internet/digestive-health/nutrition/BarrettArticle.pdf

I have posted a couple of times on FODMAP - recently to Brie - but don't want to sound like a zealot ;) Just want to share something with science behind it that seems to be working for a number of people.

Hope you find what works for you - it really is worth the effort to get your life back !

Posted 11/19/2010 7:58 PM (GMT 0)
Is any of you living with the crohn, never in remission and never have surgical like me?

Yep, and I've had it for 10 years too. Also don't get any remission from meds, although I've yet to try Remicade (Infliximab). And finally, I don't think diet has any effect on my Crohn's. No matter what I eat, it doesn't matter. I'm never symptom-free. I don't have any safe foods, I don't have any bad foods. The only thing that matters is amount. Feel better the less I have in my guts.

I'm not scared of an ostomy and if I had UC I would get it done tomorrow, tbh. As it is, I don't think any doctor will agree on surgery for me until I'm dying. So all I've got to look forward to is, well, absolutely nothing. Sorry for the pessimism.
Posted 11/19/2010 8:15 PM (GMT 0)
You're right - it is enough to drive you crazy. I almost wanted to commit myslef to a psyciatric facility after fretting for 2 days about wheter I prepared my SCD yogurt at the correct temperature and spent 4 hours on the net looking for the best way to modulate the operation of a yogurt maker.

My advice is to try to find sensible, nutritious food that doesn't bother your gut (or upsets your gut as little as possible). For examle I eat veggies that are boiled/steamed to death which probably is not ideal but it's better than nothing. Eat everything in moderation. Don't eat handfuls of oysters everyday but having fish once or twice a week is healthy, IMO.
Posted 11/19/2010 8:48 PM (GMT 0)
I agree with you asdrubale. It is frustrating as all heck to try to figure it all out. I spent some time doing research and then decided a low carb SCD route was what I was committing to.

There are lots of folks and research that says this is good and lots that says this approach is bad. For me it is easier to choose and then commit, give it a very real try for a valid amount of time and take it from there.

I have been going in this direction for a while and I think it is working for me. Either way I am committed at least for the next 6 months

If you get THEE answer do let me know turn

David

 

Posted 11/19/2010 8:53 PM (GMT 0)
I've found SCD works for me, even if some say that cooked honey and whatnot are bad for us. After almost 2 years of this diet, I can now eat raw fruits and veggies, and even dried fruits like apricots and raisins with no problem. After years of misery, my guts are finally happy :-).

I'd say pick the diet that sounds most sensible to you, and go for it. If it works out, fantastic! If not, try something else until you find what foods work for your system. Hang in there!
Posted 11/19/2010 11:03 PM (GMT 0)

I share your frustration.  I have been doing some research and I am going to try a diet for Candida yeast overgrowth.  Apparently, everyone has candida in their gut and you can have issues with overgrowth from things such as too much sugar and carbohydrates in your diet or from taking too many antibiotics.  The overgrowth of candida can causes food intolerances, GI issues, fatigue, etc.  If you do a google search for candida you can get some more information on what the symptoms are and some of the websites have quiz that you can take to see if you have an excess overgrowth.

 

You could also ask your GI doctor if they have a recommendation of a nutritionist if your area. 

Posted 11/19/2010 11:58 PM (GMT 0)
I eat a normal diet, the same one I did before I found I had Crohn's and now I wasn't put on any diets either just on medications. But I also have never had diarrhea, so maybe that's part of it.
Posted 11/20/2010 3:10 AM (GMT 0)
I think diet can be different for everyone.
I try to eat as natural as possible, easy to digest, nutritious food, mostly gluten free.
I also take digestive enzymes about 3 times a day with meals.
Posted 11/20/2010 1:19 PM (GMT 0)
thanks for the advices, I will read the pdf of FODMAP carefully, it sounds nice as is quoting ibs, ibd and celiace disease...
Posted 11/20/2010 1:44 PM (GMT 0)
pretty much feels like that sometimes...
Posted 11/20/2010 4:42 PM (GMT 0)
Definitely feels like that sometimes. I'm not on a specific diet, I just stay away from things I know cause problems, and depending on how I'm feeling I may eat food that's a 50/50 chance of causing issues (like strawberries, sometimes they cause issues, other times they don't) and I stick with my 'safe foods' a lot. Things like mashed potatoes, chicken, cheese, and jello have been a favorite recently, although I can't stand the smell of chicken right now... I think diet is specific to the person, just like treatments and symptoms are different in all of us.
Posted 11/20/2010 8:36 PM (GMT 0)
It is incredibly frustrating....I'm not on a real specific diet. I tried SCD for a few months, but my problem food has always been meat and I kept feeling sicker and sicker on the diet, so I had to quit it.

I try for low residue and as healthy as I can manage. Though sadly, that means almost no veggies. :( So it's probably not all that healthy...

I did do high fiber, almost exclusively veggies and tofu for about 8 years until I found out I developed a stricture. Never felt better then that diet. Too bad I can't do it anymore...
Posted 11/21/2010 12:07 AM (GMT 0)
Brie812- let us know how you do on the candida diet. That was the only thiing that helped me get well with UC after 8 years of trying everything else. Still feeling good :)
Posted 11/21/2010 9:54 AM (GMT 0)
Like "Tooth" , I don't do well with meat. I was diagnosed with crohns about a year and a half ago. Before then, for years, I used to skip meat during my fast food lunch stops and eat "7 layer (vegetarian) burrito's" from taco bell. I did well on Taco Bell! I wont touch it nowadays, but meat just never worked for me. The SCD and Paleo diet people say, YOU NEED MEAT!. No I don't. It just doesn't work. I eat what most claim to be a big no no in the IBD community... I eat walnuts! I eat lots of bananas also... well ripened. There's some nutrition to make up for the lack of meat. My blood tests are just fine without meat and my blood pressure dropped significantly. I am doing SCD now minus the "Meat Overload". Meat putrefaction causes issues with health. Diet is flat out frustrating. It's also frustrating hearing that some people are 100% in remission doing diet "X" and I try it with no results. This disease plain SUCKS! I wish I could just get away with not eating. Then all would be fine.

Good luck everybody and stay strong this Thanksgiving! It's a tough time of the year. I know. I love pies, turkey, stuffing, cranberry sauce, etc.. and It's just wrong that I cannot eat it.

gary
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