Reaction to food

[Crohny]

Hello everyone,
I'm new to the forum and new to Crohn's.
I have been in and out of flare-ups every single week since I was diagnosed, until the last 3 weeks...
I have completely cut sugar, lactose, gluten/wheat/yeast, and alcohol from my diet, while adding pro-biotics, fish oil, and many other (supposedly) helpful supplements. Also, I only eat organic fruits & veggies, and healthy protein that is easy to digest- and I feel incredible.
My energy level is back and I have not had a flare-up since I started these changes. I don't like to be one to speak so soon, but I feel good.
I am not saying this is how everyone reacts when making these changes, but (in my case) it does disprove my GI's awful advice: "eat whatever you want, Crohns has nothing to do with diet".
Being new to the disease, I can't say much at this point, but I'm so excited to finally break the cycle and get off of prednisone.

 

[crazycanuck]

Well it is great that your doing better but I strongly caution against completely cutting out anything. Competely cutting out sugars can be quite dangerous. Your body uses sugar for everything and by completely cutting it out your forcing it to make it from other materials in your body. Everything in moderation is my belief and I would strongly suggest that you speak with a dietician about your diet if you don't trust your GI.

Best of luck and good luck with your disease and diet!

 

[Lizzie]

Hello. I've been trying to do something similar myself. (I had a colonoscopy yesterday and am awaiting biopsies for a full diagnosis but so far it's "unspecified colitis", not cancer thank god, but that's a whole other story.)

I have seen massive improvements in the past couple of weeks since I almost completely cut out refined sugar and dairy, plus started taking a daily probiotic. It's early days and I don't want to make any false claims, but all I can say is that I've managed to get back to a reasonably normal bowel pattern, healthier looking, far less mucus and almost no blood.

I'm conscious that this may not be a well-balanced diet for the longer term, as Crazycanuck has pointed out, but it seems to be helping right now. I do wonder about getting enough calcium, especially being vegetarian myself. Since all this started I have begun to eat eggs, a bit reluctantly.

It's interesting that you're eating fruit and veg. I've really cut down on insoluble fibre and my fruit and veg intake largely consists of potato and the odd banana. I mostly eat organic too. I'd be interested to know what veg you're able to eat and how you prepared it? It's incredibly frustrating to be a vegetarian who can't eat vegetables!

 

[Crohny]

Everything in moderation is my belief and I would strongly suggest that you speak with a dietician about your diet if you don't trust your GI.

I completely agree! Finding a good dietician is next on my list.
I should also clarify, as Lizzie brought to my attention, I have only cut refined/processed sugar... I get all the sugar my body needs from fruit

Thank you very much, and best of luck to you as well. How are you feeling these days?

 

[Crohny]

Hi Lizzie,
So glad you have seen improvements.
What type of probiotic are you taking? I was taking the cheapest one I could find and it had absolutely no affect on me... so with great skepticism I tried one recommended from a digestive disease book. It was very expensive, but well worth it. I couldn't believe how quickly it regulated my bowels!
Do you take calcium or any other supplements? They make fruit juice, almond/soy/rice milk all fortified with calcium.
For now, I can eat any fruits and veggies (raw or cooked) without affecting me.
My wife usually cooks veggies in a skillet, but sometimes I slice and put on a salad, or just eat plain. I love banana's too- they give me a good pick me up.
That is so frustrating when the food you love is what you can't/shouldn't eat.

 

[Lizzie]

Hi Lizzie,
So glad you have seen improvements.
What type of probiotic are you taking? I was taking the cheapest one I could find and it had absolutely no affect on me... so with great skepticism I tried one recommended from a digestive disease book. It was very expensive, but well worth it. I couldn't believe how quickly it regulated my bowels!
Do you take calcium or any other supplements? They make fruit juice, almond/soy/rice milk all fortified with calcium.
For now, I can eat any fruits and veggies (raw or cooked) without affecting me.
My wife usually cooks veggies in a skillet, but sometimes I slice and put on a salad, or just eat plain. I love banana's too- they give me a good pick me up.
That is so frustrating when the food you love is what you can't/shouldn't eat.

I was surprised at the price of all these dietary changes, I must admit! I bought the cheapest probiotics from Holland and Barrett (a ubiquitous high street chain of health food stores), called Mega Potency Probiotic Acidophilus with Pection, 3 Billion Active Cultures. I think it was about £10 for 100 capsules. I don't know about the quality but own brands in other areas are often just as good as big name products but not as expensive.

I've been taking calcium supplements without realising it. After reading your post I checked my Rice Dream milk and found it is actually fortified, as is my gluten-free bread. Talking of gluten-free, is it really expensive where you are? Everything is three times the price of the standard product here. For example, you can get a perfectly acceptable small loaf of ordinary bread for about 80p but I paid £2.50 for an even smaller loaf of Warburtons gluten-free yesterday. That's the best brand I can find, it actually tastes almost like real bread.

I miss being able to eat vegetables, even more than I miss sweets and junk food. I sit fantasising about fried onions sometimess!

 

[Crohny]

I felt the exact same way! Everything is over-priced, and very small.
But I felt so bad, I was willing to give anything a try. The more research I did, the more supplements I kept buying. I spent a good $200+ on supplements but based on how I feel right now, it is worth it.
And yes, you are right, the bread is 4 times as much as a regular loaf, and about 1/3 the size. And it tastes like cardboard. The bagels are even worse. I laughed when even the dog wouldn't eat them!
The only pre-packaged thing I do like is brown rice tortillias...
My wife bought a bag of gluten & wheat free bread mix and baked it the other day. It was really good! Especially if you toast it.
She also made a muffin mix, and loaded in a carton of blueberries. I ate them all in one day. They were so good!
Why can't you eat vegetables? Because of insoluable fiber?
If you have a juicer, you might get creative with vegetable juice... or use the pulvarized veggie mush leftover in the back of the juicer, for a softer veggie salad, sandwich spread, or whatever. Again, I think you could get creative there. Maybe fry up some veggie potato cakes? ...My wife is a great cook, and likes a good challenge, so I'll ask her to come up with some good ideas.
If you don't have a juicer, you could try cooking down the veggies a bit, then throw them into a food processor or blender. That might make them easier to digest?

 

[Lizzie]

The blood and mucus seem to get worse when I eat too many veg, especially my favourites like cabbage, onions, broccoli, mushrooms etc. Hopefully once things are totally under control I'll be able to eat them again but for the moment I'm being ultra-cautious.

I've not got a juicer but I've just bought a mini-blender that I have started making pates in (beans etc in small quantities) as well as using my liquidiser for soups. Next purchase might be something for chopping nuts and making nut butters, so perhaps a juicer after that. It's all trial and error at the moment as I'm quite new to these health problems.

Homemade gluten-free bread also seems a good idea. I used to enjoy making bread in my breadmaker but I gather the cheapo ones like mine don't work for gluten-free because it's more like a batter.

My other moan about gluten-free bread is that it is so fragile. You take a sandwich out with you and it's broken up into a dozen tiny pieces by the time you come to eat it! I definitely won't bother trying the bagels if they're as bad as you say. Also, I think you practically have to take out a mortgage for anything other than plain old bread in that line of food.

 

[Ithinkimafigher]

although crohns may not be directly linked to what you eat, i believe what you eat during flare ups makes all the difference in the world crohny. your diet is very similiar to mine as i have to cut almost all of those things out of my diet just as you have and added almost the same supplements. i think my disease is worse than yours but the fact that you feel better now that you have altered your diet and i have started feeling better since doing the same thing is proof in the pudding for us. as far as cutting sugar out of your diet completely... thats not really possible so dont worry about that. almost all food nowadays has sugar and if it doesnt your body makes its own from starches. good luck holmes. stay alive.

 

[LindaS]

I'm glad this is working for you, Crohny. I wish I could say that this diet worked for all of us, but unfortunately, it doesn't. I've been flaring for months, and if I eat any fruits or vegetables that aren't cooked to the point of tastelessness, I am much worse. When I'm in remission, I can eat whatever I want, but now that I'm flaring, I find that eating whole foods makes me miserable, and I'm now back to low fiber, low residue, low taste.

 

[marissagianna]

Thanks for your advice Crohny! hope your doing well now. Even I have been taught by my dietician how to eat right now i will always control the quantities of my food.

 

[Nico85]

I was told i could eat what i want and i basically can but i feel that when i have a mini flare up, milk irritates my bowel, but any other time i just cut out drinking alot of fizzy juice and lots of bread and im fine.

Alcohol is the killer because it dries our your bowels and it makes it hard to pass.

But i refuse to let this disease stop me from a night out at the weekend and so far it hasnt

 

[Jer's Girl]

I'm so happy you have found what works for you! Thanks for sharing!

 

[Sophia]

Crohny, I did that too, and it helped me into remission as well! My story is exactly like yours, by the sounds of it. My doctors said that food had nothing to do with Crohn's, and I could eat whatever I liked. I went to a doctor specialized in nutrition, and started on a diet similar to yours last summer. My fecal tests went from 455 to 16 in two to three weeks!

 

[Crohny]

So weird how everyone is affected differently. Lately I feel like I could almost start to flare again, my body gives me slight warning, but then I feel fine... Very strange.
Yeah Nico, alcohol is definitely the killer to me (right now). Last time I drank almost put me in the hospital.
Sophia, that's great! Curious to know how long you've been in remission, and what were the main things your nutritionalist recommended?
Anything else you could recommend that has helped?
Thanks!

 

[Sophia]

Hi there,

I've been in remission since June 2010 (only occasional D, but I'm not as well as I was before I got Crohn's).

Here's the thread I posted when I was put on the initial diet:

http://www.crohnsforum.com/showthread.php?t=12004

This helped me into remission. I gradually started adding things to my diet again when I'd been in remission for a while. I now find I can experiment with carbs and I don't have to be very careful with the diet. Alcohol seems to be difficult still though, but I try a sip now and then.

Hope this helps, and I can give you some of my recipes if you'd like!

 

[denisk]

I just gave up Tim hortons coffeeand donuts as well as poptarts and all that shit. It taste good but it's not worth it as far as I'm concerned.

 

[Crohny]

Thanks for the link Sophia. I'm basically eating the same, except I eat quite a lot of fruit. Guess I should cut back on that a little. I think lactose is a big problem for me now (it never has been before), so unfortunately I don't get to eat cheese
So great to hear you are still in remission!
Are you taking any meds now?

 

[Crohny]

I just gave up Tim hortons coffeeand donuts as well as poptarts and all that shit. It taste good but it's not worth it as far as I'm concerned.

Yeah I know what you mean. I used to live on coffee and a high sugar diet. I miss some things but it's definitely not worth it!

 

[Nico85]

Yeah caffeen and milk can affect you if you have a bit of a flare, i couldnt toutch milk, but now that i dont have a flare i can eat cereal with milk no probs. but if my stomach feels a bit dodgy i try cut out milk and cafeen alltogether until i feel better.

Ive not had much problems with food, im pretty much able to eat what i want, but having IBD, foods that react and dont react can change all the time, its very unconsistant, thats why its hard to say "u can eat this" or "you cant eat that". Cutting out white bread will definetly help stop the bloating, that i can say is certain.

Nicky

 

[Sophia]

Thanks for the link Sophia. I'm basically eating the same, except I eat quite a lot of fruit. Guess I should cut back on that a little. I think lactose is a big problem for me now (it never has been before), so unfortunately I don't get to eat cheese
So great to hear you are still in remission!
Are you taking any meds now?

I was told to cut back on fruit due to the high sugar content. I am not entirely sure if it is necessary to cut back as much as I did, though. I have a feeling they put me on a very strict diet, and maybe they were extra strict because I also wanted to lose weight (I had put on so much during my prednisone treatment).

I'm on Asacol (Pentasa) right now. And you? I have been on Asacol ever since I tapered down the Prednisone in December 2009, though I am not entirely sure it is helping me. I have been told to continue taking it even though the effect on Crohn's patients isn't thought to be significant. My doctor says it can have an effect in lowering the chances of colon cancer, so that's good.

Good luck with the diet, Crohny.

 

[Crohny]

I'm taking Pentasa and Mercaptopurine right now... Just finished a Prednisone taper as well.
I'm kind of in between doctors right now. So I'm tapering myself off Mercaptopurine without dr supervision. Hope that's not a bad move?- But I hate the way it makes me feel mentally/emotionally.
That's good to know about Pentasa. Yeah I'm not sure it's helping my Crohn's much, but I'm going to take it anyways.

 

[Jennifer]

I am not saying this is how everyone reacts when making these changes, but (in my case) it does disprove my GI's awful advice: "eat whatever you want, Crohns has nothing to do with diet".

When already in a flare food does matter because it irritates already inflamed bowel. When in remission, food has nothing to do with it. I eat whatever I want and have for over 12 years now (forced remission through surgery). Only thing that's kept me in remission is maintenance medication (6MP and Asacol but I was taken off Asacol almost a year ago). I don't think you need to taper off of 6MP but I would tell your GI (new or old, whoever you're still seeing) so that they know and why so they can try something new. A change in diet may give some relief but when a flare goes untreated, this relief is temporary.