is scd necessary

[Belle]

Thanks for your help. I think the problem is that the diet is depressing me. Although I still don;'t know what i am intolerant to so i can't seem to get a grip. i have tremendous pain no matter what i eat. Are most people able to stay in remission for a long time once they acheive it? and when can you start adding back foods? after how long?

[harma]

In my search to recovery I also dived in to SCdiet. I read a book about it and sorted out what I could eat and what not. For my SC was and still is not option, first of all I would leave the diary out anyway. But than, the recommendation was to eat so much veggies and fruit (raw) my than still inflamed bowel was far to sensitive for that. Tried out kiwi, berries, raspberries, all one big nightmare. What I find more interesting is the paleo diet, the books of Loren Cordain are really great. But also there I am not ready for the paleo diet since a lot of (even overcooked) vegetables are still a problem, the same for raw fruit.

So I made my own moderated version of SC/paleo diet. For breakfast I still eat rice (soooo not SC/Paleo) and for diner and lunch vegetables with meat or fish (sooo SC/Paleo), it is matter of trial and error to find out which veggies you do well on and which not (and overcook them). Same for fruit, I can tolerate banana's but not everybody here can. Other fruit options are canned fruit (also sooo not paleo if sugar is added, but I do eat it) or dried fruit. Nuts are for me also a now, probably the fiber (maybe I could eat them now, haven't tried if for a long time). And drinking, tea and water, I do best on. Fruitjuices, for me fresh forget it, out of package some do ok, some do not. Also be aware of thickeners that can be added to juice (pectin gives me troubles). I do drink rice milk (but the brand i am using thickeners again=problems) Of course ricemilk is also sooo not paleo/SC, but I do use/drink it.

The problem with an inflamed gut, it can be so sensitive and there can be so many things you can't eat, that especially with an SC/paleo diet there is not much left to eat. I think there are quite a view here who do a moderated version of the paleo/sc diet.

So my advice would be, take is a guideline (paleo is even better), but alter it to your own situation. And to find your own version of it, it takes times.

good luck with it

[tex]

Although I still don;'t know what i am intolerant to so i can't seem to get a grip. i have tremendous pain no matter what i eat. Are most people able to stay in remission for a long time once they acheive it? and when can you start adding back foods? after how long?

I felt the same way when I was recovering. I finally decided that I would be sick until I recovered, and stopped worrying about it. IOW, I took life one day at a time, and I eventually got better. Except for a few diet slipups, I've been in remission for 8 years, now. So yes, once most people figure out which foods to avoid, their remission is stable and reliable, so long as they don't get thrown a curve at a restaurant, or when eating at a friend's home.

It's a bit premature to be thinking about adding foods back into your diet, when you aren't even in remission yet, but most people are able to add back some foods after at least several months of healing time. I didn't have much luck trying to add foods back, until I had been in remission for over a year and a half, because I apparently had a lot of intestinal damage that needed to heal.

Everyone is different. This isn't a one-size-fits-all disease - that's why the doctors have so much trouble treating it. Here on this board, we know that food is usually the key to remission, but the tricky part is figuring out which foods we have to avoid - that's something that each of us has to do for ourselves. IOW, we can tell you how to go about it - we just can't tell you exactly which details will fit your case.

You have to take notes, and you have to take note of what your body is telling you about the foods that you eat, and how you react to them, and you have to modify your diet accordingly. No, it's not easy - but it's the only way we have to get our life back.

Tex

[carolm]

Belle, I haven't been at this long, having just been diagnosed last August (2011). My suggestion is to keep a daily log. As far as diet start with the things you know for sure you can tolerate-- and in my case it wasn't much. Chicken and chicken broth, turkey, rice, potatoes, overcooked green beans and overcooked carrots. I wrote down amounts and rotated foods-- so if I ate turkey and rice at lunch then I had my chicken with potato for dinner. If greens beans were at lunch, then carrots were at dinner, etc. That way if I was wrong and was going to react to something at least it was in a small amount. I wrote down my BM's or the lack of them and looked for patterns. As my meds changed or I added even 1 vitamin, I wrote it down. I manipulated the times of day I took antiacids and I wrote it down. I kept it on a calendar/planner where I could see the whole month at a glance. The best thing was that when I took this to the doctor it was easy for them to see patterns as well.

The Entocort was a huge help for me, but I struggled with cramping that at times was difficult to tolerate and was very draining. Oddly enough I had 1 day out of every 6 where I had cramps for 24 hours straight and nothing helped (until finally they gave me a prescription for an antispasmodic--- which didn't necessarily resolve the cramps but it knocked me out!) The cramps faded as the Entocort was reduced and stopped when I was off of Entocort. However as I reduced Entocort I found a couple of food intolerances that I hadn't realized earlier. And as everyone else has said-- this is the pattern of getting well. It has to be adjusted for you. And I really believe keeping a log will give you insights that just aren't immediately obvious-- because for me if I'm feeling rough today, I can remember what I ate or did yesterday, but I am less likely to recall what I ate or did the day before yesterday. And it may be that what I did 2 days ago is impacting me today. Or that since I started a certain vitamin I was having more C. Or D showed up every time I ate 4 Hershey kisses. You get the idea. It helped find triggers, both big and small.

Good luck and hang in there. It does get better.... but probably not without a lot of perseverance.
Carol