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11-19-2009, 05:28 PM   #1
CrohnsHobo
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SCD Diet

I had never heard of this diet until I began lurking in these forums. I had tried a gluten free diet for about three months and had a real hard time with it and during that time my CRP results actually got worse.

Looking at the SCD diet the restrictions seem really extreme. Do people on this diet have a hard time with it? Does it work for you? Any personal pros/cons?

Remicade is slowly failing for me and the next step appears to be surgery. I would really like to do anything I can to avoid that so have been open to trying all sorts of things.

Despite that, the SCD would be a major life change for me as a lot of the non-allowed foods are staples of my current diet.
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Diagnosed in 1996
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Colostomy surgery 4/24/12

Past Failed Treatments:
Prednisone
Remicade
Asacol/Lialda
6 MP
Cipro/Flagyl
Humira
Methotrexate
Cimzia
Azothiropine
Entyvio
Augmentin
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11-19-2009, 06:51 PM   #2
imisspopcorn
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I applaud any one who can do the SCD diet...Let us know how it goes. There are several people who have done it or currently are...Good Luck!
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11-19-2009, 07:06 PM   #3
DMS
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hey CrohnsHobo, my 16 year old son is on SCD, I went on it in the beginning too, to give him moral support, now I cook mainly SCD but adding in things for the rest of the family (I don't enjoy cooking 2 meals).
I've said a few times that I think it's easier to go on it if someone else is cooking the meals and you just have to eat what is put in front of you. With SCD you will still find that there are things that will not agree with you, my son cannot eat Pork, raspberries, nectarines or any dairy products including all cheese and the SCD yogurt. I make the yogurt out of unsweetened organic soy milk, it doesn't look pretty but it goes in a shake every morning so who cares. Soy is not allowed on SCD but Elaine's reasons were more about the pesticide use on the soybeans than the type of carbs it provides, so we've eliminated that by going with the organic.
Also my son could not stand the texture of the almond flour which is pretty much in all of the baking but he loves coconut flour, so muffins, pancakes etc are made out of that. If you try this diet you still have to figure out which foods work for you. The diet completely cleared up all of his nausea and stomach, and diarrhea problems but we are still dealing with a fistula. He had a large abscess as well, that is now completely gone and between the LDN, and SCD we feel we have the best chance at getting rid of the fistula without surgery.
After going on the diet his malabsorption problem went away and he started to gain weight. He's also gone from having BM's multiple X /day to once a day. Just lately the morning urgency is also starting to go.
This diet is not a quick fix, there's still a lot of trial and error involved but he (not me) made the choice to go on it, and he has amazing willpower.

If you do start SCD be prepared for the D to get worse before it gets better. He had about a 2 week period of a major shift in bacteria, but after that he was good to go, has not had any D since.

Feel free to PM me if you have more questions.
Donna
11-19-2009, 07:06 PM   #4
CrohnsHobo
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I have never seen a dietitian for my crohn's and just sort of stuck with what didn't make me sick. The last year it seems like nothing sits with me particularly well.

The veggis from the SCD make me weary since I currently have such a hard time digesting any sort of ruffage.
11-19-2009, 07:10 PM   #5
CrohnsHobo
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Thanks for the info Donna! I do all of the cooking for my GF and I, and I had a really hard time with the gluten free diet. I pretty much just lived on rice cakes. It was miserable and didn't help me at all.

It seems to cook a lot of the foods on these restrictive diets is very time consuming. Which, as a 9-5 worker I have little time or energy to come home and bake diet specific breads. I rarely have the energy to make anything at all anymore and end up eating cereal for most meals.
11-19-2009, 07:43 PM   #6
pewpewlasers
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I've been on a gluten free diet for a year and a half now.
It sucks, it's expensive, inconvenient, and the food tastes like crap.
However, it was first thought that I had celiac because after I went gluten free I got better....for a little while. I would still have really bad episodes of getting extremely sick and I just blamed it on something in my food.
If it makes you feel better do it. Otherwise, it really sucks. I've been thinking about stopping it since I already feel like crap all the time.
11-19-2009, 11:00 PM   #7
Rhonda
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Hey CH,

My son and I both eat SCD. Hubby eats SCD at home, but cheats when he's at work, etc. He doesn't have Crohn's/UC/IBS of any sort, so we just appreciate him eating SCD at home.

To be honest, at first it was tough. I had to figure out how to cook completely differently than I used to. I knew a few favorite recipes from scratch, but I was a real fan of fast and easy prepackaged foods.

But, we'd tried just about everything else including Remicade, our GI was pushing Humira and we were looking for something that wasn't another biologic. Keith started peeing orange thanks to 6mp, he turned into a raging lunatic on prednisone.. lol, good times. The year and a half he was on Remicade I swear he had less than a month of good days and his fistulas never healed. Everyone has to find what works... we just did it through the process of elimination.

Within a few weeks of eating SCD Keith's urges to have a BM after eating disappeared, along with all of the stomach cramping. Within a month his stomach wasn't tender to the touch and he was having 1 - 2 firm bm's a day. After 5 years of painful D 5 - 10 or more times a day, this was astounding. After 5 months eating SCD he had a colonoscopy that showed remarkable healing had taken place throughout his entire digestive system. The disease was mostly focused peri-rectally, his fistulas still weren't healing.

He had some trouble there, I wrote about it on another thread, but after an abscess surgery we found a doctor to start him on LDN. The SCD diet is excellent for people taking LDN. When we say his surgeon for his first post-op appointment the surgeon was really excited about how well he's healing. His fistulas are closing.

I have some great SCD recipes and tips that can make your life a bit easier if you decide to try it. One day of cooking can usually take care of the major food needs for the week. When we started I told the family, "we're going to find some stuff we don't like, and some we do. We just have to keep trying. If you don't like something, tell me. I don't want to waste my time cooking stuff that you don't want to eat." We threw out some stuff! LOL! But, I make some mean SCD enchiladas, steak is always ok, stew is yummy, chicken chili verde... sooo yummy. Once you get over the loss of your starches it's easier. Trust me, if I can cook food my picky 17 year old will eat, anyone can.

Disclaimer! SCD does not work for everyone. It takes more time than most people spend in the kitchen these days. It can cost more at first as you toss your failures. (It now costs me less than I used to spend on prepacked crap.)

If you need any ideas, just ask!
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She was not quite what you would call refined. She was not quite what you would call unrefined. She was the kind of person that keeps a parrot. ~ Mark Twain


11-21-2009, 04:53 AM   #8
crush1
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I started the SCD a week ago. The little stomach cramps, gas, and bloating that I had after surgery are completely gone. I went from diarrhea to normal stool, but that might be attributed to my stopping the Prednisone.

It's more mental than physical. I look at food now as fuel, and not anything to get pleasure from. Sad, but it works for me.
11-21-2009, 05:15 PM   #9
D Bergy
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I think that is a good way to look at food.

I kind of started doing the same thing. I look at food as fuel, and if it is crap, like potato chips or something with no nutritional value, I think of it as crap.

Food really is something that your body needs, not what tastes really good. Just thinking of it that way will influence what you eat.

Dan
11-23-2009, 02:06 PM   #10
CrohnsHobo
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Thinking I might try and make it through the year and maybe giving it a go the first of the year. My GF whom I live with is willing to give it a go, but since I do all the cooking she does not have much of a choice. =p
11-27-2009, 02:57 AM   #11
crush1
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Coming up on 2 weeks now. I've been pretty much symptom free, although I had some diarrhea this morning, which I attribute to binging on dates a couple days ago.

It's definitely a change requiring dedication, but like I said earlier, it's all about your approach. If you look at it as a negative, it will be tough. Look at it like it's the ONLY WAY to avoid takings meds.

I stopped the Prednisone cold turkey exactly 1 week after I started taking it (30mg daily), and initially I feared that I would relapse into a flare and ruin the healing process of the surgery. However, almost 3 weeks after stopping, I've not had any problems.
11-27-2009, 03:02 PM   #12
shazamataz
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Yay! I need to get into this as well. I'm tapering and for the first time in 3 months I just got a test saying my CRP is slightly up. Kick in the bum to start being more careful!
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12-30-2009, 08:57 PM   #13
wqcoleman
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I've started this diet 6 days ago... I'm on deaths door, and I'm refractory to all meds - which is a lovely place. I have nothing else at this point and all I hope for is that this "difficult" diet will provide me some hope... since 7 days go I was without hope and now I feel energized to fight this thing after reading her book. She makes a lot of sense - and I encourage those who are desperate and if meds aren't working -- look into this diet. The fact that my doctor is unresponsive to the diet/food connection motivates me more to do this diet -- since NOTHING has worked so far - and I'm not into the idea of taking my colon out, that's the last last last last last last option and only if I'm in the hospital and I have no alternative.. that's when that decision happens.

Last edited by wqcoleman; 12-30-2009 at 09:00 PM.
12-30-2009, 09:07 PM   #14
shazamataz
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Good luck wqcoleman - sounds like you are very determined to make it work
01-01-2010, 01:58 AM   #15
Tan
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I have heard alot about this diet and I applaude anyone who can stick too it. I really hope it works for you CH if you decide to try it, I know I don't have the willpower required but then again if I was starting to run out of options or required surgery I probably would give it a go first. Good luck buddy.
01-05-2010, 03:00 PM   #16
CrohnsHobo
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I have not started yet. I have begun keeping a food diary everyday and then marking down how I felt that day to try and pinpoint the foods that are really giving me problems.

I am waiting to see what the docs at UCLA say about my prognosis before I jump into anything.
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