Letters from the SCD support group: When going off the diet
Re: A year and a half later...
Wed, 6 Aug 1997 22:52:28 GMT
At 01:48 PM 8/6/97 -0400, you wrote:
>My symptoms are virtually gone, yet I'm taking asacol still. I wanted
>to know if there's anyone out there who went off the diet and to what
>extent, and what happened...
After two years of being faithful to the scd and more than 18 months being completely symptom free, I tried to wean my way off the diet. This was one year ago this month.
I spoke to Elaine before starting. She was VERY cautious as is her nature. Actually, she wasn't as supportive as I had hoped. Although she didn't come out and say it, I heard implied in our conversation "WHY???". I can relate to the question as it is the same one I ask people who would rather be sick than give the scd 100% for a month or so. Nevertheless, she advised going VERY slowly introducing one food group/type at a time. I started with some processed bread which went well. Then I went into some pasta, then potatoes, and then some processed food. I never did get into raw sugar or dairy at all.
Things went very well......for about 3 months. The symptoms started coming back. Interestingly, I went into the same old denial ruts I had been in years earlier. I tried eliminating foods, but just didn't feel normal. I had diarrhea more than not. Very slowly, I found myself taking immodium again. Then in December, I woke one morning realizing (although it had been there for some time) that I was back to regular diarrhea, immodium most days, and the PAIN had returned (my big two symptoms). I could deny it no more.
So, I decided to come back to the scd. The affects of the scd were much quicker this time--about 2 months compared to 4 the first time around. I was SO confident that this was a "cure", but my experience so far is that it is only a removal of symptoms (and Praise the Lord for that--no small feat by any means!).
So again I am symptom free. Another side note to this saga is that lately I have been less than 100% faithful to the diet lately as well. While 95% of my diet is still kosher, I now eat occasional forbidden foods WITHOUT any affect. It is almost as though my body has a polysaccharide limit which cannot be exceeded. It is amazing what this 5% can do for your outlook--no more hiding if you go out to eat with your friends, a PIECE of pizza on Friday nights, dinner with the family again, etc.
Your mileage may vary.
P.S. Why are you still taking Asacol?
«« Discover the Spirit »»
Re: A year and a half later...
Wed, 6 Aug 1997 23:27:02 GMT
Very honest and very professional from Kevin !!!!
What can I say ?
Well, the diet is really hard to deal with. But the disease is even worse.
When to try going off diet
Thu, 7 Aug 1997 15:39:17 GMT
I recently reread page 52 in Elaine Gottschall's book, "Breaking the Vicious Cycle".
"Many cases of celiac disease, spastic colon, and diverticulitis appear to be cured by the end of a year. Other disorders such as Crohn's disease and ulcerative colitis take much longer with the minimum time of two years on the diet. A rule of thumb is to stay on the diet at least one year after the last symtom has disappeared".
Notice the above says MINIMUM time of two years, AND at least one year symtom free. I will have been on the diet 4 years in Oct. with no cheating, and I'm still waiting for a whole year symtom free. My occasional sypmtom is minor but it is still a symtom. If my one year never comes I will stay on the diet permanently. I'm writing this to encourage people to be patient. With all the effort we put into this, why not do it right?
I recently read the chapter from Dr. Lutz's book posted on Mik's site, and I believe he states that about 60% of his patients were clear of their diseases within 2 years and that the remaining 40% took 4, 6, even up to 8 years. Possibly we are looking at the same kind of time frame.
Date: Sat, 4 Jul 1998 19:31:45 EDT
Subject: after diet?
I have been on the SCD for over two years. I would like to start resuming some
carbohydrate intake, but am a bit reluctant. I have been considering food
allergies as a means of choosing those items to keep out of my diet. There are
blood tests to determine delayed hypersensitivity, known as ELISA/ACT
Lymphocyte Response Analysis. Has anyone had experience with this test? There
is also a simple blood test, the RAST (IgE), which only detects immediate
allergic reactions to about 100 dietary or environmental substances, such as
hives that may appear minutes after eating strawberries. The ELISA/ACT or
Lymphocyte Response Assay (LRA) identifies the causes of delayed
hypersensitivity reactions, which usually occur from three hours to three days
after exposure. It can identify if you are reactive to as many as 400+ common
substances that may be provoking a chronic condition (i.e. IBD). If anyone has
experience with this please let me know. Thanks! Sanford
Date: Sun, 5 Jul 1998 07:24:28 -0400
Subject: Re: after diet?
I've been on the diet very successfully for almost 2 years with miraculous
results. I got a little cocky the past two months or so and started up
with some of my old eating habits. Bad move. I've had a VERY mild flair
but the symptoms are unmistakeable. So...back to fanatical adherence to
Based on my experience, I'm not sure there is such a thing as "after diet."
Perhaps I haven't been on it long enough, but it seems to me that this
healthy diet is one that is good for life.
Steven in PA
Date: Sun, 5 Jul 1998 14:16:03 -0600
From: "William Laing"
Subject: Re: after diet?
to the Group:
I agree with the post from Steven. Certainly in my opinion, I have yet to learn
of an individual who has expierenced any great degree of success if eating
foods outside the diet for an extended period, even after two years of
Now over two years in remmision, (the second time)my colon will display the
early signs of Ulcerative Colitis if I eat starch or refined sugar, any more
than just occasional.
Date: Mon, 18 Jan 1999 19:13:30 -0800
From: "Benke, Anna"
Subject: Going OFF the diet
About your mother going off the diet, at Elaine's recent speech, I specifically asked her about when and how we can go off the diet, since the book clearly states that we don't necessarily have to remain on it forever. She talked about it quite a bit, and I wish I had taken notes, however, these are the important points I remember. She says that you should not stray from the diet until you have been SYMPTOM FREE for at least one year. At that point you may start experimenting by introducing one forbidden item at a time and seeing how you feel. For example, you could try one slice of bread and see how you feel over the next few days. She said that the key in going off the diet is to do it gradually and moderately, and to never get to the point where you are eating more non-scd foods than scd allowables. In other words, don't go overboard. For example, she said one guy went off the diet and found he could tolerate bread, so he started eating up to 20 slices a day. He subsequently got sick again and had to go back on the strict intro diet.
Elaine said that the Drs. Haas (who first prescribed the diet to her daughter) died before it was time to take her daughter off the diet, so since she didn't know how long to stay on it, she just kept her on it 8 years. But, I specifically asked Elaine how her daughter was when she went off the diet and what happened. She told me that the only reason her daughter really went off the diet in the first place was because she went away to live at college and didn't have much choice but to eat the cafeteria food. The first time she ate a tablespoon of rice, she had blood in the toilet, and it just got worse from there, so she decided to avoid rice permanently. She then tested various foods, and they bought her a mini fridge for her dorm room, and she found she could stay mostly on the diet, with just a few disallowables. Elaine said that it's best to avoid rice and corn for the rest of our lives, but that we can try going off the diet after we have been symptom free for a year.
The problem is that as soon as we are symptom free for a few months, we are tempted to go off the diet, and let me tell you from experience, I have made this mistake several times! I regret ever going off the diet, because every time I did, I ate disallowables and seemed to feel just fine and dandy, but after 6 - 8 months, the symptoms came back, and with a vengeance! I got really sick again and resorted back to the SCD intro diet, with all pureed foods for a month at least. The diet healed me time and time again, regardless of the abuse I put my body thru by going WAY OFF the diet. Sure, I started out going off in moderation, but in no time at all, I was worse than the guy who ate 20 slices of bread per day. I would eat virtually ALL foods that were disallowable, and NONE that were on the SCD. Everything I ate (during my times off the diet) was full of starch, loaded with sugar, and lots of it was junk food. The fun only lasted about 6-8 months, and then I was back to where I first started.
If your mom wants to avoid this trap, tell her to read this message and try to stay strict for at least another year before she goes off. I am desperately trying to do this myself, and it is not exactly easy not to cheat when you feel fine even after cheating, but I believe the long term benefits are worth it if you could maintain a remission longer than 8 months after going off the diet. I believe it is possible if only you stay on it long enough to begin with, because Elaine's daughter is not on it to this day. She eats regular food, in moderation. Elaine says to keep it down to 2 slices of bread per day, and never go past that. That's an example of what she means by moderation. Also, for example, one candy bar per month, would be moderate, as opposed to chocolate every day. By the way, did you know Elaine has IBS? That's why she was on the diet for so long herself. Not only because of her daughter, but she herself had bowel problems, so it helped her too! She also used the example of how when she's being good she'll have the nut bread but when she's being bad she'll have a rye cracker. So I guess some of us may have envisioned a brighter future for when we go off the diet, but in my mind, if I can stay feeling well, and have the occasional cheat, after spending a year symptom free, it's still a good deal all in all. Sorry to be so long.