I’ve gotten that question enough times that I thought I’d save some typing and put it in a post. So here it is, my suggestion list for new SCDers:
– Read Breaking the Vicious Cycle cover to cover. Then read it again.
– Download my illegal/legal foods cheat sheet. It is a compilation of the illegals/legals lists from the BTVC book and official website, and pecanbread.com among others.
– Work your way through all the pages, posts, comments (and my replies) on this site. As of late April 2011 this blog has 12 pages, 164 posts, and 623 comments spanning three and a third years. There is a good chance someone has already asked a question you might have or a story you can relate to.
– Use the search box on the upper right corner of this blog to find things.
– See the surprisingly long list of the many names of sweeteners in this post.
– Read the Breaking the Vicious Cycle official website.
– Read the Pecanbread website. It is targeted for children on the SCD particularly for the autism spectrum.
– Join and read the BTVC_SCD group on Yahoo: http://health.groups.yahoo.com/group/BTVC-SCD/
– Join and read the Pecanbread group on Yahoo: http://health.groups.yahoo.com/group/pecanbread This group is targeted for children on the SCD particularly for the autism spectrum, but has much helpful info for all.
– Read every label of every food you buy, every time you buy it as ingredients can change. Almost all processed foods are illegal.
– Be aware that “plain” meats can contain illegals – read these labels too. I found out the hard way with chicken.
– Making SCD yoghurt can be tricky and it’s important to get it right. I was doing it wrong for a long time. See this post.
– If you need a little food inspiration, see my photostream. It’s the same set linked to in the sidebar on the right. Check back once in a while as I add to it or if you prefer, subscribe to the RSS feed.
– Be patient – it took a long time to get sick and you will not get completely well quickly. It is typical to feel improvements relatively quickly, however.
– Learn about the stages on Pecanbread.com and consider using them. They are not in the BTVC book as they were developed after its publishing. I believe Elaine Gottschall was involved, though she didn’t say that you had to follow the stages other than the intro diet. The stages are a good resource if you are having trouble progressing on the diet.
– Learn how to deal with cravings. If you are craving an illegal – eat something, anything legal to get you past the craving. Give this post a read.
– Keep a very detailed journal including your medications, what you eat, when you ate it, any and all symptoms and reactions, sleep, mood, eliminations, etc. This will help you track your progress. Do the Crohn’s disease activity index on a regular basis if you have Crohn’s. See this post.
– Understand that you may experience setbacks. It is not uncommon to have flares at the 3, 6, 9 and sometimes even 12 month times. Don’t let them discourage you.
– You may experience die off. Read this at pecanbread.com
– You’ll probably make mistakes. Don’t worry about this or be too hard on yourself. You’ll learn to identify them and you’ll learn from them.
– Don’t cheat with illegals – it reduces the ability of the SCD to heal your body and lengthens the time it will take.
– If you have Crohn’s, particularly at the ileum, you are likely to be B12 deficient. Read this post.
– Studies show that people with Crohn’s don’t absorb vitamin D as well as normal. Read this post.
– Keep in mind that not all SCD blogs have completely legal recipes. Be diligent and compare ingredient lists with the illegal / legal lists no matter where you are reading them.
– Subscribe to the excellent, free podcast “SCD Lifestyle” by Steve and Jordan. They are great guys that want to see you succeed on the SCD.
– If you feel you need medications, but want an alternative to the “big guns” like Remicade, Immuran or Humira, take a look into low dose Naltrexone, or LDN for short. I’ve written about it here and here.
– Go with organic/free-range/grass-fed whenever you can. The taste, quality and nutritional value are well worth the cost.
– Wondering how your doctor arrives at your treatment plan? I suspect your visits are too short to discuss standard of care so you can investigate that idea in this post.
Eating SCD 
Hello Paul,
Just wanted to say thank you for posting your story and so many good tips. I have recently discovered your site and hope to be able to soon try some of your recipes! I just started SCD three weeks ago. I was diagnosed with severe Crohn’s Disease in February so I guess it has been about three months now. I was completely lost at first and had no idea what this meant. I did a lot of research online and found some answers but when I read about the Diet I thought I would never go that extreme and that the doctors have to know how to fix this. Anyways, the only reason I even went to the dr. was because I had had blood in my stool for a few years now. I was like you and for some reason I just hid that fact from everyone when it started (I was probably 15, now 20) until one day I managed to tell my husband and he told me I was going to get it checked out. I don’t have the “usual” symptoms as most Crohn’s patients have I guess. I mean I would occasionally have diarrhea and some abdominal cramping but I would write that off as just being in my mind or that it was normal…anyways so i had the colonoscopy and the pictures were pretty hideous. If I hadn’t seen it for myself, along with some x-rays I wouldn’t believe my GI when he tells me that I have Crohn’s and it is bad (it keeps being described as severe and acute). Anyways, they put me on Entocort (a steroid) three times a day and Pentasa six times a day. I did that for about a month until my GI thought I had a fistula (turns out I didn’t) and said I should go on Humira soon. That scared me to death. I don’t want to have to an IV or be on a biologic. So here I am, depriving myself of my most favorite foods on SCD. I figure it is worth it if it works but honestly I am following it to the strictest of standards, using the phases, introducing foods only every couple of days to make sure I can tolerate them. But I am not seeing the results. Like I said before my original symptoms were barely noticeable. And now it seems like my pains, cramps, and fatigue are worse, and its easier for me to notice when I have a less than perfect day because I am more aware now that I truly have a disease. It is discouraging but I promised myself I would try SCD for three months. Anyways, you said you refused to take any more meds when you started SCD. How did that work for you? Do you think that put you at an advantage, or looking back do you think drugs may have helped for a while? Also, when did you start incorporating cheese and yogurt into your diet? I am unsure of when to start those things. Thanks!
Hi Jada,
You’re welcome and I’m sorry that you had reason to find my site.
My crohn’s was on the other end of the spectrum from yours. Not since I was 17, twenty plus years ago, would my disease be described as severe and acute. For the last two decades I would characterize my disease as mild to moderate and slow-moving. I had a flare every couple of years or so, but did not keep myself in the care of any doctors otherwise. So my condition was much different than yours when I started SCD. I made a lot of mistakes, just ate everything legal from the beginning and progressed slowly. I do not regret refusing to take meds. The risks of the big ones scare me and I prefer the risk of my slow-moving disease to the drugs. However, if I did get into a position where I thought I needed more than the SCD, I would try low dose naltrexone (LDN). It has been around for a long time for a very different use, but it seems to work well for some people. I don’t know the success rate for IBD, but in my opinion, the risks are less scary. You can read more about it here: http://www.lowdosenaltrexone.org/ . There are also groups on Yahoo that deal with it’s use: http://groups.yahoo.com/search?query=low+dose+naltrexone .
You may not have heard of LDN from your GI. That would most likely be because it is not yet a part of the standard of care for IBD, and it’s use for IBD is off label.
Looking back at your question, the only drug that has helped me in the past is prednisone. Of course other than Pentasa, that is the only drug that I’ve used and only for short times for flares. I have not been on any maintenance drugs for my CD. It is working well for me to not be on any drugs. I think the anxiety that they would provoke in me would counteract any of the good they may do.
Now having said all that, you have to understand that SCD alone might not be enough. Hopefully, this would only be true in the beginning and you would eventually be able to wean from your meds as your body heals. If you do this, you’ll have to do it in concert with your doctor. S/he may not agree with the SCD, but should advise you on how to wean.
Another thought to ask yourself, Do you need to start Humira now? Are you in terrible shape now or can you afford to give the SCD more time?
And are you journaling everything? What you eat, when you eliminate and what it’s like, blood loss, fatigue, etc., etc.? This is very important to help you track down things that may be adversely affecting you. For instance, some have problems with carrots or nut flours and butters in the beginning…
As far as when to start cheese and yoghurt goes, I had to look it up. What I found on pecanbread.com says not to start probiotics until about five days on the diet: http://www.pecanbread.com/new/probiotics1.html. I don’t know about cheese. Just start small, record your reactions and see what happens.
I hope you feel better soon Jada.
Cheers,
Paul
I started SCD a few weeks s ago and suffer with constipation and when I finally do go to the bathroom it lasts 3–5 hours. Could I have a die off period and should I go back to Intro with just broth lean m,eat no applesauce or banana….? I am feeling overwhelmed Mimi
Mimi,
I don’t know. I’ll refer you to this page on the official website: http://www.breakingtheviciouscycle.info/knowledge_base/detail/constipation/
-Paul
Hey Paul, I come from China, and talk about SCD for your help, because i’m loser with SCD.
Sorry,my ENG is so lower and help you will reply!
NAME: LIU YOUQIU
AGE: 31
Disease: IBS
SCD: 3 months(20170613)
Tel: 18852474677
Liu,
What can I do for you?
-Paul