First, I want to thank you for your incredible website. My sister-in-law was recently diagnosed with Crohn's and her story sounds identical to yours. It has been really hard on us and her family and she is really sick. Right now they are scheduling surgery for next month. I am outraged and have told her about a family friend of mine that was healed through the SCD diet. However, her doctor told her that diet has nothing to do with the disease. Anyway, she's been resistant to trying the diet and my mother-in-law has repeated that "diet has nothing to do with the disease". I'm so happy to have stumbled upon your blog last night because I think it will help convince her that she should give this a shot (I hope!!!!). I plan on doing the diet as well as I have Celiac Disease and constant pain and stomach aches despite cutting out all gluten. I have given up on doctors and now go to a Naturopath who put me on Xymogen Opticlease GHI. It's a rice protein powder that is supposed to help the gut--I love it and it really seems to make my stomach feel better. I also run marathons so the extra protein has made a huge difference in my recovery. Is a rice protein powder Illegal??? I'm just going to assume it is for now, but wanted to check with you (just in case bc I love the powder). Do you have any idea if it would still have the Long Chain Carbohydrates in it? Thanks again!!! I love your site and can't wait to start the diet today. JL
I hope that your sister-in-law will try the diet before having surgery because the diet does really work! Many people who were about to have surgery have tried it and gotten better...it would be so sad to not have tried it and find out later that surgery wasn't really necessary if the diet had been tried. All you can do, though, is pass on the site address and also tell her that I would be happy to email with her via the Contact page or facebook page. I hope that she will try it!
Unfortunately the rice protein powder isn't legal because it does contain long-chain carbohydrates. For the SCD to work, it's really important that all long-chain carbs are eliminated - otherwise the bad bacteria are still being fed by the long-chain carbs and will continue to cause problems/symptoms...for this reason, the SCD will only work if it's done 100%.
A good resource for questions like this as you're starting the diet is the legal/illegal list on the official SCD website: http://www.breakingtheviciouscycle.info/legal/legal_illegal_a-c.htm
Also, if you haven't already seen it, I have a "Starting the Diet" page that will help you begin the diet.
I hope this helps! Please let me know if you have any other questions!
(A Note of Encouragement:)
It's September 2012 and over the last year or so we've heard from more and more people who are saying they were told about the diet by their doctor! That's the best possible news and is a new development. It means that many people are seeing improvement or complete recovery by being on the SCD and doctors are observing this result. When these doctors meet another patient who seems like they would be willing to "try anything," they are remembering this success and suggesting the Specific Carbohydrate Diet.
Keep up the good work! Keep mentioning your experience to your doctors and nurses... not just your GI but any doctor or nurse! It all adds up. Nothing speaks louder than success and your success gives your health care provider confidence to mention it to other patients.
Update: June 2018
Many doctors and clinicians are now aware of and promoting the SCD, led by Dr. David Suskind at Seattle Children's Hospital. See more about his and many other people's research here.
I was semi diagnosed in February, 2011. I say semi because the biopsy from the colonoscopy is inconclusive and also the blood test for IBD Serology 7 (genetic) is inconclusive. The Dr. who performed the colonoscopy said that "from what he saw, he's pretty confident it's Crohn's." Especially where the ulcer is located in the ileum causing swelling/semi blockages. I guess by my symptoms, something's going on inside. I've been sick too many times to count, since the first of this year, to add some new food item to my menu to see if I can eat it.
My question to you is about the SCD diet. Many items listed on the "legal" list, I cannot eat - almonds, beef, broccoli, and many, many more - that's just the A and B letters! How do you go about doing this diet if you can't eat a lot of things? Also, my gastro dr. said to follow a very low fiber diet. Basically, my diet consists of toast, soup, smoked turkey, grilled chicken, baked potato without the skin, rice, freeze pops, saltines and a few other delicious items! I guess until I get into remission, that's how things have to go.
I get severe cramps, stomach grumbles, nausea and vomiting when I eat something I cannot pass thru the intestines (I guess because of the swelling which I don't know if it's still there or reduced - I'm still on prednisone, Omeprazole and Pentasa). I just found out that eggs are a trigger. The last three times I was sick, I had a scrambled egg the day before. I've been keeping a food diary.
I a stickler when it comes to following directions. If I could just find out what I can't tolerate, I'd stay away from it.
Any help/advice you could give would be appreciated! DB
Thank you so much for your note! I'm sorry to hear how sick you've been and your possible diagnosis of Crohn's.
I'm really glad that you found out about the SCD, because it truly does work and is totally worth the time and effort it takes to learn the ropes at the beginning!
Basically, the SCD works in a very different way than the mainstream treatment options that are out there. While other treatments aim to put a "band-aid" on the symptoms by trying not to irritate the digestive system and control only the symptoms of digestive illness, the SCD works by getting to the root of the problem.
The problem is that there are bad bacteria that overgrow in the gut, and they need long-chain carbohydrates (which stay in the gut longer and feed them) to allow them to survive and keep growing - allowing them to keep causing the symptoms of the digestive illness. With the SCD, we eat only short-chain carbohydrates so the food is in our body for a shorter time and thus takes away the food for these bad bacteria. The bad bacteria die off, and are no longer able to cause the symptoms of the digestive illness.
So, when your doctor tells you to eat only low-fiber foods, he is giving you the conventional "put a band-aid on the symptoms" advice. So you have to decide whether to follow the doctor's conventional advice, or just get going on the SCD and start elminating the long-chain carbohydrates from your gut so the bacteria can't cause your symptoms anymore. The low fiber diet might make someone who is in lots of pain feel a little better, but it isn't going to solve the problem.
And again, with the legal foods, you have to think about them differently...many people find that after their body had a chance to heal on the SCD, they are able to tolerate many foods that they once couldn't tolerate. For example, as I was healing at the beginning, I found I had a lot of pain after eating 3 foods - tangerines, walnuts, and too many dried apples at once. After being on the SCD for a year or so, my body had healed completely (because the bad bacteria were starved out and my body had time to recover and heal), and I was able to handle those 3 foods just fine. I, and many others, have found that they are able to tolerate almost all - if not all - of the legal foods on the SCD because they are now completely healed inside.
So, what most people do is keep a food journal with symptoms and foods eaten that day to track which foods they are tolerating okay on the SCD. They add one new legal food at a time in the beginning and keep track of how it's tolerated. You'll find a food journal page you can print out for this purpose on the Starting the Diet page, along with a whole bunch of other helpful info for starting the SCD.
Basically, you just have to change your way of thinking about food, and you have to go by the SCD alone and not worry about what your doctor is telling you...because he has a completely different frame of reference about how to treat digestive illnesses. Doctors are taught in medical school that "food has nothing to do with digestive illnesses." So that is where they are coming from. But I, and thousands of others, KNOW that food has EVERYTHING to do with digestive illnesses - because we've been completely healed by folllowing the SCD 100%.
The most important thing about the SCD is that it has to be followed 100% all the time for it to work. If you ever have a question about whether a food is legal or not, please feel free to write to me. Or you can also check out the legal/illegal list on the official SCD website.
Also, be sure to read "Breaking the Vicious Cycle" by Elaine Gottschall for more info and details.
I hope this helps! Please feel free to write any time you have questions along the way!
Take care, Erin
Hi Erin, I was diagnosed with Crohn's disease last February. My doctor has prescribed Pentasa to reduce the bloating and the abdominal pain. She also recommended that I stay away from raw veggies and most importantly lettuce, broccoli, beans and cabbage as well as all sorts of nuts. Annoyed and frustrated by feeling bloated 24/7, I decided to follow the SCD diet. However, I am noticing that most of the recipes have nuts and the salads are with raw veggies. Can you please advise if you have come across Crohn's patients who were not allowed to eat the type of foods above and still followed this diet and felt healthier? Should I try this diet or follow my doctor's advice? Thanks very much. JB
Thanks for writing. I have heard of SCDers who couldn't eat raw veggies, and cooked them instead. But most are able to add them back into their diet after their digestive system has healed from being 100% on the diet. It can take weeks for some or months for others. They would try them one at a time and keep a food journal too so they could trace back any symptoms they got from that new food.
From my experience, the doctor told me to eat only bland foods to avoid irritating the digestive tract. (This meant white foods like bread, potatoes, etc. - exactly what I wasn't supposed to eat on the SCD!) That sounds like what your doctor is also suggesting. However, I decided to follow the diet and not worry about what the doctor told me. The reason I decided to do that was because I could see that the medical community doesn't believe diet can really help Crohn's and other digestive diseases. So they prescribe medicine that masks the symptoms, instead of getting to the root of the problem. The SCD gets to the root of the problem by eliminating the long-chain carbohydrates that feed the bad bacteria (which in turn attack your body). So I went 100% on the diet and didn't worry about the doctor's suggestions for diet. The result is that I am completely symptom-free!
So I would try to cautiously eat the nuts, fruits and veggies and keep a food journal to see if they are bothering you. They may at first, until you are healed by being 100% on the SCD, and then you could add them back in. That's just my suggestion from my own personal experience.
Try the diet 100% for 30 days and see if you're feeling better. That way you won't get too overwhelmed by it.
I hope this helps!
My 16 year old son has had Crohn's Disease for 2 1/2 years now. He has been on 6mp and Pentasa all these years. He has not been able to reach remission and was so sick this past winter that my heart couldn't take seeing him like this anymore. So on January 1, 2010 I started him on the SCD and haven't looked back. He has gained 20 lbs and the terrible pains he had to live with every day have subsided. I am so thankful to this diet and how it has helped my precious son. The main reason for this email is to ask for some encouragement. Today, Zach had his check up with our GI Doctor. I explained the diet to him and that I would like to wean Zach off his medication. His doctor did say okay, but reluctantly. He explained that there are no statistics to back up this diet or the supplements I give him. He said that he might do well for about a year but then he would most likely relapse. He said that without these meds he could develop fisures and fisculars and severe narrowing of the intestines. So, basically he thinks Zach should stay on the meds as a maintenance therapy, but will respect our decision to try the diet alone. Well I left the doctors office alittle unsure. I really believe the diet is working but sometimes worry since Zachary is not able to have the normal teenage experience. He had to grow up really fast having this disease. I'm so prould of him and how he has been so dedicated. He truly is a gift from God.
Thank you Erin for any suggestions or encouragement you might send my way. Unsure
Thank you so much for your note! I'm so glad to hear how amazingly well your son is doing on the SCD! Good job! He is responding so well to the diet!
I know that feeling, of being unsure what to do because the doctor isn't supportive of the diet. My doctor responded the same way, and I just thought, why should I be on medication to treat non-existent symptoms? So I did wean off of Asacol, and I haven't been on any medications for 8+ years now, with absolutely no symptoms (except the few times when I've accidentally eaten something not legal!).
It's helpful to remember that the only reason that there aren't statistics to back up the SCD is because there isn't any money from drug companies to fund that. If there were studies done, I'm sure that doctors would embrace the diet. Thousands of people have gotten completely better by sticking to the SCD 100%.
There are doctors out there who actually do recommend the SCD, so that is also comforting to know. One doctor recently wrote to me and told me she regularly recommends the diet to people and most have seen great success from it. She said that it makes perfect sense to her - that it's not witchcraft; it has science behind it. If you ever get the cookbook by Raman Prasad, "Recipes for the Specific Carbohydrate Diet," you will also see another doctor endorse the diet in writing in that book. So.....there are doctors out there who think it makes sense, have recommended it to patients, and have seen amazing success!
Also, remember who cares the most about your son's health - ultimitately it's your son who cares the most, and then you. So keep up the good work and remember that you're doing an amazing job and the best thing possible for his health!
I think that it's great that your son is owning the diet for himself and is mature enough to have the determination and long-term outlook to do the SCD. In my opinion, the average modern American teenager isn't as mature as they could be because they aren't expected to be mature. This does nothing for their preparation for adulthood, where responsibility and hard work are what will help them lead a successful life. Your son is well on his way to being a well-adjusted, mature adult who will be able to handle life better because of his experience with his illness and his ability to handle it well with the SCD. (There's my 2 cents, for what they're worth!) :)
I hope this helps! Keep up the good work!