The path to a sustainable, controlled remission of IBD, IBS, November 26, 2000
By AZgoodbooks “mikesimons”
I took drugs for 15+ years to battle my Crohn’s. Nothing really worked. I finally started the SCD four years ago and have been able to maintain a controlled remission, drug free, since 1997! This diet has changed my life! For me, this diet provides better results than the drugs ever did, without the long-term side effects. After 1.5 years on the SCD I finally allowed my doc to perform a colonoscopy. The results: “We got all the way to the cecum. No evidence at all of Crohns. No scars. No inflammation. Nothing. You look completely normal.” (Ahem – and this from a doctor who previously claimed diet had nothing to do with IBD.)
My recommendation to IBD sufferers: get this book and start the down the path to sustainable remission. Diet has everything to do with getting better–find a new, more supportive doc if yours disagrees or learned otherwise!
My only regret is not having started this regimen sooner!
Celiac disease, October 7, 2009
By reader (CA, USA)
Many (most it seems) of the reviews for this book are from sufferers of Crohn’s disease and Colitis, and that’s fantastic that the SCD helps those conditions. I’d like to chime in on my experience with using it to treat (and hopefully ultimately reverse) Celiac disease. The diet was originally developed to treat Celiac disease, and unfortunately for Celiac sufferers it has fallen out of favor as a treatment for that disorder.
Celiac disease has ravaged my health and life. I have struggled with food allergies, chemical sensitivities, thyroid problems (multi-nodular goiter), been diagnosed with IBS, Aspergers, ADD, and Chronic Fatigue Syndrome. All of those things were symptoms of the underlying problem of Celiac disease. When I finally got a Celiac diagnosis and went on a gluten-free diet it seemed to change my life. No longer was I going to doctors’ offices on an almost weekly basis (both conventional and alternative approaches). I had been spending thousands of dollars a month on every imaginable therapy and supplement. The gluten-free diet lessened that considerably for about a year. I knew I was on the right path. Then a lot of the symptoms started to slowly return and it was very confusing as I never deviated from the diet.
After a year of the gluten-free diet the SCD didn’t seem quite so restrictive or impossible. And I was desperate. It was probably vanity that got me to make the leap, as my hair had been thinning for years and was only getting worse on the gluten-free diet, to the point that you could see my scalp and I had barely any hair left (I’m female in my 30s).
I’ve been on the SCD for 4 months now. It has COMPLETELY reversed all of these conditions. I am not taking any additional supplements or medications of any kind, or doing any other therapies of any kind, or visiting any doctor of any kind. My hair is growing in thicker than it ever has been in my life. The IBS, Aspergers, ADD, thyroid problems, chemical sensitivities, food allergies and chronic fatigue have all faded. My head is clear, my ability to focus has improved enormously, my nerves are calm, my energy level is at least three times or more what it used to be, my strength and physical endurance has gone way up, as have my moods. I feel stronger inside and out.
As a caution, I will add that the first two months of this diet were at times hellish. Not only the adjustment to the new food protocol, which is indeed very restrictive and can kill your social life, but also because as my body was apparently detoxing I went through various phases of anxiety and irritability and fatigue. But nothing as bad as when my illness peaked about 2 years ago. I recognized them as detox symptoms, and am now thankfully over the hump. All the work and effort has been well worth it. I feel like the SCD saved my life (not to mention my pocketbook).
Severe Crohn’s Cured. Perfect Health. Ulcerative Colitis Steadily Improving, October 3, 2009
By A Customer “jo-downunder”
I rewrote my review because I learned recently that children at the clinic my daughter attends are being prescribed Humira “on compassionate grounds” because they are extremely sick. My daughter would be one of the least likely of their patients to be leading a wonderful, healthy life. But she is. She was diagnosed with severe Crohn’s Disease two years ago – all over the place, including in the stomach, which is apparently rare. Her doctor said, “It was a very impressive scope and we will have a very, very long association.” She has followed this diet strictly (no drugs) for just over a year and a few days ago, she had her last ever appointment at the clinic. It’s usual to do a follow-up colonoscopy after a year but in her case, her doctor felt it would be unnecessary. Since starting the diet, her blood work has been consistently high-normal and she has gained dramatically in height and weight. She is a tall, strong, glowingly healthy girl among little ghost children.
The hardest thing about starting my daughter on this diet was fighting her doctor over it. Despite knowing nothing about the diet, he seemed to think there was something not quite healthy about it. That is the second reason I rewrote my review. I disagree with the comment by the reviewer, Galina Kotlyar, about saturated fats. My understanding is that saturated fats such as coconut oil are positively good for you and good for the heart. Being a medium-chain fatty acid,coconut oil is more easily digested than most fats so if you can’t handle fat, consider this one. Since I read about its anti-inflammatory properties and learned how nutritious it was (it’s even been used in IVs), I make sure daughter has heaps of (extra virgin)coconut oil. Also, having read Allan and Lutz’s book, Life Without Bread, I learned that the whole ‘fat and cholesterol are bad for you’ mind-set is wrong. They say the body runs more efficiently on fats than carbs. Lutz has clinical experience of treating and curing thousands of patients of various diseases. Re. the SCD, Gottschall says the diet is highly nutritious depending on your choice of foods. I have found that to be the case. You don’t even need to eat much cheese (dairy free is an option) or have any fruit juice – just have the fruit. The Crohn’s Colitis Foundation of America says on its Website that the diet itself (SCD) “is not particularly unbalanced.” I find that comment a little disingenuous since the diet essentially removes complex carbs that, for most of our evolutionary history, we never ate anyway.
You’ll find J. Seidman’s review in the two-star section. He recommends Wolfgang Lutz’s book, Life Without Bread, for sufferers of Crohn’s. It would be a good idea to get Lutz’s book too. See which one is the best fit for you – do one diet or the other. I’m surprised no one has mentioned Lutz’s work here prior to Mr Seidman. Wolfgang Lutz is a highly-respected Austrian physician who has had great success treating cases of Crohn’s and ulcerative colitis with a low-carb diet. He discusses pediatric cases in his book. I don’t actually see Lutz’s diet and the SCD as in opposition to each other; the principle is fundamentally the same: carbs are causing the problem, so they are restricted. The premise of the SCD is that microbes feed on undigested carbs and so if only simple carbs are ingested, absorption is quicker and microbes are starved out. I find this theory not only plausible but likely considering the large study linking high consumption of processed sugar and Crohn’s Disease. The SCD is NOT a low-carb diet; it is exactly what it says it is: it allows only specific carbs, ie. completely cuts out complex carbs such as cereal grains, rice, potatoes, table sugar, high-lactose dairy. There is also the addition of a super-strength probiotic in the form of homemade yogurt, which may be of particular benefit to sufferers of ulcerative colitis. It is NOT difficult to eat high-carb on this diet. My daughter’s carb intake is very high – I have taken pains to prove that to her doctor this past year because he seemed to be unhappy about a low-carb diet for a child (After reading Lutz’s book,I now realize that the low-carb prejudice is illogical and just plain wrong) but that is not to say that I recommend such a high carb intake as my daughter’s. Begin with caution and ‘listen to your gut.’ Just because something is allowed on the diet doesn’t mean you should consume large quantities of it or have it at all. Some people, for example, may be sensitive to the nightshade family which includes tomatoes and capsicum, both of which are allowed on the diet. It may take more than one attempt at the diet for you to be successful. I’ve persuaded my elder daughter (who has ulcerative colitis) to give it another try because she has begun to experience joint pains, whereas previously her symptoms were well controlled by Mesalazine.
Re. the strictness of the SCD, I believe that is because it was developed by the pediatrician, Dr. Sidney Haas, to treat Celiac disease not cured by a gluten-free diet, where even small amounts of gluten can be detrimental. I’m not sure about the soy restriction but there’s a reference in the back of the book that relates to Celiac disease. A sizeable number of Crohn’s patients also have Celiac disease. Even among Crohn’s sufferers who don’t also have Celiac disease, studies have shown elevated antibodies to gliadin (a protein found in wheat). Research now puts the incidence of Celiac disease as around 1 in 100 and gluten sensitivity also estimated to be very common. Get yourself or your child tested for infections or sensitivities but if you still end up not knowing the cause of your disease, the SCD approach (starving out ‘bad’ bacteria and overwhelming with ‘good’) is a sensible one, particularly if you need it to work fast.
My daughter was started on steroids when first diagnosed. The stricture quickly got far worse and I knew she’d need surgery. Only problem was the doctor couldn’t get her off steroids — every time the dose was lowered she had agonizing pain. I hit on an elemental diet (synthetic and in liquid form) I imported it from the US and it worked so fast (within 24 hours) it caused a real stir at the hospital and she quickly came off steroids. She continued drinking this stuff for the best part of a year and the disease retreated to a 7cm section of the terminal ileum, which was resectioned. This type of diet is not a good long-term option because there’s a high rate of regression once stopped. I started my daughter on the SCD in hospital. This monstrous disease was back two weeks after surgery (I’ve read it can be back in as little time as a week) but the symptoms were less severe. She kept going slowly on the diet and the last symptom -mild diarrhea – disappeared a couple of months later.
And the rest has been easy. When I read complaints about the difficulty or convenience of sticking to this diet, I think to myself, Are we talking about the same disease here? My daughter had no quality of life – all she wanted was to be able to stretch out in bed. I admit I put in a bit of effort with her food at first because I wanted to prove to her she could give up her pasta, rice, potatoes and still eat like a king but I don’t spend a lot of time in the kitchen now. I’m not a good cook by any means. In the beginning, it was a bit ‘death by pumpkin mash’ but I got some good cookbooks and my daughter was pleasantly surprised that she has full ‘normal-looking’ meals. I use Sandra Ramacher’s and Raman Prasad’s cookbooks heavily because the recipes are simple, practical family ones. You do need at least to have a good blender.
The food is good and plentiful and not hard to make. The big irony of this so-called “restrictive diet” is that my daughter’s diet is less restricted now than before she got sick – she used to just fill up on starches like rice and pasta and ate very few vegies,fruits, nuts or beans. She eats a wide variety of food now – she loves her food and her appetite is totally satisfied. We have eaten out and gone on holiday and she goes for sleepovers – it just takes a bit of planning and preparation. She plans to be on the diet just one more year strictly and then back to an unrestricted one. My daughter looks more healthy and is more energetic even than when she was little. At 13 now, she has clear skin, glossy hair, whiter teeth, great mental focus. I’ve also been wondering why her haemoglobin is so high. I think it’s because if you cut out complex carbs, you need to cast the net wider to get your calories, so you need a wider range of foods, which means you end up getting more nutrients. Also, if you cut out grains, which are hard to digest, then your body doesn’t need to take from its limited store of nutrients to digest them. This book has changed my opinion about what a healthy diet is.
At our last visit to the clinic, I saw a mother sitting with her head in her hands most of the time. I plan to write to the head of department but I don’t know if I’ll get anywhere. My daughter insisted on presenting her doctor with his own copy of this book at the start of the year. I doubt he’s read much of it because a few months ago, when he saw my strong, glowingly healthy and happy daughter, he asked in surprise, “What does she eat?” If doctors don’t want to promote this diet or any other, that is one thing but no doctor should ever, EVER try to put off a parent from trying this. My daughter’s stricture got worse after she was started on steroids. If I’d started her on this diet straight after diagnosis, she might even have avoided resection. The two case studies by J. Fridge at Stanford University (available on the Breaking the Vicious Cycle website) are only two cases, but they stunned me – those two children were cured in a matter of months.
My daughter owes her health and possibly her life not only to the work of Dr. Sydney Haas and Elaine Gottschall but also to the reviewers here, complete strangers, who took the time and trouble to tell their stories. I am so grateful.
September 2010, update: My elder daughter’s UC had progressed and the mesalazine enemas and tablets were no longer effective. 6MP was prescribed but I wanted to give dietary therapy one more chance. I started her on the SCD (her third attempt) but this time I made sure she did the intro diet for longer (Refer to pecanbread website) and stuck to it very strictly. The bleeding stopped altogether within three days. She lost weight at the start of the diet and had some ups and downs. Three months in and she’s gained all the weight back and then some. She seems much happier and more energetic. She was reluctant to do the diet but admits that the food is incredible: she likes the wraps with strips of steak, lettuce,cheese and salsa; curries with Indian-type bread; fruit filled meringue baskets with vanilla ice cream;banana splits; peach melba; crackers with goat’s cheese, sun dried tomatoes and basil.
March 2012, update: My younger daughter spent 18 months on the SCD. She’s been back on a ‘regular’ diet since July 2010(I encourage her to keep the carbs down as much as possible.) Over 3 years now of perfect health (no meds), black belt in Karate, training 3 X weekly. Her doctor said he was not going to take any credit for her recovery but he was also there to learn. My elder daughter had 5 months remission on the SCD, glowing health and even her acne disappeared along with her joint pains.She couldn’t stick to it, though, and had a major flare. I then started her on Lutz’s low-carb diet and, although results weren’t so dramatic as on the SCD, bleeding became intermittent after a couple of weeks. She wasn’t able to stick to the low-carb diet either and has now been diagnosed with very severe left side colitis. She’s back on the SCD (her choice) and already after 1 week there’s been an improvement.