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- A Customer "jo-downunder" - Severe Crohn's Cured. Perfect Health. Ulcerative Colitis Close to Surgery Fully HealedDecember 20, 2009
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. In fact, Lutz says that without the addition of fat, he found the bowel won't heal. 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. The big irony of this 'restrictive' diet is that our family's diet is far richer and more varied than it used to be and people who were formerly prejudiced see the food we eat looks and tastes so much better and their children can't keep their hands off it.
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.
March 2012, update: My younger daughter spent 18 months on the SCD. She's been back on a 'regular' diet since July 2010(She keeps 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, despite being on Imuran, 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.
Nov. 2013 Update. My elder daughter (aged 18) almost died. She was admitted to hospital with re-feeding syndrome, albumin level of 20, EN all over her legs, so she could barely walk, weight had dropped to 37 kilos and the cardiac team was called out 3 times because her heart rate was so high. A scope showed a hideously swollen colon. She had BMs all day and night and every time screamed that she wished she was dead. We had recently changed doctors and she was one of the sickest patients he'd ever treated. Her previous doctor blamed the diet for her sudden weight loss. I think fear and panic cause you to lose your sense of logic -- she had actually gained 6 kilos on the SCD but suddenly lost it -- but we didn't know at that time about the re-feeding syndrome (she had been deviating from the diet for a while and eating less and less and the Imuran her doctor believed was working wasn't). Even so, I cursed myself for ever messing around with diets and not putting her on Infliximab sooner. She didn't have the maturity to stick to any diet. Massive doses of Infliximab gave a brief window of slightly reduced inflammation and surgery, which was very, very close, was held off. She followed the nutritionist's advice as to her diet and continued out of hospital but only gained about a kilo or so. Back in hospital again 8 weeks later and the scope showed inflammation was still at the very worst level. Surgery was held off again(just) but she was discharged at 37 kilos and going to the toilet just as much during the day. She agreed to give the SCD one more try and this time combine it with Lutz, although not as low as 72 grams carbs. I thought things were too bad for any diet to get a grip but I was wrong. By the 6th day I knew she was going into remission. She began the diet exactly a year ago and has gained 15 kilos, all symptoms have disappeared and a calprotectin test came back normal.Her doctor is very interested in the diet and has discussed it with his colleagues. If it hadn't been for his saying over and over, 'fat and protein' I'd never have had the confidence to try again. My daughter does stick to the diet rigidly now but occasionally has food with cacao powder now she's fully healed because she can't give up chocolate completely. The clincher has been breaking her carb addiction altogether, including fruit.I don't know how my younger daughter got away with such a high carb intake. I certainly wouldn't encourage it now. She's still doing great, though. Both my children had highly aggressive, life-threatening disease which did not respond to conventional medicine. Both are now entirely normal.
I think it's important to deal with IBD in childhood because there's abundant evidence children respond well to dietary therapy and there's a chance they can go back to a 'less restrictive' diet and remain in remission. It's a shame children are not asked to do difficult things any more. The SCD apart, surely for Crohn's patients (with small bowel involvement) it would be better to combine a six or eight-week elemental diet with Imuran (or 6MP) rather than the usual protocol of steroids first then kicking into Imuran? The elemental diet will cover the time it takes for the Imuran to start working and, unlike steroids, promotes full healing of the entire digestive tract, which could give a longer remission and without steroid side effects.
I also recommend Life without Bread by Christian B. Allan, PHD.and Wolfgang Lutz, MD; The Gluten Connection by Dr. Shari Lieberman; The Second Brain by Michael D. Gershon MD; Dangerous Grains by James Braly, M.D., and Ron Hoggan, M.A.; Nourishing Traditions by Sally Fallon; Gut and Psychology Syndrome by Natasha Campbell-McBride; Nutrition and Physical Degeneration by Weston Price.
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- MaryH - 2013 ReviewI purchased a Soda Stream Soda Maker a few months ago from a local Bed, Bath & Beyond store where they also had an abundance of carbonators. The carbonators are $29.99 with no exchange, or $14.99 with an exchange. I've also seen the carbonators at many local supermarkets as well as chain stores like Target, Kohl's and Best Buy. I bet WalMart probably has them, too. What I like: using my own filtered water to make sparkling water anytime I want in a re-usable bottle that I didn't have to pay a bottle deposit on and have to return to a store to get my deposit back. What I don't care about one way or another: the flavored syrups since I'm not a big soda drinker and would rather have sparkling water plain or with a splash of cranberry, grapefruit or orange juice mixed in. What I don't like: can't think of a thing.