Grandmother Knows Best About Crohn’s Disease

On Boing Boing  a post by me tell about a man who cured himself of Crohn’s Disease mainly by following what is called The Specific Carbohydrate Diet. He got the idea from his grandmother, who heard about it on the radio. The diet is about eighty years old. The version he used appeared in a book published in 1994 — 17 years ago. Still no clinical trial.

As I’ve said, if you have managed to cure yourself of a serious medical condition please let me know. I would like to learn from your experience and help others learn from it.

25 Responses to “Grandmother Knows Best About Crohn’s Disease”

  1. Jay Says:

    Great post. If it is indeed effective, I wonder how translates to those without Crohn’s, or perhaps people with Celiac, etc.

  2. Anne Says:

    Hi Seth,

    I had Crohn’s for ten years and I was on Prednisone for ten years, in the end i told the doctors that I wanted the large intestine cut out and they did, my small intestine was made into a j-pouch and I began to get my life back. I no longer have the symptoms of the disease but now have adrenal problems from being on Prednisone for ten years. Six months ago I was given antibiotics for an acne break out. After seven days I began to experience much of the same symptoms as I had when I had the disease, i did lots of ‘google research’ and determined that it was Colistrium Difficile as the symptoms were very much like that of a corkscrew burrowing into my intestine. I knew that if I didn’t stop it soon I would be back in hospital. I took probiotics and a rice based protein supplemental powder which has a lot of fibre in it. It stopped within a day of taking these things. I took the probiotics for 2 weeks and then stopped and within 2 days I got the same pain. I started probiotics again only this time I took the ones with Saccharomyces boulardii in it, because it fights against spore producing bacteria. I then had Sauerkraut which is a fermented food. The symptoms were gone within a day of doing this and I have not had them since. I also take Colloidal Silver which kills off any infection that I have. I found out that I was allergic to wheat and dairy and that it was making me sneeze and break out. Once i stopped eating it, my body then began to create a die off effect of the bad bacteria and I broke out even more, lasted a couple of months and then it just stopped. If you take Colloidal Silver, probiotics, you go through what is called a ‘die off’ reaction and your body acts as if it has the flu. This is normal because it is getting rid of all the bad bacteria. I thought that you might be interested in my story :)

  3. Felix Says:

    Hi,

    i suffered for a long time from migraine (megrim?) and nothing did help. I did take heavy pain medicamentation and later triptans. These started to work in the beginning, but they weren’t a real cure. so what did me help with this problem?
    Getting fired from my job! The moment someone told me, that i needed to go, the headache was gone, never to return.

    I do not blame my doctor for this, since she suspected, that it was a psychological problem.

    Greetings Felix

    PS: I read in some of your posts month ago, that you wanted to improve your sleep by opening a window at night. This is interesting because i had some problems with sleeping and what helped me was reducing noise (moving to another place) and minimizing light. Sometimes i sleep with ear plugs and a sleep mask. Since i started this i need aprox. 1 hour less of sleep every night.

  4. Tomm Says:

    It was mentioned on the wikipedia page, but perhaps you missed it: there is a 100 person clinical trial that was started earlier this year at Rush in Chicago. http://www.rush.edu/rumc/page-1298328953440.html

    Also, thanks for mentioning that the Wikipedia article was imperiled in your article – I went and fixed up the article so it’s no longer in any danger of getting deleted.

  5. Christina Says:

    I had a number of health problems that doctors insisted on treating individually – I couldn’t keep food down, had ulcers, anxiety, joint pain, kidney infections….I was told repeatedly that it was IBS and nothing could be done about it and/or that it was just stress and that I needed to “relax.”

    After ten years of starving and being in pain (I’m 5’5″ and weighed 98lbs. I was paranoid about eating in public for fear of throwing up as a few bites would trigger me to throw up) an acupuncturist suggested food alleries and I persued cures myself and realized I most likely had Celiac Disease. I went back the the gastroentinolgist who had “cured” my ulcers and he claimed I didn’t have the disease based on my lab results from 5 years prior but if eating a gluten free diet made me feel better then to stick with it.

    When I started getting panic attacks after a nasty kidney infection/stone my doctor wrote me off when I questioned dietary changes and blamed the antibiotics. She immediatly wanted to stick me on Xanax. I self diagnosed and started playing around with a yeast free diet and never filled the subscription.

    Eventually I started working with a holistic chiropractor who has listened to me, supported my experiments, and given me dietary advice. He convinved me to without telling me to return to meat after twenty years as a vegetarian, got me off sugar (although that is a work in progress), and all grains – not just gluten based ones. I’m not 100% better, but I am doing so well compared to just a year ago. I know more about nutrition then ever and can “hear’ changes in my body – like recognizing when food has something in it that I’m hypersensitive to after a few bites (and knowing how to combat and problems that might result).

    I too went on glutamine, probiotics, and B12. Through diet I’ve corrected a lot of problems with my liver, kidneys, intestines (and GI tract), anemia, etc. My thinking is clearer, I don’t feel so strung out, no more panic attacks, more energy, no joint pain.

    I just wish someone had listened and been able to advise me sooner – ten years is way to long to wait.

  6. Seth Roberts Says:

    Tomm, thanks for saving the Wikipedia article.

  7. CJ Says:

    I’m a biochemist; I have Crohn’s disease. I started the SCD the day I was diagnosed, now almost 4 years ago. The Boingboing discussion is very discouraging.

    Within 2 weeks, my diarrhea had stopped. Within 2 months, the bleeding had stopped. Within 3 months, I was up 13 pounds, after losing 1 pound/week for almost 9 months. Within 6 months, I was back to arduous caving trips. Within a year, my blood values were all within norms, except for folate. (That pesky folate.)

    About that time, I converted to a generally low-carb, grain-free diet, a combination of what Lutz (Life Without Bread) and Gottschall (Breaking the Vicious Cycle) had to say. And I felt even better.

    Today, I’m fine; I suffer not at all, unless I stray from the diet, in which case I suffer severe pain and discomfort.

    It must be noted my diagnosis is absolute; the doctor is beyond reproach, and in a phone conversation with the attending pathologist, it’s clearly Crohn’s and the differentials don’t match at all.

    Since my diagnosis, I have read >10,000 pages of books and primary literature on the subject- now adding “Colon and Rectal Surgery” (933 pages) for good measure. Also read Crohn’s original books, including his autobiography, the original Crohn, Ginzburg, and Oppenheimer paper, etc. Everything I can read.

    Anyway, doing great. Also note Leo Galland studied the SCD, and found it worked very well.

    http://www.mdheal.org/crohn%27s.htm

    “All 20 patients demonstrated a decrease in symptoms and reduction in medication use. Six patients have entered complete clinical remission, discontinued all medication, and maintained remission for five to 80 months.”

    As it is, I think I know what causes Crohn’s; I’m writing a book on the subject, but I don’t have a publisher. It’s a combination of technical literature and “popular” writing, so I don’t expect it to sell well. Most Crohnies don’t seem to want anything more than pills and surgery.

    Y’all take care, and if I could offer one tidbit: for those that wish to try dietary control, consider an all-meat diet. Check out the Dirty Carnivore forums.

  8. Henry Zhu Says:

    Hey Seth,

    I have had many problems since I was a child. Asthma, ezcema, allergies, etc. In high school I fractured my hip but wasn’t able to recover to normal. I wasn’t diagnosed with anything in particular because no one was really able to know what happened, why it happened, and what the problem was other than I had back problems. They say the hip/back was inflammed, gave me pain pills, and told me to come back if anything got worse (some sort of arthritis/back stiffening). If that would have happened I probably would of had to do surgery. My whole time I had been taking various medicines and things for all my ailments. I also tried a lot of alternative methods. Nothing really ‘worked’ and satisfied me. However, this past year and summer I learned about a method of self-healing in China and it really helped me.

    Its called Yixingtianxia. The two main methods are called la-jin and pai-da. They have a pretty bad English website at http://www.yixingtianxia.com/newpage/en/index.html. Its catching on pretty fast in China, so I’m not sure if you have heard of it. I was probably one of the few (and youngest) people to go there from the US to do a workshop there.

    I’ve written pretty extensively on the subject on a blog I made to talk about my experiences with disease/alternative medicine. I plan to continue to update my status and my thoughts there at eltacodelmente.wordpress.com. I would extremely glad to talk to you about my experience and happy to talk with you about the subject. I can only say that my life has truly been changed through my diseases. I feel like a totally different person not relying on the medicine to ‘treat’ my pain. Because I’ve been so greatly helped it only seems right to try and tell other people about what I’ve been through and what I’ve experienced. Its all pretty new to me but I feel eager to learn. I guess this passion comes from the personal connection to my life.

    I just stumbled upon your article yesterday and I feel it really in alignment with what I’ve been thinking about lately. Thanks a lot!

  9. Elisa Says:

    Scads of commenters saying that we can’t trust dietary treatments until we do double-blind studies. Uh, guys? You can’t do a double-blind study with FOOD! Double-blind studies work for drug trials because placebos and real pills look alike. A carb-free diet doesn’t look like a carby one.

    Seriously, do these people not know what “double-blind” means?

  10. CJ Says:

    Elisa- while true that double-blind studies are not possible, here’s one for you: to deny that diets work in Crohn’s disease would be to deny tens- probably hundreds- of controlled studies done on enteral nutrition (EN) and total parenteral nutrition (TPN). Very few medical professionals experienced with IBD would challenge that EN and TPN are effective at inducing and maintaining remission; most studies put the efficacy of EN and TPN at somewhere around 60-70%. See Oppenheimer’s excellent (and well-referenced) “Beat Crohn’s!” for more information on the subject.

    So- if “food in a can” (EN) or a needle-fed diet (TPN) control IBD, what is the mechanism? Note (from Oppenheimer’s book) that they are roughly equivalent in terms of efficacy, so it is not a matter of “bowel rest” (as provided by TPN).

    Instead, close examination of the ingredients of many brands- including Modulen IBD by Nestle- shows they are all depleted in starch and complex carbohydrates. This is extremely important: it’s the starch and the polymeric carbs (probably even disaccharides, including sucrose and lactose) that cause the problems. Monosaccharides are absorbed very “high” in the digestive tract- before they get to the part of the intestines in which the bacterial/yeast dysbiosis is occurring.

    The SCD/Gottschall/BTVC is simply a fork-and-plate version of EN and TPN.

    It is also important to note that all enteral diets are devoid of wheat, barley, rye, and oats; most have some small amount of cornstarch or rice starch as a texturizing agent.

  11. Elisa Says:

    Actually, that gives me an idea — maybe you *could* do a double-blind study with food if all the food was administered in some kind of liquid form….

  12. CJ Says:

    Nasogastric tube.

  13. Elisa Says:

    Of course, the bulk of our “knowledge” about diet and nutrition with regards to health is based on very shaky extrapolation. Nobody has done double-blind studies to test the long-term effects of salt, saturated fat, cholesterol, etc. in the human diet, but doctors keep on advocating that we reduce our intake anyway. The reason we don’t do double-blind studies of diets is because diets don’t require FDA approval.

  14. Nathan Myers Says:

    *********- 21Perhaps these are too pedestrian, but I discovered that the tiny blisters I got on the backs of my hands and neck only showed up when I eat cranberries, and that the sloughing skin in my nose, and bleeding sinuses, recur only when I eat onions or garlic.

    I mention these just because I have not found a physician who can name the symptoms. To -

  15. Nathan Myers Says:

    … To expect sensible treatment, or even advice, is too much to ask when there is no name for the apparent condition.

  16. Jazi yechezkel zilber Says:

    Used versions of the diet mentioned are almost priced as new. Evidence for the book desirability. Most books especially that old can be found for very cheap prices.

    http://www.bookfinder.com/search/?ac=sl&st=sl&ref=bf_s2_a1_t1_1&qi=qUDpzW5kRtTQqI3uJN0,dBk1jd8_3311505934_1:39:215&bq=author%3Delaine%2520gloria%2520gottschall%26title%3Dbreaking%2520the%2520vicious%2520cycle%2520intestinal%2520health%2520through%2520diet

    I have a very sensitive stomach, with chanigng stuff. But food is *obviously* a strong cause in the stomach. It is obvious to the blind. Mqny healthy people i know have a clear experience of food affecting the stomach. Denying that, is like saying that day is night.

    BTW, i am now browsing the SCD food list, and see that bananas are allowed only when ripe with black points. I know from my stomach experience, that i can eat bananas only when fully ripe. So she was clearly on something.

  17. Missy Says:

    I’ve had IBS for ever (since I was 4). Never once did a doctor look at my diet. Really? You’re a doctor and you can’t, or are being paid off not to, connect the dots between what a patient eats and them having severe diarrhea 20 minutes after each meal? Bitch, please.

  18. Jazi yechezkel zilber Says:

    Here are detailed records of SCD and all measures for chron’s. This lady measured it in many ways!
    http://thescdexperiment.com/results/

    Seth,
    This book is a guy who got his academic degrees by optimizing food and diet. He staes that he is not smart, but hugely improved brain by a variety of food tricks.
    He tried everything he says. He is very well versed in the literature (a thousand references!)
    http://www.amazon.com/How-to-Become-Smarter-ebook/dp/B0032JT11K

  19. Christina Says:

    After reading this (and the boing boing article) and talking to more and more people with digestive and GI related illnesses – I started a little survey (informal) to see what the responses of accurate doctor dignosis and support is with regards to diet changes.

    Not sure how I’ll publish the results yet, but I am surprised at how many people without these health issues think self-diagnosis is wrong or that seeing a few doctors before someone figures it out is an exception rather than the rule. Would love for this to spread to get a more accurate idea of what people’s experiences really are.

    http://www.surveymonkey.com/s/XNQKKDF

  20. Thomas Seay Says:

    I don’t know what constitutes “serious” ailment to your mind, but I had a very severe case of heartburn/acid reflux about 5 years ago. I couldn’t sleep well and was in pain most of the time. Eating became misery. At first I tried the acid blockers the doctors recommended, but that stopped working over time. Finally I found out about Dr. Jonathon Wright MD and his suggestion that acid reflux is actually caused by two little digestive acid. I started taking Hydrocholoric Acid per his suggestion with every meal. In addition to his suggestion, I took mass quantities of probiotics and also took Mastic Gum. I was better within a few days and completely cured within two weeks.

  21. Seth Roberts Says:

    thanks, Jazi. Those are both very interesting links.

  22. Jazi yechezkel zilber Says:

    Logical blindness against SCD

    In http://en.wikipedia.org/wiki/Specific_Carbohydrate_Diet#Criticism
    A doctor says:
    in my experience, for every patient I see who tried the diet and it worked, there are three to four others who tried it and it didn’t work”

    He practically says that it works for *some* people. Yet, if it does not work for all, it does not count. (rationaly, if it heals 20% of suferrers it is a wonderful gamble to try!)

    Which is again the cognitive illusion that personal solutions are uninteresting and he needs a solution that works for all. 

    I see it as stemming from wanting a “good colution” rather than a practical solution. Looking for a story.
    A diet that works for some is not a “solution” just a patch.

    As usual, normal people want to be healthy, and care zilch on whether it helps *everyone*

    PS. The blog is not loading much of the time recently. No idea why

  23. Perfect Health Diet » Around the Web; The Case of the Killer Vitamins Says:

    [...] Seth Roberts points out that the Specific Carbohydrate Diet has been curing Crohn’s for 80 years, but still no clinical trial. [...]

  24. Seth Roberts Says:

    Jazi, good point. The accepted drug “solutions” don’t work for everyone either. As you say, he is just biassed against SCD. The same doctor also said (quoted in that wikipedia article), “We’re not ruling out the possibility that it works, but you need more than a few successes to establish proof.” There are more than a “few” successes.

  25. Christina Says:

    There are two reasons dietary healing only works for “some”

    One is that changing your diet – especially when it means cutting out food oyu love – is difficult. It’s easy to cheat and results are rarely instant so it becomes easy to fall back into bad habits, and out of guilt use a white lie or two to justify your habit.

    The other is that not all people attempting dietary changes are getting good advice, or the right advice. I was treated for ulcers with pills and told to stay away from nightshades temporarily….turns out I had Celiac Disease which was causing the ulcers. Pills and that particular diet were a temporary fix destined to fail.

    Until there are controled studies (and better diagnosis) diets will always only work for a small sampling of patients.

    In the survey I set-up (http://www.surveymonkey.com/s/XNQKKDF – still a small sampling) 85% had to self-diagnose after visting 1-6 doctors to figure out what was going on. And they also had to bring up the idea of dietary changes as a method for healing.