Debate and concern about the Specific Carbohydrate Diet [1] Questions for Elaine Thu, 2 Jan 1997 17:08:17 GMT I was diagnosed with uc about 2 months ago and the colonoscopy showed all but the descending colon was involved. High doses of asacol (4 pill/3x/day) are currently having little effect. I am trying to round up a yogurt maker/warming tray and the rest of the supplies including the elusive dry curd cottage cheese so I can try the diet. My concern about the diet is simple. I believe in the results that I have seen on the net, but the science teacher in me wonders if these people might have been heading for one of their periodic remissions and the diet had little or nothing to do with that anyway. Elaine in her new book (pg. 26) talks about the damage to the microvilli, leading to their destruction and loss of their digestive/absorptive fate in carbohydrate metabolism. In turn the mucus producing goblet cells increase in number and activity resulting in a hyper-production of mucus. She states that this leads to a "naked intestine" and ulceration as seen in ulcerative colitis. The problem is microvilli only are found in the small intestine and as the name "colitis" implies my problem is downstream in the large intestine/colon. Again microvilli and carbohydrases (enzymes that digest carbohydrates) are only a part of the small intestine, they do not exist in the colon, never have and never will. So, is ulcerative colitis really a prolbem with the small intestine leading to ulceration in the colon? None of the literature suggests that we uc patients have anything wrong in the small intestine. Help! Also if the central idea behind the diet is to starve out the bad bacteria, what about the normal and necessary "good" bacteria that make up part of the healthy and required bacterial zoo that our intestines normally maintain? Is the diet somehow that selective and only starves the bad boys? Again the testimonials are powerful stuff, BUT can anyone help me deal with these areas of confusion? Dave Johnson dajhnsn@sdcoe.k12.ca.us
Thu, 2 Jan 1997 20:23:05 GMT Dear Dave, If you can somehow squelch the scientist in you and use just a little blind faith in your approach to the diet, it may be the best route to take. Frankly, I didn't even understand half of the scientific gobbledegook when I read the book. In fact my basis for NOT wanting to try the diet was the notion that fruits and vegteables would kill me or at least re-hospitalize me. Oddly enough, when I finished reading the book and telling my husband what a maniac this person who wrote it must be, I got a phone call from my cousin. I told her about what I'd just read and she remembered about a friend of hers with Crohns who had just gone on a similar diet with major success. I called the woman and listened to what amounted to a miracle. THATS what made me try it and I promise you that what I experienced was nothing short of a miracle. It'll be 2 years on May 1st since I went on the diet. I no longer have diahrea, profuce bleeding, mucous, urgency or any of the other lovely symptoms associated with by Ulcerative Colitis. Last year, when I went for my yearly colonoscopy (my next one is 1/31), my doctor told me in amazement that my colon looked like that of a healthy 18 year olds (I'll be 50 next week). He also said that I seemed to be in some kind of remission, totally refusing to give any credence to the diet he knew I was on. I've taken myself off any and all medications for the last 6 months and I FEEL WONDERFUL!! Whatever you decide I wish you the best. Keep me posted. Elaine's fax # is 519-229-6969. Sincerely, Rachel
Maybe So >Return-Path: <scdadmin@mail.filmgraphics.com> >X-Sender: dajhnsn@intergate.sdcoe.k12.ca.us >Date: Thu, 2 Jan 1997 09:00:53 +0300 >To: scd@filmgraphics.com >From: dajhnsn@sdcoe.k12.ca.us (Johnson, Terri Ristau) > > >I believe in the results that I have seen on the net, but the science >teacher in me wonders if these people might have been heading for one of >their periodic remissions and the diet had little or nothing to do with >that anyway. Dave, Maybe so. The law of probablity and the bell shaped curve may be kicking in. Perhaps it is the plaecebo effect. Or it might be that the diet doesn't work for everyone (just as one medication doen't work for all of us). From a personal standpoint I have been on the diet almost 7 months and find the results very encouraging. I am convinced it is the right thing for me. However, it still could be only the plaecebo effict that I am noticing. In all honesty I do not care whatever it is that is making me feel better!!! I try to follow the diet very closely and it seems to work. To me it is the Specific Carbohydrate Diet and NOT the Selective Carbohydrate Diet. Elaine, has the magic formula as far as my CD is concerned. I doubted, I tried, and I now feel better. For this I feel very indebted to Elaine and her research. To your good health in '97 Mac/IN
Dave, >I believe in the results that I have seen on the net, but the science >teacher in me wonders if these people might have been heading for one of >their periodic remissions and the diet had little or nothing to do with >that anyway. I started the diet about a month ago, when my crohns simptoms where at their *worst*. Two days after stating the diet, I had no cramps and the diarrhea was disapearing. A week after, I had no cramps, no pain, no diarrhea, and I was feeling hungry for the first time after more than a year and a half! I'm currently feeling great, and have even started gaining some much needed weight (slowly, but its happening... :) I can't answer your questions as to what is happening inside the intestine with the microvilli, et all, but I can assure you that I was not going into remission when I started the diet. On the contrary, I was feeling as bad as I did three years ago when I ended up having to undergo a re-section. The funny thing is that I was very skeptical about the diet, and reluctant to get started on it. :) -Don
Dear Dave, I found your questions concerning the diet interesting. I have some suggestions although they may not necessarily be correct. >Elaine in her new book (pg. 26) talks about the damage to the microvilli, >leading to their destruction and loss of their digestive/absorptive fate in >carbohydrate metabolism. In turn the mucus producing goblet cells increase >in number and activity resulting in a hyper-production of mucus. She >states that this leads to a "naked intestine" and ulceration as seen in >ulcerative colitis. The problem is microvilli only are found in the small >intestine and as the name "colitis" implies my problem is downstream in the >large intestine/colon. From my understanding the pathogenic bacteria may proliferate in different areas of the intestine and not be through out the intestine. Hence you may get extensive small intestine damage but if the bacteria become lodged in the large intestine then this is where they do their damage. They feed on the remains of undigested foods producing toxins to the system that may cause ulceration. These kind of bacteria are particularly good at clinging to the intestine walls so that peristalsis doesn't wash them out but the downward action of the movement especially in diarrhea makes it difficult for them to spread up the intestine from the large intestine to the small intestine. >Also if the central idea behind the diet is to starve out the bad bacteria, >what about the normal and necessary "good" bacteria that make up part of >the healthy and required bacterial zoo that our intestines normally >maintain? Is the diet somehow that selective and only starves the bad >boys? My understanding here is that the normal bacterial flora feeds on foods that we don't normally digest such as cellulose. The pathogenic bacteria feed more on undigested starches and disaccharides which we may all have to some degree. This is further exacerbated when the small intestine isn't digesting or absorbing completely. I know these thoughts don't completely answer all your questions but I do find much of Elaine's theory biologically sound. Good health Amanda
Hi to Dave and Amanda and all: I'm still a bit of a lurker here, just starting the diet, and too new at it to have a lot to say. But one thing I thought in response to Dave's questions hasn't been mentioned, so I thought I'd throw in my two cents. Dave asked why the diet isn't harmful to the Good Guy bacteria as well as the Bad Guys. Amanda's answer about the non-pathogenic bacteria feeding off what we *normally* don't digest is accurate, but I think another large portion of the answer, possibly to be found in Elaine's diet, is the repopulation of the gut with the acidophilus found in the yoghurt. As I have milk allergies, I can't eat yoghurt, so I am taking acidophilous supplements with each meal. Interestingly, there are people on the Crohns-Colitis newsgroup who claim remission from symptoms just by taking acidophilous. With all the recent research finding bacterial links to IBD, I think it may happen eventually that Elaine's diet is proven to have a lot of validity, and I think the repopulation of the gut is a very important factor here. As for the fillers in meds, cellulose and starches are so cheap for manufacturers to use as fillers, I doubt you'd ever find many without them. I'm on pentasa, and even with the large number of caps I must take a day, I figure the amt of starch in there is miniscule compared to what I normally would have taken in if not on this diet! Hope we all have a healthy '97! Julie
Thu, 20 Feb 1997 18:23:08 GMT Hello everybody! I'm trying to figure out the net and learn about Crohn's disease (which my son has been diagnosed with) at the same time and it's overloaded my synapses, so forgive me if what I've been doing is lurking. Since I have several loose-leaf notebooks full of information, I guess that's what I've been doing. It looks like I've subscribed to this list, since I'm hearing from you guys, but I must've done it out-of-consciousness. I thought I'd just signed up on the IBD list digest. My son is undergoing the second round of invasive tests--he's an adult living in Sweden with his wife and son. I've sent him Elaine's book and he isn't convinced yet. If anybody started out very skeptical about the scientific basis for the diet and did a turnaround I'd be glad to hear what convinced you to give it a try. KD in Texas
Fri, 21 Feb 1997 16:13:09 GMT KD in Texas - I was (am) very skeptical about the diet. There are so many bogus cures/diets out there, I figured this was just another one. But after living with crohn's for 15 years and going through my 2nd surgery and my 4th doctor I thought I would give it a try. After all, there was nothing on the diet that would cause my any harm, right? So I tried the diet, gave it a half-hearted attempt, and convinced myself that it would not work for me. I talked with others who were having success with the diet. We had a small e-mail support group back then. (not this list) My crohn's got worse and I was feeling very discouraged. I decided to try the SC diet again, and joined this group for support. I figured out what I did wrong last time so I could avoid the same mistakes. I've been on the diet for about 6 months now, and I am seeing some improvement. I guess its hard to get behind a cure/diet until it works for you. But all I can tell your son is, the doctors will treat you with drugs until it gets so bad that they have to operate. And when they cut something out, you can never get it back. So try anything you can to avoid surgery, especially a simple diet that will do no harm at all. But if you try this diet, give it a fair chance of working by following it very carefully. This is a type of diet where you cannot cheat at all. If you cheat, it throws you back to the beginning. So give it 4-6 months, and see if it helps. Jim
Fri, 21 Feb 1997 19:31:24 GMT KD: I was extremely skeptical when I first read Elaine's book. I thought it was a total crock and then I saw her on a talk show and she seemed like a very guenine person who just wanted to help. Then I gave the diet a try, but I went on the introductory diet that she recommends in her book. It left me so tired and hungry that I didn't last. I then left a message on the internet about the diet and got so many positive responses about it, that I decided to give it a try again, but this time not use the introductory diet, although I did avoid high fibre foods. I guess the thing that made me give the diet a chance was the assurance from people who had tried it, as well as from Elaine in the book the if the diet is going to help you it will do so within a month. I figured that I could live with the diet for a month just to find out if it would help me. And when I started seeing results within 2 weeks, I was convinced to stick it out. Nothing gives you more incentive than becoming well. Hope everyone is doing well, Tina
SCD oversight ? Sat, 22 Feb 1997 4:13:51 GMT Hello Everybody. I'm wondering about the yogurt/dairy/honey, etc. reactions, in light of my own recent discovery of my (albeit unbelievable, yet true) diet oversights. This is a bit embarassing to admit. I've had great success with the scd for IBS, with regard to experiencing a reduction in rumblings from 24hours down to a few times a day. Alas, still no success in controlling the D, after 8 months on the diet. I was desparate enough to begin eliminating; first, honey, then most fruits, then yogurt and other dairy, then out of more desparation vegetables, and after reading some of the scd letters, I even gave up grape-juice jello. There was little left and I started losing a lot of weight. I had extreme ups and downs in the last month, feeling like a yo-yo, having energy one day, and exhausted the next, when I began to re-read Elaine's chapter on the beginning diet while still having D. - and realize to my utter amazement, that, despite my good intentions, I hadn't been following it exactly - from the beginning. What an oversight! Rachel, this might have been my problem that eventually developed with a reaction to yogurt. Roberta, I, too, began to suspect yogurt, feeling sick and realizing it was related to increased D. But I think/hope this was due to not following the diet to the "t" in the first place. (I was also eating modified nut-breads). After 4 days - strictly - on the diet, I am about ready to try yogurt again. The rest can wait, for my system to be ready. Did you all wait until the D. was completely gone before going on to the more general scd? I missed the part in the "Introduction to the Diet" where, while you still have D. you... 1. Omit eggs (info in her book which conflicts with the example for a typical day at the beginning) 2. Omit fruit (and when introduced must be cooked & peeled, which I wasn't doing). I also omitted the grape-juice jello, even though it is listed on the sample diet; i.e., in the chicken soup routine). 3. Omit vegetables 4. Omit honey 5. Omit salads (I had been carefully making my own dressing, not realizing I wasn't even supposed to have salad!) This little list was drawn out of text from four pages in Elaine's book. I think part of my oversight was due to the way the information was organized, i.e., spread out, and embedded in text. Another reason, was that my attention was naturally drawn to the emphasis on complete nutrition, due to my years of nutritional training and practice, which, along with Elaine's encouragement to make every effort to "round-out" the diet by eating sensibly, apparently loomed larger in the text, for me, than did the instructions to omit the above listed food in various places in the text. Would someone mention this to Elaine, please? I really think others might benefit from a re-arrangement, and focus on the initial constraints on the diet, too. Thoughts? I hope this helps. To Your Good health. To careful reading. Carolyn
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