Debate and concern about the Specific Carbohydrate Diet [3] On and off, off and on... Tue, 6 May 1997 19:39:01 GMT I am slowly coming to the conclusion that the SCD diet, which has given me my life back in many ways, controls the symptoms of UC, but won't cure me. Therefore, I am THINKING of staying on the diet, med-free for 11 months a year, then taking prednisone and asuphazaline for 1 month (or maybe only 2 weeks a year) and treating myself to daily doses of things like Pizza, Ice cream, Beer, Chocolate, bread, rice, pasta, cake, etc..... Does anyone else feel that they are never going to get fully better, and that a brief time off the diet, with the help of medication, for a short enough period so as not to screw up one's metabolism won't set them back? I base this on the fact that I've had mild relapses, and with the diet, they have sort of gone away (but never completely, except for the occasional day). I believe that I am being extremely strict in avoiding complex carbohydrates... Matthew Cirillo
Re: On and off, off and on... Wed, 7 May 1997 18:14:47 GMT I found your posting very interesting. My son (12) has been on the diet for about a year and has done extremely well and has been able to stop all medications except for cortenema. We recently had a doctor's appointment and did a couple of hemocult cards to check for microscopic blood in the stool. Both samples came back positive which led me to believe that though the diet has helped immensely I am beginning to question whether or not it could actually cure my son of Crohn's. We are fairly rigid with his diet although he has been caught cheating a few times . . after all, he is just a child and hasn't been able to always resist temptation at school when a classmate offered something that he really wanted to eat. Your suggestion of taking meds for short periods and enjoying a normal diet has crossed my mind in that I'm not so sure that my son will be willing to live under the diet restrictions for the remainder of his life. Of course, prednisone and it's problems aren't much of a choice either. One of our main problems (blessings!) is that my son has not suffered with his disease the way many of the members of this group have. He had severe nausea, terrible "D", blood loss, but no pain to speak of and all symptoms can be controlled with meds. When he does cheat on the diet, he doesn't experience any pain or discomfort but will have his stools loosen up and show visible blood loss. The frequency doesn't even always increase. Needless to say, this doesn't act as a great deterrant for not cheating on the diet. The threat of having to go back on prednisone and blow up like the Goodyear blimp and suffer the teasing of the kids at school seems to have more of an effect on him. Sorry for rattling on so but this subject has been on my mind ever since we got the results of the hemocult cards. Any other viewpoints would be appreciated. Barb/FL
Re: On and off, off and on... Wed, 7 May 1997 18:25:09 GMT I've received a few responses to this my posting, and have decided that it's a nice fantasy, but Id rather not run the risk of setting myself back 3 months, which could happen, with or without medication. I forgot just what it was like to be REALLY sick, or all puffed out on prednisone.... Thanks everyone for the support. I'm back on the wagon (well, I never actually stepped off...) Matthew Cirillo
Re: On and off, off and on... Wed, 7 May 1997 20:56:45 GMT Dear Barb, You say your son has been on the diet for about 1 year and has been able to stop all medications except for cortenema. That is truly wonderful, and like Elaine advises in her book, once the last symptom has gone a person should stay on the diet strictly for at least one year. I am sure at that time things would look much better for anyone having any type of test. We hope with Martine to do just that, wait one full year after her last symptom before even thinking about eating any food not allowed on the SCD. In fact I was just speaking with Elaine last night , she called to see how Martine was doing and although she is much improved she still has a way to go. But like Elaine says its slow progress and that is good enough for me. At least Martine has a life now which she did not this time last year. Martine was very ill to the point that her Dr. wanted to remove her colon. The diet has very much helped to settle her disease activity (and save her colon) and to put 25lbs back on, which was very much needed. Her blood work continues to improve monthly. We know its the diet because she has tried everything else with no results. I don't know how old your son is but I know it must be difficult at school. Martine is 19 , so sticking to the diet with fanatical adherence has never been a problem. I guess what I am trying to say is that I firmly believe that SCD will cure Crohn's or Ulcerative Colitis if followed as strickly as Elaine recommonds. The time period is different for everyone depending on how sick the person is. Hope this helps. Keep Positive! Regards, Barb Partridge
Fri, 9 May 1997 20:34:58 GMT Hi All, Just read the posting on remission and decided to put it my two cents worth. I started the diet in desperation at the beginning of January in the middle of a bad flare while I was on 40 mgs of prednisone. I was amazed at how well the diet worked and went flying off the meds as fast as I could. By the end of March I was completely off of prednisone for only the second time in ten years. Five weeks later I was sick as a dog again and this past week I've been back on 30 mgs. My guess is I didn't taper slowly enough and give my adrenal glands a chance to kick in. This, at least, is my hope. I am going to stick with the diet regardless. A friend of mine made an interesting point about this diet the other day and likened it to "dietary TPN". Think about it. Although we aren't giving our colons a complete rest we are simplifying the work they have to do to digest. Naturally this would ease symptoms. Will it cure? Who knows. Perhaps our diseases will just continue to remit and flare as they always have and the scd diet becomes one more tool in the battle to stay functional and well, to be utilised in conjunc- tion with medications. For some people perhaps it is a complete cure. My guess is it will vary depending on each individual, the severity of their disease, and their response to dietary manipulation or de- pendance on medication. I would like to take a moment to sincerely thank every single one of you for all of your incredible encouragement, input, and personal insights that you are so willing to share as well all try to find our road to health. I for one am singularly grateful to be a part of our group. Thanks And Good Health, Christina ALLAN
We aren't too bright Thu, 10 Jul 1997 23:24:23 GMT Did anyone notice on the last issue of Ibd list how Dr. Steve Holland said "the SCD diet people are not too bright". I wonder if any of you replied to that? I didn't, but I wanted to, so I hope someone else did. Anna Dr. Holland wrote: "Well, yes, a fine theory, but why a diet with the most allergenic protein mix known to mankind should work is beyound me. The SCD diet people are not too bright. If they thought about what the immune response in an allergic response is compared to what the response is in Crohn's, they might say something halfway smart. but there are no studies that even suggest that the scd diet is helpful. There are problems that respond to parts of the diet, but those are well known and are easier to tolerate than the scd diet."
Re: Relapse > From: SMacDonald <smacd@ISTAR.CA> > To: SCD@MAELSTROM.STJOHNS.EDU > Subject: Relapse > Date: Tuesday, July 01, 1997 4:21 PM > > I have ulcerative colitis and have been on the diet since April 26, 1997. > I did really well and was symptom free after less than one month. That > lasted for about two weeks. Now I've gone into a relapse which has lasted > about three weeks. It seems to be getting steadily worse but I can't > figure out why. I know the book talks about a relapse after two to three > months but how long is this relapse supposed to last? I'm on mesasol pills > and salofalk suppositories, has anyone else had success with these? > Thanks for any ideas. Sonya Hello, Regarding the replase: you may want to refine the diet. I found that I needed to eliminate foods that are "OK" according to Elaine's guidelines, but *not* OK according to my experience. Another book, "Eating Right for a Bad Gut" book by Scala is a more conventional review of what foods a UC/CD sufferer may want to avoid. Scala has done informal surveys of UC/CD patients to determine what foods consistently cause problems, and some of the findings coincide with my experience, thought they are allowed on the SCD. Personally, I have maintained the SCD guidelines, but I also cut out red meat, beets (including V8 juice), some fruits, all unpeeled vegetables. I especially want to stress the red meat: the last three times I have tried a steak or burger, I was on my back the next day with the usual symptoms. These "beef" episodes came during periods of relatively good health. I also want to make a plug for garlic capsules - I take two a day and on days when I run out or forget, I definitely feel worse. (Caution - garlic is supposedly upsetting to some people with our condition.) I think the diet continues to be factor in my current good health. But I'm convinced we all must seek additional parameters based on our experience. Best of luck! Bill
Is the diet working? Wed, 9 Jul 1997 19:57:33 GMT Dietmar, Just to let you know, I've been on the diet for over a year now and I also had bleeding for about the first 2 or 3 months on the diet even though I was following it 100%. It was the last symptom of mine to disappear but since my other symptoms were showing steady improvement and the bleeding finally started decreasing I stuck with the diet. So, the diet may be working for you after all, you might just need to give it some more time. Take care, Tina
Sat, 5 Jul 1997 1:18:56 GMT >Are the following forbidden on the diet? Elaine has said kidney beans are allowed. The rest of things you listed, I'm not positive about. >Why are garbanzos (chick peas) forbidden, but not white beans or lentils or >split peas? What's the principle here? We don't really know why in a lot of cases. One reason I have heard is that Elaine didn't have a chance to "test out" every single food known to man and she mainly went by what the Drs. Haas told her. After all, they apparently invented it, not her. She is no food scientist, and she didn't even have IBD herself. The amount of research and work done by her just to figure out those foods listed as allowable so far, was very extensive and labour intensive. I am greatful just for that alone. I think that basically, that is the reason. Maybe with more research, we could find out more foods we could possibly eat and more answers as to why. But who has time or resources for that kind of project? It seems the medical establishment couldn't care less about the purported anecdotal evidence that this diet helps us. I haven't seen anyone rushing to do any studies, controlled trials, etc. It seems all anyone wants to do is dis-prove it, rather than prove it unfortunately. >Why almond milk only after 6 months? I found myself asking WHY to a LOT of things in this book. Finally I gave up and just accepted it, because usually, nobody knows why. We can theorize, but then again, that's what this diet is all about. A theory. I think almond milk probably contains concentrated forms of carbohydrates and therefore maybe harder to digest. Just like you're not supposed to eat nuts at all until the diarreah is gone. Not everyone realizes the fact that this diet is a gradual process of introducing things. It's not an all or nothing type of thing. We are supposed to start out with limited foods that are easier to digest, and as we get better, add a few more things, like the nuts, beans, etc. Let's remember the name of this diet is "Specific" Carbohydrate Diet. It seems that it's not necessarily a carbo free diet or even merely a low carbo diet. For some reasons, mostly unknown at this time, certain carbohydrates are easier to digest for us than others. That's probably why some beans are yes and some are no. God only knows, as the saying goes. >Is there any way to communicate with Elaine directly to get authoritative >information about these kinds of details? I have heard that Elaine is actually very open to getting phone calls. From personal experience, I know she doesn't really like answering questions by fax because it takes too long to write it all out. She is happy to answer all your questions on the phone. I think her new number is 905-349-3443. After talking to some people, I've heard that she sometimes even phones to check on how they are doing later on. Good luck, Anna
Re: Why??? Sat, 5 Jul 1997 23:41:17 GMT At 06:06 PM 7/4/97 PST, you wrote: >Maybe with more research, we could find out more foods we could possibly eat >and more answers as to why. But who has time or resources for that kind of >project? It seems the medical establishment couldn't care less about the >purported anecdotal evidence that this diet helps us. I haven't seen anyone >rushing to do any studies, controlled trials, etc. There's no $$$ in it ... it's much more payback for the "medical industrial complex" to sell drugs, use knives & expensive equipment, and NEVER solve the problem. Stupid (for us), but true! Go figure ... that's how life works, eh? >It seems all anyone wants >to do is dis-prove it, rather than prove it unfortunately. > >>Why almond milk only after 6 months? > >I found myself asking WHY to a LOT of things in this book. Finally I gave up >and just accepted it, because usually, nobody knows why. We can theorize, but >then again, that's what this diet is all about. A theory. Right. At some point (like when you're miserably sick and have found no answers) and you hear about so many folks who've tried this and say it works, even if in some cases not 100% but better than anything else that's ever come down the pike, well, how about packing away your "Doubting Thomas why's?" into the attic trunk for a while and just go with the program, see how it works for you? The "constant why's" types, well, hey, get the hell out of your own way and get into gear ... brains don't help much in this case, eating by the plan does! We can discuss all the possible "why's" at a later date, first, let's get well. Does that make sense? >I think almond milk >probably contains concentrated forms of carbohydrates and therefore maybe >harder to digest. Just like you're not supposed to eat nuts at all until the >diarreah is gone. Not everyone realizes the fact that this diet is a gradual >process of introducing things. Yes, Elaine's book is a little weak in some aspects, like making that concept (of "gradual introduction") amply clear. But who ever said she OUGHT to be an outstanding writer? What counts at this stage is getting the concepts "out there" among us, the great unwashed. ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^ D. Hartl RMT Specialist in: Orthopaedic Assessment - Tactile Therapies - Pain Solutions White Rock, British Columbia Re: Why??? Tue, 8 Jul 1997 14:37:23 GMT Regarding what Dietmar said below, this kind of thinking disturbs me. It's too much like that of M.D.'s who prescribe their usual medicines but are not willing to consider the SCD diet or other alternatives. Our diet is not a sacred religion, nor is Elaine either a Goddess or infallible. Questioning and wanting more information on the diet's mechanism's and principles, especially when one follows it and gets great initial results but then deteriorates more so than the book says will happen, is normal and desirable. I'm convinced I'm doing much better on the diet than I would be otherwise. At the same time, I think we ought to be able to share our doubts and concerns. Changing topics, I too read Eating Right for your Type. The author says that as a person with type AB blood I should be able to eat dairy products, which I can. I was wondering if Denise and others who are not able to eat yoghurt are the type the author says should avoid dairy: type O. >> Right. At some point (like when you're miserably sick and have found >no answers) and you hear about so many folks who've tried this and say it >works, even if in some cases not 100% but better than anything else that's >ever come down the pike, well, how about packing away your "Doubting Thomas >why's?" into the attic trunk for a while and just go with the program, see >how it works for you? >The "constant why's" types, well, hey, get the hell out of your own way and >get into gear ... brains don't help much in this case, eating by the plan >does! >We can discuss all the possible "why's" at a later date, first, let's get >well. Does that make sense? The trouble is even though we strictly follow the diet, and don't eat certain foods until we're supposed to, not all of us continue to get well, so we want to know what changes might help, get a better understanding of the diet's principles. etc. Does *that* make sense? Tom Robinson
Re: Why??? Tue, 8 Jul 1997 19:35:15 GMT This is from Dietmar: true, you're right. It's just that, having been an "intellectual" most of my life, I find that people who "think too much" and are "head tripping" all the time forget to "get on with the job" ... they keep worrying / pondering / asking intellectual questions instead of having a life and getting out there and DOING stuff to get results, THEN examining and refining. They tend to put the cart before the horse: thinking / navel-gazing interminably and discussing tiny teeny semantics to minutae instead of just "getting with the program" and seeing what happens. So sure, nobody would make ANY progress and find any solutions to problems (such as ours, of IBD) if they didn't use their head, ask questions, and think things through, but there comes a point when you're better off to just put all that "wheel-spinning" on the shelf for a while and just get on with things ... THAT was my point. Dietmar >> Changing topics, I too read Eating Right for your Type. The author says that >> as a person with type AB blood I should be able to eat dairy products, which >> I can. I was wondering if Denise and others who are not able to eat yoghurt >> are the type the author says should avoid dairy: type O. >> I'm a type O, and I seem to be able to tolerate the Elaine-style yoghurt, but definitely NO other dairy products. And I already was intolerant to dairy products since about age 6 (diarrhoea, gas), so it's not "in my imagination". But her yoghurt seems to work quite fine, I've concluded (unless I'm deluding myself; but then, can one "delude oneself" so that major gas & the runs stay away?) Dietmar >> >> Right. At some point (like when you're miserably sick and have found >> >no answers) and you hear about so many folks who've tried this and say it >> >works, even if in some cases not 100% but better than anything else that's >> >ever come down the pike, well, how about packing away your "Doubting Thomas >> >why's?" into the attic trunk for a while and just go with the program, see >> >how it works for you? >> >> >The "constant why's" types, well, hey, get the hell out of your own way and >> >get into gear ... brains don't help much in this case, eating by the plan >> >does! >> Yep, I think I was a bit harsh in my choice of words. Sometimes, having hung around "intellectual" types so many years and seen through their "head games", I just get fed up with that rather un-productice, out-of-touch-with-living approach to life. You hit me on a bad day ;-) Dietmar
From: Ann Watts <awatts@ANDROMEDA.RUTGERS.EDU> Subject: thoughts on scd Dear People, Here are some thoughts driven into daylight by recent discussions of Dr. Holland, the SCD, who we are, etc. 1. Those who write in Dr. Holland's tone of voice are should probably not be answered: they are looking for a fight; they are ignorant of the object of their rage; they are operating in passion. A useful response to such people is silence (but I know that's no help to one's own rage, sparked by theirs!). 2. People who claim the SCD cannot work (e.g., Holland) because it advises all the usual "bad" foods (animal fat, fruits, vegetables), speak according to decades of mainstream medical wisdom. This "wisdom" is so established in American and Canadian culture, that ordinary folk "intuitively" suppose that if bowels are the trouble, then fat and fruit and vegetables must be avoided. "Easy to digest" foods, lke bread and rice, must be reached for. Many with IBD, who are not on the SCD diet, swear that it is precisely fats, fruit, and vegetables, , plus milk and eggs, that give them trouble. No doubt that is true. What is omitted, in a contxt of controversy with SCD, is that fats and fruits and vegetables will work nicely for many IBD sufferers, but *only* if the complete diet is followed. Fuits and vegetables are going to give trouble if consumed with breads and sugars. 3. Another claim against the SCD is that if total nutritional feeding (by tube) cannot work to cure, or even halt, IBD, then the SCD must be founded on false premises, leading to false promises. Again, the total picture is missing. For one thing, the SCD takes a very long time to show its strength. After a first major improvement, let's say in 3-4 weeks, progress is sometimes distrerssingly slow; reaching an even plane of really good health takes a minimum of two years for many--and even longer. This time-frame is often ignored by those hostile to the diet and given to making comparisons. Moreover, the tube-fed substances have in them I know not what substances (chemically speaking), but I'm willing to be they include some carbohydrates prohibited on the SCD diet. I have Crohn's Disease and have been on the diet for 8+ months. I had a major set-back at 3 months (my disease read Gottschall's book!), and many dips downward since then, but the general graph goes upward, without a doubt. Patience, ah patience! A. Watts
From: Rachel Turet <shodanrt@LIII.COM> Subject: Re: holland comments on ibdlist Dear Anna, I'm surprised you missed my own rather harsh critiscism of Dr. Holland, but I was having trouble getting through, so I'll repeat it for you. this from Mac >My only contact with Dr. Steve Holland has been on the IBD list and reading >his comments that were causing many IBD patients a lot of concern. >I felt that his answers were thorough, articulate, and professional. He >offered his opinion pro bono in a honest and non scarey form to IBD Digest >audience. > Dear Mac, Everyone is entitled to their opinion, and much of what you say about Doctors being in a highly litigious situation has merit, however Dr. Holland in his remarks does not simply dismiss the SCD as unscientific. He belittles and mocks those of us who have been reborn to health, as idiots. I for one am sick unto death of Doctors who think that their education places them on a godly pedestal with the right to treat us common folk as fools, unable to think or seek answers. I went to a new rhuematoligist this week, liked her a lot, but what impressed me most was her interest in my diet, her willingness to research it for the benefit of some of her patients and for her remark " As you well know, we doctors have no clue when it comes to treating IBD". How exquistitely refreshing. "He offered his opinion pro bono" Sorry, Mac, but what you might veiw as altruism in Dr. Holland's motive, I suspect is ego-fest. Meanwhile, I continue to seek answers from sources who want to help, to work with me and not make me to feel as though they consider themselves above me. Currently, my UC is and has been in remission for over 2 years, thanks to SCD. Unfortunately the other auto-immune diseases that I have, which are linked to this, spondylitis and fibromyalgia are not so easy to conquer. I search desperatly for an "Elaine" to throw me a lifeline in these pools of despair in my life. Love, Rachel
From: witkowski <witkowskis@WORLDNET.ATT.NET> Subject: Re: holland comments on ibdlist Dear All, On this Dr. Holland issue , I to would like to read the entire contents of his post. But I have no doubt he was rude , Funny thing is I expect this kind of attitude more from the medical society than the general population that is suffering from illness. But I have come to understand that some people have put all their faith lock stock and barrel in a magic pill. The diet certainly takes more self discipline than popping a pill. When one has invested years in steroids and other drugs it is hard to admit to oneself that it was not the best course of treatment after all, if a simple diet change could have helped them it makes them feel pretty dumb for ingesting all those drugs. Personally when I mentioned the name of the diet to my Rhumie he wanted to hear nothing about it. But on my last visit even he had to admit when I referred to Scd only as a special diet for people with CD, UC, Celiac etc. that is sure did seem to be working for me. And that I would be best to stick with it. Of course he takes no part in recommending it or wanting to even look at the book. You know what they say old habits die hard. I think we need to look at it as a mission to reach one person at a time and someday there will be enough of us that they will no longer be able to ignore us. Here is a little secret that helps me. Pray for them , turn the other cheek, and rest in the knowledge that you are finding your way to good health. Think of all the people that have not even heard of the Scd diet or any of the others that help so many. Make it your own little mission to help one person a year. Buy an extra copy of Elaine 's book and share it with another sufferer. Take Care, Kay
From: ACB <benkea@MAILHOST.PAC.DFO.CA> Subject: holland comments on ibdlist I have received a few posts from people who think I was wrong to say what I did on the IBDlist towards Holland. I know that I should have ignored him, but I have been doing that for at least a year now, and him calling us "not too bright" and saying that maybe if we knew anything we would say something "halfway smart", was the last straw for me. He has been monopolizing that list with his slanted input far too long, to the detriment of people who might have at least tried the diet if it weren't for him. As a physician, I think he is completely unprofessional. I have no respect for a doctor who makes unwelcome, insulting remarks like that on a public forum. I know my so called "flame" won't do the SCD or the IBDlist any good. But I don't think I'm the only one who has had just about enough of that doctor on his high horse. I have been criticized for wording the response "so harshly". Tom even predicted what would happen after those comments he made. I'm surprised I was the only one who replied to Holland's posts. I wonder what it would take to get others upset by him. Instead of not too bright, what if he called us stupid or idiots or lunatics? To me, he may as well have said all of these, because the tone of his postings regarding the SCD have always expressed a shallow and insulting point of view. I felt his so called "apology" was very insincere. I admit I should not have stooped to his level of insulting, however I still have no regrets, except for the hope that I haven't impacted on the reputation of the whole SCD community. If anyone thinks I have made us all look bad instead of just myself, I am willing to write a retraction to the IBDlist with the disclaimer that my views in no way reflect what the rest of the SCDers think. Anna
Date: Sun, 20 Jul 1997 15:07:11 -0400 From: Don Wiss <donwiss @ panix . com> Subject: Re: anti-endomysium antibodies Odd Oivind Bergstad <oddb@STOVNER.VGS.NO> wrote: >I thought that Elaine had done her homework before putting her >words into her book. Actually I think she's just dated. She uses a 1951 study to back up her cured statement. Gluten being the cause of celiac disease was announced to the world in 1950, though the Dutchman that discovered this initially observed the connection during WW II. For a period of time it was thought that one outgrew it, as visible symptoms disappeared in children after being on a GF diet for a while. But later the intestinal biopsy was developed, and they learned that even with no obvious symptoms there still is damaged mucosa. Usually when the person reaches middle ages the visible symptoms return, but often aren't connected with the childhood disease that they overcame when an infant. >I seem >to remember that Elaine also states that all gluten must be avoided... Oh, she does say this. But it is so hidden in modern foods that more then her book is needed to learn all of the sources. For example (this is me pulling out the book and checking....) - rice syrup often uses barley enzymes to break down the starch to a sugar (though she would be presuming that all rice syrup is out). - blue cheese traditionally used bread for the mild to grow on, and this is one of the cheeses she allows. - I see no mention of hydrolyzed proteins (HVP) which often comes from gluten. - I see no warning against the ingredients "flavorings" or "natural flavors." These most often are euphemisms for HVP. This can appear in nuts, usually ones that are dry roasted and/or sold in a glass jar, and many other things which she disallows for other reasons. - it is legal to not disclose ingredients of ingredients, so if tomato paste is listed as an ingredient, then it often has HVP hidden in it. - she allows tomato juice. This can have HVP hidden in it. - while she warns of starches in vitamins, she fails to mention that gluten is sometimes found in prescription drugs. - she does not warn that spelt and kamut are really wheat (though spelt is eliminated for being a grain, she makes no mention of kamut, nor does she mention that faro is another name for spelt). - she doesn't warn that candies can have wheat starch used on the conveyor belts to prevent sticking and not be so labeled (though candies would be out for their sugar). - she permits white vinegar. This is controversial in the celiac community as it can be distilled from wheat. - she permits hard liquors made from wheat. This is controversial in the celiac community. - and more if I though about it longer. On the subject of "cures". She also claims that the IBDs can be cured. Do you know anybody that after being on the SCD for a while was able to go back to a normal diet and eat bread and pasta with no repercussions? What I see is it is successful in controlling the problem, but like in celiac disease the diet must be maintained for life. Don.
Date: Sun, 20 Jul 1997 20:31:09 GMT From: Rachel Turet <shodanrt@LIII.COM> Subject: Re: anti-endomysium antibodies Dear Don, It is obvious that you've done your homework, however this problem you seem to have with the word "cure" seems to me like quibbling over symantics. My doctor tells me that quite contrarily to previous colonoscopies, these last 2 show my colon to look like that of a healthy 18 year olds, biopsies & all. I've been on the scd for over 2 years and am symptom free. Do I consider myself cured? You bet your ass I do (pun intended). Would I test this by eating as before? NO, I wouldn't. Something in my gut tells me that anything beyond a minute amount of starch or sugar would bring me down. If an alcohlic doesn't drink for 20 years, is he "cured?. By some standards I guess not, however I beleive that unless he takes another drink he is cured. His symptons would probably return if he began drinking, as mine might if I were to eat as before, but if he remained sober and if I stayed on the diet, (seeing as my cup is always half full as opposed to half empty), I'd consider us both blissfully CURED. Dr. Holland... >Too bad the IBD list isn't one of my lists. I'd just bounce him off. :) >(Maybe the listowner would like to move it to St. Johns?) Tsk tsk tsk. I'm glad you don't have the power Don. I'd hate to think that you could shut disconnect me for not sharing your views. We've all got our place on this list, Don, including you. Rachel
Date: Sat, 2 Aug 1997 01:44:20 -0400 From: Don Wiss <donwiss @ panix . com> Subject: Re: This IS the exclusive list for SCD Don Wiss wrote: >>Doesn't she admit that the SCD isn't for everybody? mik aidt <mik@INFORM-BBS.DK> wrote: >A friend of mine found that SCD didn't work for him. So he called Elaine who >told him something like that "if the diet doesn't work within the first >three-four weeks, then it is probably because you belong the those app. 25 >percent to whom the diet does NOT work." > Well I believe that food is the cause of all IBDs. So I would want to work with those 25% and find out what can be modified in the diet to allow them to use diet for control. My suggestion would be to follow the guidelines in "Crohn's Disease: Maintenance of Remission By Diet," Alun, Jones, ... et al, Lancet. Volume V.II, 1985. Pages 177-180. In the study they started them on spring water and an elemental diet, then added foods one by one to see what bugged them. It did not work for 16.7%. So that would imply that there are 8% that can use a diet other than the SCD to control their Crohn's. And since they tried the SCD we already know they are motivated to try for a diet control. Don.
Date: Mon, 4 Aug 1997 18:26:53 -0400 From: John Chalmers <johnc@SERV2.FWI.COM> Subject: Re: 25% failure rate Mazer, C. & Blank, J. wrote: > > Mik wrote: > > <<A friend of mine found that SCD didn't work for him. So he called Elaine who > told him something like that "if the diet doesn't work within the first > three-four weeks, then it is probably because you belong the those app. 25 > percent to whom the diet does NOT work.">> > > If this 25% figure can be verified, this is real news, and the medical community > could perhaps hear it. It would mean the SCD diet works better than 6-mp, which > the M.D.s are more than willing to prescribe. It only has a 70% success rate. > > Is there any way, do you think, of showing this figure to be objective? > > John Blank John I am not sure where to look, but there are some figures for the effectiveness of some of the medications. I think that prednisone is effective in about 40% of cases after 2 years. I beleive that the effectiveness may be rather high in the short run (~80%) but that figure deteriorates over time. We had a member of our support group that found 6 mp to be effective for about 2 years and then it was totally ineffective. I think the SCD has the possiblity to be a long term solution. John
Date: Sun, 10 Aug 1997 12:02:58 -0700 From: "Rosset" <plrosset@pacificrim.net> To: <SCD-list@longisland.com> Subject: Tweaking Dear fellow SCDers, Lately, there has been a lot of talk about tweaking the diet. Here are a a few of my thoughts on the subject of "tweaking." From day one, we are all tweaking the diet. Am I ready for beans yet, what quantity? Am I reacting to yogurt, or did I not make it right? Do I have a problem with milk protein? Did coconut make me gassy because I'm reacting to it, or did I just eat too much? Is my coffee too strong? Am I overdoing it on fruit, or desserts, or something else? Am I rounding out the diet enough? The list could go on and on. Believe me, I know how discouraging it is to have a setback. I had a long stretch of bloating during my second year, when I wasn't doing as well as I had during my first. I thought many times that maybe the diet wasn't working anymore, but I couldn't quit because I did appreciate having normal bowe control again. Eventually the bloating past. My experience is that with time the setbacks happen a lot less frequently, and don't last long. We all progress at our own pace, so just because you're not recovering as quickly as the next guy, doesn't necessarily mean that the diet isn't working as well for you. I just hope that most of the tweaking being discussed doesn't involve including foods that aren't allowed on the SCD. Lucy
Date: Sun, 10 Aug 1997 17:01:45 -0600 From: Partridge <raparch@planet.eon.net> To: SCD-list@longisland.com Subject: Re: Tweaking In talking with Elaine once she discussed that everybody with IBD while having some symptoms the same are often very different, some bleed but but have no anemia, others don't bleed but do have it. Some, with IBD may suffer wieght loss while others don't. The onset and severity result in differing effects. Hence, the recovery through the SCD cannot, for the same reasons be the same. All will respond differently and depending on the severity it is all down to being just a matter of time as to when a person will recover. For some this could be days, weeks, months or years. However, we have believed that if you see some progress, regardless of size, this is the impetus enough to keep going. This diet cannot be "cheated" like other diets without some impunity. While some wieght reduction diets can tolerate "cheating" the SCD cannot. This diet works at a molecular level in the intestinal system to correct and reverse the "viscous cycle" of damage/mucus/malabsorbtion/malnutrition. One mouthful of a non SCD food could set a person back months as the whole intestinal balance is disruppted once again. The best illustration I can think of is the game of balancing a teeter/totter, it take a small step to upset the balance. The SCD provides this balance. Many tweak the diet to suit their needs, some cannot tolerate some foods easily, it is a progressive approach to be taken on introducing the foods. Our daughter still cannot handle uncooked fruit, but can now handle cooked fruit. We are all different. Tweaking is just getting the rythm of your body with the diet. We have appreciated all the adjustments some have made, some worked but others didn't. What is important, as Lucy Rossett mentioned is not to introduce foods that are not allowed - this is not tweaking the diet it is simply choosing not to follw it. We have found that this diet will work given time. if it did not work then why has it been around so long and has the testimony of thousands. To all, follow what Elaine mentions - "Fanatical adherence" - this is the way to recovery. regards Partridge ALLAN
Date: Mon, 12 Jan 1998 13:57:15 -0800 (PST) From: Carol Mazer/John Blank <carojohn@teleport.com> To: SCD-list@longisland.com Subject: quitting the diet Hello all, I'm sorry to report that I've felt I had to quit the diet, and did so last November, after having been on it, no cheating, for 4 months. When I began the diet in July, I improved, and I was able to reduce my prednisone from 20 mg to 15 mg. Then I began to flare: my symptoms got worse (increased stool frequency, increased blood and mucus); I thought it was that initial one-month (or so) flare and went back on the restricted version of the diet. My symptoms continued to worsen, and I felt I had to increase my pred to 20 mg. I saw no improvement by the end of November, in spite of following the diet to the letter, including a couple of more times of the restricted version (which never really cleared things up like it had initially). I spoke to Elaine. She told me plainly that if the diet was working, I was supposed to see gradual and steady improvement, after the 1-month flare. Although she thought there was no harm in the diet, and wanted me to stay on it for general health principles, it seemed that she could not tell me the diet was working. Others in the on-line IBD community have had a similar experience -- that after initially improving on the diet, they then got worse, and stayed worse in spite of continuing on the diet. (This contradicts the claims made about the diet -- that if it works initially, it should continue to work, possibly after an initial flare at around one month). I had to conclude that I too was in that boat. If, after a reasonable period, a proposed remedy fails to let me reduce my prednisone level, as far as I'm concerned the remedy isn't effective. My goal is to get off prednisone and remain in remission, hopefully for a long time -- if a remedy isn't getting me there, it's not working. Bottom line. In addition, my cholesterol went from 183 to 233 during the time I was on the diet. Without entering the debate about what really are protective factors for coronary artery disease, I will just say that I regard high cholesterol, at least for me, as a significant risk factor, and as highly desirable to change. For me the diet has been like many other things I've tried: it worked for a little while but then it petered out. That doesn't mean I think it's a bad thing. I think it's basically good, and that low cholesterol versions could be worked out. In fact, I recommend it to my patients and acquaintances who have IBD (as it happens, I'm an acupuncturist, that's how I come to have "patients"). I would never recommend that anyone for whom it was working should change their eating patterns in the slightest. I'm in favor of studies of the SCD, and I appreciate the difficulty of Elaine's position as a pariah in the world of allopathic, and to a certain extent naturopathic, medicine. I think a real understanding of the diet would explain why it exhibited these different patterns (on some, it helps within 2-3 weeks and continues to help, with some bumbs; on a second group, it helps at first and then stops; with a third, it never seems to help at all), but I don't think proponents of the diet have such an understanding. I'm no biologist, but as an IBD sufferer I have tried to read as intelligently and deeply as I could on the causes and various treatments for IBD, and I have to conclude that, from my experience and from what I've read, Elaine's theory -- as a theory -- just doesn't seem to hold water. As a practical aid, I put it in the same boat with other remedies I've tried, such as aloe vera (yes, I've been through the aloe wars with Mannatech Inc), various naturopathic remedies, supplements and substitutes, and diets, and not to mention acupuncture and Chinese herbs: they all have something to recommend them, and are worth trying as long as they do no harm, and sometimes they work. I'll probably try the diet again, if the meds I'm taking now don't work. At this time, though, I seem to be doing pretty well. I've gone on 6-mp and am up to my maximum dose (150 mg/day), and have been able to reduce my prednisone from 20 to 12.5 mg. So far my blood work looks good, and I haven't developed pancreatitis. I've been enjoying bread, pasta, and the occasional beer, though I admit my carbs remain lower than previously -- I think there is something to lower-carb ways of eating, at least for me. So -- so far, so good. But I'm not out of the woods, as IBD-ers know. It's not the first time I've been able to reduce my pred -- last time I got down to 5 mg before flaring again -- and so if I'm optimistic it can only be cautiously. As far as this list goes, I've been on it since last May or so, I have some pet peeves which I'll leave to another posting, but on balance, I'm very glad you're all out there contributing your energy to the list (though not very glad, of course, that any of you are sick!). I feel very fortunate to have been able to connect with this part of the IBD on-line community (and with the rest of it as well). So, let me close now with a heartfelt Thank you! I'll probably lurk around on the list for awhile before getting around to unsubscribing, but if you want to contact me I'll probably respond quicker to a private e-mail than to a posting to the list. Again, thanks. John Blank
carojohn@teleport.com
Date: Wed, 14 Jan 1998 10:07:26 -0700 From: Pat Sullivan <psullivan@saleslogix.com> To: SCD-list@longisland.com Subject: Is SCD enough? I have been on SCD about 4 months. I had good results on it for about 2 and 1/2 months and then seemed to hit a wall where I was not progressing. In fact, I was relapsing! In my frustration I went to a holistic doc who diagnosed me with having a severe candida infection. I went on anti-fungal medications of both pharmaceautical and natural varieties. I was delighted that over the past 45 days I have done very well. During this time I have remained on the SCD diet. After a short period of "die-off" upon starting the meds, I experienced a fairly rapid return to health. I credit both SCD and the meds for this. My question is this. Elaine in her book clearly recognizes that overgrowth of candida and other bacteria are one of the key elements of the "vicious cycle". She clearly states that medications to control inflammation and other symptoms is fine. Why would a combination of SCD and anti-fungal medications not be worth a try in dealing with this vicious cycle. Even Elaine has said that SCD only works for about 80% of the people and even then it takes 1-2 years of fanatical adherence to the diet. Is it possible that the other 20% would benefit from a combination? Is it possible that many who get better in 1-2 years could get better in perhaps a few to several months instead? I guess I don't understand why it is OK to take what many consider to be very nasty drugs to control the symptoms of IBD, but it is not OK, or even recommended to take relatively low toxic drugs (or at the very least, natural antifungals like garlic, caprylic or undeclynic acids etc) to help the body to restore the balance of the gut flora? There is no question in my mind that the combination worked much better for me than the diet alone. Perhaps it would for others as well. For your consideration...
Pat
Date: Wed, 14 Jan 98 13:10:03 CST hi glad you are feeling better !!! Pat,it sounds like your holistic doctor treated you the way Dr. Atkins describes in his book "Dr. Atkins Health Revolution" published in 1990. he seems to treat IBD patients for either insufficient digestion due to insufficient HCL due to possible insufficiency of one or more nutrients, or he prescribes something to kill candida. in all cases he puts you on either a low refined carb diet or an all-out low carb diet (like Lutz) and then refers you to his accupucturist for a series of treatments. (i have summarized Atkins' treatment for IBD and am sure to have left out some details) does your holistic doctor use grapefruit seed extract in any of the natural anti-fungals that he prescribed ? this is supposed to be an good anti-protozoa/virual/bacterial/fungal and is allegedly very safe and will not kill your good bacteria. ted
Date: Wed, 14 Jan 1998 15:02:28 EST Pat, We are finding the same to be true as far as taking natural remedies to help the healing process. I totally disagree with people that think it is okay to take the synthetic drugs along with the diet, though. The reason is that I believe that those drugs actually cause the condition to worsen over time and they affect the blood and the way that it is able to process proteins and carbs. A big cheer goes out to those that are finding ways to combat this illness in natural ways, be it diet, enzymes, garlic or whatever. We know that the synthetics are harmful, so my husband stays away from them now. Thank God that there are doctors out there that are going the natural way and not killing us with drugs! Val
Date: Wed, 14 Jan 1998 13:00:05 -0700 Yes, there are strong similarities between Atkins and SCD. I was actually using Grapefruit seed extract along with SCD when I got stuck. The doctor put me on a combination of Nizoril (200 mg per day) and 200 mg of Difulcan once every 4 days. I also took Mycopryl from T.E Neesby and SF722 from Thorne which is undeclynic (sp?) acid which is similar to capryllic acid but more effective. He also highly recommends both HCL and other digestive aids. pat
Date: Wed, 14 Jan 1998 14:49:16 -0700 Val, Thank you for you response but I do have a question for you and some additional thought to add to this discussion. First, do you have any documentation to support your statement, "those drugs actually cause the condition to worsen over time and they affect the blood and the way that it is able to process proteins and carbs" I am not aware of any study done on this. I would love to have anything you can provide to me that supports this. I am aware that the people selling the natural stuff make claims that the "synthetic" drugs are bad but they don't offer anything to support their "potentially" extremely biased statements. Facts are that I am aware of numerous people who have had very good experience dealing with Candida with the anti-fungal drugs. I also happen to know numerous people who have not been able to get rid of Candida by using just the natural stuff. I am also aware of some who have been able to deal with it simply with natural stuff so it seems you have to use whatever tool is needed to do the job!! Everyone is biologically unique! One approach does not seem to work for all people!! However, I have come to believe very strongly that there is another possible sinister element at play in many, many cases of IBD, IBS, Candida infections etc. that many people are simply not aware of as yet, though the many scientific studies that are being done are beginning to point at it. I am speaking of mercury poisioning from Silver/Mercury Amalgams. I have done much reading on this topic over the past few months and have found that it may well be the real cause of much suffering that people go from doctor to doctor trying to solve. I did a survey a few months back on this list where we determined that 100% of the people responded positive to the question "Do you have Silver/Mercury Amalgams in your mouth or have you had them?" Since only 60 to 70% of the population has them this is statistically very interesting. In a study done in Germany on 20,000 people with Amalgams there was a very high statistical correlation to GI problems, periodontal and neurological problems. In my case I have been searching not only to determine how to get rid of candida, but why I got it in the first place. A couple of tests showed me having a very high amount of mercury in my body. Mercury is a very strong immune suppresant. One can kill candida all day long and then it recurs because the body cannot keep it in check. I am dealing with killing the candida as well as helping my body get rid of the mercury that I have accumulated from my fillings and from eating of mercury laden fish! I suggest this because if it is indeed an indirect causative agent for IBD etc. then until it is dealt with you are really only dealing with symptoms and not the cause. NOTICE I said IF!! I am simply suggesting that there is a tremendous amount of data from extremely well done studies that is pointing directly at Mercury poisoning as one major cause of IBD like diseases. Candida is simply an opportunistic organism taking advantage of a suppressed immune system. Interestingly, even Elaine in her book when describing the vicious cycle says she does not know where or how the cycle begins only that it does somehow begin. Could it be mercury, the most toxic metal known, somehow starts this process?? I don't know for sure, but studying 20,000 people and finding a very high correlation to GI problems is sure worth pursuing especially if 100% (at least the ones who responded to the survey done here) of the people on this list have mercury amalgams. That is an astounding statistic. I have info I can send to you via email but the doc is about 82k
and somepeoples email may not be able to handle it and I don't want to
burn the list server up sending it to everyone so if interested, ask and
I'll send it to your email direct.
Trying to help...
Pat
Date: Sat, 10 Jan 98 16:16:23 CST very interesting, and it's "from" the CDC web site, look
here also if you have any of the
various forms of arthritis. i think elains diet or the Lutz diet could
work simply by
avoiding carbohydrate rich meals (which will blunt your immune system
for about 2 hours)
we strengthen our immune system and thus fight off the bacteria, this
could also explain
the 2-4 month flare that accompanies the diet, your immune system is
stronger so the
inflammation gets worse, until you get over the hump with the infection.
Lutz noted
this type response in his book and sometimes used gold to depress the
immune system
somewhat until things got better.
From: Bill Miller <miller@BEDFORD.NET> Subject: Re: Looking for Journal Article on SCD If I can offer a suggestion: The best research you're going to do in the scd is to try it. If you have IBD (IBS? what's the difference anyway?) you're definitely not going to find a cure from research. Research hasn't turned up anything that works 100% of the time. Personally, I think the diet is helpful in reducing my symptoms. But the same can be said of the diet I'm doing right now, which is basically bannanas, rice, applesauce and tea (B.R.A.T. its usually referred to, but in the hospitial they'll say toast), but with added meat, eggs and cheese. 1 1/2 years ago, I had absolute overnight results with the scd. Now it doesn't seem to do anything. You'll never know to you try, and other than the extra time involved in meal prep, it don't think it will do you any harm. The biggest plus about the diet is that it is basically a very structured elimination diet. I've had so many health people say: "Go on an elimination diet" and have very vague instructions. The scd gives very specific instructions and was quite easy to follow for me. Now when someone says, "Don't eat anything the aggrevates your symptoms," I have a much better understanding of what my problems foods are, and how to figure out if a food is causing trouble. Bill
Date: Mon, 13 Jul 1998 03:21:38 -0400 From: Midas Gold <midasgold@PIPELINE.COM> Subject: Re: Looking for Journal Article on SCD Bill Miller wrote: > The best research you're going to do in the scd is to try it. If > you have IBD (IBS? what's the difference anyway?) To be specific, I've just recently been diagnosed with mild Crohn's. > you're definitely not going to find a cure from research. Research > hasn't turned up anything that works 100% of the time. Good point! I'm about ready to jump right in, but I have very specific reasons for doing a bit of research first: 1) I want to ascertain the diet's relative safety for pregnancy in case I get pregnant while following it (no plans to do so, but it is a reasonable possibility). 2) I have specific concerns regarding a possible conflict between the diet and my religious observance, so I want to be prepared to explain the diet and its benefits to my spiritual advisor in order for him to make a fully-informed determination of whether I'd be exempt from the religious requirement for the sake of the diet's potential benefit to my health. ...So that's why I'm working a bit at getting all my ducks in order before I take the plunge. > The biggest plus about the diet is that it is basically a very > structured elimination diet. I've had so many health people say: > "Go on an elimination diet" and have very vague instructions. The > scd gives very specific instructions and was quite easy to follow > for me. Now when someone says, "Don't eat anything the aggrevates > your symptoms," I have a much better understanding of what my > problems foods are, and how to figure out if a food is causing > trouble. ...Another excellent point. Thanks for your response. -- Deanna
Date: Mon, 27 Jul 1998 18:40:36 -0500 From: hugh odonnell <odonnell@pps.pgh.pa.us> To: SCD-list@longisland.com Subject: Re: depression Hello I'm new to the SCD list but a long time low carb technical discussion list participant. I thought I might share the recent response I made to the LCTD list as it relates also to SCD. I have a web site devoted to low carb diets and insulin resistance at http://commodore.perry.pps.pgh.pa.us/~odonnell/ir1.html I have amended the site recently to describe SCD and Nature's Biotics. Regards Hugh >X-Sender: odonnell@commodore.perry.pps.pgh.pa.us >Mime-Version: 1.0 >Date: Mon, 27 Jul 1998 18:38:14 -0500 >To: Low-Carbohydrate Technical Discussion <LOWCARB@MAELSTROM.STJOHNS.EDU> >From: hugh odonnell <odonnell@pps.pgh.pa.us> >Subject: low carb and psychiatric > >Re: numerous recent posts suggesting link between low carb diet and >psychiatric symptom relief. > >I also have personal experience with low carb diet and improvement in >depression/mental confusion/fatique symptoms. For 15 years I controlled my >depression with a low carb diet ( less than 20 grams per day; no sugars of >any type and no grains). I also suffered from insipient alcoholism and >"sweet tooth" binge eating as many of you have described on numerous >occassions. > >5 years ago I started taking zoloft/prozac with good results but needed to >do both low carb and SSRI medication to completely control both the >depression, fatique and binge eating/drinking. > >Recently ( 3 months ) I started taking Nature's Biotics (probiotic) and >noticed complete removal of depression and fatique even after prolonged >abuse of carbohydrates ( all types including sugar and wheat). I have now >cut the prozac from 20mg to 10mg per day with success. I also recently ( 4 >months ) started taking 2000 mg of metformin for very early type 2 diabetes >blood glucose levels. I now seem to be able to eat 40-50 grams of carbs ( >no sugar and no grains ) per day without fatique, without depression and >without elevated blood glucose levels. I plan to cut the prozac completely >next month. > >My nineteen year old son suffered from panic anxiety for two years. He is >now on a low carb diet ( 50 grams/ day ; no sugars, no wheat ) for 2 years >without any panic anxiety attacks. > >I believe there is a strong connection between low carb diet and relief >from depression/anxiety. > >I used to think the brain dysfunction connection was serotonin related. > >However I now think Elaine Gottschall's book "Breaking the Viscious Cycle" >may also describe a viable explanation. The theory described in her book >suggests the brain dysfuctions stem from toxins produced in the intestines >when fungus/bacteria growth explodes with carbohydrate ingestion. If I'm >able to completely cut my prozac with the addition of Nature's Biotics as >now seems to be possible, then I will vote for the "bad bacteria" low carb >theory rather than serotonin related theory. > >Hugh
From: <CTFUTURES@aol.com> To: SCD-list@longisland.com Subject: Re: depression/off subject Hugh, This information is exciting. Since introducing you to Nature's Biotics many others from this list have requested the Dr. Reese audio tapes for a professional explanation of how it works. Your testimonial proves that what I have been writing all along is true in that the probiotic does set up an invironment in which negative microorganisms cannot exist when used in conjunction with the SCD. I have been on the diet fanatically for over 1 year and counting. At age 21 I lost eighteen inches of my small intestine to Crohns. My goal is to once again experience vibrant health and I do believe I am on my way. To respect those who wish to adhere to the SCD subject please feel free to email me off line with any additional questions. Carl W. Tuttle
Date: Sun, 02 Aug 1998 13:09:12 PDT Date: Mon, 10 Aug 1998 12:02:58 -0400 From: Midas Gold <midasgold@pipeline.com> To: SCD-list@longisland.com, SCD@MAELSTROM.STJOHNS.EDU Subject: A Gut Feeling For anyone who's interested, here is an IBD/gut bacteria thesis that draws stikingly different dietary conclusions than does Elaine Gottschall in _Breaking the Vicious Cycle_. http://www.newscientist.com:80/ns/980808/features.html (Also placed here at this website) -- Deanna
Date: Mon, 10 Aug 1998 15:28:56 -0400 From: paulasirois@juno.com (Paula Sirois) To: SCD-list@longisland.com Subject: conflicting guidance Given the results of the study that Deanna so kindly shared, I would like to reiterate my perspective that the highest authority when it comes to dietary intake is our own innate wisdom. Some people have a problem with that, I know, and to you, I offer my best wishes for your success as you sort through the mire of nutritional information that floods the media. For those who resonate with my view, I would say that it is important with Elaine's diet, to find a balance of various foods...not to rely too heavily on red meats and nuts, without an adequate balance of fish, poultry, vegetables and fruits. There is always going to be someone, somewhere, who is doing a study that will prove or disprove, support or contradict a body of evidence. The key is to trust that every day as we pay attention to our body's responses to the foods we eat, that our body will signal us as to what works or doesn't work for us as individuals. Otherwise, it is a sad mess, that only leads to confusion and more confusion. Definitely, my son's gastroenterologist would have cited many studies that tell me why Elaine's diet wouldn't be able to help my son. So much for the strength of those studies. In my experience, regarding my son, the SPECIFIC CARBOHYDRATE DIET WORKS!!!!!!!! I will not now go searching for something else. What I see is that my son's body is getting a welcome reprieve from a horrible disease.... In time, and daily, we do and shall continue to adjust his diet, to respond to his body's changing needs. But certainly, I will not walk away from something that so effectively alleviates my son's discomfort. I wanted to offer this message because I know how vulnerable we all are...and how easily we tend to second guess ourselves, and make ourselves and our choices wrong. Please, to those of you just getting started, give this diet a chance to work, and your body a chance to heal. With great love, Paula
Date: Mon, 10 Aug 1998 22:25:23 EDT From: <CTFUTURES@aol.com> To: SCD-list@longisland.com Subject: Re: A Gut Feeling Deanna, On Aug 10th you wrote: >"A Gut Feeling > >"If you thought junk food would merely make you fat, think again. You >could also be fattening a hungry mass of alien gut bacteria that may >repay you with bowel disease or even cancer. Reply: For those who havn't read my posts I have put together a web page highlighting my experiences with gut bacteria and how I was disabled by them. Please feel free to access: http://members.aol.com/ctfutures/CFS-secondchance-index.html We are supposed to have two to three pounds of beneficial bacteria in our gut. Two to three pounds of anything in our body will have a profound effect on our health especially if it is one hundred and eighty degrees out of sync. Beneficial bacteria are responsible for synthesizing vitamins and minerals. Vitamin B12 in fact is a by-product of their metabolism. Carl Tuttle
Date: Mon, 10 Aug 1998 22:35:19 -0400 From: Midas Gold <midasgold@pipeline.com> To: SCD-list@longisland.com Subject: Re: conflicting guidance (was: A Gut Feeling) Paula Sirois wrote: > Given the results of the study that Deanna so kindly shared, I would > like to reiterate my perspective that the highest authority when it > comes to dietary intake is our own innate wisdom. Some people have a > problem with that, I know, and to you, I offer my best wishes for > your success as you sort through the mire of nutritional information > that floods the media. I see no conflict between listening to our own bodies' innate wisdom, while *also* sifting through the mountain of nutritional information. How else do we discover new insights, understandings, and approaches to our problems - with the ultimate goal of finding that which (our innate wisdom tells us) really works? After all, our innate wisdom didn't automatically conjure up SCD out of the blue: someone either told us about Elaine's book or we found it by digging it out from the muck and mire. Our innate wisdom can't tell us whether or not a particular diet is right for us before we find out about it. I imagine there are *many* IBD sufferers who have plenty of innate wisdom, but who have not (yet) had the good fortune of learning that SCD even exists... not to mention those who *did* follow it, without success, and whose innate wisdom told them it wasn't right, so they must resume their quest for some other means of dietary success. (Heck, Elaine herself wrote that not everyone will be helped by SCD!) > In my experience, regarding my son, the SPECIFIC CARBOHYDRATE DIET > WORKS!!!!!!!! I will not now go searching for something else. <snip> > I will not walk away from something that so effectively alleviates > my son's discomfort. I'm sincerely thrilled for your son (and for you) that SCD works for him - I hope it will work for me, too! Of course you have no need to look further - why assume anyone would ask you to abandon something that works? I'm a firm believer in "if it ain't broke, don't fix it." If, G-d forbid, it *hadn't* worked, I'm sure that you would have left no stone unturned in your quest to find *another* healing modality, until your (or your son's) innate wisdom helped you recognize the "right" one, should the "right" one have come your way. I posted the article merely because it shows how other researchers, besides Elaine, are aware of and actively pursuing an intestinal bacteria/IBD connection. I happen to think it's interesting that, on the one hand, their work validates what Elaine has been saying, while on the other, their tentative dietary conclusions are nearly the opposite of hers. I never intended to challenge anyone's success with SCD. Besides, as the article says, those Cambridge chaps are merely chasing down a theory - they haven't even begun to outline a diet, let alone test it on anyone. SCD, on the other hand, has already been successfully implemented by thousands of people over many years. I'd like to close with an administrative-type request to everyone on the list: I know that many people sort posts by "subject" - this is a very useful means of keeping all the wonderful information that we share on this list organized and easy to reference when necessary. Changing the "subject" header in a post that is a reply to another post in the same thread makes it far more difficult for people to keep track of that thread. That's why I added "(was: A Gut Feeling)" to the "subject" header of this post, to indicate that "conflicting guidance" is part of the same thread as "A Gut Feeling." In the future, can we please try to keep our headers consistent, only changing them when the content of the messages changes to the extent that they no longer match the header (and using "was:" when such a change is necessary)? Following this basic rule of "netiquette" will go a long way to making this list more organized and user-friendly. Thanks! :-) -- Deanna
Date: Sun, 02 Aug 1998 23:50:22 -0600 From: Partridge <raparch@planet.eon.net> To: SCD-list@longisland.com Subject: Re: How come CCFA doesn't discuss the "SCD" diet at all? The basic reason (from what I have been told) is that the medical profession has a strict set of guidelines for medical research for particular therapies - drugs or otherwise. The basis of their study ( so that a false sense of wellbeing is eliminated from study results) is the now famous standard of medical research - The Blind Study. The blind study is just as its name implies - you do not know you are taking something, so the researchers get the unbiased viewpoint (your feeling of well being is not a factor because you are lead to believe that the placebo could be the real thing). Now comes the tough one for the medical profession - how do you conduct a blind study on the SCD - how do you give someone placebo chicken, placebo cheese, placebo honey or even placebo almond flour, let us not forget placebo carrots. Simply put, they cannot do it. So diet cannot be "properly" studied under the prevalent medical research dictum. if they cannot have a blind study then there is no basis for the therapuetic claims, hence no statements by the CCFA or the Canadian equivalent as to supporting diet as an effective means of conrolling symptoms and eventually putting you into remission. If the FDA and TTP (Canadian) have not endorsed a study and subsequent clinical trials then no claims can be made by the profession and a particular group (CCFA). Also, do you think that the major funding of drug research (pharmceutical companies) would wholeheartedly support such a research program? Could we imagine them rushing to give research centres millions of research dollars for diet research so that people find out that it is the local farmers market that can supply them with the elements that lead to a solution for their ills and not the local drug store? Give the choice - diet or long term drug therapies which do you think Eli-Lilly or Galxo is going to support? Next time the CCFA comes looking for your $, ask them for a list of their funding support, after the average Joe On-The-Street guess who is behind them. But the reality is that for decades a blind study has been going on. I am sure that if this diet did not work, there would be no BTVC and there would not be a support group like this. I find it difficult to believe that thousands worldwide over many years have put "blind" faith into this diet just for the sake of it - if it did not work, they would have given it up long ago and the majority would speak to that fact. The opposite has occured, many are telling their friends about it who suffer with these debilitating and humilating illnesses. My wife and I have watched our daughter go through the worste of times, stuff we do not even want to talk about. We have lived through her and watched, helplessly as the effects of IBD took our daughters life and will away. We remember the early days of the diet and wondering like many of you - will it work?. But a few told us to stick with it and told us that "this too will pass". For the last 44 months she has been "fanatical" no cheats, deviations or otherwise and the proof of the success is that for the first time in many years, this weekend she went camping with her friends, hiked a trail that tests the endurance of the strong and called and told us how much fun she was having. Yes she is up their with her LL Bread, Muffins, Carrot Cake and honey. Hers and your testement are the evidence - we do not need any endorsement by anybody except those who have with the SCD took their lives back. Regards, Partridge Family It is also unfair that many like the CCFA label this diet as part of the "quackery" that is going on (as seen by the "open arms" enthusiasm with which the majority of GI specialists and MD's embrace the SCD) You are all evidence that this works, and so we do not need any research, endorsement by the CCFA, or a "blind study" the proof is in the growing numbers who have found relief with this diet. ALLAN
Date: Mon, 3 Aug 1998 19:09:05 -0600 From: "William Laing" <wlaing@telusplanet.net> To: <SCD-list@longisland.com> Subject: Fw: ThePARTRIDGE FAMILY Letter To the Group: The recent letter from the partridge family, regarding why the CCFA or the CCFC cannot/ will not recognize the SCD states, in my opinion, the problems of conducting such Blind Tests correctly. If I may be so bold as to add one point to such a fine letter from the Partridges, it would be as follows. If the SCD was marketable and shares could be sold on the stock markets around the world, as are Drugs to-day, there is no doubt in my mind, such research of the SCD would take place. We on this list bought into a concept for the price of a book. We didnot pay for 100s of millions of dollars of research costs when we bought the book. It is very difficult for anyone of us when we are extremely sick, to believe the drugs we require to become healthy, are conduits for making others rich. A sad tale, but true. ALLAN I hold your letter in the highest reguard, and thank you for taking the time to post it. I am 64 months at present on the SCD. Even to-day in full remission I remain on the diet, at least 98% of the time. The amazing thing to me is when I look back at the beginning of the diet, and complained of why must I be the one to do without starch and refined sugar? How terrible this world was treating me, I believed. (I call it The Poor Me Syndrome) To-day I shake my head in wonderment, hardly believing my good fortune in finding a cure for my illness... and at a pittance, the price of a mere book. I no longer feel I am being denied good food, for now I realize I am eating a much healthier diet than I ever had prior to being on the SCD. I dont understand why there are so many stars in the sky, and I dont care. I dont understand why this diet works for me, and I dont care. But I tell anyone that will listen, I found a fortune when I found the SCD. My wish is that all who find this diet and stick with it will enjoy the results as I do. Good Health to All William
Date: Fri, 4 Sep 1998 14:32:36 -0400 From: Rachel Turet <rachel@longisland.com> To: SCD-list@longisland.com Subject: Re: Oprah and the SCD > > Someone should write to Oprah about the Specific >Carbohydrate >Diet. . Wouldn't that make for an interesting show? I >bet Oprah would do >it!!!!!!!!!! I think this was proposed >before, and Opera was >contacted. Did she answer? Maybe a better >one to try is the Regis and >Cathy Lee show. I understand Cathy Lee >had a good friend who died >from >cancer that also had crohn's. I saw >one show where she mentioned how >horrible crohn's was for her friend. I sent the following letter to Oprah several months ago, and although our group was enthusiastic as hell, alas Oprah was uninterested. Not even the courtesy of a mimeographed reply. I had spoken to Elaine about the letter and she said I would hear nothing (right again, Elaine). As for contacting the other shows, Elaine said she would only go on Oprah, but then I never mentioned Regis, which might qualify. 2/25/98 Dear Oprah, What if someone were to discover the cure for cancer or AIDS? How would he muscle his way through the snake oil salesmen, to a forum upon which he would be heard? How would he pierce the armor of calloused skepticism we all wear to shield us from years of exposure to those who sell us lies and fabrications? Oprah, I was handed the gift of a cure to my own disease which is ulcerative colitis. This disease is not openly discussed because it has to do with bodily functions and oftentimes experts mistakenly place blame on the victim, claiming it is something he or she could control, if they chose. I timidly tiptoed around that gift, afraid to open it, certain it was a hoax, when in fact it was and is the real thing. I have been in total remission from this disease for two and a half years, all documented by hospital tests. My miracle came in the form of a book called "Breaking the vicious cycle" written by Elaine Gottschall. I know that some day she will hold a place in history and in heaven with the likes of Madame Curie and Mother Theresa. Thousands of people have walked exactly the same road as I have, to find this cure, complete with its detours of reluctance and skepticism and they too have documentation of their trip. I know that I can't ask you to accept and televise what I have written in blind faith. I write you today to beg you to investigate my allegations. Have someone just look at the book and at the pages and pages of testimony attesting to the truth of what I say. You often express how you feel about making this a better world and you have the power to encourage awareness about a nightmare that plagues millions of people and to bring the whole issue out of the shadows. I'm trying to keep this letter brief, but it is surely a complicated issue. So I will just end this letter giving you my phone numbers and those of Ms. Gottschall and pray fervently that I have been able to spark the tiniest bit of interest from you. Sincerely, Rachel Turet
Date: Fri, 11 Sep 1998 09:00:25 -0400 From: mpsachdev@nni.com (M. P. Sachdev) To: scd <scd-list@longisland.com> Subject: breast feeding On the Dr. Ronald Hoffman site (where I found out about the SCD) he mentions a few avenues being explored about the explosion of IBD in the last fifty years. The introduction of antibiotics, in humans and feed animals, approximately fifty years ago is a very strong suspect as well as the live measles vaccine when we were young. There has also been studies of floridation, cholorination of our water source as well as something as simple as the use of toothpaste and minute particles of dental fillings found in the gut. Lack of breast feeding as well as the early introduction of cow, soy milk and fruit juices to infants is also a culprit. I don't think it is any one thing personally, but an onslaught of modern medicine and food eating practices that have contributed to IBD. The SCD diet is much closer to the "caveman diet" than anything else. The caveman ate no grains, only meat, seeds, nuts, fruits, greens, tubers, insects, etc. Nothing was cultvated. Intellectually we have changed considerably, but possibly our guts haven't. I find this very interesting. My husband who has UC grew up in India. Processed food was unheard of. His mother followed homeopathic practices. He developed UC 4 to 5 years ago after over 20 years of living here and eating American style. Holly
Date: Tue, 29 Sep 1998 06:35:10 -0400 From: ruth <callahan@webspan.net> To: SCD-list@longisland.com Subject: Re: List of Foods/Dr. Haas quote > >Liz, > >After I read the passage elaine Quoted from Dr Haas It seems he noticed > >these different results within his practice of Gut disease suffers over the > >94 years. > > His observations stated that People who managed the diet carefully did > >better than the ones who didn't. > >Why does this bother you? > > > >We all still have our free will while eating SCD. If you deviate you just > >need to take personal responsibility and accept what happens. > >SCD seems to work the second time around : ) > > > >Ruth > >NYC (U.Colitis) Liz and Bas wrote: > Ruth, > > The reason that this quote bothers me is that it kind of gives the idea that > a cure could happen if only the person following the SCD is faithful and > fanatic enough. Personally, I don't think that everybody can be cured by > this diet. Also, I believe that no matter how hard you try, there will > always be some possiblity of ingesting a "no no" food item. And, there is > the fact that people just seem to react differently to some foods than > others. > > I love this diet and things that it's doing for me. Yet, I do not want to > fool myself into believing that in two years I will be cured and if I'm not > it was because I wasn't fanatic enough. No, I suspect it takes more like the > seven years, like the time that Elaine's daughter was on the diet. > > I agree, however, with this statement. If you are going to see quick > improvements, you have to be careful and take in the purist of foods. You > are not going to get anywhere if you compromise your committment to the > diet. > > Yet, I don't like to follow things blindly. I need to make my own > investigations about things. That's one reason that I'm looking up > information on the kwark. Granted it probably isn't safe, as many have told > me, but I'm not going to reject a food without first checking out the facts. > > Anyway (I didn't mean to ramble), thanks for reminding that it's totally up > to me to follow this diet. It's true, sometimes you forget when following > the SCD commandments that it is, indeed, your own choice to follow this > healing technique. > > Thanks, > > Liz (crohn's) Liz, Your bringing up a rather interesting topic for me, are we "curing" our gut disease? I don't believe the SCD is a cure, I think it creates remission from our disease. It might not work for everyone but neither does drugs, and eating healthy foods is deeply satisfying and a powerful way to help myself. It will never harm me. In the past 6 weeks SCD has taken away many of my symptoms of the disease. I think it's Dan who is a long term user of SCD. He was in remission than he returned to an unrestricted way of eating food with refined carbohydrates he eventually got a flare up of the disease again. Anyhow, My point is SCD appears to keep the disease under control.. Unfortunately in our popular culture It takes an enormous amount of our effort to just eat fresh unprocessed nutritious food as close to the source it comes from. Ruth NYC u.colitis Date: Sat, 18 Jul 1998 14:44:20 +1000 From: leos@surfnetcity.com.au To: SCD-list@longisland.com Subject: LIFE ON THE SCD LIFE ON THE SCD Many list members are concerned that they may have to spend the rest of their lives on the SCD. But why is it more difficult to stick to the SCD than to the typical Western Diet? Chiefly because the foods of the WD are more readily available, more widely available, more attractively packaged, more expensively marketed and cheaper. Why? Because manufacturers perceive a greater demand for WD foods than for SCD foods. And this, in turn, is because consumers demand WD foods. HOWEVER - if consumers began to discover how delicious, how nutritious and above all how HEALTH-GIVING the SCD is, the tide might well turn. OK, there are 187 of us on this list - but how many people, young and old, are out there in the world, suffering from Crohn's, colitis, cystic fibrosis, diverticulitis, celiac disease, chronic diarrhoea and constipation - people who would benefit from the SCD if only they knew about it? Judging by the number and variety of laxatives and anti-diarrhoea medications on the supermarket shelves and in the pharmacies, our membership of 187 is merely the tip of a vast iceberg. Don't you wish you had heard about the SCD when your first bowel symptom appeared? If the community at large could be made aware of the benefits of following the SCD, eventually manufacturers would have to sit up and take notice, and start producing SCD compatible foods. This would make life easier for all of us. I would love to be able to buy * lactose-free 24-hour fermented yoghurt, * nut-flour cakes sweetened with fruit & honey * nut-flour breads * travelling foods * sugar-free bacon and biltong (cannot find it in Australia) * frozen SCD-compatible meals for when you don't have time to cook I am sure everyone would be able to add many other foods to this list. I would also like to see restaurants and airlines offering SCD meals. How can we publicise the SCD? - Especially when the established medical profession is so adamantly, (one might almost say violently), opposed to non-drug non-surgical treatments of bowel disease. Probably you have all talked about the diet amongst your friends and relatives. This is a good way of spreading the word. Another way is to buy an extra copy of BTVC and donate it to your local library. If you do this, you might call up your local newspaper and let them know why you are donating the book - you never know, they might see a story in it. Almost everyone is interested in good health. If you can think of any other ways, please post them - I am interested. I hope I have explained my thoughts on the value of doing this. Let's try and replace wheat fields with almond orchards, acres of sugar-cane with acres of bee-hives. Publicise the SCD and let us all benefit. Cecilia, Australia. Date: Sat, 18 Jul 1998 22:31:08 -0400 From: Midas Gold <midasgold@pipeline.com> To: SCD-list@longisland.com Subject: Re: LIFE ON THE SCD Maybe what the SCD needs is a movie like "Lorenzo's Oil," or that made-for-TV movie (I forgot the name) about the Ketogenic Diet for epilepsy (at least the latter has Johns Hopkins, et al, backing it up). Hello... Hollywood, are you listening? -- Deanna
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