Debate about the SCD Mailing list
Re: diagnosis and prescription vs. similar symptoms and experiences Fri, 2 May 1997 11:51:49 GMT At 06:04 PM 5/1/97 +0300, you wrote: >Here I go again, perhaps its my fate to act as a skeptic, but don't you >think we should phrase what sounds like to me as a lot of medical >(traditional AMA stuff, holistic, whatever) advice and diagnosing being >done by sdc participants, with qualifiers such as, "maybe its canidia/ >maybe its a viral infection/ I had similar symptoms and this is what I >did". and > I rarely post , I think you might get more posts from different >people if the criticism was cut down. Dave and other unsigned comment, You bring up a good point here. Obviously, I can't speak for anyone else but I take what I read here with a large grain of salt (figuratively--I'm still on the diet <G>). I too am primarily a lurker here and am concerned about some of the "wild" statements made regarding health here. However, without criticizing <G>, there is part of me that wants to say "big deal". We are all adults here (I think). The very nature of the scd is anecdotal! That's not to say it doesn't work--it does *for me*. I consider *ALL* of the "medical advice" given here to be anecdotal--for me it's just a given due to the nature of this group. I used to think the scd would literally cure cd. After 2 1/2 years on the diet IMHO it doesn't, but it does relieve symptoms. I'm sure others would disagree and that's fine. So whether is it explicitly stated or not, everything said here is the opinion of the author and may have no relevance to your personal situation at all. In other words, your mileage may vary. SO TO EVERYONE, I guess I would tend to agree with Dave more than disagree. An occasional disclaimer explicitly stated, especially for those among us who may be more impressionable than others, may certainly be a good thing. On an unrelated subject, it would be helpful to me if people signed their name AND where they live in their signature. Sometimes it's tough to figure out by an EMAIL address who I am talking to--I like to call people by their name. AND, I'd love to meet some scd folk in the Nashville area. If we do this, maybe some will show up. What do you think?? Regards, Kevin MURFREESBORO, TN «« Discover the Spirit »»
appreciative lurker Fri, 2 May 1997 14:00:52 GMT I am a lurker but appreciate everything that everyone posts, particularly the recipes recently. This being a democratic group, I want to place my vote for a continuance of postings of an alternative nature. There are more than a few of us for whom the scd has brought tremendous improvement but not total relief. I personally fall into this category and so am always trying new herbs and techniques to tip the odds in my favor. Can't wait to try Michael's suggested early morning regiman and I do so appreciate the time he took to post it. I might add that I think an abdominal massage last thing at night is invaluable, some may find as I do that the area is tight and in some instances painful, and it seems that anything done to get it to relax will make for a better start the next morning. Once again, please don't stop the alternative suggestions, my progress is painfully slow but definite and I depend on anything you have to offer to keep me going in the right direction. I hate to think where I would be now without the diet and all the little things I do to supplement it. The best to all, Carol
Re: Disclaimers Fri, 2 May 1997 16:50:53 GMT Hi everyone, I have really appreciated the recent discussion about how we phrase advise, suggestions or personal experience with treatments and medical information. I really like the suggestion that we always emphasize the "in my experience," part. (In other places I've seen it abbreviated as IMHO -- in my humble opinion.) One of the things I really like about this group is that, I have found there to be quite a lot of integrity in the postings. But I think the questions and comments raised are really appropriate. These are some of my ponderings about this recent discussion: it seems like in some form, the essential question being raised is, do we use the list just to talk about the scd and things related to that, or do we want to be able to bring up other stuff, related to our intestinal health but maybe not about the diet? For me, I appreciate the focus of having this list be about the diet -- or I'd be on the IBD list -- however, there are some very inspired comments and suggestions that come through here and I would hate to lose those. So I really hope we can keep flexible and keep the focus while allowing discussions about tangential or related things to happen. Also, we begin to develop relationships with each other that make it hard or impractical to censor information, i.e., talking about recent health check-ups and medications (herbal or prescription). As we all know, this stuff has become the fabric of our lives, so it's hard not to share it sometimes. I feel that as long as we keep things in the range of personal experience and out of the theoretical, things don't even remotely begin to sound preachy. It is how we communicate about them that is important, like the comments before mine have also emphasized. By the way, regarding information about things of an alternative nature vs. stricly western medicine, it occurs to me that the scd, because of it's controversial nature, fits into the camp beyond even alternative medicine. I've found that even within the alternative medical establishment, the scd is considered extremely controversial and experimental. So we are kind of like in no-man's land with this diet. Which is why I value the companionship of folk on this list so much. I like the suggestion about putting our names and where we are from on our posts. I could understand people wanting to maintain anonymity too -- but whoever feels comfortable with it, I think it's great. Best regards and speedy recoveries to all -- Denise Davis, CA
Finding the SCD Fri, 2 May 1997 19:33:25 GMT >Hello SCDers > >May 1 is a milestone for me since it marks the date I began the scd in 1996. >It is now one year later and I'm compelled to celebrate it by relating a bit >about my experiance. I hope that newcomers to the diet will find this >encouraging. >
If someone said jump off a bridge.... Fri, 2 May 1997 18:24:26 GMT >Dear all , > I rarely post , I think you might get more posts from different >people if the criticism was cut down. Anyone who reads posts knows >everything is a maybe it never hurts to check things out, example some >people may not have Candida trouble but it is certainly worth checking out >. I for one know I do and I would have never figured it out without another >page mentioning it. Life is to short to spend time beating people up for >their input. That Metalic taste MAY also be caused from leaky amalgam >filling. New studies show they are dangerous to people with immune >illness. . I put the May in there to not offend . > Dear all. I post quite a bit, and I agree with the above message. I would hope that those who seek advice and answers on the internet would be intelligent enough to take everything they read with a grain of salt so to speak. I personally have gotten into the habit of researching everything myself before I take it, do it, or believe it. I don't believe things that people say just at face value. I analyze it in my brain, and if it sounds good or logical to me then I go to the library or on the net and look for all the info I can find about the subject, to educate myself. I then use all that knowledge to weigh the pros and cons and decide for myself. I read plenty of things on this list and others that I think is total bunk, but usually I just ignore it. If I think it is really wrong, I'll respond to it with my personal opinion on the matter. We all have free will and most of us live in a free country. I believe that information should not be suppressed. For example, I think all doctors who are treating IBD patients should be obligated to give them all their options. The SCD is one more option, but most of the MDs would like to keep us in the dark about it. My former Gastroenterologist had heard about the SCD but he didn't believe in it, so he didn't inform me of it. Of course, he couldn't be bothered to read or even browse through the book itself, so he really had no right to criticize it. The point is, he told me, a newly diagnosed patient who had no knowledge of the disease or treatments, that I should eat whatever I wanted, and that diet has no effect on IBD - PERIOD! Is this right? Should he not have told me about all the options that exist if he knew about them? I think that he could have at LEAST said that some patients have experimented with diets, some of which are controversial, but that some patients found some relief from different ways of eating. He could have pointed me in the direction of the different theories such as the SCD so that I could decide for myself. I believe within 20 or more years, this will be the case. Everyone should have access to all the information AND opinions out there. After all, isn't that what the internet is all about. Sharing information, ideas, and experiences. I can see where some may be worried about people taking medical advice and harming themselves or wasting money on things, but if they do, it is their own darn fault. Some people have more extreme or unconventional beliefs than others. But as the old saying goes..."If someone told you to jump off a bridge, would you do it?" This is just my opinion. Anna
Seems Like One Unhappy Camper with IBD Wed, 14 May 1997 0:09:17 GMT Hi All Thought might find this posting interesting from the IBD Digest. Personnally I have been on the diet for almost 11 months and have had much success. I follow the diet as the Speciifc Carbohydrate Diet and not the Selective Carbohydrate Diet, perhaps that is why it has worked for me. Some of the things that I did and maybe the writer did not do was first make a committment by buying the book and not borrowing the book. Then I read the book from cover to cover and then followed exactly what Elaine suggested. Her batting average might not have been 100 % but it sure was close to it. I guess if I had the attitude that "my mind was made up do not confuse me with the facts" I would come to the same conclusion as the writer. Another interesting conclusion from his posting that this mind was made up on a poll of 2 people? One had success and the other had failure. Regards to all... Mac/IN Date: Sat, 10 May 1997 00:08:52 -0400 From: "Guy F. Brandenburg" <guyfbran@erols.com> Subject: Re: IBDlist Digest (10 May 97) I got two e-mail messages personally from people with personal experience with the Gottschall no-grain diet. One said he/she was much improved by it, and the other said it almost killed him/her. Obviously what you eat is very important. I did not try the Gottschall diet myself, but I had already (for years) been cutting out this item and that item from my diet because they caused me diarrhea and cramping. When I did look at the recommendations of the Gottschall book, I was more than willing to try just about anything. Hell, I was trying acupuncture also. What made me so skeptical about the book was that I had already ruled out a bunch of the stuff that the book recommended as good, since they made my innards hurt like crazy, gave me diarrhea, and/or seemed to cause bowel obstructions, especially the nuts. I concluded that the authors were nuts, too, especially when I read the part about how you had to stay on the diet for years to get any benefits. It sounded to me like the goofy nonsense that used to be issued by the guy who invented Macrobiotics, whatever his name was. Again, I agree that what you eat is important. I concluded on the basis of the evidence available to me, having borrowed the book hoping that indeed it would provide some answers that I desperately needed, that unfortunately that diet is crazy and not worth taking a risk on. If you want to try it on yourself, fine, I guess. I hope it doesn't harm you and cause your intestines to rupure. I could be totally wrong. But I think it is a good idea for at least someone (me, since I don't hear many others, except for the person who sent me the e-mail about his/her brush with death when his/her intestines ruptured) to say that they don't think it is a rational choice to avoid all grain products. Heck, most of the poor people in the third world eat primarily grains and beans. I wasn't aware that poor people in the 3rd world were afflicted with crohn's disease or colitis. And most herbivorous animals eat leaves, seeds and fruits. Grains are seeds, right? I was unaware that animals suffered from CD or UC. I don't know what causes either one, but I doubt very strongly that it is grains. One last point: it's OK to disagree with me, you know, but it's not OK to say that I don't have a right to express my point of view. Granted, I didn't read the entire book from cover to cover, but I read a lot of it, and the more I read the less sense it made to me, so I returned it at the next support-group meeting.
Was ther really a man on the moon? Wed, 14 May 1997 21:13:53 GMT To the Author of the above regarding your views of the SCD. If you havent suffered enough from the devastation of IBD, then it is your God given right to suffer some more. However if you are looking for support I am sure you can find it on this list.Good luck to you. Bill
critical crusader Thu, 15 May 1997 16:02:15 GMT Did anyone see this guy's first criticism towards us from IBD digest vol8n26? I found it more offensive than the last one in vol8n29! I don't know how I missed this one below. At least Tom the moderator has some sense, with his comment at the bottom. Maybe if this "guy" tried the diet a year ago after he supposively read it, he wouldn't have had the rupture and could possibly have avoided the surgery. It seems his anger at his poor health is being misdirected at Elaine and the book and us for following it. I find this sad, but suppose there's nothing we can really do or say to change his mind. I just hope he doesn't decide to become a major Anti-SCD advocate or something. We don't need any more discouragement from the world about this diet. It's bad enought that the medical profession is against it, but now patients too. I did like the other SCDers comments so far towards Guy though. Anna --------------------------------------------------------------- Date: Sun, 20 Apr 1997 16:11:16 -0400 From: "Guy F. Brandenburg" <guyfbran@erols.com> Subject: Re: IBDlist Digest (19 Apr 97) Hi. I've written a couple of things before. I have had CD for about 35 years, but it was only diagnosed 10 years ago, and had a resection last year of 3 feet of jejunum. I've been through prednisone, Sulfasalazine, acupuncture, and Asacol, and the only thing that helped was the surgery (emergency surgery, by the way, since it ruptured), frankly. I wanted to comment on that Gottschall book, "Breaking the Vicious Cycle". I honestly think it is the work of a lunatic. I read it over a year ago, and thought is was insane. It advocates replacing all grains (i.e. seeds) with nuts. How on earth can the consumption of grain be the cause of Crohn's disease or colitis? Ever since humans evolved, they have been eating a mixed diet of grains, vegetables, meat, fruit, milk, and nuts--pretty much anything they could get, except for various religious taboos that various groups have held. CD and UC are fairly recently-diagnosed diseases, if not recent diseases, that affect maybe 1% of the population of the US (I have no numbers on other countries). Nuts are very high in fat, and, if I'm not mistaken, have a lot of oxalic acid. If you eat lots of nuts, then you're going to have an even worse time with kidney stones! Thank you very much, I've had them once and I don't want to get them again! Another thing that put me off is the fanatical tone of the book: it says that just REDUCING grain is not enough: you have to eliminate EVERY BIT or you're condemned to suffer forever. And not only that, they claim that only after about 2 years of grain-free diet will you begin to feel better. This sounds to me like a religious cult (which can appear in many guises). I would recommend steering clear and being sensible. I predict that in 10 or 20 years will have some good research that finally points in the direction of a cause and a cure. Gottschall's book is, quite frankly, nuts. [Does the book really say that it will take about 2 years to get relief? Other people using this type of diet talk about results in much shorter times. I haven't read the book myself, so cannot really make a judgement either way on it (how's that for waffling!) -tom]
Re: The "Gottschall" (Specific Carbohydrate) Diet Wed, 14 May 1997 18:07:36 GMT I have been on the Specific Carbohydrate Diet for a little over a year now, with excellent results. It has enabled me to get off of 2 of my long-term medications (Cipro and Flagyl). My primary symptoms (diarrhea and anal fistulas) have improved dramatically since I started the diet. I would like to clear up several misconception regarding the diet: 1. Raw fruits and nuts can further irritate an already-irritated digestive tract. That is why they are allowed on the diet ONLY AFTER SYMPTOMS HAVE CLEARED UP. I am now able to consume things things (such as raw nuts) which would have quickly given me diarrhea prior to the diet. I have found that I do have to still limit my fruit intake SOME, which I believe is due to candida in my system. (Even when I don't limit my fruit intake, I still do much better with it than prior to the diet). 2. It does not take years to BENEFIT from the diet, but usually a year or two to be completely symptom-free. Many people (myself included) saw benefits within the first few DAYS on the diet. Mrs. Gottschall recommends giving the diet a one-month trial. 3. Grains and sugars themselves are probably not the original CAUSE of IBD. In my own case, I believe that heavy usage of ANTIOBIOTICS during childhood (for the croup and bronchitis), plus a diet heavy in REFINED grains and sugars, was the original cause (by upseting the necessary balance of bacteria and yeast in my digestive tract). I believe that God put everything we need in whole wheat in order to digest it properly, but that processing it into refined white flour removes some of the elements (such as the bran) which are essential for proper digestion of it. - Russ Johnson Dallas, TX
reply to naysayer Wed, 14 May 1997 18:49:33 GMT Dear Russ, I'm glad you posted this to the ibdlist. When I read that guy's posting about how he decided the diet doesn't work based on principle and not experience with it, I was irritated. I decided not to bother replying because sometimes I can go a bit too far trying to defend our diet and convince people that this attitude is wrong. I just figure that those who are not ready for such an idea will sadly, not be able to reap the benefits of it like us. I wish that people would be a little more open minded. You have to if you want to get better. If someone is willing to try accupunture, then a simple diet like ours is not such a big deal. Personally, I tried accupuncture, but hated it because it hurt too much. I just decided it wasn't for me, but I still believe in it. At least I tried it before deciding it was "bad". Anyway, your response to that naysayer was a good one. Brief and to the point. Anna
Re: critical crusader Thu, 15 May 1997 16:35:34 GMT Hi everyone, In regards to the guy who put down the diet on the IBD list, I just had to add my two cents. I get so tired of telling people that I'm feeling better because I'm on this diet and then get this range of suspicious comments or questions, like, "Do you really know that it's the diet that helped you?" "Maybe it's just that the stress in your life went down?" or their eyes glaze over suspiciously and I hear people start to get defensive about their diets -- as if they think that I'm recommending this to everyone, regardless of their problems (which I don't unless someone asks). I just never would have guessed that a diet that helped so much could cause so much suspicion and controversy! Mostly I find that folks start to get defensive about their own diets, as if I was condemning grains. It's gotten so that I don't even really want to say I'm on the diet. I just say I'm feeling better. It's so sad because this diet could help so many people. I'm convinced that it can work for a large majority of people with bowel diseases -- if only because it rests the gut so nicely from having to digest those disacharides. When I went on the diet I felt like I was finally getting some nourishment that I hadn't gotten in a long time. After two and a half months, my stamina has come up and I'm even getting some muscle tone back. So I am so grateful. Well, I don't ususally vent but the reading the second letter of that guy's inspired me. Denise Davis, CA
Re: critical crusader Thu, 15 May 1997 18:43:17 GMT Hi all, I am mostly lurking in this list but I have to say something now. I hope the guy who say negative things about SCD finds his own solutions but meanwhile.....he is not important. All of you ARE important!. I admire everyone of you for trying SCD, successfully or unsuccessfully. And I admire you even more for using a support group like this to keep the focus and give and take support as needed. The 15 or so Emails I get from this group every day tells me things are working for you all just fine. I am fasting and in the process of reintroducing foods back into my system after 3 months of bowel rest. The few foods that I have introduced so far are in compliance with Elaine's list of eligible foods and I have had no trouble at all. As opposed to my GI who said "Just start with EASILY digestible foods like potatoes, bread, rice and pasta". Thanks, Dr., but that advice set me back 30 days. Anyway, Keep up the good work. I doubt I would have the desire to try this alone if you were not here 15 times a day :-) Barb Mills Vancouver, Canada
Re: Are we focused? Wed, 9 Jul 1997 12:56:53 GMT Greetings! It is great to see things back on line again and that we are getting a free flow of information. There is such great assistance knowing that people are not alone with this disease.... However, I am troubled by the tenor that the SCD Support Group is taking. Not that long ago someone (I forget who) set out some simple guidelines, etiquette and rules of the road for our use of this group. Recently, there seems to be an influx of em's dealing with other books, diets, regimens, mindsets, "occurances" and paradigms. All these (as open minded individuals taking charge of their illnesses) have their place and time. I understood that this support group was for those on the Specific Carbohydrate Diet as oultined in E.Gottshall's Book(s) "Breaking The Viscous Cycle" /"Eating Right for A Bad Gut". We value the comments of those who have been strict on the diet (no rice milks, soy milks, corn, corn syrup,etc) as this diet works at the molecular level and is not a diet that one can occasionally "cheat on" like some diets. Also there has been a plethora of comments on other diets that actually include forbidden foods under the SCD, no wonder some are asking if certain foods are acceptable, the SCD is at risk of becoming marginalized if we keep including other non SCD diets in our discussions. If it is our personal belief then we are entitled to it otherwise it has no place in this forum which deals with those on the SCD. Is it that many on the group do not have the book or access to it? It is quite clear what is acceptable and what is not. After reading it several times (I make a point to read the first 60 pages every six months or so) I find it well written and easy to follow. The recipies serve to put into practice what is covered in the diet. The comments from ones who have worked to modify and improve the diets recipies are invaluable to us as a family as we all enjoy the same food as our daughter (5 years with Crohns Disease of the colon). This is a positive side to the group. We have enjoyed the comments of those who have put up with so much and have come out winners after their colonoscopies, this gives us and others the encouragement to continue. Discussion about medication, flares and well being are also insightful and appreciated as the diet is an adjunct to medication. The "hang in there" and "This too shall pass" emails kept us going through some dark days and nights. Should this group become a personal forum to promote personal ideas that are somewhat tangential to the diet? - do not get me wrong, I am not trying to stiffle public debate and commentary but I wonder what is served by discussion about yougurt and blood groups - is this a substantiated study that we can all access or is it again a commentary??. My experience is that IBD sufferers are a unique group among those with chronic illness and often these tangential emails serve only to bewilder and set them of on a tangent perhaps only to undo what has taken weeks with small gains to achieve. Incidentally, we have been with the diet for close to two years, my wife is Type "O", I am Type "AB" and my daughter is type "A" we all enjoy and tolerate yougurt. We should count the cost of our comments before sending them out - ask ourselves, is this really encouraging? will it value the other SCDer's? is it substantiated and can I refer direct to a specific document? Do we have our facts/quotes correct?. On the point of the yougurt/blood issue what happens if someone thinks that yougurt is causing them a problem and they stop taking it. If we are strict to the diet yougurt is fundemental to it. If made correctly it will be tolerated by most people. Further, we should be careful about exclusions. The book when read c a r e f u l l y and repeatedly yeilds greater insight. On exclusions after discussing the diet in depth the book states: "The Specific Carbohydrate Diet is highly nutritious and, depending choice of the foods, is well balanced. Every effort should be made to "round out" the diet by eating sensibly and not, for example consuming large quantities of meat, or more than four muffins each day TO THE EXCLUSION OF OTHER FOODS" (Page 46, Par 1) I myself do not want to discourage but I hope that we can move away from the current trend. If I am wrong in my perception, I will stand corrected. Respectfully submitted, Allan Partridge ALLAN
TOPIC Wed, 9 Jul 1997 13:00:00 GMT Hi All There is another message that talks about some messages that depart a bit from the SCD topic. Elaine Gottschall got the diet information from Dr. Haas who developed the diet in the late 1940's. In her talks, she adamantly says that she will not change even one word of what Dr. Haas told her. It is much like wanting to change a piece of music by Mozart or adjusting the wording of a play by Shakespeare. Elaine considers Dr. Haas to be a master. It is not understood why the diet works. Elaine has spent many years trying to understand it. I personally have used a rotation diet plan to overcome Crohn's disease (before Elaine's fisrt book was published). I don't talk about that approach much as I have found through personal experience with our local support group that people are much more receptive to the SCD method. The rotation plans can help some but they are of little value if not used. In more than 5 years I was unable to convince even 1 person to try a rotation plan. After that futile effort, I now have several success stories locally using the SCD. The problem we have in our local support group is that once the people get better they no longer need the support and they stop attending the meetings. In summary, I believe that the SCD is the best diet approach available. Since I work with Elaine Gottschall I have committed to her to follow her wishes at all times. John
Re: Allan Partridge's discussion "ARE WE FOCUSED?" Wed, 9 Jul 1997 16:57:47 GMT Hello folks: I have strong feelings about this. Here's my story: 1. I only started using the Internet in the last 6 months because I was very concerned about my adult son, who had been diagnosed with CD in June 96. My daughter used the net and pointed out the information from the Crohn's Colitis foundation. ONLY an emergency would have driven me to using this medium. 2. I threw my hat in the ring on the IBD list after reading no more than 2 or 3 posts. I spoke from the heart without editing. 3. I pissed several people off, who wrote me rude messages, both publicly to the list and privately. (What principally irked people was I wasn't a sufferer and yet immediately thought of gathering up all the lore from the Internet and putting it in some other--printed--form. I just thought the Internet was as arcane to others as it had been to me. I DIDN'T THINK). 4. These flames were more devastating to me than I could possibly have guessed. 5. As soon as I found out about the Gottshall book I bought it and read it and sent one to my son (who lives in Sweden; Nothern Sweden has an IBD rate 10 times the rest of the industrialized world. Hmmm. NO sun, NO veggies, lots of dairy, sugar, and refined flour.) 6. He so far has not decided to use it. 7. I am trying the diet (have just over 30 days) to see how much trouble it is and what the affect is on a person not suffering from IBD. (I'm constipated and have lost 8 pounds. Lutz talks about the constipating effect). 8. I'm reading textbooks, the Internet, the IBD list, the scd list. I like you folks the best. 9. Earlier, I would not have agreed with Allan's point about focusing the discussion, since I so needed people to talk to. Even though some people flamed me, a few responded to the anguish they heard under the whining, and I have several penpals. I can talk to them at length and about anything. SO NOW I'm ready to focus (present post excepted) with some caveats. (Caveat: a legal notice . . .to suspend a certain proceeding until the notifier is given a hearing. I think there will always be times when comments like Allan's are sorely needed to get a HEARING from everybody in the group and see we're still on the same sheet of music). 10. Back to focusing the discussion on scd list. I have hard copies of ALMOST ALL the posts from the scd list from the last 3 months in 3-ring binders. (I have the IBD list on paper back to when it started). 11. NOW I can see why the protocol for one-short-message-per-post makes sense. I have made a filing system for the scd list based on SUBJECT. I have files on IBD Theory, Personal Testimony, Recipes, Yogurt, Vitamins, Alt. Therapy, Other diets, Research, Medication, Surgery, Immune System, Experts--and the categories are still proliferating. I read a post and don't know where to put it. Paper piles up. I see a pattern then lose it. I want to be able to succinctly report to my son and instead end up copying stuff and sending it to him, thus defeating the purpose of all the hours I've spent in trying to cut the wheat from the chaff. 12. CONCLUSION We forget very quickly what it was like to be newly diagnosed or to be the parent of spouse or other love one of someone diagnosed. You can't believe how both humbled and toughened up I am since the first shock of reading medical textbooks. IMHO (snicker, snicker, see what I've picked up, and if you don't know what it means e-mail me directly. I'm using it to prove I just didn't get off the last boat, as my immigrant Grandmother used to say.) People can be told how a culture, such as the Internet/scd list, works, and then gently be led to adopt its ways. For the most part, they don't need to have their feet held to the flames. Or insiders can just be patient until newcomers pick it up. I don't remember ever seeing any info on how the scd list operates. Obviously, it's a unique culture, quite different from the IBD list or the Crohn's Colitis foundation. I was never TOLD about a one message per post rule; I finally inferred it. I'd like to know when it's OK and not rude to respond just to the person sending the message and not the whole group.(I think that would be one way to keep tedious conversations some of us want to have on other topics from intruding on the whole group, but it's always a judgment call.) EVEN MORE CONCLUSIVE CONCLUSION The question seems to be: which way are we going to err--towards the INclusive or the EXclusive? I'll play either way once I know the rules. While I'm learning, I appreciate it when people tell me how to act along with assuring me that everybody had to learn. PLEEASE forgive me for such a long message. I value each and every one of you on this list, you're an inspiration. Like Dietmar, I'm a recovering intellectual. Life dishes out experiences the mind can't handle alone. Besides suffering from intestinal problems, you guys are wonderful and brave and smart and funny--and so am I, and that's why I belong here. Best regards, KD in Texas
Re: Are we focused? Wed, 9 Jul 1997 17:37:59 GMT Dear Group, It sure seems, that every so often we have this discussion: what's appropriate for the group to disuss and what's not. The last time this subject came up -- and it's all cataloged on Mik's website -- it seemed that more posts came in about people wanting freedom of speech than to try to police the group into sticking to only the scd. After being on the diet for five months going on six and having watched to group discuss many topics, I've come to the conclusion that it's pretty impossible to be human and to not have tangential conversations come up in relation to the scd. Personally, I enjoy them, find them informative for the most part. I've really learned some things that I wouldn't have otherwise, like about candida and hydrotherapy, plus understanding what kinds of medical treatments people undergo that I have never experienced, and what they go through with them. Basically, this is a community and there are a wide variety of us, including different nationalities represented here and to me that means there needs to be room for people to speak about what concerns them, even if it's a weak link back to the scd. If I don't feel like reading all the posts or a particular subject doesn't interest me, I just delete them. It's no big deal. As long as people are polite, ethical and realize this group is for people on the scd, those are pretty much my requirements. Take care everybody, Denise
Let's Chill Out Wed, 9 Jul 1997 19:14:36 GMT I have noticed a few people getting up in arms about this list lately. I had to stop being a regular participant in the IBD digest list group because of critical people and people who felt they could tell us what we could and could not discuss. I would be saddened if I had to give up on this list too because I could no longer feel comfortable to discuss any topic or put in my two cents or opinions. If I posted a message on the IBDlist regarding the SCD I got people who were so opposed to it that they felt they had to flame me. Dr. Holland himself was completely unprofessional when he repeatedly e-mailed me privately in order to argue over whether the SCD could work or not. He got my e-mail address off the IBD list. One time he resorted to juvenile name-calling. Now I rarely post to the IBD list because I didn't find it very supportive anymore. At the moment this is the only list where I can get some support from people who agree with the diet. I don't believe the SCD list should be limited in any way. I think that if you don't care about a particular message, say regarding mold, or candida, you should simply skim it, realize that it doesn't concern or interest you, and click that handy little DELETE button to move on to the next message. Let's not be so picky and dictatorial. Personally, I'm not interested in certain topics or messages that I get from this list either, but it's just part and parcel of being a member of a group. Like someone else pointed out: It's no big deal. That's the way I see it. Many of us get a mailbox full of junk mail and flyers along with our real mail every day. We don't feel compelled to read every piece of junk that comes in, we simply throw it out at a glance. With electronic mail, superfluous messages are not environmentally hazardous, like paper mail is, so it's not really an issue. When I found the SCD list I was so happy because finally I could talk with people that believed that diet could have an effect on IBD, which is my main point of view. If people can't feel comfortable discussing _anything_ within the group, then they will start to drop out of the group and who will we have left? Just the critical ones who feel they can control everyone else? This happened on the IBD list, which is practically controlled by Dr. Holland and his worshippers, unbeknownst to newcomers who join in. People take his words as if it were coming from GOD himself. And he is only one human being, with very narrow minded viewpoints and opinions that he tries to dish out to anyone who will listen and praise him. This is the type of person who should have no business participating in a support group. So, to those who are getting in a big kuffuful about messages they don't care to read, I say, either put up with it, or go create your own list where you can narrow the focus and police it yourself. I vote for this list to remain an open discussion arena for any health related topics. If we imposed rules like: only SCD related messages allowed, there wouldn't be much to talk about would there? After all, it's all in the book. Like Elaine quite often says to people: READ THE BOOK!! I have heard her reply this to many people who ask questions that are totally obvious if they would read the book. I always saw this list as more of an IBD Support Group for people who believe in the principles of the SCD, rather than a cult that is totally dedicated to the diet. We all have full lives with many things going on in them, and the diet is just one aspect. Let's try to chill out, and be kind to one another. We are all in the same boat with these illnesses, so let's stick together instead of arguing amoungst ourselves. We have enough to worry about without having to worry that someone on the list may not care to hear what we have to say. Now I'm beginning to wonder if my messages are welcome on the list anymore. Am I one of the ones who posts too many messages unrelated to the SCD, that some would like ousted from this list? Thanks for listening, Anna
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