Letters from the SCD support group: concerning celiac disease Date: Fri, 18 Jul 1997 16:45:18 -0400 From: Don Wiss Subject: Re: anti-endomysium antibodies Odd Oivind Bergstad <oddb@STOVNER.VGS.NO> wrote: >Don wrote lately: > >>A celiac only has to give up gluten..... > >But this is not true according to Ellaine Gottschall! I her book she deals >with celiac disease. She points out that school medisin were not able to >cure celiac disease with only a gluten free diet. Then they constructed the >label true celiac which was a little subset og all the patients. But even >for them a gluten free diet didn't solve the problem completely. I she is >right, SCD will cure celiac disease. No one has ever been "cured" of celiac disease. I repeat no one. Because of her absurd claim that it can be cured, she gets no respect at all in the celiac community. But on a *strict* gluten-free diet, which her book does not get into in enough detail, one can get a 100% remission. Nothing else need be given up. If someone thinks that they have cured celiac disease, either they never had it in the first place, or they still have it, but don't have visible symptoms. Since it is defined as damaged mucosa, no other symptoms need be present. If Elaine can document someone that is biopsy diagnosed, and now, for what ever reason, can eat gluten and have a undamaged mucosa, proven by biospsy, then this person should be written up in the medical journals. Don.
Date: Fri, 18 Jul 1997 23:27:43 +0200 From: Odd Oivind Bergstad <oddb@STOVNER.VGS.NO> Subject: Re: anti-endomysium antibodies Hello Don! You sounded a little bit angry with me. I know only a little about celiac disease. But I thought that Elaine had done her homework before putting her words into her book. (I could have checked it out, but life is very short... as John Lennon sang.) I have heard a lecture from a norwegian female doctor saying precisly the same thing as you. If Elaine is wrong you should certainly start a discussion about it on the list and not only with me private. It shold not be against the law to state: Elaine is wrong! Because there is no God. Maybe you both are right. I seem to remember that Elaine also states that all gluten must be avoided... Best wiches from Odd Oivind
From: Rosset <plrosset@PACIFICRIM.NET> Subject: HELLO Hello SCD group, I'm new here in the group and have really been enjoying reading all the entries. Thanks Mik for the yogurt, raisin, coconut, and chopped nuts breakfast idea. Really tasty and quick to make. Having recently read the "Purpose of the SCD Group," the one thing I find a bit puzzling is the omission of celiac disease from the conditions for which the diet is indicated. Dr. Haas documented curing over 600 cases of celiac disease with the SCD in his book The Management of Celiac Disease. Elaine Gottschall's recent article "Whatever happened to the cure for coeliac disease?," recently published in the British periodical Nutritional Therapy Today, is well worth reading for anyone with celiac disease who is confused about whether it is necessary to go on the SCD or just go "gluten free." This article is posted on Mik's site. Also posted on his site is a copy of an interesting letter from Dr. Theo Colborn to Dr. Peter Green about her family's experiece with celiac disease and the SCD. Elaine's article would be interesting reading for anyone on the diet, not just celiacs, because it goes over the history of the diet from Dr. Haas on back. I've been following the diet for 4 years now. I had been battling ulcerative colitis for over 15 years before I stumbled across the diet on a Canadian TV show. I was at that time planning on having my colon removed. I was steadily losing the little bit of bowel control I had up to that point. The way I best describe my experience with the diet is that having regained my health once again beats having won a 100 million dollar lottery. I feel just that lucky, or luckier! Lucy Rosset
From: Don Wiss Subject: Re: HELLO Rosset <plrosset@PACIFICRIM.NET> wrote: >Having recently read the "Purpose of the SCD Group," the one thing I find a >bit puzzling is the omission of celiac disease from the conditions for >which the diet is indicated. Maybe because we celiacs have our own mailing list with more than 2,000 subscribers. And as we have been discussing this diet is more restrictive than is recommended by 100% of the doctors studying celiac disease. It is hard enough to get people to give up gluten, and harder to get them to give up more. Personally I follow close to a Paleolithic diet, which is close to the SCD, but also eliminates dairy. Besides not being a food during the Paleolithic era, part of the casein protein is very similar to gliadin, the toxic part of gluten. Note that in many disorders, e.g. ADD, autism. depression, schizophrenia both must be given up. Also in fibromyalgia many also have to give up both. But here we are talking about immune system reactions to proteins. Elaine focuses on sugars and starches. Dairy is well known for creating excess mucus and aggrevating asthma. This alone gives me enough reason to give it up. >Dr. Haas documented curing over 600 cases of >celiac disease with the SCD in his book The Management of Celiac Disease. I have not read his book. If he can show that they can go back to eating gluten and have a normal biopsy then they should be written up in the medical journals. If he hasn't done so I have to ask why? Or is this a semantic issue and he's using the word cure to mean control. >Elaine Gottschall's recent article "Whatever happened to the cure for >coeliac disease?," recently published in the British periodical Nutritional >Therapy Today, is well worth reading for anyone with celiac disease who is >confused about whether it is necessary to go on the SCD or just go "gluten >free." I have not seen this article. When I do I will share it with the doctors studying celiac disease and ask them their opinion. > Also posted on his site is a >copy of an interesting letter from Dr. Theo Colborn to Dr. Peter Green >about her family's experiece with celiac disease and the SCD. I can't find this in the 2MB of material at Mik's site so I can't comment on it. I'd need an exact URL. Don.
(The URL of the letter from Dr. Theo Colborn is http://www.inform.dk/djembe/scd/scdtheo.html, while the celiac article by Elaine Gottschall is placed at http://www.inform.dk/djembe/scd/scdceli1.html.
Date: Mon, 21 Jul 1997 17:48:50 -0400 From: Don Wiss Subject: Re: Gluten and SCD Odd Oivind Bergstad <oddb@STOVNER.VGS.NO> wrote: >In her book Elain has a chapter called Beyond Gluten with 29 (!) references >in it. In Medline, for the past 30 years, there are more than 6500 articles. Some celiacs also have other food intolerances. A common one is soy. Also some celiacs have problems with other starches. This is not considered part of celiac disease, but other concurrent problems. One can't blame every problem a celiac has on celiac disease, just most of them. >I quote Elaine: > >"The Specific Carbohydrate Diet has been shown to completely cure most cases >of celiac disease if followed for at least one year. It is truly a >gluten-free diet,.." > >Then she refers to this source: > >Haas and Haas: Management of Celiac Disease. J.B. Lipponcott Co, >Philadelphia. 1951 > >It seems to me that you don't believe in this source. You are questioning >weather SCD cures celiac disease. Am I right? 1951!!! The fact that gluten was behind the disease was only known for a few years at that time. And yes, in the early days they saw the symptoms go away and did think the kids were cured. But with the later invention of the Crosby biopsy capsule, they learned that despite no visible symptoms, damaged mucosa can be found in any celiac of any age that is not on a gluten-free diet. If this were true, there must be in the 46 years intervening something published confirming this early observation. Don.
July 22, 1997 To: Mik Aidt From: Elaine Gottschall (...) [The celiac article] is an important article although I doubt if many of the proponents of the gluten-free diet will believe it. Those poor people went around suffering for years with doctor after doctor telling them there was nothing wrong with them and it was in their heads. Finally, some doctor tells them it is celiac and they are so grateful that they "aren't crazy" that they carry a special kind of loyalty to anything he has told them to do. But the history I have written is accurate and is the way it happened and as the article says, hundreds of people are still suffering. In fact the diet most celiacs have been told to ingest contains scads of gluten - corn for example. The SCD is absolutely free of gluten and gluten-like proteins although its foundation does not make a lot of gluten but of the starch. As my chapter "Beyond Gluten" shows, the gluten prevents the starch from being broken down and absorbed thereby giving an over-abundance of carbohydrate to the yeast and bacteria in the colon. (...) Fondly, Elaine
Date: Fri, 25 Jul 1997 17:02:47 -0400 From: Don Wiss Subject: Re: Celiac disease article >Nutritional Therapy Today, Vol 7, No 1, page 8-11 >By Elaine Gottschall >Then an article in the Lancet started the current fashion that coeliacs are >merely allergic to gluten. Well, that is the current definition of celiac disease, except we *never* use the word allergy, but a food intolerance. One book publisher had to reprint 5,000 cookbook jackets once, because whoever wrote the front flap article used the word allergy. (Bette Hagman's first cookbook.) > The success of a gluten-free diet, however, required >the diagnosis of coeliac disease to be thenceforth restricted only to those >patients who benefited from such a diet. Correct. >Author and researcher Elaine >Gottschall explains that this change has left thousands of people with severe >symptoms which are going undiagnosed and untreated. One of the problems is the diagnostic criteria is strict. The medical profession does put a lot of effort into not giving the diagnosis. They'd rather miss a few then diagnosis one with it by mistake. Then most won't diagnosis until the case is severe. Then there are some doctors that refuse to give the diagnosis, as they feel the gluten-free diet is so bad the patient is better off living with the symptoms. I feel a trial diet should be diagnostic, but the medical profession disagrees. One problem is people then aren't sure whether they really have celiac disease, and they can stray from the diet. The diet must be strict and for life to protect against malignancies. And then there is the problem that a celiac diagnosis is unprofitable. Much more money can be made with an IBS diagnosis. Don.
Date: Sat, 26 Jul 1997 01:37:43 -0400 From: Don Wiss Subject: Re: Colburn to Green Rachel Turet <shodanrt@LIII.COM> posted: >Dear all, The following is letter sent by Theo Colborn PH.D. to Dr Peter >Green of Columbia Presbyterian Med Center in NYC. >All four of my children were born with Celiac disease. At age 2 & 1/2 the >oldest was extremely ill even though he'd been placed on a gluten free diet >by a pediatrician who had diagnosed his problem as celiac disease. In those days a diagnosis was made by sniffing the stools. Biopsies didn't exist yet. It is possible that they didn't have celiac disease, but something like Crohn's or UC, or carbohydrate intolerance. >Today, my children (age 37 to 47) have no overt celiac >symptoms Many celiacs show no overt symptoms. Doesn't mean a thing. My brother was diagnosed as an infant, gluten-free for six months, then "cured." He is now 46 and has no overt symptoms. He is 5'11" and 130 lbs with osteoporosis starting to set in. He did finally go to a doctor, who agree with him that since there were no overt symptoms he didn't have it and didn't give him a test. But at some age the symptoms will become more evident, and the bone damage will be permanent. >The gluten-free diet was useless. And except >for continuing to eat potatoes and rice (in order to sate my appetite) I >ended up on the Haas diet. This was not adequate and about 2 years ago my >health deteriorated so much, I thought I might have to retire. Because of >flatulance, diarrhea, and severe vaginitis and cystitis it was impossible >for me to work around others, travel, and eat outside my home. In addition, >I had wasted to 100 lbs and was fatigued, had trouble consentrating and was >in constant pain My guess is she also had carbohydrate intolerance, which is a more severe disorder than celiac disease. It comes up on the celiac list about once a year. Today most people with those symptoms pick up one of the books on Candida and self-diagnose themselves with that. If there really is such a thing (in people without AIDS) , then it would be a secondary condition to gluten intolerance, where the Candida is flourishing due to the immune system weakened by the toxic gluten. Her constant pain could also be what is now called fibromyalgia. Some people can control it with a GF diet. More need to go gluten and casein-free. For some that isn't enough, and very possibly the SCD would give them relief. People with a FMS diagnosis do have IBS, and they consider it part of the disease. On the FMS list many are trying The Zone diet and finding it helps them. It is low in grains. >I am taking the time to write this because I am truly concerned about all >the children with celiac disease who are chronically ill.. They do not have >to be chronically ill. I have attended several local celiac society >meetings and watched the chldren. These children will never be able to >reach their fullest potential while on a gluen free diet. This is news to me. I am not aware of any celiac children that are chronically ill. She needs to do better than this to convince someone that knows hundreds of celiacs. > The good news is >that it only takes about 3 years on a restricted carbohydrate diet to >restore the childrens health so that they are sympton free and remain that >way, It is well known that overt symptoms disappear during the adolescent despite eating gluten. Mine did. But they was evidence of always having it, e.g. skinniest in class, difficulty passing swim tests, ADD, puking when drinking beer, teeth developing late, smelly flatulence, constipation, etc. >I plead with you to try this simple approach to controlling and reversing >celiac disease. Actually I think I'll ask Dr. Green what he thinks of this letter. I have his phone number around here, and know who to ask for his e-mail address. > In the end I decided I must--- because I cannot stop >thinking about all those children at the celiac meetings with their >strained faces and miserable dispositions. As I wrote already this is news to me. I've read every article posted to the celiac list for 2.5 years and for children 100% talk about their remarkable recovery. Those with refractory sprue, where the GF diet doesn't work, are older and often have been on and off the GF diet. >On the other hand, I can no longer count the number >of people whom I have convinced to try this diet and who have had their >health restored, including women with diagnosed Crohn's disease who had no >hope of ever regaining their health. Right. No one is arguing that the SCD isn't needed for people with IBDs, just she hasn't presented any evidence that it's needed for someone that only has celiac disease, or that it "cures" celiac disease so people can go back to eating gluten again. Don.
Date: Sat, 26 Jul 1997 14:25:24 GMT From: Rachel Turet <shodanrt@LIII.COM> Subject: Re: Colburn to Green Dear Don, To be frank with you, I am really beggining to find your cynicism grating. "There are none so blind as those who will not see". Have you nothing better to do than continuously question heartfelt praises for a diet that many of us feel has saved our lives? If the SCD is not for you, so be it. I don't think your constant criticism is either needed or wanted here. SCD is NOT for everyone. Please, either bridle your negetivism or take it elsewhere. Unless you've found something better (and years of searching for an answer has netted me only this diet), I for one, am tired of defending my decision to live this way, to you. Rachel
Date: Sat, 26 Jul 1997 11:36:36 -0400 From: Ellen Adams <EllenAdams@AOL.COM> Subject: Re: Colburn to Green Rachel, I'm new to this list but feel that I've known Don for quite awhile through the crohns colitis newsgroup. I think you misconstrue his motives. Don is very knowledgable--particularly with regard to celiacs disease--and I am glad that he provides his insights on these issues. I thought his comments on the letter were straightforward and fair minded. He wasn't slamming the SCD, he was merely correcting errors-in-fact in this woman's letter so that others would not misunderstand celiacs disease. I don't feel his corrections diminish her testimonial as to how much this diet has helped her and her family. It merely adds some information for those who might misunderstand. In fact, in his comments Don says this about the SCD. "No one is arguing that the SCD isn't needed for people with IBDs, just she hasn't presented any evidence that it's needed for someone that only has celiac disease, or that it "cures" celiac disease so people can go back to eating gluten again." I think his point is very valid. I don't think he's even arguing that the diet may be beneficial to those with celiacs disease--just that it may be more restrictive than necessary for those who only suffer from gluten intolerance. Further, he is cautioning those who might perceive themselves to be cured of celiacs disease by the diet from returning to their former eating habits--that certainly isn't a slam of the effectiveness of the diet, more like an endorsement of its effectiveness. I value the information Don provides. He has answered many questions for me. His posts tend to be densely factual and sometimes somewhat clinical--maybe that style is offputting for some people--but I don't think he has ever intended to criticize someone or force them to defend themselves for choosing to live on the SCD. He is merely a person with a lot of information to offer and I feel he does each of us a service by providing it--especially when that means he corrects some misinformation. As to whether the diet is for Don, I believes he follows an even more restrictive form of essentially the same diet. He is not being critical, just factual. Ellen
Date: Sat, 26 Jul 1997 16:52:33 GMT From: Rachel Turet <shodanrt@LIII.COM> Subject: Re: Colburn to Green Dear Ellen, I admit to a flare of impatience that is really quite extraordinary for me. Perhaps you are right and I have misjudged Don's intent and motives in his correspondence. He is obviously highly intelligent and his research thorough. However, I take issue with his repeated "warnings" not to buy into the diet wholeheartedly, not to beleive in a possible "cure" and his questioning of Elaine's painstaking research & theories. I believe that someone coming into the diet ill, and looking for answers must give the diet their all in order to get everything from it. It just seems to me that Don responds to every query with a negetive, proceed with caution, slant. I admit to mimimal knowledge about celiac disease. I have UC. Elaine claims that this diet works miracle for many of those with celiac. Based on my own dealings with the diet and my own healing, I have to beleive she comes from a place of knowledge and experience. I'm only saying that I'd like to see someone of Don's caliber, more supportive and less critical. I was particularly put off with his sentence, " Actually I think I'll ask Dr. Green what he thinks of this letter. I have his phone number around here, and know who to ask for his e-mail address." Is he suggesting perhaps that Elaine made the letter up? If I'm sounding overly defensive, it is my reaction to what I perceive as an attack on Elaine, who has become a dear freind, and on a diet that as I've said before, has impacted my life in an incredibly strong and positive way. Rachel
Date: Sat, 26 Jul 1997 18:35:24 -0400 From: Don Wiss Subject: Re: Celiac disease article Ellen Adams <EllenAdams@AOL.COM> wrote: ><< Then there are some doctors that refuse > to give the diagnosis, as they feel the gluten-free diet is so bad the > patient is better off living with the symptoms. >> > >So bad in what way? Nutritionally bad? Difficult? Unpalatable? There is nothing nutritionally wrong with a GF diet, and generally it is healthier as the patient has to avoid prepared foods. It is difficult. I think these doctors that refuse to give the diagnosis think the diet is boring and unpalatable. Of course it need not be. Many cuisines of the world are close to GF, or like Black African are totally GF. South Indian cuisine is totally GF, and the rest of India has little gluten. Since wheat doesn't grow in hot climates, that is where one would look for GF cuisine. Don.
Date: Sat, 26 Jul 1997 18:51:55 -0400 From: Don Wiss <donwiss @ panix . com> Subject: Re: Colburn to Green Rachel Turet <shodanrt@LIII.COM> wrote: >To be frank with you, I am really beggining to find your cynicism grating. >"There are none so blind as those who will not see". Have you nothing >better to do than continuously question heartfelt praises for a diet that >many of us feel has saved our lives? Never have I said anything disparaging about using the SCD for IBDs. I also put quite a bit of effort into promoting the SCD and this list in alt.support.crohns-colitis, usually via e-mail. I do have a problem with people that argue the diet is required for someone with celiac disease. >If the SCD is not for you, so be it. Matter of fact I am close to being on it, just I also believe that all dairy should be given up. The Paleolithic diet should prevent one from getting all civilizatory diseases. But this has nothing to do with celiac disease. > I >don't think your constant criticism is either needed or wanted here. SCD is >NOT for everyone. Please, either bridle your negetivism or take it >elsewhere. I find it interesting that someone on the mailing list that *I* set up is telling me to leave my list. As a listowner of this list I do have the power to bounce you off the list and keep you from resubscribing. >Unless you've found something better (and years of searching for >an answer has netted me only this diet), I for one, am tired of defending >my decision to live this way, to you. Do you have celiac disease, without a concurrent IBD diagnosis? If not, then what are you having to defend? Or do you have a problem reading what I have written? Don.
Date: Sat, 26 Jul 1997 20:37:46 -0400 From: John Chalmers <johnc@SERV2.FWI.COM> Subject: Comments To All I remember when I was participating in team building sessions at work, several guidelines were given us. One was to never personally attack an individual in the presence of the group. The group was to work together to discuss and reach a consensus. Our group is intended to be like the team I describe above except we may never reach a consensus. We are exchanging information and ideas regarding the SCD which is helping many people. I think that we all have opinions about the SCD diet. There are no doubt those who believe in it in detail to those who believe in parts of it. Elaine is quite a purest about the SCD. She says over and over that she will not change one word of the Master (Dr. Haas). John
Date: Mon, 28 Jul 1997 11:56:49 PST From: ACB <benkea@MAILHOST.PAC.DFO.CA> Subject: Drs. Haas >>Dr. Haas documented curing over 600 cases of >>celiac disease with the SCD in his book The Management of Celiac Disease. > >I have not read his book. If he can show that they can go back to eating >gluten and have a normal biopsy then they should be written up in the >medical journals. If he hasn't done so I have to ask why? Or is this a >semantic issue and he's using the word cure to mean control. Don, The probable reason why, is that he is dead now. Anna
July 29, 1997 Fax to: Mik Aidt From: Elaine Gottschall Dear Mik, If anyone ever again tries to convince me that, unlike newspapers, radio and TV, that the Internet is free of censoring, I will know differently as a result of what has happened these past few months. Just like me in the 1960'ies when our child and family was saved from destruction by the Specific Carbohydrate Diet, Rachel and many others whose lives have also been given back to them, will try and try to keep detractors from undermining the diet and the exciting story of it Throughout this past week I have heard words like "debate", "freedom to differ in opinion about the diet in my book", etc. But all this has resulted in doing and will continue to do is to DESTRUCTIVELY CANCEL OUT the testimonies of the many people whose recoveries have been akin to miracles. In my opinion, a website for the Specific Carbohydrate Diet is not for debate - the truth is IMMUTABLE. You, Kevin Arnold, Cyd Van Meter, Deborah Down, Rachel Turet are well and to that list we can add hundreds of others. It will not work and will not be supportive if for every word in a letter of testimony, someone comes in and undermines its veracity. The website/mailing list is not for debate, it is for two main reasons: (1) to support those who are on the Specific Carbohydrate Diet by exchanging recipes, personal experiences, etc. (2) to offer an alternative to those who are searching because the therapy they are now using has not been successful. It matters not which diet one chooses for celiac as long as the person recovers and that includes the return of a healthy mucosa of the small intestine. If the gluten-free diet does that and the person is satisfied, fine! But as many tell me in their letters, people are going downhill, are continuing to be sickly. They deserve to have a try on the Specific Carbohydrate Diet without their efforts being undermined by erratic and confusing comments. Yours truly, Elaine Gottschall
Date: Fri, 1 Aug 1997 00:49:24 -0400 From: Don Wiss <donwiss @ panix . com> Subject: Re: Fax from Elaine Gottschall Elaine Gottschall wrote: >If anyone ever again tries to convince me that, unlike newspapers, radio >and TV, that the Internet is free of censoring, I will know differently as >a result of what has happened these past few months. Standard policy for mailing lists is to prohibit personal attacks. If the listowner doesn't take action, which can easily be done with Listserv software, then it can degenerate into a flame fest. I'm not on the IBD List, but I get the impression the sides are making personal attacks on the other side. No one has said lists are democracies. Anybody that doesn't like the way a list is run is free to quit. >Just like me in the >1960'ies when our child and family was saved from destruction by the >Specific Carbohydrate Diet, Rachel and many others whose lives have also >been given back to them, will try and try to keep detractors from >undermining the diet and the exciting story of it Rachel made no attempt to debate, she whined instead. I still haven't seen anybody here detract from the diet for people with IBDs.There are no celiacs on this list following the SCD that I am aware of, though there may be a lurking IBSer. All people following it have IBDs. My biggest difference with the SCD is her insistence on including some dairy, but I haven't said to anybody here they shouldn't include it in their diet. >Throughout this past week I have heard words like "debate", "freedom to >differ in opinion about the diet in my book", etc. But all this has >resulted in doing and will continue to do is to DESTRUCTIVELY CANCEL OUT the >testimonies of the many people whose recoveries have been akin to miracles. I see everything is testimonials. I guess this sells books and brings in royalties, but one gets respect from the medical community by doing studies in a little more controlled manner. Any study would have a medical professional test before and after, and not rely solely on what someone, never even met in person, says. Do note that Wolfgang Lutz does have respect. But then he has published in peer reviewed medical journals, which gives lots of respect to the author. His "The Colonisation of Europe and Our Western Diseases" in Medical Hypotheses is especially well regarded. Nor do I see how debate will destructively cancel out people's recoveries, and they may even be able to improve on them. Doesn't she admit that the SCD isn't for everybody? I guess she casts those people aside, instead of adapting her diet to their specific needs. >In my opinion, a website for the Specific Carbohydrate Diet is not for >debate - the truth is IMMUTABLE. Maybe for IBDs, but the evidence isn't there that it is needed for gluten intolerance. Nor is it immutable that people on her diet are "cured" as she claims. Using a hyped word, instead of controlled or in remission, is probably the biggest reason she doesn't get much respect from the medical profession. >You, Kevin Arnold, Cyd Van Meter, Deborah >Down, Rachel Turet are well and to that list we can add hundreds of others. Hopefully it's up to thousands of others by now. >It will not work and will not be supportive if for every word in a letter >of testimony, someone comes in and undermines its veracity. The >website/mailing list is not for debate, I think the word for this is being hypocritical. Elaine Gottschall is not a listowner of this list. I set it up and then asked John Chalmers if he would serve as "primary listowner." Debate will be allowed on this list. If Elaine can't accept this, then she is welcome to go set up her own list. Anybody can set up mailing lists. I'll even suggest a place where she can do it, and the rates they charge are reasonable. If she uses just a tiny fraction of her book royalties to pay for the list, then no one can question that it is her list. She can then set any rule she wants. Information on the home I'd suggest for "her" list can be found at: http://www.l-soft.com/ease-home.html Some suggestions for debate that I'd like to see on this list: (1) Differences between Lutz's diet and Elaine's. (2) Discussion of the differences of Dr. Walter L. Voegtlin's diet as found in "The Stone Age Diet" which he self-published in 1975. (3) Starting on spring water and an elemental diet, then adding foods to see what bugs you or not. As based on Crohn's Disease: Maintenance of Remission By Diet. Alun, Jones, ... et al, Lancet. Volume V.II, 1985. Pages 177-180. (4) Pros and cons of including dairy in the diet. And of using dairy-free acidophilus instead. >and that includes the return of a healthy mucosa of the small intestine. If >the gluten-free diet does that and the person is satisfied, fine! But as >many tell me in their letters, people are going downhill, are continuing to >be sickly. One of the problems is the extreme difficulty in following a gluten-free diet without support. The first book to help people wasn't written until more than 20 years after they announced that the gluten-free diet was the way to go. The first support group wasn't started until even later. How was someone to know where gluten was hidden in foods? I'm not even sure how good the labeling laws were back in the 50's. I even know adult celiacs today, that go it alone and despite trying, have a diet that is far from being gluten-free. I don't think it is possible to be GF without some outside knowledge helping you. >They deserve to have a try on the Specific Carbohydrate Diet >without their efforts being undermined by erratic and confusing comments. But none of those people are here! If they were I'd help them analyze what they're eating and help them find where the hidden gluten is slipping in. Don. An SCD Listowner.
Date: Tue, 29 Jul 1997 20:04:44 -0400 From: Don Wiss <donwiss @ panix . com> Subject: Celiac Disease, was Re: Drs. Haas Dale Howe <Topster@E-TEX.COM> wrote: >I have a >question, and I kinda feel dumb for not knowing, but what is Celiac >disease? Very simply it is intolerance to gluten. Gluten is a *protein* that is found in all wheat (more so in bread and pasta), but also found in lesser quantity in spelt, rye, barley, oats and all foodstuffs containing one of these grains, including many food chemicals like hydrolyzed vegetable protein (called "flavorings" or "natural flavors" in the ingredient list). Gluten in celiacs has four major effects: (1) antibodies against it are produced by the body and are circulating. They can create skin, joint and neurological problems. (2) The intestinal villi are compromised and minerals and vitamins are malabsorbed. This can lead to all sorts of non-specific deficiencies. (3) There can be a leaky gut which allows peptides to get through that shouldn't. They can accumulate in the kidneys and possibly get through the blood brain barrier if that is compromised for some reason, and (4) addictive opioids can be formed in the gut causing the person to crave gluten containing foods. The condition is controlled with a strict gluten-free diet. It is not considered an IBD. For more information this page points to all Net resources: The Gluten-Free Page: http://www.panix.com/~donwiss/ > Those of you who missed my post, I have Crohns. Celiac disease can be concurrent with Crohn's. I doubt many get the second diagnosis, as once the Crohn's one is made they stop looking. But if you're on a strict SCD you would also be on a gluten-free diet. Don.
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