Debate and concern about the Specific Carbohydrate Diet [4] Date: Wed, 21 Oct 1998 09:15:50 PDT From: "Trish Larson" <trishl@hotmail.com> To: SCD-list@longisland.com Subject: Re: quitting SCD- Erik I was on a diet very similar to SCD for 5 months prior to starting SCD. It was essentially the same except for potatoes and white rice. I stuck to the diet very closely, the only exceptions were that I pureed a few additional cooked veggies into the soup. (My naturopath said she had never seen anyone stick to a diet as well as me) I was not able to stomach either the yoghurt or the DCCC. After two weeks I had lost an additional 10 lbs. (above the 15 - 20 I had already lost on the previous diet (all under the guidance of a naturopath)& the 30 lbs under weight for my body size and shape) I am also intolerant of chicken, turkey, & eggs. For those who have had the test from the Great Smokies lab my Fecal sigA was 900 (44-180 is normal). My last colonoscopy (near the end of being on the diet) showed increase (now total) inflammation of the colon. On the diet my continual pain stayed the same, my D increased, my amount of blood increased, I was so weak that I was no longer able to work more than 0-3 hours a day, and my wife said that my personality changed and that I was not the same person she married. Since going off the diet I've essentially stopped bleeding, minimal D, less fatigue, but increased gas, mucus, and slightly increased pain while eliminating. (and I've gained 20 lbs in two + weeks) My dad had his colon removed before I was born and lived a very active (hiking / biking / skiing / camping / canoe trips / 5 kids / etc.) life. I am unable to work a full day at a desk job or leave my house at night. After much thought, reading, discussion with my family (and those with ostomys) and prayer, I've scheduled the surgery for a few weeks out. I'm glad that the diet seems to be working for most of you, and I wish that it had for me, but I feel that I can no longer deal with the continual pain and being unable to lead a "normal" life. My dad had 1000 times the life I have now. Sorry this was so long, but it feels good to write it out and think through things one more time. God Bless and good luck, Erik Larson (UC) From: "paulah" <paulah@cmc.net> To: <SCD-list@longisland.com> Subject: Re: Cholesterol and Health Concerns >A great explanation of why the SCD works to improve our health and >normalize weight can be found in the book: > > The Schwarzbein Principle > The Truth About Aging, Health and Weight Loss > by Diana Schwarzbein, M.D., and Nancy Deville > Yes, this information is also explained in the book :Protein power by Michael R. Eades, M.D. and Mary Dan Eades, M.D. There are some good articles at their website www.proteinpower.com
Date: Wed, 4 Nov 1998 13:06:43 -0500 From: Midas Gold <midasgold@PIPELINE.COM> Subject: NEWS FLASH!! CCFA ACKNOWLEDGES SCD!!! CCFA members: check your snail-mail today - I just received CCFA's "Foundation Focus" magazine, with a cover story on nutrition (imagine that!). The extensive article mentions Elaine Gottschall and BTVC: "One diet that generates much comment is the specific carbohydrate diet, presented by Elaine Gottschall in _Breaking the Vicious Cycle: Intestinal Health Through Diet_. The rationale for this diet is that carbohydrates that require no digestion are less likely to overly stimulate intestinal bacteria, and thus, the inflammatory symptoms of IBD. "'There are no controlled data to support the use of the Gottschall diet,' notes Dr. Greenberg. 'Although the diet is balanced and varied, a potential problem is that patients often lose weight when adhering to a specific diet. I would strongly advise patients interested in following this diet to do so only under the supervision of physicians and nutritionists." OK, so it's not a glowing recommendation, but it's not critical either, and I'll bet it'll stimulate readers' interest. I consider this a coup for Elaine and SCD, as the diet has now been publicized to the vast masses of IBD patients who may never have stumbled across SCD before, but who do receive "Foundation Focus." -- Deanna
From: leos@surfnetcity.com.au To: SCD-list@longisland.com Subject: PLEASE HELP ME I haven't been regularly reading the posts from this list. We have been struggling. I can tell you, I am close to giving up on the SCD. I am desolated, devastated. I do not know what to do. Life is hell. Waking up in the morning is an experience fraught with horror. My daughter has been on the SCD since Boxing Day 1997. For ten months we have not cheated. For ten months I have become so polysaccharide-aware that I almost have a pathological hatred of starchy sugary foods, on my daughter's behalf. At first the diet seemed to be working - albeit slowly. It took almost six months to wean her off cortisone. For 2 1/2 months this year she was off all drugs but not really well. She lacked energy and appetite, was weak and listless, still was going to the toilet several times a day. Yet she was managing well enough to go to school again, at least a few days per week, and we were filled with hope - at last she was off the drugs. We thought things could only get better. In the middle of August this year she caught a cold. This triggered a flare of her symptoms. We battled on with the diet but eventually things got so bad she had to go back on cortisone. She has been on cortisone for 13 months out of the last 15. This is so bad for her little body, I cannot bear to contemplate it. NO-ONE, least of all a child, is supposed to be on cortisone more than 3 months out of 12. This drug may be giving my baby a bearable present life but what is it doing to her future? She is still on cortisone. Over the last two months we have had to INCREASE the dose, not decrease it. Currently she is on the highest dose she has ever had. What's more, the doctor recently tested her blood and all the readings for vitamins, minerals and amino acids came up dangerously low. The doctor was shocked and immediately ordered intravenous vitamin transfusions. The result immediately after the first transfusion was amazing. My daughter actually started to laugh and speak, and her cheeks were pink for the first time in months. She has not been absorbing any goodness for months. All the supplements I give her are not doing her any good. How can she heal if she is not being nourished? She had the vitamin levels of a famine victim. If you could see this child you would know why I am crying and dying inside. She is as sweet as an angel. She does not complain, but eats and drinks all the strange concoctions set before her, and tries to smile and says she will be better soon. She is the dearest little thing who just wants to be well enough to play with her friends and go to school to learn about plants and animals, so she can be a botanist or a vet. She has never hurt anything or anyone and sometimes I just cannot believe that such a thing could happen to such a dear, darling person. She has not even had the chance to have a childhood. I would rather, a million billion times over, that it was me. So after ten months on the SCD we are back to square one. I had such hope and faith. But what do I do? I feel like giving up on the diet but what choice do I have? My daughter is only eating meats, cooked fruits and cooked vegetables. This is SO LIMITING. I sometimes wonder if it is just another tyranny I am imposing on her, in addition to the tyranny of illness. She does not like nut flour, and the book does not recommend it when there is D. She is not keen on eggs, and ditto for eggs. She does not like the taste of the yoghurt and besides I have doubts about her tolerance of it. Honey is out of the question for her and the only seafood she likes are prawns. Sometimes she will have some cheese. Please, tell me what am I supposed to feed my daughter? She has meat and cooked fruit for breakfast, meat or home-made soup for lunch, meat and cooked vegetables for dinner. The meat varies - I buy lamb, beef, pork, chicken, turkey, organ meats. The fruit these days is mostly canned - the labels state it is sugarless. I try to make the evening meals as varied as possible but I am terrified she is not having a balanced diet, that by these food restrictions I may be contributing to her malnutrition. I just need help. I need good advice. I am so close to giving up, but at the same time I am scared of the consequences. Cecilia Thornton-Egan.
Date: Tue, 3 Nov 1998 16:37:59 -0500 From: "Shaz Bisset" <shazb@sentex.net> To: <SCD-list@longisland.com> Subject: Re: PLEASE HELP ME Dear Cecilia, I am sorry that I don't have any wondrous advice to give you. I cried when I read your story about your wee one. I have three young daughters and could not imagine your pain. I am on the SCD as well as my young niece. She has had a similar history to your daughter in the first year on the diet. She has now been on it for 3 years and her life has turned around. I hope that some more time on the diet will heal your daughter. I wish you all the best and will remember you and your daughter in my prayers. God Bless Shaz Canada
Date: Tue, 03 Nov 1998 14:01:34 -0800 From: mpetee <mpetee@nas.com> To: SCD-list@longisland.com, leos@surfnetcity.com.au Subject: Re: PLEASE HELP ME Its so sad to hear this...with a child. Have you tried avaoiding fruit for a few weeks??? All fruits, cant even trust the canned sugarless variety as fruit and canned veggies tend to be washed ih a mild food grade detergent when processed at the plants(ive worked in one). Also Lamb can be hard to digest more than most meats. Organ meats can be tough too. Good luck and dont give up.
Date: Tue, 03 Nov 1998 19:04:00 -0500 From: Midas Gold <midasgold@pipeline.com> To: SCD-list@longisland.com Subject: Re: PLEASE HELP ME Cecilia, writing as one mother to another, and especially as a mother who has also cared for a chronically ill child, I deeply wish I had answers for you... First, if the IV vitamins seem to help, by all means stay with them. Perhaps keeping your daughter's vitamin counts up is what will make the difference, and help the diet to help her. Elaine writes that everyone on SCD should have a B12 level on the high end of normal in order to benefit most, and recommends injections to get it there - so even she recognizes that the diet needs a boost sometimes. Reevaluate the situation after you've followed a course of IV vitamins for a while - hopefully things will seem more hopeful then. In the short time I've been on this list, I've come to know you as among the most dedicated, knowledgeable, and resourceful practitioners of this diet. If SCD is right for your daughter, I can't imagine anyone more qualified to implement it properly and unerringly than you have been. If, after all you've done, you're finding that you need to try something else, then at least be at peace with the fact that you've certainly done this diet justice. Any apparent mismatch between SCD and your daughter is not your fault. Elaine herself writes that the diet will not work for everyone. I think most people would agree that not every treatment is right for every person. We are all individuals, and finding the particular path that works for each of us is almost always a struggle. Don't be afraid to strike out on a new path. Take the same incredible energy that you've devoted to SCD, and put it to work on your next project (whatever it may be - I wish I had one to suggest to you); with your kind of perserverance you're bound to find the best possible course for your daughter, sooner or later (please G-d let it be sooner). I wish you and your family only the best. -- Deanna
Date: Tue, 3 Nov 1998 19:29:52 EST From: PanthaProd@aol.com To: SCD-list@longisland.com Subject: Re: PLEASE HELP ME Cecilia, My heart is breaking to hear what your little girl and you are going through. Sometimes it is so difficult to find the answer but I know it's there. You just have to keep experimenting and trying different things. Has she been tested for an overgrowth of candida or for parasites. If so was it at just the hospital lab or was it one of the more reputable labs such as the Institute of Parasitic Disease or Great Smokies. The hospital lab did not find parasites in my stool specimen but The Institute of Parasitic Disease did. They also found an overgrowth of candida. I am off of all fruits for 3 months along with taking a candida purge product. If I have fruit at all, I'm back to square one. Since I've started dealing with the candida I am slowly, finally progressing and able to eat more and gain weight. Please don't give up on the diet, just try eliminating a few things or adding others. Does she take any form of acidolphilus? Please continue to let us help you and give you ideas. And don't hesitate to email me with any questions about any of the above. You and your child are in my heart and my prayers. Love, Lois
Date: Tue, 3 Nov 1998 19:56:24 EST From: CANDSURF@aol.com To: SCD-list@longisland.com Subject: Re: PLEASE HELP ME My mother and I both have CD and I pray every night my son never develops it. There is no pain greater than seeing your child hurting. I am sorry that I have no advice since I just started the diet, but know that your daughter will be added to our prayers and we want to wish you the best of luck. Lori
Date: Tue, 3 Nov 1998 20:22:32 -0500 (EST) From: The Hansens <kilmory@erols.com> To: SCD-list@longisland.com Subject: Cecilia Your story is so sad! There are many things you did not say in your long message. Which disease does your daughter have - CD or UC? How old is she? How much prednisone does she take? Does she take vitamin supplements? You seem to be in Australia. How about trying busesonide (sp?), which should be available there? It is not here in the States yet, but supposedly has fewer dangerous side effects. Do you have a GI specialist? You ask what to feed her, yet rule out so many foods like the nut flour, eggs, honey, yogurt, etc. Most of us find ways of making the breads tasty with honey, but you might be able to use an artificial sweetener. What about cheese? Good luck, Bart ------------------------------
Date: Tue, 3 Nov 1998 17:34:24 -0800 From: "Alpaslan" <alpaslan@2xtreme.net> To: <SCD-list@longisland.com> Subject: Re: PLEASE HELP ME Dear Cecilia, Reading your story was a very moving experience. It his hard not to be affected by all that you have written. To help you out here are some suggestions. Stress is one of the important factors in IBD. Do not be so hard on yourself. You write.. "I am desolated, devastated. I do not know what to do. Life is hell. Waking up in the morning is an experience fraught with horror. " You need to calm down in order to help your child. If there are other elements of stress in your life, try to eliminate them. Your child could be affected simply by watching your frantic state. You write very well ... so even I was affected by your excitement. Take it easy, calm down. My doctor gave me Prozac. It helped a great deal. We are most of us under much stress. You area not alone in this. ---------- There are many delicious recipes within this diet. Try to take advantage of them. There are also some excellent cooks on this list server. They post interesting concoctions almost daily. Have you tried some of them. Do you have a copy of Elaine's book . Have you tried most of the recipes in it. Have you tried to perk up your meats with onion and garlic and tomatoes and spice your meats and vegetables or do you feed her boiled chicken, boiled beef, boiled ham, boiled vegetables? I personally find this diet to be one of the easiest to adhere to. I also find it absolutely delicious. I suspect that I am not alone in this. ---------------- Continue intravenous vitamin transfusions. She must not be with out vitamins. ----------------- Suspect all canned foods ... including fruits and vegetables. Most of us on this list have found many strange ingredients in the weirdest places. Canned tuna which I thought was pure turned out to contain vegetable broth and Soya protein... sugar pops up in almost all sausages and smoked meats, lactose turns up in the pills that I have to take for my gut condition. Apple juice proclaimed pure on the label turns out to contain sugar. The hardest part of the diet is to ferret out the bad actors in processed foods. I personally prefer to start from scratch and use basic materials. I don't trust any processed foods at all. ----------------- You wrote : "I sometimes wonder if it is just another tyranny I am imposing on her........" --- what other tyrannies are you imposing on her ? If you are, don't. ------------------ It took Elaine I think two years to pull her daughter out of her misery. This diet is a long term proposition. It works in time, not quickly. And there are ups and downs and flare-ups sometimes. So one must have faith and a calm mind to stick with it over the long haul. ------------------ Most of all remember that you are not alone in this. Misery loves company, and you have a lot of company here on this list and in the world at large. My prayers are with you. Alpaslan
Date: Tue, 03 Nov 1998 21:02:45 -0800 From: James & Cathy Yokota <james.yokota@mci2000.com> To: SCD-list@longisland.com Subject: Re: PLEASE HELP ME Dear Cecilia, I'm so sorry about what you and your little girl are having to go through. Please keep on trying because I know you'll find an answer for her eventually. She sounds so brave, and you are a wonderful mother. I do have one idea. Towards the end of your e-mail you were talking about what you've been making her for dinner, and you said, "...the fruit these days is mostly canned - the labels state it is sugarless." According to BTVC, labels can be deceiving and some companies do in fact add sugar and starches without listing these products in the ingredients list. Maybe staying away from ALL canned foods (even fruit that appears to be okay) will be one tiny, healthful step in the right direction for her. I hope this helps, and my prayers are with you. Sincerely, Cathy Yokota
Date: Tue, 03 Nov 1998 21:05:02 -0500 From: "Serge, Luba" <lserge@odyssee.net> To: SCD-list@longisland.com Subject: Re: PLEASE HELP ME Dear Cecilia, As a mother with a daughter who has CD my heart went out to you when I read your letter. Our children are so patient, good and trust us to know what is best for them. My daughter has not been on the SCD as long as yours and she is still taking medication so I don't feel very qualified to answer your questions. Lara has been doing well and her energy levels have been astounding, especially given how sick she was this spring during her 5 weeks at the hospital. She also is taking supplements and I wonder if some of these have helped. I'll just mention a few, in case you haven't considered them (the descriptions come from Balch & Balch "Prescription for Nutritional Healing"): NAG - N-Acetyglucosamine - A major constituent of the barrier layer that protects the intestinal lining from the digestive enzymes and other potentially damaging intestinal contents. Omega 3 (she takes flaxseed oil in the morning & salmon oil at night) - needed for repair of the digestive tract; reduces inflammatory processes... L-Glutamine - A major metabolic fuel for the intestinal cells; maintains the villi, the absorption surfaces of the gut. Pantothenic Acid (vitamin B5) - ...helps to convert fats, carbohydrates, and proteins into energy. It is required by all cells in the body and is concentrated in the organs...prevents certain form of anemia. It is needed for normal fuctioning of the gastrointestinal tract... Quercetin - slows histamine release; helps control food allergies. Needed for a variety of enzyme funcitons. You may know about these already - I'm no expert & it has been a bit of a hit or miss (with some guidance from a naturopath). I recently spoke to someone who has a 16 year old with Crohns & has been symptom free for 4 years, taking only asacol. They have imposed some dietary restrictions but she attributes part of her daughter's recovery to reflexology. I'm thinking of looking into this as well. I understand that each case is different & to some extent we have to adjust the way the disease is treated. I wish you luck and courage. You will be in my thoughts. Luba
Date: Wed, 04 Nov 1998 05:15:32 -0500 From: Deborah Idol <cat@cloud9.net> To: SCD-list@longisland.com Subject: Re: PLEASE HELP ME Hi Cecilia, > I haven't been regularly reading the posts from this list. We have been > struggling. I can tell you, I am close to giving up on the SCD. Please don't give up on the SCD! The SCD is not the ONLY thing needed to heal severe cases, but your daughter will never be well if she goes back to a typical western diet! > She has been on cortisone for 13 > months out of the last 15. This is so bad for her little body, I cannot > bear to contemplate it. I'm so very sorry to hear this; it is dreadful for her :-(... > What's more, the doctor recently tested her blood and all the readings for > vitamins, minerals and amino acids came up dangerously low. The doctor was > shocked and immediately ordered intravenous vitamin transfusions. Thank heavens your doctor thought to do this! Even with the diet, many people can't heal unless they take supplemental nutrients, and many of us are so damaged we just can't absorb nutrients from food or pills. > The > result immediately after the first transfusion was amazing. My daughter > actually started to laugh and speak, and her cheeks were pink for the first > time in months. She has not been absorbing any goodness for months. All > the supplements I give her are not doing her any good. How can she heal if > she is not being nourished? She had the vitamin levels of a famine victim. > If you could see this child you would know why I am crying and dying > inside. What you have to do, is be encouraged, and not give up!! You have found the answer -- your daughter needs IV vitamins and the SCD, not just one or the other. If you can persuade your little girl's doctor (and he sounds like a reasonable man) to give her really large (mega even) doses of B12 and folic acid, plus extra B6 in addition to everything else he has given her, and if you can persuade him to keep it up, and not stop the IV vitamins at the first sign of improvement, you will be amazed at the results. Folic acid especially (in amazingly large doses, sometimes) is needed to heal the gut, and prednisone depletes it. An injured gut will not absorb nutrients, and in addition, chronic diarrhea depletes nutrients at an alarming rate (make sure he gives her calcium and magnesium -- magnesium is likely to be especially deficient, and she needs calcium plus Vitamin D for her bones after having taken cortisone for so long). > She is as sweet as an angel. She does not complain, but eats and > drinks all the strange concoctions set before her, and tries to smile and > says she will be better soon. She is the dearest little thing who just > wants to be well enough to play with her friends and go to school to learn > about plants and animals, so she can be a botanist or a vet. She has never > hurt anything or anyone and sometimes I just cannot believe that such a > thing could happen to such a dear, darling person. Your daughter does indeed sound like an angel ;-), and I'm sure she'll be a healthy angel, one of these days. But it will take time and dedication, which you obviously have, and continuing the IV nutrients in addition to the SCD. > So after ten months on the SCD we are back to square one. I had such hope > and faith. But what do I do? I feel like giving up on the diet but what > choice do I have? > My daughter is only eating meats, cooked fruits and cooked vegetables. This > is SO LIMITING. Well, yes it is limiting, but try cooking the fruits yourself instead of using canned ones. If you microwave cut up fruit uncovered in a bowl until very soft it will taste delicious, totally unlike canned! Even though summer's over, apples and pears are available all year around in qualities that are perfectly fine for cooking. Try adding butter and salt to well cooked (but not boiled) vegetables, and if your daughter likes it and can tolerate it, some onion (well saut=E9ed until very soft and somewhat browned), shallots, garlic and or ginger (last two very well chopped and saut=E9ed in butter). If you use Keller's European Style Butter (also sold as Plugra) which is by Hotel Bar Butter and is unsalted, it will make everything taste better. Try to get really good quality meat, no easy task these days! Your daughter is probably very sensitive to an overload of bacteria in meat and can easily get food poisoning (that can be mistaken for intolerance of all sorts of foods) from meat that isn't very fresh; this can set her back and irritate her gut for weeks. > She is not > keen on eggs, and ditto for eggs. See if you can get eggs freshly laid (perhaps someone nearby keeps chickens?) and see if she likes really really fresh eggs made into an omelet cooked with good quality butter. I always hated eggs, but didn't realize until I tasted fresh ones, that what I hated was old, spoiled eggs, the only kind one can find in the supermarket. > She does not like the taste of the > yoghurt and besides I have doubts about her tolerance of it. Do you make it in either a Yogourmet II or in an oven with a light bulb? Most yogurt makers keep the yogurt at too high a temperature (the Yogourmet solves that problem by keeping the container in a water bath), and the resulting product tastes terribly sour. > Honey is out > of the question for her and the only seafood she likes are prawns. > Sometimes she will have some cheese. > Please, tell me what am I supposed to feed my daughter? > She has meat and cooked fruit for breakfast, meat or home-made soup for > lunch, meat and cooked vegetables for dinner. The meat varies - I buy lamb, > beef, pork, chicken, turkey, organ meats. The fruit these days is mostly > canned - the labels state it is sugarless. I try to make the evening meals > as varied as possible but I am terrified she is not having a balanced diet, > that by these food restrictions I may be contributing to her malnutrition. This is actually a very nutritious diet (meat, veggies and fruits -- will be better when a few nuts can be added), just a bit boring, unfortunately. You are absolutely not contributing to her being malnourished! That is caused by having a disease that irritates and injures the gut to the extent that nutrients are not absorbed! Then drugs which exacerbate the deficiencies are taken for the disease , and the condition worsens. It's a real vicious cycle, as the title of Elaine Gottschall's book says, resulting in a downward spiral. This can be reversed with IV nutrients (especially large quantities of folic acid to heal the gut, and others which are particularly deficient in UC and CD patients) over a long period of time, and strictly adhering to the diet. > I just need help. I need good advice. I am so close to giving up, but at > the same time I am scared of the consequences. If these things do not help, then you probably have to investigate the possibility of parasites, and I would certainly have your daughter checked for candida overgrowth, which is practically inevitable after taking cortisone. Good luck!! Take care, Deborah
Date: Wed, 04 Nov 1998 09:18:14 -0500 From: Sallyanne Smith <ssmith@psrw.com> To: SCD-list@longisland.com Subject: RE: PLEASE HELP ME Cecilia, I'm so sorry to hear the news of your daughter. Please know that you are both in my prayers. Sally
Date: Wed, 4 Nov 1998 14:28:24 -0500 From: "Paula Sirois" <psirois@hunterdon.csnet.net> To: <SCD-list@longisland.com> Subject: Re: PLEASE HELP ME Cecilia, I send my deepest prayers to you and your daughter. There is a profound connection between us all, and I know that there is great power in the love that binds the hearts gathered here. Please know there is immeasurable power in love and heartfelt prayers... and that your daughter can make a turnaround, even when the evidence supports the view that she is declining. There is little room for doubt in your experience; it is self-defeating. Keep your focus on her continued improvement, as we all will, and keep your heart open to the possibility that it may well be something simple, like the fruit, that is causing the decline. Trust your instincts. You are extremely fortunate that your beautiful daughter is cooperative with the diet. Experiment by cutting out the foods you believe are suspect for a week or so. And watch for the small signs of improvement that tell you which foods are the right foods for her now. Simplify her diet, especially while she is on the IV vitamins, to reduce the stress on her digestive tract. Soup and vegetables are soothing, healing, nourishing foods. Keep her off anything that you are unsure about. Remember, this is a temporary setback. As with my son, I believe your daughter is indeed an angel, teaching us about the vast power of the human spirit. Never underestimate the power of your focused intentions imbued with love. Paula
Date: Wed, 4 Nov 1998 15:06:46, -0500 From: DCournoyer@prodigy.com (MR DAVE COURNOYER) To: scd-list@longisland.com Subject: Cecilia -- [ From: David Cournoyer * EMC.Ver #2.5.3 ] -- I know you've gotten lots of advice but here's another bit. Theoretically, supplements are good but some bother some people. The hard pressed ones in particular irritate my husband's insides and leave in approximately the same form they entered. You might consider eliminating all supplements for a few days (I believe most allergy books say four days to eliminate something from the body) and then add then one by one. Just a thought. Your daughter doesn't seem to be deriving benefit from them anyway so if one if irritating her. . . Shannon (UC and Lyme Disease) Idaho
Date: Fri, 6 Nov 1998 16:22:15 +0930 From: "GP & Dani." <danigp@topend.com.au> To: <SCD-list@longisland.com> Subject: Re PLEASE HELP ME Dear Cecilia I'm so sorry to hear about your daughter. I wish I had some words of advice regarding the SCD but I'm too new to it. If I was living close by I'd come and give you a huge hug, it sounds like you could do with some TLC and maybe a break from the constant trauma of this disease. Don't give up, it sounds like your daughter has that brave fighting spirit, I wish you both well and I have a small gift for your daughter that might put a smile on her face, its a tropical Australia joke! Q. Why did the frog cross the road? A. To see his flat mate.(I know its a bit sad but kids seem to like it) Dani (UC)
Date: Fri, 6 Nov 1998 07:11:50 -0800 From: rosset@juno.com (Lucy Rosset) To: SCD-list@longisland.com Subject: Cecilia Dear Cecilia, Have you tried the fresh vegetable juices? Elaine says they are OK to have even when D is a problem. If your daughter did so well with the vitamin infusion, it seems the fresh juices might help. A sweet, mild juice I like is: A couple of carrots, 1/4 beet (raw), 1/2 cucumber, 1/2 stalk celery. A good juicing book is The Juiceman's Power of Juicing, by Jay Kordich. I've tried many combinations from his book that I have liked. When I used to get gastritis attacks, the ONLY thing that got my stomach lining to heal was carrot, cabbage and celery juice. One last tip. If your juicer doesn't make a perfectly smooth juice, I would recommend straining it. I have an Acme and a Champion. The Acme makes a juice as smooth as milk, which I really like. The Champion lets a certain amount of roughage through which I feel has a disagreeabe flavor and texture. I know you said she doesn't like yogurt, but have you tried it made with the 1/2 and 1/2? It has such a great texture and is so sweet. Do keep us posted, and we'll hope the infusions help get her back on track. Lucy
Date: Fri, 8 Jan 1999 22:12:34 EST From: CTFUTURES@aol.com To: SCD-list@longisland.com Subject: Re: SCD In a message dated 1/8/99 4:49:45 AM Pacific Standard Time, Teagan96@aol.com writes: << Also I have noticed that I can't tolerate the eggs in the diet. Has anyone else had to fine tune it more? I am questioning the dairy for myself. >> Sue, I could not tolerate the almond flour, honey, eggs or fruit. I have been on this diet for 20 months and it has restored my health. You may need to make adjustments. My story can be found at: http://members.aol.com/ctfutures/CFS-secondchance-index.html Hang in there, Carl
Date: Wed, 24 Feb 1999 19:34:41 EST For what it's worth, I couldn't tolerate Asacol and I tolerate sulfasalazine just fine-up to the max dosage as a matter of fact. But everyone is different, and sulfa is a big allergen for a lot of people. They started me VERY slowly on it at first. And as for the diet, I had been on it since Jan. 1 and got so sick sulfasalazine wasn't enough anymore, and had to start Prednisone, which I am now trying to reduce. I stopped the diet Sat. and feel better today than I have this entire year on the diet. I am very disheartened because I was convinced that the diet was going to be my miracle cure and I was fanatical about it. But I felt I had to stop it to continue my Prednisone weaning, and couldn't while still on the diet. I don't know what, if anything, I was doing wrong, but I also had lost 10 pounds that I could ill afford to lose. And just when I announced I was going to stop the diet, the mail came and my mom surprised me with an arrival of nut flour! And she bought me a yogurt maker too! I don't want to give up, just atleast get back to baseline. There is a Crohn's Symposium being put on here Sat. and I am going and will ask them about what they think about SCD-but then these are MDs, so we probably can guess what they will say. Good luck! Lori
Date: Wed, 10 Mar 1999 22:38:46 -0500 (EST) Okay, I've been reading all the great posts about getting some science (and some will power) for the diet and doing something about getting the medical community to accept the SCD. I haven't finished reading all the posts but I have to say my bit about the scientific study of the SCD. Please don't flame me if I'm off track or too serious, just gently tell me to stay out of it! ;) This is a long email so for those of you that aren't prepared to read the entire thing, quit now. First let me start off by saying ALL ideas are great and some of them, like raising money and awareness of the SCD would certainly raise eye-brows about the diet's potential and might get us "noticed." I have been thinking for A VERY LONG TIME that real scientific research should be conducted on the SCD, but I am only ONE research scientist (post-doctoral fellow at the moment) and a team is needed to undertake such an important study. All of our GI's say "there is no scientific proof for the diet." We have no ammunition against this comment - no large scale studies etc... so it is pretty much true! There is only anecdotal evidence- which is good but you can't get anyone to believe you just because you say "I swear it works...it has helped person a, b and c. So thus far, the docs are right. I'm pretty sure that there have been many GI's or basic researchers that have tried to study diet and IBD and are still at this very moment running studies on diet and IBD. Perhaps not specifically the SCD but if you read Dr. Lutz's book (I think parts of it have been put on the scd-web site), you'll see that there has been some science done on diet. However, there are a number of HUGE challenges to conducting a study on diet. To say the least, one would need to help of nutritionists, chemists and yes GI docs to run an appropriate and scientific study (oh ya and researchers like me ;-)) So, having said this, let me tell you about a few of the *extremely important* issues that I have thought about while reading these emails and thinking SERIOUSLY about running a study about the SCD. Man, how I'd love to get real data on this diet and PUBLISH it! I think it's possible but will be VERY hard to do b/c of opposition and the science/medicine knowledge required.... As I said, don't think that IBD researchers and GI's haven't tried studying diet before. Many GI's at one point, I'm sure, want to put some merit in diet but have truly failed to find results for any number of reasons. For example, there are very few patients that stick to any sort of serious diet (just like some aren't compliant with meds) and as we all know from this list, even we all have trouble. An important question for a study on the SCD and IBD would be "how will we know whether a person in the study is compliant (like us) with the diet." I'm sure one way around it is to have people that are on this list and committed to the diet be the study participants, but this too takes away a bit from the true science of such a study (although I can make the arguement that we are probaly the best people to use...). So, in order to make any attempt at empirically testing the diet is to have people stay on it 10000000% for as long as the study goes on it without quitting. VERY tough. Another research issue that GI's are frequently concerned about with a study on diet and IBD is a CONTROL group. By a control group (i'm sure you all know what this is but just humour me) I mean a group of people NOT on any diet. Perhaps it is also important to have another group of people on a modified diet. These people are matched in age and symptoms and duration/severity of disease. This is typically how clincial studies are done (i.e. with meds) where you have the ability to make COMPARISONS between the groups about relapse rate, progress, reduction of symptoms both subjective and upon medical examination....blah blah blah... Another question is: How do we control for things like the type of meds people are on or off or going on and off... Yet another point: We NEED clinical data from scopes and blood work and all that stuff that only GI"s can provide if we are going to talk about this diet helping... subjective comments about decreased BM and pain are helpful but the medical community doesn't go for that stuff exclusively. Anyway, I can go on very seriously on this topic for a while because there are SOOOOOOO many study issues that arise if one wants to get something important like this done. Also, we would for sure have to recruit a GI doc for the study as there HAS to be some kind of medical supervison of patients (I think). Sorry if you think I'm against this BUT I"M NOT!!! I want this research to be done but we can't do it alone. I just wanted to point out some of the issues that are involved in research like this (and of this importance). If we can organize a group of professionals I'll GLADLY BE INVOLVED IN THE STUDY!! Thank you for listening to my ranting.... Respectfully, Marla (UC, Toronto)
Date: Sun, 11 Apr 1999 11:20:40 -0700 A thought: CCFA's latest newsletter, Focus, had an article that said that food MAY have a bearing on CD and that it was worth a try. SCD was mentioned as being popular; the article said that any structured diets have the drawback of causing people to lose weight. This list gives many stories of people losing weight initially, then gaining the proper amount. A couple of people have mentioned that vitamin B5 helped them wean off of Pred. As far as the diabetes goes, all I can suggest is that you leave the honey, dried fruit, juice, and other really sweet things out and exercise daily (a walk is fine) until you get off insulin. Maybe you even need to cut out fat for awhile - I'm not sure about that. We just had a rousing discussion of the benefits and drawbacks of 'scopys.' Some felt worse, others felt better afterwards. Thanks,
Did you read the testimonials as well?
|
