Letters from the Specific Carbohydrate Diet support group 1997 (13)
Re: SCD: Scope Time!
Bart, You can have clear homemade chicken broth, homemade jello made with plain gelatin and grape or apple juice, the clear (non-pulpy) juices themselves such as grape or apple. These are all allowable by both the SCD and the Colonoscopy prep procedures. That's about it. Anna
From Elaine Mon, 3 Mar 1997 23:26:26 GMT Dear all, The following is letter sent by Theo Colborn PH.D. to Dr Peter Green of Columbia Presbyterian Med Center in NYC. Elaine faxed it to me yesterday & asked that I share it with you. I thought I could scan it but it seems I have to type it out (whew, long letter for a non-typist). Wouldn't it be nice if it actually had some influence? Dear Dr. Green, 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. By late 1952 his health had deteriorated seriously when we discovered Drs. Sidney & Merrill Haas who immediately put him (and his newborn sister) on a disacchride-free & complex sugar free diet. After 5 days on the diet for the first time in his life he passed a solid stool and slept through the night. Our last 2 children also presented the same symptoms shorty after birth. How ell I remember the hours spent boiling milk with CASEC powder and the many times it foamed up, boiled over, and made our home reek of scorched milk. By the time our last child was born, Sidney Hass had passed away and we had to find Merrill who had semi-retired to Peekskill. Most important, after only a short time on the Haas diet my children became as healthy as their peers. Today, my children (age 37 to 47) have no overt celiac symptoms and are productive, well adjusted adults. In my case, at age 45 (in 1972), following an IV with Inferon (iron-dextran) prior to a hysterectomy, I began to have severe hypertensive attacks, myalgia, and diarrhea and colonic distress when I ate pork, including lard. By age 53, a great deal more than pork distressed me. It never occured to me that I was experiencing the same symptoms my children experienced in infancy. I was diagnosed with stress syndromw and irritable bowel syndrome and told to change my life style and eat more grains and roughage. The latter, of course made me worse. I had one colonoscopy, sigmoidoscopy, and ultrasound examination after another, which revealed nothing. At age 58 I saw a gastroenterologist who suggeted that perhaps I had celiac disease based on my children's history. Unfortunately, withing 2 weeks of that examination I was scheduled to move 2500 miles to Washington, DC to take a new position. As a result, I started again trying to fina a physician in DC who would work with me rather than prescribe medications and tell me to remove stress from my life. My original degree was in pharmacy and I did not want to get on the antacid, antispasmodic, tranquilizer treadmill. I got no help from searching the medical literature about celiac disease either. 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 Then one day, I was in a used book store and saw a book called "food & the gut reactio" by Elaine Gottschall. I must admit that I was skeptical because she was a dietician (Elaine wants me to clarify that she is a cellular bioligist). I could not believe what I read. She was RIGHT on. I came home & removed rice & potatoes from my diet. In 4 days I had my first solid bowel movement in 25 years. I also slept for 8 hours uninteruppted for the first time in years. I had forgotton what it was like not to suffer from and be distracted by bowel & bladder urgency. The color came back to my cheeks. I managed to put on 15 lbs, and my energy was fully restored. 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. 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, I plead with you to try this simple approach to controlling and reversing celiac disease. You should expect success if you enlist patients and parents who have the discipline to maintain constant supervision over their children's diet and who have the intelligence to understand simple organic chemistry. I realize that it is harder today to restrict children to a diet such as this with all the prepared foods on the market and the faster pace of life. However, both my husband and I worked while raising our children. We made tremendous changes in our lifestyle to accomodate our children, but in doing so we succeeded in restoring their health. At that time it did not seem like such an inconvenience as we watched our children blossom. When they cheated on their diet, or relatives allowed them to cheat, we all had to pay for their misery. All I can say is that it was well worth the extra time & effort. My children still have excellent dietary habits and avoid prepared sugar/starch-rich products on the market. In my work I often get letters from people who describe themselves as victims. Most of the letters are filed away agter I send them a thankyou note for their interest in my work and encourage them to continue the efforts to improve their lives. Consequently, I hesitated sending this letter to you. 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. They deserve the good fortune my children and I found via the restricted carbohydrate diet. They do not have to remain chronically ill. I often see adults whom I am certain would benefit from this diet but I am certain they would not have the disipline to follow the regime; 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. Only the best to you in your endevour to create an awareness about celiac disease and doing something about it. With deep respect, Theo Colborn
Starting over Sun, 9 Mar 1997 22:35:10 GMT Joaquim, Your questions are most valid and I should have clarified what I had said. I really should not be posting to the group as I am not dedicated to the diet as others are. I have none the less had remarkable improvement. Elaine has said that if the diet has not helped you after one month that it probably won't be of benefit. After one month I could not see enough progress to really merit such strict eating, and so I gave up and went off the diet. I got so sick. I was very surprised, and so I went back on the diet and I didn't get really healthy, but I wasn't sick either. And so I have stayed with the diet all this time because I must admit I do feel better eating this way. But I am not strict and as such my experience cannot really be of benefit to others. I probably eat about 90% according to the diet, that is the best I find I can do with three teenagers to cook for and an overly busy life myself. I did end up on a holiday last summer and was able to stay with the diet for 3 weeks, 100%. I did not find any noticeable improvement in that time. I am extremely strict with sugar as that has such a horrible effect on me, but I don't notice any problem with rice. I can't tolerate honey at all, but don't notice any ill effect from pasta as long as the sauce is homemade. And so I go along, not following Elaine totally but having found a comfortable way to function, sort of customized. I don't consider that I will ever "go off" the diet. I think I will eat this way for the rest of my life, and I am ok with that thought. If you really want to give the diet a try, 100% + is the only way to go. But if it doesn't work, than personally I wouldn't drop it completely. There is just too much merit to it on so many levels. I am one of the fortunate ones who have had surprisingly good cholesterol and Hdl and Ldl results. It would be a long list if I listed all the health benefits I have acheived. My life the way it was and the way it is, there is no comparison, even in the amount of time I used to spend in Doctor's offices would amaze anyone. No more of that for me. You might find my story sad, but if you get at least as good a result as I have, you will not be sad! If you get the result that Rachel has, you will be thrilled! I hope you are, Carol
April, Great to know that there are others out there who have customized and are still getting a benefit. None the less, I think that for the benefit of the Newbies, all variations of the diet should be prefaced with a disclaimer. They really have to learn how to do it and how to do it right, and it becomes very confusing to them when someone like me posts a message, as shown in Joaquim's initial response. Interesting that some of the things that you find allowable are like poison to me, and some things that top your no list are things that I can eat a bit of. By the way, you don't say how you are doing these days, would love an update. You have been on the diet about the same time as I have and also in the group the same length of time. I have lately been having unusual success and I think it might be because I am making my yogurt with starter instead of with storebought yogurt. Thanks to the person who suggested this. Or maybe I have been on the diet such a long time that it is finally starting to clear up my intestinal problems. Carol
To Carol et al..Update Tue, 11 Mar 1997 3:13:50 GMT Hi Carol and all: Carol, you had asked for an update, and here it is! I feel that I have gained an incredible amount of control over my disease in the year or so on the diet. If I feel slightly off (increase in D, more gas ect..) I know it's my own fault, and I know what KIND of food to look for. For example, I think that I have to scratch peas off the list...along with all the other legumes. I don't think I can do legumes AT ALL! Bummer, since I just bought a whole bunch of frozen peas (so convenient!), but I think they make me worse. One negative side effect that I have noticed is that the better I feel, the more I go into a kind of denial that I have a disease at all. I recently got a new job and with it, new health insurance. I was not paying attention to how much meds I had left and, as a result, ended up going about 5 days without. I know, I know, really stupid but who said denial was intelligent? By the end of the 4th day, I was beginning to feel that old feeling of extreme urgency to "go", which I had not experienced in years. A rude awakening, to be sure. But, I have learned how to get myself back on track pretty quickly by paring down to a few basics (applesauce, carrots cooked to mush, scrambled eggs and meat). Even though I'm pretty happy about my progress, I get really frustrated at times and just can't help myself from cheating. I get so sick of going out to resturants and finding the few things that I can eat, waiting for my food, and when I get it only to discover that it's served over polenta or something like that. I feel like screaming because they did not think to list in on the menu. It takes a supreme act of will (which I don't always have) to turn down food that's SITTING RIGHT IN FRONT OF YOU. I feel like an alcoholic at times, sneaking a bit of this or that when no one's around. As I've mentioned, I got a new job. To be brief as possible, I had been working for several years in a human services agency, where everyone was very close, to the point that everybody knew everybody else's business. With the new job, (in for-profit, very different) I wanted to take a different approach. I don't want to be close with the people I work with, it's a different environment, I want more separation between personal and professional. Well, as there is always food in the work environment, I've already had to turn down numerous items of food that I can't have. Already, I can tell my co-workers are wondering "what the hell DOES she eat?" I get torn between wanting to keep my privacy (as I think my UC is MY business and no one elses), and just wanting to say..."Look, I can't eat this, that or the other thing because....." I have not decided yet how I will resolve this conflict. Anyhow, I gotta go...sorry if the above seems a little negative (2 days before my period EVERYTHING tends to sound negative!!!). Wishing everyone success, good health, and minimum trips to the bathroom.... April in Seattle
aspartame On Mon, 10 Mar 1997, Dempsey wrote: > Roy (and everyone) > Very interesting indeed about the aspartame. I too have been suspicious > of it for awhile -- only indulged on that unfortunate whim. Actually, > before I found this diet, it was one of the things I gradually figured > for sure triggered D for me if I had it two days in a row. It was > enough that I eventually gave it up. I can't believe it, there was a > time, long ago, as a teen, I practically used to live on the stuff, I am > embarrassed to say. Roy, if you know of any particularly good > information on the web regarding aspartame's effects, could you let me > know? (By the way, all, I don't know how this relates to the diet, it's > not a carbohydrate, so it must have some other way of causing > irritation). Denise and folks, Luckly I saved the www address for the aspartame. Worth a visit. IDBers should play safe and stay clean of nutrasweet. Citrucel, higly recommended for regularity by doctors, has that poison. The regular Citrucel has sugar which as we all know is out of question http://www.tiac.net/users/mgold/aspartame/aspartame.html Regards, Roy roy@unt.edu
Re: Possible Aspartame Problem? Tue, 15 Apr 1997 2:45:54 GMT >Hi Everyone, > >This is a general request for any who might be familiar with the following >series of events over the last 24 hrs. > >Martine has been faithful on the diet for over 14 months, (7 months with >meds). We have been monitoring her bloodwork since that time as we get a >copy from our GP. Her HB has come up to 105 (from 44 lin Feb 96) and her >platelet count has dropped from 1300 in Feb 96 to 550 as of Thursday 10th >April. Our GI and GP state that the platelet count is an indication of >inflammation activity and hence " disease activity" The strange thing is >that last night (Friday) she started to pass blood, quite red and brisk, >although no other symptoms (pain, nausea, loss of appetite. etc) accopanied >it. It has continued to this afternoon (Saturday). Our only possible >culprit for this could be that with supper last night she had a glass of >diet Pepsi (with Aspartame) We were wondering if any others had a similar >experience, or had, for no possible reason a "flare" in the middle of >recovery through the diet?. It is baffling us all as her recovery has been >steady with weight gain, bloodwork improvements and the ability to do more >in her daily activities. > >looking forward to hearing from any of the group >regards, >Allan There are many reasons for a flareup. Since both Crohnes and Colitis are associated with the immune system, when it is assaulted ( by flu or other virus, it can fall out of balance). Whilst the diet may balance the bowel flora, an unbalanced execution of the diet can cause severe malnutrition (deficiency in some vitamins and minerals or keto acidosis if not enough carbohydrates are consumed) you can go OK on the surface, but meanwhile the body is being depleted of vital minerals. Balanced and nutritional diet is essential whilst on the diet. plenty of vegetables many times each day is what is required once the diarrhea stops. Also do not overlook the effect of stress hormones on the GI tract. and on the metabolism in general. Adrenal exhaustion is common in those with this condition since long term anxiousness will deplete the hormone reserves. - replace with EPO, olive oil, linseed oil and cod liver oil on a daily basis. all of which are allowed on the diet. fight anxiety with weak herbal teas that relax and maybe some aromatherapy. Regards Michael
Re: Possible Aspartame Problem? Tue, 15 Apr 1997 1:21:23 GMT >Hi Everyone, >... Our only possible >culprit for this could be that with supper last night she had a glass of >diet Pepsi (with Aspartame) We were wondering if any others had a similar >experience, or had, for no possible reason a "flare" in the middle of >recovery through the diet?. It is baffling us all as her recovery has been >steady with weight gain, bloodwork improvements and the ability to do more >in her daily activities. > >looking forward to hearing from any of the group >regards, >Allan Dear Allan, This sounds very familiar, but God only knows whether it was the aspartame or some other ingredient in the pop. I was doing just fine on the diet too (I have CD), and then one day when I was really thirsty and saw some Coke in the fridge, I drank about 1/4 cup. I didn't think it could do much harm. The same day, several hours later, I started getting liquid bloody diarrhea spraying out all over the place. This was the worst I had ever experienced! I thought it must have been the Coca Cola for sure because that was the only deviation I made from the diet. Anyway, as it turned out, I went to my gastro doc and he gave me Dipentum, which I had never tried before, because I had been taking Asacol and it wasn't doing anything for the bloody d. The Dipentum stopped the bleeding (apparently), but after a week or so on it, I had to discontinue it because the diarreah continued (non-bloody though) and it was suspected as being a "side effect" of the Dipentum. When I stopped taking it the diarrhea went away, so it was basically confirmed that the Dipentum was the cause. After that I was fine for a long time. Months later, I started drinking Perrier carbonated water with some juice added. I had a pretty bad flare, and finally figured it may have been the soda. I don't know for sure, but I gave it up and was fine again. So, I think that even though some carbonated things are supposively allowed on the SCD, some of us cannot tolerate them at all, therefore, if you experience something similar, and you suspect pop or soda as the cause, I would discontinue it. Of course, you are probably already aware that Aspartame in general is not allowed anyway. Hope this helped. Anna (in remission after less than a year on the diet).
Carolyn, (& others) Tue, 15 Apr 1997 15:29:56 GMT I'm on the diet for 1 month now. I am better than before, not only because of the diet but also because I've started with prednisone (15 mg/day) one week ago. As you well know, it is very difficult to know exactly when to start with each kind of food. So, I've been eating almost exclusively carrots, green beans, zucchinis, tomatos, cooked apples and pears, swiss cheese (Emmental), cheddar cheese, fish, meat, yoghurts and also bananas (very little) in the last days. I'm also taking some vitamins and Cat's Claw. I decided to maintain (more or less) this basic diet until having diarrhea more than 3 times per day. I have to confess that I was hoping to be a little better by now, but I don't complain. Best wishes, Joaquim Dias (1 month on the diet) jdias@civil.ist.utl.pt
Joaquim's progress Tue, 15 Apr 1997 17:35:54 GMT Joaquim, You are doing wonderful on the diet! You can start to eat new foods when your diarrhea is under control. Just start slowly with the new foods so that you can tell if something is bothering you. Are the vitamins you take sugar-free? Be very careful about those things. Also, make sure the bananas are very ripe. I've had problems with bananas because I like to eat them before they turn completely ripe. Are you making your own yogurt? Its very import that you do it right. What is the Cat's Claw for? I don't remember you saying if you had crohn's disease or something else. I've had crohn's since 1980. And after two bowel resections, this diet is the best medicine I've found. But I still struggle with the crohn's and with staying on the diet. Be patient with the diet and give it time to work! Your friend, Jim
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