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The following are the full testimonials and success stories that appeared in the SCD listserves.
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Subject:
Re: success stories and testimonials Here's our
story Mike: A friend from Canada suggested that she try the SCD diet. After reading the positive reviews in Amazon.com for "Breaking the Vicious Cycle" we decided to try it in August, 1999. We didn't know what to expect. Within 24 hours the gas and pains were reduced significantly. This was the first really encouraging news in 26 years since it offered the possibility of long-term help. The "D" started to decrease significantly in a period of days. Now we are at the six-month mark. The results have been very encouraging. She rarely spends days in bed, although there is still some pain. There has also been a side benefit. I have not read too much of a link between Crohn's pain and headache, but she often has the two together, or one after the other. Since being on the SCD she has almost been without headaches at all. We are both Christians who love the Lord Jesus, and are thankful to God, to Elaine, and others who have fought to get out the news about SCD. We certainly didn't hear about it from the Crohn's and Colitis Foundation or any of the Doctors we have consulted! Wouldn't it be great if someone spent some real money to research this and refine it? It takes some work to prepare the food, pack it up to bring to church dinners or to visit friends, but it has been more than worth it since it has saved so much time and pain from being sick. We have been glad to pass the SCD on to others. One family had a teenaged son who had been having a rough time. His mom said that the diet had definitely been helping him and was starting to get encouraged. But the Doctors also had him on methotrexate. One day last December bacteria from his gut got into his blood stream, and he died the next day. His family said that they had not been informed that the drug he was on lowered his immune system or they would not have consented to it. Needless to say they were upset about the whole thing. They had only wished that they had found out about the SCD earlier. Sincerely, Dan & Mary Waters Subject:
Beginning SCD experiences with colitis This is how the beginning of scd had gone for me. Others with colitis have had similar experiences. Most of us needed more time than the book mentions. At least two months, then once all is okay many of us wound up with the "three month flare" for me that got under control in a couple of weeks. Hang in there. Like you, I also knew I was on the right track. I wasn't getting worse and I was starting to slowly feel better everyday!!! The D stopped a short while after starting the diet. I drank at least eight large glasses of water a day, every day! I didn't drink any juice,tea coffee. Only cooked food agreed with me, I couldn't tolerate veggies or nut flour in the early weeks. I didn't eat raw fruit (a little cooked apple or pear and some cooked veggies once in a while). I ate yogurt and farmers cheese and the cheese cake along with too many hamburgers (all different types of meat for variety lamb, beef, pork, or turkey) chicken breasts, fish, and soup. Loosing weight was good for me. I was fat from years of drugs, malabsorption, low fat high grain diet. It took at least eight weeks for the blood and Mucus to stop and feelings of urgency to completely disappear. It seemed there was changes on a daily basis so i just kept at it until one day i realized i could eat the muffins, then a raw salad, raw fruit, whole nuts and was fine. I used Rowassa suppositories for a month or so. I find them VERY helpful in stopping the feeling of urgency. Hang in there this diet does work for colitis it just might take longer. If your not anemic the blood and mucus is not a big deal. If you're anemic start eating liver. Buy organic no hormone or antibiotic chicken livers. Empire kosher is a good brand. When took Predinsone all the time it would take the predisone the same two months to completely stop the blood and mucus so I figure why not use food to really heal the gut in that amount of time! Healing thoughts to you on your journey to health, Ruth >>Carl
wrote: The question has probably been discussed a zillion times,
but is it possible to "break" a flare-up with the SCD? >> Carl, Subject:
Weaning meds I am presently on 100 mg of 6 MP a day. When I started the SCD in Nov. of 1998, I was on 150 mg a day and was taking 2 tabs of Asacol 3 times a day. The doc weaned me off the Asacol first. No problem. GREAT, as a matter of fact, that's 6 less pills a day! Then he started weaning the 6 MP. We went VERRRRRRY slowly with that too. Only 25 mg (a half a pill) less for about 3 months, then another 25 mg less for another 3 months... He explained to me that with the way the drug is built up in the body, it would take a good six weeks at least to tell if the lower dose will bring on a flare. I started having a flare just about exactly 6 weeks after I'd gone down to the 75 mg level. I went back up to 100 mg. a day and it took about 8 weeks for the diarrhea to slow back down considerably. I might try another wean in about a year, but for now, I think this is where I'll stay till my gut heals a little better on the SCD. (I have Crohn's) Good luck to all, Nancy W. Gina Foresta's wonderful testimonial is worthy of its own page: Date:
Tue, 16 May 2000 22:40:20 From:
Nancy_Emerson Dear friends,
It seems to me that much of this smarts of the same old societal tendency to want instant results. One reason many people can't use this diet is that they are too impatient to either put in the time in cooking, or wait for the results. And those results are unlikely to be instantaneous, or even anything other than SLOW, in coming. Medication may bring relatively quick results, much of the time. This diet is likely to take quit a while. For example, I have been on this diet for 1 year and 5 months. I still have occasional loose stools, though it's gotten to the point where I don't really call it D, because it's usually only 1 or 2 events, and then is back to solid. But still, after almost a year and a half I'm still in a stage of gradual improvement. I often remind myself that BTVC itself predicts that it can take 2 years to get to being symptom free. I have reached the point where I think about sypmtoms on a weekly basis, rather than daily, but still I work to improve. Occassionally I find a food which it is beneficial to reduce or eliminate - honey and excessive fruit are in that category. But mostly I find that I can try to fool around with eliminating things, and not get nearly the results that come simply from being patient. This takes time folks, and it's so worth the investment. If you can speed things up that's great, but you'll probably end up having to be patient anyway. I'm sure there will be those who disagree, but I still think patience has been my best policy. Thanks for "listening." Nancy Subject:
It works! Date:
Wed, 16 Aug 2000 Thanks Elaine!!
I don't know if anyone remembers, but about four months ago I wrote
to the list requesting suggestions for my severe anemia (my hemoglobin
was down to 8.5). My doctor had me on double doses of iron pills,
and was very concerned. Elaine told me to stop the pills and stick
with the diet. Someone else suggested that I try liquid liver extract.
My doctor had me eating ground beef patties every night! I have
done all of these things... and... It has been a long, slow process,
but as today my blood levels are totally normal!! I am totally thrilled
and just wanted to say, "THANK YOU ELAINE!" I've been on the SCD
for five months and have made so much progress. My joint pain is
gone as are my horrible skin rashes. Unfortunately, I've also gained
15 pounds that I don't need (can't figure out why... my only carbs
are from veggies, 1 slice lois lang bread/day and ½ cup of yogurt)...
still need to work on that! I'm also more active than ever, lifting
weights, running and doing yoga! I love the SCD, Elaine and all
of you! Don't know what I'd do without you! Subject:
RE: success stories and testimonials My diagnosis was for a mild case of Crohns, what I always thought was a twice yearly case of the stomach flu, which then became too frequent. I was diagnosed the Christmas of 1995 and put on 5-ASA, which made me very ill, so I quit it. After hospitalization for a blockage several months later, I was on prednizone from June until January 1997, at which time I changed over to budesonide. I had found the book BTVC in a health food store on Yonge Street in Toronto right after my diagnosis but was discouraged by all the restrictions at first. I finally started the diet in the Fall of 1996, becoming progressively sicker as time passed. In September 1997 I was too sick to work, and was afraid that the Crohns was worsening as I now had D. Images of surgeons' scalpels danced in my head. I remembered how my symptoms were originally and realized I felt worse than I had when first diagnosed. All this time I continued on the diet almost mindlessly. I really don't know why. At the same time I went to my dentist, who, shocked at how bad I looked, checked on the drugs in her directory (don't know the name) and lo and behold, all the horrible things I had been dealing with were listed as side effects. Concurrently my GI thought it was time to see how things looked and I had a barium x-ray. The results: no sign of Crohns whatsoever, no stricture, no scarring. I came off of the drugs as quickly as I could and the rest is simply a story of regaining my health slowly. I have never had another episode of Crohns. The drugs actually gave me the symptoms, even though the real thing had in fact been cleared up by the diet some time before. It took a long time to recover from the fatique, allergies, etc. that resulted from the toxic drugs and even longer to recover from the emotional damage. Thanks to the SCD the fear of Crohns no longer dominates my life. I might add that now the diet dominates my life (in a nice way). I have been on SCD since 1996 and don't intend to ever leave it. I don't make a fuss when I'm at someone's house, but other than that, I stick to it about 95%. I found the SCD site after I was through the worst, but check in regularly because I love to see other people getting better with the diet. I continue to check in with my GI, who asks me how I'm doing. I tell him I'm still on the SCD and doing great. He has told me he has other patients on it who do well too. I just wish he had mentioned it to me himself. My mother lost her leg to Crohns, from severe dehydration, and her last years were spent in pain. If I had only known about the diet.... Date:
Thu, 7 Dec2000 Hello SCDers, I discovered Elaine's book in 1996 after hearing her interviewed on the CBC Vicki Gabreau's show. I tried it for a couple of weeks, and had such success, I adopted it wholeheartedly for a year. It changed my life. My friends remarked that the colour that had returned to my complexion and when the dehydration was no longer a battle, I could enjoy the hot weather again. Recently, a stressful time with family health triggered another attack. I knew what I had to do to get things under contol, but this time I noticed an additional pleasant experience. Under normal conditions, I find cooking a little daunting- so much choice, so little inspiration. Now that I am back working with a finite number of ingredients, I find my creativity blossoming. I look forward to experimenting with the allowable ingredients to find new combinations or "faux" effects. Even after a few weeks, I'm feeling so much better and calmer. Thanks Elaine for giving me the tools to take control of an perennial problem, and a reason to eat more nutritiously. I would like to contact other people on the diet in the City of Toronto who are interested in forming a monthly Pot Luck Dinner Club. We could share stories, swap recipes, taste each others food, and eat with abandon. Can you help me in contacting people, preferrably in the downtown Toronto area, so that I can start rounding up interested people. So nice that all this is on a Web site now. It's encouraging to see so many people in so many locations have discovered the diet. When I was on it, I never met another soul who was following the same regime. The new world of communications is a great way to get in contact with kindred spirits. I'd love to hear from anyone in Toronto who would like to join me in setting up the Pot Luck Dinner Club. Please post my name and e-mail address anywhere. Continued good luck with the web site, and warm regards to Elaine. Sincerely, Pam
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Hello everyone,
There is a book called "Breaking The Vicious Cycle", that I had repeatedly seen in the book stores while I was browsing. The author claims that if her diet is followed strictly for at least a couple of years, people suffering from Crohn's, Colitis, Celiac's, and other intestinal disorders can become symptom-free...and stay that way indefinitely. I was skeptical, but ended up buying the book a year or so before becoming extremely ill. I tried to follow the diet at that time, but failed. I think it was because of a combination of things. I could not withstand the skepticism of those around me, and all the eye-rolling and negative remarks that made me feel foolish for thinking that something as simple as a diet could help me. Also, my doctor certainly thought the whole thing was a hoax, and he recommended against it. The other reason I think that I could not continue to follow the diet was because I WASN'T SICK ENOUGH!!! I felt pretty good, didn't need any meds, and had no idea how horrible and devastating this disease could be...and would be for me in the near future. So, about a year later I found myself desperately ill, unable to look after myself or my family, and I finally found the motivation to begin the diet seriously and stick to it strictly. I did not know whether or not it would work, but figured that if I ended up having to face surgery, I didn't want to be wondering whether or not I could have avoided it, and saved my colon if only I had given the diet a serious try. I felt that trying the diet was very low risk. A couple of very well-respected GIs had reviewed it and although they did not endorse it (they said that they felt it needed to be studied under controlled conditions before it could be recommended), they had admitted that it was a balanced, palatable diet. They published a review of "Breaking The Vicious Cycle", in the Canadian Journal of Gastroenterology. So, I followed the diet. I still suffered horribly for the first 4 months that I was on the diet. After that, my bowel began to heal, and I found myself feeling more and more incredibly well, energetic, better than I'd felt in many years (even pre-UC.) Six months after beginning the diet, my GI told me that my colon looked NORMAL. It has looked that way for the past year. Just wanted to pass on my experience to others who might benefit from it. The incredible part about this diet is that it is only a diet. There is no magic supplement, or secret ingredient that someone is making tons of money on. It's just a matter of feeding yourself good food, and putting an end to consuming harmful stuff that most of us eat on a daily basis. There are many others who have regained their health after following this diet as well. Nine months after beginning the diet, I found the SCD list on the internet, where there are about 250 others sharing information, and support to newcomers, and many success stories. Best regards, Janice I have had Crohn's Disease for 30 years. Recently had 3 Remacade infusions with no improvement (if anything, I felt worse). My doctor scheduled me to see a surgeon for an ileostomy the week before Christmas. After thinking about it, I cancelled the appointment because I knew I didn't want to to anything before Christmas. Also needed to mentally prepare myself. Don't know why I never looked before but one night while looking under Crohn's Disease on the Internet, I found a reference to Elaine Gottschall's book, Breaking the Vicious Cycle. It has only been about 3 weeks but I can't believe the difference it has made. I can eat WITHOUT PAIN! Just on the off chance that the Remacade was finally starting to work, on Christmas Day I had a very small helping of potatoes and gravy, a little dressing and a piece of pie - became bloaty and gassy. Things certainly aren't perfect after this short time but so much improved that it is scary. Although I have had a severe case of UC, after following this diet strictly for 6 months my GI told me that my colon looked normal. I have been on the diet for about 18 months now, and since that examination six months into the diet, my colon has continued to look normal. And I feel very, very well. After being so ill, unable to look after my family or myself, the experience of healing on this diet has been so LIBERATING - I can hardly describe it. There are about 250 of us on the SCD list, and success stories are frequently shared. I'm certainly not the only one. The diet requires will-power and time, but you could not pay me enough to go off of it. I hope that your daughter will look into it. Best regards,Janice (editor's note: a different Janice than the previous message) Subject:
4 years this month! Also I ate in a lot of restaurants. Before the diet I got so sick I could barely walk, couldn't drive, was in constant pain. While visiting a friend of Lucy's I was fortunate to be able to buy Elaine's book and try it out. It was remarkable at first even with consuming some illegal foods unknowingly. After getting on this list and finding out more I was able to stick with it 100% for the last 3 years. The improvement is incredible! I can't thank Elaine enough. Also, I just received my copy of Lucy's new cookbook. It's really great. Am looking forward to trying the recipes because I had been in a rut, just eating the same old thing. Going through the new cookbook today, my husband and I are drooling! Some unresolved questions: in the beginning I could eat the yogurt but for the last year I have avoided it because it gave me problems. Anyone else have this problem? Any insights as to what is going on? Then there was the time I got convinced that maybe I had yeast so I began eating raw garlic squeezed on foods. Again, BIG problems with pain and bloating. Fresh lemon juice can do this to me also. I don't have bleeding and never did so didn't think these things would cause a problem. Any insights? Again, thank you so much Elaine! You have given me back my life. Love, Fran Peterson Subject:
Re: 4 years this month! Dear Fran,
I don't know why lemon juice would bother you but thank goodness you have identified this idiosyncracy. As I have said before, some very sick people with Crohn's can consume more than a quart of homemade yoghurt per day and thrive; others are bothered. Have you tried the culture Lucy sells with the maker? It makes such wonderful yoghurt and you always have it on hand rather than the containers you have to buy and try to keep fresh. Again, thank you for your letter. Love, Elaine Subject:
more success Been meaning to post this for a while. Now I am finally moved in to my new house (which I bought - the first) and am catching up a little on the list. I'm WAY behind, and I still have lots of boxes to unpack, so I probably won't totally catch up soon. But, I'm getting there. As for the success, I have finally gotten back to drinking the 3 quarts of water a day that I think my body needs. My doc (who I never see anymore) once told me that having had a resection my body absorbs water less well. He thought that meant I should drink less water (this was years ago, and even then I knew I felt better when I drank more) because it wouldn't be absorbed. However, for the last few months I've been fighting off a mild backslide into symptoms I hadn't had for a while before that. In the last week or so, since getting back to drinking my 3 quarts ago, these symptoms are GONE. I'm having the best, most consistent BM's since before I was diagnosed, 11 1/2 years ago. WOW!! Now, you might claim that being a teacher on summer vacation could have more to do with it than the water intake, but my stress level has not exactly been lower these last few weeks. Quite the contrary, I've been moving, and this Monday I had the worst day of stress in years. [story about previous landlord removed] I credit getting back to drinking all that water. I just feel better in general, but having consistently brown and solid BM's is a major step. Almost 19 months on SCD, and I keep gettin' better. I'm getting to the point where I can't imagine being much healthier. I think I'm healthier than most of my friends and family, who think of themselves as being in perfect health. THANK YOU EVERYONE. YOU WERE MY LIFELINE WHEN I FIRST STARTED, AND NOW MY LIFE IS BETTER THAN IT'S EVER BEEN. SCD NOT ONLY CHANGED MY HEALTH, BUT IT CHANGED MY OUTLOOK AND PRIORITIES. I'M A BETTER PERSON FOR HAVING BEEN THROUGH THIS THAN I'D HAVE BEEN IF I'D NEVER HAD CROHN'S. THAT MAY SEEM STRANGE, BUT I REALLY THINK IT HAS BEEN A VALUABLE GROWTH EXPERIENCE FOR WHICH THERE COULD BE FEW SUBSTITUTES. Back to unpacking boxes, but I needed to say this. Nancy Date:
Mon, 4 Sept. 2000 "..First
time in 5 years I am full time student in University of Oulu plus
having my free-time as I used to have before getting ill. No symptoms,
my blood tests are completely normal and having lots of fun! Bicycling,
walking, swimming, travelling, working, e-mailing, studying and
enjoying my wonderful new life.." Subject:
Greetings from Finland! Hi you all! - I'm Ulla (25 yrs old) from Finland and I just wanted to write a few lines about my situation and to thank you all for being there! I've been diagnosed with colitis ulcerosa in -98 and been on and off medication (mainly Prednisone) since then but with very little help. This spring I was facing surgery (removal of the entire colon) but then, in the nick of time, I was more than lucky to stumble across some information on SCD in the Internet. Soon I got in touch with the few people in Finland following the diet and since then my life has changed dramatically! I've been on SCD for little over 3 months now and my condition has improved tremendously. I'm not entirely symptom free yet (not that I'd expect that so soon) and I've had my ups and downs but on the whole I feel like a new person: no cramps, only occassional bleeding and also diarrhea has recently eased up a bit. I'm able to work, exercise, meet my friends and ENJOY my life! I've got indispensable help from Kirsi (I'm sure you remember her) - she has done so much for us SCDers in Finland! Without her help, knowledge and support I wouldn't stand where I stand today. I've been also following this list for quite some time and learning a lot from here. Naturally, my deepest gratitude goes to Elaine for giving me my life back and restoring my faith in the future. I can't even begin to describe in words how GRATEFUL I am to you Elaine!! Then I just have a few questions to ask. Firstly, I'm eating wide selection of SCD legal foods (including raw veggies + fruit, nuts, almond flour) despite my occasional symptoms because I want to ensure a balanced and nutritious daily diet (I'm not taking any supplements cause we have no legal ones in Finland). Could this, in your opinion, risk the effectiveness of SCD in the long run? Ie. will an extensive version of SCD adopted this early either slow down or even entirely prevent SCD from having its full effect on me eventually (be it in 6 mos or 2 yrs)? Secondly, when is the next edition (8th) of BTVC coming out? I can't to wait to get my hands on the new copy! Once again,
I wish you all great health + thank you! I hope my condition will
continue improving (sometimes I'm still afraid that this won't work
for me in the long run - I guess my fears of this illness occasionally
overshadow my belief in the diet!) Sorry for being this extensive,
And Elaine's reply: To Ulla from Elaine I am filled with joy after reading your letter. Our darling Kirsi is really buckling down. Bless her and you. I can understand your fears because UC and Crohns are really frightening diseases and once we see a light, we are afraid to put too much hope. I wish I had a remedy for that...If you cannot get vitamins in Finland, so be it. Ask Kirsi what she did. She is a walking role model. I remember her saying she had been sick for many, many years - way back - so she is truly an inspiration. Give her two kisses from all of us if you see her. The new edition is in press. But the only differences are the web site additions and email resources. I do not think one will be able to get it from any source for about two months. But if you visit www.scdiet.org, you will be missing nothing. Mike and MIk in Copenhagen have added audios and all kinds of things so feel secure that that site will keep you up to date. I would love for them to put some of the videos on but I am so naive about computers that I can't even imagine being that fortunate. I have told the group before: the world must see and hear the segment where the girl is well as a result from the SCD and is asked why she waited to go on it and then says "WELL, I THOUGHT IF IT WERE ANY GOOD MY DOCTOR WOULD HAVE TOLD ME ABOUT IT!" (It so happens that her Toronto doctor was head of Crohns and Colitis.) It is such a punchline I would love all the world to see and hear it.Keep getting well and much love Elaine Subject:
Elaine, Thankyou! Hi Elaine, Subject:
GOOD NEWS! Hello Everyone! Just back from my doctor (Dr. Bolte in Manhattan). He is the one who recommended I read BTVC. I have been on a "modified" SCD (no yogurt, no almond flour) for 3.5 months. My intestinal permeability test came back NORMAL today. No more leaky gut! I still have food allergies, but he feels most will resolve over time. This seems to be what everyone indicates on this listserv. I am so delighted! I feel I am turning a corner and finally getting well! I'm still going to get some intestinal parasite testing done, and I am going to try the Ness Enzymes to see if they will further help me (Dr. Bolte is ordering them for me). In this hopeful time, I would like to thank everyone for their encouragement and "tips" over the past several months. You are such a generous and warm group of people. Your responses have meant so much to me. I especially want to thank you, Elaine, for writing that book! And thank you so much for all the responses you've given me on this listserv. I hope over time I will be able to eat that almond flour, which tastes so good. And perhaps even the yogurt. Lucy, you may be hearing from me yet! P.S. Christopher, the best of luck tomorrow! Latimer Celiac Disease (diagnosed 3.5 months ago) Date:
Sun, 26 Nov 2000 Hello everyone, In the interest of helping, I will abandon any modesty and let loose! I've had Crohn's disease for 25 years, since I was 12. Four surgeries: 1) exploratory (1975), 2) resection (1987), 3) resection (1993), 4) perforation 1 month after surgery #3 resulting in emergency surgery. One kidney stone (Crohn's isn't bad enough on its own - need some side ailments as well :), and a fistula (those are reeeal fun) since '93. 2 lost careers, yada, yada, yada... Nothing but watery Diarrhea since 1993. Still treating with the same thing they used 25 years ago - prednisone. Anyway, today finishes up the second week of the SCD diet. After 8 days, things started to "firm" up. In the last few days, I feel almost normal - it's amazing. Not getting up in the middle of the night, etc. The part I'm really looking forward to is getting my "head" back - as you all know, having life revolve around the bathroom just plain "messes you up". From what I've read about SCD, a return to mental "normalcy" is a happy side effect, as well. The first week, my main concern was making the transition without too much hardship (sorry to say, but I'm a bread/pasta FREAK). So the main goal was to follow the diet, even though some things were probably a bit rough so early on. I ate a lot of hamburger (with tomatoes/onions) and a few salads and coffee (got to have some vices!). The second week I realized the diet is excellent and there is nothing lacking, so my concern became to abstain from some of the harsher foods and start healin'. So we cut out the burgers, tomatoes, onions, and salads, and replaced them with chicken (an SCD version of shake 'n bake - it's awesome), soft-boiled eggs, and fish. Chicken/fish are much easier for me to digest than red meat. The other thing I find interesting is that I've been eating mild cheddar like a machine and have had NO problems, and I'm as lactose intolerant as they come. Also, for what it's worth, I pretty much do a fruit/juice fast until noon everyday (from the Fit for Life book). After 12:00, I start with the solid foods. This week's goal is to start tapering off the coffee - I only drink 2 cups a day, but whoa to anyone who tries to take them away! Let me thank all of you for your input - I've learned more in 2 weeks than I have in 25 years. And having Elaine here as an active participant is incredible. It's reassuring knowing that there are others going through the same thing. A small example -- I thought I was different because bananas "kill" me - then yesterday I read that they do the same thing to Cori. These similar experiences make us realize we're not alone in this and that we're not all that different. Anyway, I hope this encourages others - I'm so excited, words can't describe it. Thanks, Jeff Subject:
Re: It works!!! Hi Jeff,
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Gina Foresta's testimonial