From: Brenda
Subject: Re: Need info/experiences using 6MP and Remicade
Date: Fri, 5 Jan 2001

Hello, I was on 6-MP for 5 years. It took 6 months to work but it worked better than anything else I've ever been on. When I got sick again, the specialist told me it loses it's effect after about 5 years unless they put me on a much higher dose, which can be dangerous. I also had to have my blood taken once a month to check for liver damage I believe. Anyways I still didn't know about this diet at the time. (I was on 2 pills/day, which I think were 50mg. each). It is also very good for perianal disease which is what I had. My opinion is get on this diet as soon as possible and take what medication you need to to get well and give the diet time. I speak from the heart because I now have an ileostomy.
Brenda

Johanna's testimonial at the 6-month mark is worthy of its own page:

 Johanna's testimonial

From: Steve Diehl
Date: Wed., Jan 17, 2001
Subject an SCD Friendly GI

I visited my GI today, thanked him twice for telling me about BTVC/SCD/Elaine, told him how remarkable my improvement has been, gave him my email for other local patients wanting SCD support, he wrote down the web site, he has been suggesting other patients try the diet. His assistant told me he confiscated her copy of BTVC for his own use.

 Additional SCD-Friendly doctors

From: Katie
Subject: Doctor visit.
Date: Tue, 16 Jan 2001

Hi everyone, I just thought I would report about my first doctor visit after starting the diet. Last time I saw my Gastroenterologist in August I had a perianal fistula draining tons of pus. I was going to the bathroom 30 times a day. Had lost 20 pounds in two months and was in a lot of pain and exhausted. Getting dressed seemed like a huge task. I started the diet at the end of September. Within 8 weeks I had gained back 10 pounds, fistula was drying up, in general feeling fantastic. I stopped taking my asacol the third week into the diet. I cancelled my next doctor appointment but made another one for after the Holidays. I ordered three copies of breaking the viscious cycle and brought one with me, as I am sure many of you have done(The other copy is for my colorectal surgeon).

My doctor told me that he had never heard of the diet or the book when I showed it to him. He is a wonderful caring doctor so I believe him. At first he gave me the line of if it works for you than keep doing it. Then as he looked back over my records and realized how sick I had been he seemed more and more interested. I briefly explained the concept to him and he was intrigued. He looked at the area where I have the fistula and said that it has never looked better and he was very impressed. He said that he would like to show his partner the book. Then when the nurse came in he explained to her how sick I had been and that the diet had done wonders for me. He also ordered some blood work for me because I was anemic last time I was there. He asked me if I had taken the iron and prenatal vitamin he had ordered. I told him that I had taken the vitamin but not the iron. He said that he would bet my blood work would be fine since I was doing so well. I can't wait to get the results. I gave him the book with my number in it and he said that he would give it to some of his patients that weren't responding to conventional treatments. I asked him to at least tell people about it. He said that the down side is that a lot of people will not follow the diet, that he could give them the diet tell them that it works and that they will not follow it. He said that he has a lot of celiac patients and that they know if they don't eat gluten that they will be fine. Many still eat the gluten and make themselves sick. I have to agree with him. I am always frustrated when I tell people about the diet and they won't try it. But there are a lot that will try the diet also so I keep trying. Regardless, he seemed interested. My Dr. is William Notis and he is in Albany, NY.
Katie
P.S. He wasn't pleased that I stopped the Asacol, but he didn't give me a hard time about it, especially since I was doing so well. I said why take something if you don't feel sick?

Nancy Emerson's testimonial at the 22-month mark is worthy of its own page:

 Nancy's testimonial

From: "erik_freedman at hotmail.com" Subject: Erik in Germany
Date: Sat, 17 Feb 2001

Hello, I am new on the list, (finally found the time). I live in Germany, I've been on the diet since June 2000 and it comes close to a miracle for me. I've had UC since 1995 and been on med. ever since. 1998 I was hospitalized 6 weeks. I was a mess. Thanks to SCD I am well now and the doctor is reducing my med. I was so impressed by BTVC that I found a publisher in Germany who would publish the translation, with Elaine's consent. I finished the translation a few weeks ago and it will be published around June 2001. Thank you Elaine ... I believe this diet saved me!

Nice to be here,
Erik

 Erik's testimonial

From: Jon Richer
Subject: 2 years Later!!!
Date: Sun, Feb 25, 2001

2 years Later!!! No one believes my success. My life revolved around toilets and doctors...no fun there. Now, thanks to this diet, I'm a free man. Happy, healthy and looking forward to life. Thank you Elaine... you are a life saver.
Love, Jon Richer

From: Kim
Subject: my Gastro was shocked!
Date: Fri, 9 Feb 2001

I went to see my Gastro yesterday and he was amazed. Last time he saw me I was really, really sick. After a little over 2 months on the SCD I am a different person. Truly. He asked what I was doing differently and I opened my purse and pulled out BTVC and then proceeded to explain it to him. I didn't know what his response would be but he was very receptive. In fact I asked if he would read it if I bought it for him and he smiled and said yes. Yeah!

He's been wanting to put me on 6MP so I could get off the Prednisone but yesterday told me to keep up the diet because it's working, to slowly get off the Prednisone and to hold off on the 6MP. He was really impressed with my progress.

THANK YOU ELAINE! THANK YOU EVERYONE ON OUR LIST! He took blood tests to see how my sed rates look now in comparison. I'll keep you posted!
Kim - CD 15 years SCD 2 months

From: Lauren Anderson in New Zealand
Subject: Now I understand what the fuss is about!!
Date: Sun, 15 Apr 2001

HI all, Well, I'm into my third day on SCD, and I can finally see for myself what everyone is raving about!! I have had two blissful days of NO cramping/bloating/gas/loose BMs!! (Admittedly, I wasn't all that bad as far as symptoms went before Friday, but nevertheless, I never felt great at the end of a day). I've been eating an egg for breakfast, and then chicken soup, grape jelly (I used to hate jelly, but this is yummy! Nice and tart), a bit of yoghurt (about two tablespoons per day - no problems so far) , and some fish and ground beef. Have some cheesecake in the oven at the mometn, so that will expand the repertoire somewhat!

Subject: Thankyou
Date: Mon, 23 Apr 2001
From: Katie

Elaine, Today I feel a renewed sense of gratitude to you. It is a beautiful day here in upstate NY and I took my kids to the playground. I have never gone anywhere since I was 10 without worrying about a bathroom.

Anyway, early last fall at this same playground I had a peri-anal fistula with pus flowing out, I was emaciated, exhausted and miserable just counting the minutes until I could leave this playground.

Today, six months later, I am at this same playground without even a thought about the bathroom and climbing the castle with my kids and pushing them in the swings and enjoying life. Thankyou isn't really enough. But I don't know what else to say. I am just so grateful. Katie

Date: Mon, 1 Nov 2001
From: Missy

I have had active Crohn's disease for six years. Two years ago, at age twenty-three, I underwent my first bowel resectioning. When told the surgery had a 85% failure rate, and that Crohn's is a lifelong disease, I began to loose hope for a normal life. Before beginning the sc diet, I was sick every day for two weeks. Since I began, I have been sick one day in two months! (And I've cut down my drugs!) I have no more pain, and no diarrhea. This diet is a miracle for me! I can now lead a normal life and continue fulfilling my dream of being an elementary school teacher! :)

From: Tanya
Subject: entertaining/traveling stories - one year anniversary
Date: Sat, 22 Dec 2001

Well said. Today is my first anniversary of being on SCD. When I think about how ill I was a year ago, and how depressed and overwhelmed I felt, I have trouble believing it was me. A year ago I believed all the stats listed by the CCFA - three quarter of all Crohn's patients will require surgery in their lives, and of those two thirds will require at least a second surgery. They may be correct, but I won't be one of those people. SCD has given me back control over my illness.. and now the only choice I have left to make is whether to be on the diet or not. Given that I no longer spend 3 or 4 hours in the bathroom a day, I can eat without worrying about losing it one way or another an hour later, I'm not double over in pain and exhausted all the time, and I'm not losing body parts - it's not a hard choice to make. I can't imagine complaining.. Elaine has given me hope, and put my life back in my own hands.

From: Annie
Subject: 1 year anniversary
Date: Sat, 6 Jan 2001

Hi everyone, My name is Annie. I am just approaching my one year anniversary on the SCD diet and I thought I would share a bit with you. I was diagnosed in April of 1999 with UC. Even though that was the official "start" of my disease, I realize now, I had, if not UC, then really irritable bowel, for many years before that. I had just convinced myself that explosive D was normal for me. Well, anyway, I did seven months of prednazone as well as Asacol, and went into remission, if that's what you want to call it. Someone pointed me in the direction of Elaine's book in September of 1999. It made complete sense to me but it seemed so difficult at the time. There was so much to give up and I was sure I didn't have the will power. After all, I was in remission and that was only slightly worse then what I considered normal. But then, I had my first major flair in January 2000. And I mean major. I lost 20 pounds in 3 weeks. I begged my husband to put me out of my misery. He kept trying to convince me my two year old needed me. But all I could think of was he would be better off with a healthy Mom, who could get off the toilet and have the strength just to play with him. When I called my DR and begged to be put back on the prednazone, his associate asked "how many flair ups a year do you have?" The thought had never occurred to me that I would have more than one a year. That was when I started SCD and I have never looked back.

Consistently over the past year I have put on the weight I had lost. And have gotten stronger with more energy. I am not symptom free. But I feel better than I have in years, quite literally. I can take a hike or travel some place without the constant worry of will I find a bathroom in time. My weight does not fluctuate 5 to 10 pounds a day. My stomach is not swollen or loudly gurgling at all the wrong moments. Most importantly, my child has a mother back.

I'm not saying I haven't had my temptations. I'm sure just like the rest of you, the holidays were very difficult. But I just have to think of the alternative and I can resist anything. I never want to be as sick as I was in January and I'll do anything to make sure I don't. I do not want to do drugs for the rest of my life, that makes me feel old. And most importantly I do not want to ever have surgery, I like my colon, thank you. I do not feel like I am deprived anything on this diet nor do I miss the old lousy foods I used to eat. For I have gained so very much, my health.

I have my life back. I am not tied to a toilet. I feel and look great. Thank you, Elaine for showing me I can lead a normal life. I wish you all the strength and the will power to stay on the diet. I wish you all health and happiness. And I look forward to many more anniversaries on this fantastic diet. much love, Annie

From: Samantha
Subject: message from the SCD website form
Date: Wed, 24 Jan 2001

My name is Samantha. I am 16 years old and I was diagnosed with Crohn's Disease in March of 2000. In about November of 1999 I started getting very sick. I had flu like symptoms and after about a month of that going on, I finally went to my normal check up doctor. She had no clue what was wrong with me. I soon went to a pediatric endocrinologist. He also had no clue what was wrong so he gave me some medicine because he thought I just had an infection that never went away. I soon started getting even sicker. I couldn't keep anything I tried to eat down. Finally, in March of 2000 I went in for a colonoscopy and endoscopy. That is when they relized that I have Crohn's Disease. I was then put on numerous pills. I was up to about 15 pills a day. I was on prednisone which made me balloon up. None of the pills helped. My doctor then told my family and I about the Specific Carbohydrate diet. I was not very happy about the way it sounded since I really liked my sweets and b! read. But, I decided to give it a try. In early June I started it and I have been on it since. I've been on it for almost 7 months and I feel great. I cheat on the diet every once in awhile, but not a lot. I know I will never be able to go back to eating all the bad foods I did, but, it's worth it because I can lead a normal life now and not spend half the day in the bathroom. I would recomend this diet to anyone that suffers from Crohn's or Colitis

From: Ed, in the Netherlands
Subject: health statistics online
Date: March 15, 2001

I thought it might be interesting for other people to read the information and take a look at the statistics. It would be really nice if more people would publish this kind of information, because it might be possible to find parallels, etc. In particular, I think I should be possible to predict the effectiveness of the SCDiet before even starting the diet. Also, it might be possible to apply some datamining on the figures to get to know even more interesting facts.

I've kept note of my weight since the start of the SCDiet. I've also kept note of my condition (I gave myself a rating from 1-10 every day). Today I received my medical files from the hospital, so I've also posted my blood sedimentation, Hb, Ht, Erythrocytes, MCV, MCH en leucocytes ratings. I've combined all the information in nice charts and illustrations.

 Visit Ed's SCD Health Statistics page!

Subject: Matt update
Date: Mon, 17 Aug 2001
From: Lisa

I do more lurking than writing these days, but we just finished with Matt's checkup at his GI and I want to say a hearty AMEN, HALLULIAH, AND PRAISE THE LORD! The doc was very accepting of the fact that we had weaned Matt off the meds, was happy that Matt was doing so well, and told me to keep doing whatever it is we're doing. He wasn't going to endorse the diet of course (you know, a scientific study of this is impossible, blah, blah, yadda, yadda). I had grabbed the book on my way out of the door and took it out of my purse when he asked about it again. He flipped through it without really looking at it, but just the fact that he is at least supporting me in our choice to maintain this remission with diet is such an encouragement for me. Matt's weight has gone up a bit, his color is good, doctor felt his stomach and said it feels very good. Ended his "stomach check" with a hearty little slap on Matt's belly, surprising Matt and causing him to sit up. It was quite funny! He said to come back in a year and hopefully that we won't have to be calling him for any medications. Only things I'm wondering about is he didn't take any blood this time to check sed rate or iron levels. He explained that he feels that whether Matt is symptomatic is a better indicator of his condition. I wonder if this means he has a lot of confidence in the diet, or does it mean he's blowing us off? Well, no matter. Thanks to this great list and to you Elaine for being a warrior!..........................Lisa D :-)
(Son Matt, 18 years old, diagnosed UC in 1993)

I've been following the SCD since May and have seen great progress in my UC, which I've had off and on for the past 10 years. About a month ago I was feeling really good and decided to try a few illeagal foods. A BIG MISTAKE.

About a week after eating some potato, oatmeal and brown rice, the bleeding and other symptoms came back. I then went back on the SCD faithfully and am returning to more normal BM. I've learned my lesson. A few meals of grains and starches is not worth weeks of pain. I was amazed at how quickly the symptoms came back. It's just not worth it! No food tastes that good. During flare-ups, I've found that I don't tolerate fiber at all, so I stick to the starter diet plus homemade juice until things calm down. I'd like to thank everyone for this list. It provides an excellent source of information and support.