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.
at the 6-month mark is worthy of its own page:
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
Subject: Doctor visit.
Date: Tue, 16 Jan 2001
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.
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?
testimonial at the 22-month mark is worthy of its own page:
"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
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
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!
CD 15 years SCD 2 months
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!
Date: Mon, 23 Apr 2001
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.
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
Mon, 1 Nov 2001
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! :)
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.
Subject: 1 year anniversary
Date: Sat, 6 Jan 2001
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.
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
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
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!
Date: Mon, 17 Aug 2001
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
(Son Matt, 18 years old, diagnosed UC in 1993)
Sent: Tuesday, December 11, 2001
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
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.