Letters from the Specific Carbohydrate
Diet support group (9)
Diet success question
Thu, 26 Dec 1996 13:35:11
Hi Everyone
I am interested in some opinions from the group. I have just spent two weeks
in the
hospital separated by a week at home where I just got sicker with the worst
and most
resistant flare up of UC ever. I got out for Christmas day but have to go
back because
I am still on iv prednisone. The first time when they let me go I seemed
to
deteriorate on the oral prednisone. I am at the point of surgery (doctor's
opinion not
mine) or something like imuran. I am planning to see a Dr. Hanauer in Chicago
for a
second opinion before making any decisions since I seem to be out of any
kind of
emergency situation and have some time to decide.
My question is regarding the diet. It is very difficult to stop the one
thing which
you have a little control over however for a year I have had really no success
and very
little time off prednisone. I adhered to the diet strictly but I am beginning
to feel
that whatever relief I did see was strictly medication. I've never seen
any connection
with symptoms returning those times when I did have something not allowed.
What do you
think about this diet in the case where it doesn't seem to be helping. How
does it fit
in with all the theories? Do you think that some people are just too sick
for the diet
to give a turn around?
I'm sorry I can't be one of the people who offers a great success story,
I sure wish I
was. And I hope this won't be discouraging for anyone else trying the diet
out.
Hopefully I'm an outlier in the statistics.
Merry Christmas, Happy New Year and Good Health to Everyone
Christine
Thu, 26 Dec 1996 17:15:31
Christine,
Believe me, I know exactly how you feel. My doctor, a crohn's specialist,
has about 300 patients. He has told me that I am his biggest challenge.
My last doctor just gave up on me and I quit seeing him! But now, any new
medications or new treatments, I am always the first to try them out.
I tried the SC diet over a year ago and it never worked for me. I was part
of an earlier email support group and I would hear all these wonderful
success stories while I was going nowhere on the diet. So I quit trying
the diet.
About 4 months ago, I decided to give the diet another try. And although
I
still am not seeing miraculous success with it like some people, I am
seeing a little bit of progress. Its very hard for me to follow the diet
around the holidays, but I am not going to get discouraged because I've
slipped a few times. I am still going to stay on the diet into the new
year, and hopefully I will start to see some more progress again.
Now I know that you have UC and I have crohn's, but you should hang in
there and keep trying the SC diet. Stay with this group, they will give
you a lot of good info and encouragement. Have a healthy and happy `97!
-Jim-
If Diet Doesn't Work
Thu, 26 Dec 1996 19:34:45 GMT
Season's Greetings to everyone. I've just joined this group. My name is
Lisa
and I have a 3 1/2 year old son who is on the scd diet.
I see there are some messages from folks who are not getting any results
from
being on the diet. I was diagnosed with Crohn's about 30 years ago. I no
longer have any problems as long as I follow the diet that allows foods
that
"I" react to. The reason I put I in quotes is that everyone has
to find the
foods that they themselves do well with. If you are sensitive to the casein
in milk, as my son is, you will not do well as long as you continue to ingest
the cheese.
Also, a large part of digestive problems have to do with undiagnosed
parasites. If you haven't had a parasitology test done by a lab that
SPECIALIZES in parasites, you will not see results with the diet until the
parasites are dealt with. Even though I live in Georgia, I took my son to
see Dr. Leo Galland in New York City so I could get him rid of these
digestive problems.
Lisa
Not all success
Hi Christine,
Thu, 26 Dec 1996 20:40:00
I can't offer you any answers to your questions but feel empathy towards
your frustrations. One phrase from your letter " It is very difficult
to
stop the one thing which
>you have a little control" stays in my mind. If this diet gives
you a
sense of some control then it could be worth continuing, at least that way
you feel you're doing what you can for your self. The diet helps me a lot
but has not completely controlled my symptoms. I'm convinced now that it
never will but it has given my some measure of control and hope which I
find
now I can't abandon. I think that IBDs have many different underlying
causes and perhaps this is the reason that the diet doesn't work for all.
Our thoughts will be with you as you return to hospital to face some
difficult choices.
Good health
Amanda
Maybe tomorrow
Thu, 26 Dec 1996 21:44:04
Dear Christine,
I read your letter this morning and haven't been able to get
you out of my mind all day. I'm so sorry that the diet isn't the miracle
for you that it is for me and so many others. Maybe as Jim says, the diet
can work for you at another time. I'm glad that you are taking measures
not
to jump into surgery. You might consider a heart to heart chat with Elaine.
Her phone number is in the back of the book and she really tries to help.
She may have some ideas you hadn't considered. My thoughts and prayers are
with you.
Rachel
Thu, 26 Dec 1996 23:53:48
Christine,
Sorry to here about your problems. Have you been checked
for pathogenic bacteria and other parasites? I have been sending
stool samples to the Great Smokies Diagnostic Lab and they found an
offensive bacteria that I was able to get rid of. You can find more
about this lab by doing a search on the WWW.
In terms of diet, Have you considered an elimination diet that would
still be compatable with the SCD? This is how it works. You stop all
solid food for a couple of weeks then start solids by eating only one
SCD approved item and wait a few days before adding another food type.
This would allow you to find out if certain SCD foods are causing any
problems. Let me know if you need any info on liquid diets that are
available (TPN is another option for getting started).
If you do need surgery, I may be worth checking into laparoscopic
surgery rather than conventional surgery. I had 11 inches of gut
removed laparoscopically and it reduced my recovery time by a factor
of three. I was back at work part-time 9 days after the surgery. I can
also give you more info on this if you wish.
You are in my thoughts and I hope you recover soon. Please let me know
if there is anything I can do.
B. in Oregon
SCD: Digestive enzymes and butyrate enemas?
Fri, 27 Dec 1996 3:06:58
Has anyone found the following to be of benefit?
Therapeutic doses of digestive enzymes, particularly the vegetable derived
ones (the other major type comes from pancreases of cows or pigs). The
amylase will help digest extra carbohydrates, the lipase to break down the
fats, the protease to break down the protein (will sometimes help heal open
sores, but might burn), the lactase for the milk sugar, the cellulase to
digest the plant cellulose (effective against Candida yeast, a plant) and
then there is maltase and some other enzymes to break down the complex
carbohydrates. The benefit of the vegetable based ones is that they can
work
in the upper part of the stomach (which is acidic) as well as in the small
intestines. Extra enzymes are absorbed into the bloodstream where they can
continue to work. Amalyse, for instance, can help break up mucus (emphysema
and asthma possibilities).
Also, a naturopath told me about butyrate...buturic acid (given as a salt,
he said) retention enemas. He said they were very effective for lesion-type
diseases of the colon. For more information about the enemas, your health
care practitioner can call Tyler Encapsulation, 800-869-9705, to request
product outline and copies of studies.
* * * * * c 1996 Carol Wright * * * * * *
Re: SCD: Digestive enzymes and butyrate enemas?
Fri, 27 Dec 1996 4:07:24
I found both butyrate and the vegetarian digestive enzymes to be
absolutely worthless for my UC and related digestive problems.
Simon
Antibiotic-associated diarrhea
The question posed on the net was
"Does anyone know about a recent review on antibiotic-associated diarrhea
?
I am particularly interested in frequency, severity, specially as regards
pseudo-membranous colitis, and also specially with cephalosporins.
Thanks in advance to whoever can help!"
The response for those interested was:
"TITLE
Clostridium difficile colitis: recent therapeutical and immunological
considerations.
SOURCE
Acta Gastroenterol Belg 1995 May-Aug;58(3-4):313-7
AUTHOR(S)
Delm:ee M
Warny M
UNIQUE IDENTIFIER
96076760
Title
Antibiotic-induced colitis.
Author
Devenyi AG
Address
Department of Pediatrics, Milton S. Hershey Medical Center, Hershey, PA
17033,
USA.
Source
Semin Pediatr Surg, 4: 4, 1995 Nov, 215-20
Unique Identifier
96141332
Title
Clostridium difficile colitis: an efficient clinical approach
to diagnosis.
Author
Manabe YC; Vinetz JM; Moore RD; Merz C; Charache P; Bartlett JG
Address
Johns Hopkins School of Medicine, Division of Infectious Diseases, Baltimore,
MD 21205, USA.
Source
Ann Intern Med, 123: 11, 1995 Dec 1, 835-40
Unique Identifier
96061862
TITLE
Patterns and prognosis of Clostridium difficile colitis.
SOURCE
Dis Colon Rectum 1994 Aug;37(8):837-45
AUTHOR(S)
Marts BC
Longo WE
Vernava AM 3rd
Kennedy DJ
Daniel GL
Jones I
UNIQUE IDENTIFIER
94197152
TITLE
Epidemiology, clinical manifestations, and outcome of Clostridium
difficile-associated diarrhea.
SOURCE
Am J Gastroenterol 1994 Apr;89(4):519-23
AUTHOR(S)
Anand A
Bashey B
Mir T
Glatt AE
UNIQUE IDENTIFIER
94197152
Clostridium difficile colitis
330 (4):257 - Review Article
Kelly CP, Pothoulakis C, LaMont JT
UNIQUE IDENTIFIER
94011220
TITLE
Clostridium difficile colitis and diarrhea.
SOURCE
Gastroenterol Clin North Am 1993 Sep;22(3):623-37
AUTHOR(S)
Pothoulakis C
LaMont JT
Regards,
Mac/IN
>Hi all!,
>
>Thanks for all the replies re: Gaining Weight.
>
>One more question; Does anybody have any good recepies for breakfast
meals?
>I'm sort of getting tired of having eggs every morining... :]
>
>Thanks!
>Don.
Stewed fruits my mainstay to start with then as the diarrhea settles down
- fresh fruit, if it still has active enzymes, otherwise stick to stewed
fruit. cook it in the evening so you have some thing to wake up to and you
can even try some of the deserts on hand. I splurged and had a big slice
of banana cake, a small slice of cheesecake, 2 stewed apples, 1 stewed peach
and some home made yoghurt for breakfast today. That was interesting and
very yummy and with heaps of useable calories.
Regards Michael.
Some simple things that have helped me, and SCD
Sunday, 29 Dec 1996 23:35:54 GMT
Hello,
Here are some thoughts on recent messages, as well as a few simple ideas
that I posetd to alt.support.crohns-colitis. Any opinions?
- weight loss and SCD - my weight loss stabilized when I started regularly
baking with nut flour, AND regularly eating the dry curd cottage cheese.
I
especially like the muffins and carrot cake. Also, for additional
calories, try making your own guacamole from fresh avocados, tomatoes,
lemon juice, garlic, etc. You can use it as a dip for vegetables, or on
top of chicken or tuna with cheese.
- "Eating Right for a Bad Gut" book by Scala - I got this book
by James
Scala after it was recommended on the crohns-colitis newsgroup. It
doesn't offer any earth-shattering news, and much of it is at odds with
the
SCD. But, I found its explanation of vitamin and mineral supplement issues
very well done, and I've been following some of its suggestions with good
results, especially for the SCD. More ideas from this book follow....
- Scala's book, SCD and beet juice - one thing that Scala does is
informally survey a small set of IBD patients to determine what foods seem
to exacerbate or induce flare-ups. I was very interested to learn that
many of his subjects blamed beets or beet juice for causing flares. Beet
juice is one of the ingredients of V8 juice, one of the two canned juices
recommended by Gottschall in the SCD. When I started the SCD, I had
relied heavily on V8 juice because its delicious, nutritious, and you can
find it in most restaurants.
But I soon became convinced that it made me feel terrible, so I cut it out.
Then I read Scala's book and found that others had the same problem.
Is it possible that some people's bad experiences with the SCD are due to
drinking a lot of V8?
- peeling fruits and vegetables - Scala also urges peeling all fruits and
vegetables before eating. I believe this has helped me, and I eat a LOT
of
fuits and vegetables on this diet.
The following is what I posted to alt.support.crohns-colitis:
First of all, my case is not yet clearly diagnosed, but acc. to the doctor,
it "could be either colitis, UC, or non-specific colitis." Also,
I have
fairly moderate symptoms, though they've been persistent over the past few
months. I'm on Sulfasalazine, and trying the SCD diet. The Sulfasalazine
definitely helps, though I think it causes some mild but annoying
side-effects like fatigue and irritability. The SCD diet seems to be
helping, too, but I'm still not sure.
Beyond the obvious drugs, and various diet ideas, I've found the following
simple things seem to help a lot:
- garlic oil pills - they may not help everyone, and they may irritate some
people, but I've found that they definitely calm my abdominal discomfort,
reduce BM frequency, and firm up stools. I'm taking one or two 3-mg
softgels a day (Safeway brand).
- fish oil pills - they seem to help in the same way as the garlic. I'm
taking 3 1000 mg capsules each day with meals. The Brand is Good Nature
"MaxEPA" with EPA and DHA.
- tea instead of coffee - it was hard, but I've cut coffee out entirely
in
favor of tea. Just switching from coffee to tea (real tea with caffeine)
seems to have alleviated some symptoms. Someday I'll try to cut out the
tea, but, hey, I'm human.
- sleep - the more I sleep, the less symptoms I have. I guess that ties
in with stress, too.
- peeling vegetables and fruit before eating. This is suggested in the
book "Eating Right for a Bad Gut", by Dr. James Scala (ISBN 0-452-26766-8).
These ideas aren't much, but maybe they can help someone. And I'd rather
eat garlic and fish oil than more drugs.
B.
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