SCD-list September 1997


SCD-list Sun, 21 Sep 1997 Volume 1 : Number 46

In this issue:

Dextrose, yogurt
general question?
Re: general question?
Re: general question?
RE: general question?
Re: Resources in LA
general question?
Thanks Lucy
almond butter delight

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SCD MAILING LIST
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Date: Sat, 20 Sep 1997 22:40:21 -0400
From: MARLENA <MLSiegel@compuserve.com>
To: SCD_List <SCD-list@longisland.com>
Subject: Dextrose, yogurt
Message-ID: <199709202240_MC2-2130-BFB8@compuserve.com>

-------------Forwarded Message-----------------

From: MARLENA, =

To: SCD_List, INTERNET:scd@longisland.com
=

Date: 9/19/97 10:32 PM

RE: Dextrose, yogurt

Dear Compatriots: =


I've wondered about "dextrose" as well. It seems it should be
allowed (though I think it's clear "maltodextrose" is not). And, what is=

"nutritive dextrose"? That's the main ingredient in Sweet 'N Low. =


I've been on the diet 7 months (almost religiously). =


I did not try the yogurt at first because I like my food as sweet=

as possible, and yogurt is so tart. But then I read on the list about
using half and half. I miss milk so much (I used to drink about a quart =
of
whole milk or half and half a day). So, if I've given up chocolate and
bread and rice and potatoes, it would be nice to at least get something
creamy back. =


I ordered the Donvier yogurt maker (without the timer) from
Williams Sonoma. I have since ordered the extra jars -- be aware the
extras are plastic and the ones that come with the maker are glass. =


I ordered starter from Yogourmet. =


Using half and half, I now make a quart every two days. It is
wonderful. I put honey in mine and stir thoroughly. Sometimes I then pu=
t
it in the freezer for 20 minutes. No need for an ice cream maker. Last
weekend, I added frozen strawberries and honey with yogurt in the blender=

(I think the food processor would be better). I froze the resulting
mixture and created sherbert -- fabulous. I've also added apples baked a=
s
described in the book -- incredible. =


For me, the diet made a small difference fairly quickly. However=
,
I only just began to feel like it might be possible to become well in the=

last month. And, I still have symptoms and take asacol. I had to go bac=
k
on 15 mg. of prednisone 3 weeks ago. But, I am finally regaining some
energy and the arthritis has almost completely subsided. =


The most important thing I have learned is that if I am
unacceptably stressed, it does not matter what I am doing for the CD and
UC. Feeling out of control and having pent up anger take over everything=
=2E =

It is clear to me that learning to deal with anger and control without
internalizing my emotions is the key to all of this. =


The second most important thing I have learned is that I was
keeping myself going on the sugar and caffeine in chocolate (there was a
reason I had chocolate stashed in every room of my life). The chocolate
cravings have only just begun to ease. =


I have lost 13 pounds of sugar fat, my grossly bloated belly has
begun to disappear (thankfully, no one congratulates me on my pregnancy
anymore). =


For comparative purposes, I am 44, have had both CD and UC since
1985, managed to function with Asacol until last December. By May I was =
so
sick and debilitated (though the bleeding had stopped -- prednisone) I
thought I was going to become an invalid. =


As a result I transferred my law practice to my associate and am =
in
the process of retiring. I've gone to work for our court system -- one
full time job instead of 3. I attribute my most recent set back to the
pent up stress of wrapping everything up -- but I know I am on the right
road to becoming healthy. I feel stronger and more focused despite the
lingering pains and discomforts than I have in more than a few years. =


It took me years and I'm sure many influences to become this
debilitated, so it will probably take a while to grow strong. But, I wan=
t
to be around for a long time and I have an awful lot of things I want to =
do
with my life. So, even if the diet isn't a miracle for some, I recommend=

remaining committed if you believe it is helping at all. I think this is=
a
process that has to take place on many levels. =


BTW, the bad taste in my mouth of which I last complained is, I
think, prednisone (evil stuff, but sometimes the only temporary fix). =


There are a thousand more details, but there are many of us who
have lots to say. =


I think the yogurt has taken everything a step forward for me. S=
o,
I will delight in it for as long as that seems to be true. =


Best wishes to all. =


Marlena
Philadelphia

------------------------------

Date: Sun, 21 Sep 1997 12:55:53 -0400 (EDT)
From: MSWday@aol.com
To: SCD-list@longisland.com
Subject: general question?
Message-ID: <970921125248_1256766551@emout19.mail.aol.com>

How do I know if the diet is working. I've been on it for a week now: but
not sure? I started the diet when I was in good shape though.

I've had CD since '88. Been on the sulfa drugs and the pred.., but last year
I had my first MAJOR resection. I've been great since. Some minor cramping
and minor tenderness occasionally, but NOTHING like before. I started the
diet as a precautionary tactic. I still have the cramping and tenderness, so
I'm not sure.

What it really comes down to is: "am I causing myself extra hassle by
adhering to the diet, or should I just do what my doctor says (which is- if
it bothers you don't eat it, and if it doesn't eat it.) Because I love
pasta... LOVE IT!! And now I can't have it. AND I DON'T LIKE NOT HAVING IT!
I love sugar to, but I accept that it causes me problems I was trying to
avoid that anyway. (which means I cut down my intake -not gave it up
completely) I love bread to ... Bagels, sandwiches etc...

I think I'm at a crossroad. Do I make the sacrifice and stay on the diet, or
do I eat the way I enjoy eating??

any thoughts??

Mike

------------------------------

Date: Sun, 21 Sep 1997 13:22:26 -0500
From: Rachel Turet <rachel@longisland.com>
To: SCD-list@longisland.com
Subject: Re: general question?
Message-ID: <l03010d00b04b120e4a7f@[199.171.4.124]>

Dear Mike,
I totally understand your predicament. The diet is a hassle, no doubt about
it especially at the beggining, before it becomes a part of your daily
rituals. I wasn't in "great" shape when I started but I wasn't in the worse
shape I'd ever been in either. I started feeling the effects of the diet
immediately. My bleeding subsided, then stopped. Same for the pain and
urgency. How, if you're in great shape, can you tell if you are benefitting
from the diet? Well, if you stay on it, you may never know. You may also
never have to have another symptom or resection. I think that statiscally
speaking, most people whose symptoms have led to surgery, eventually need
another. I could be wrong, but most of the people I've been in touch with
lead me to beleive that in most cases, if the causes of the disease (such
as eating habits) aren't changed, there's not much hope in avoiding
reccurance of the disease. In your case, maybe you'll never have another
bout, no matter what you do. Who knows? I know that giving up grains and
sugars is a major sacrifice, but you can become accustomed to it, if you
beleive it can keep you healthy. Are you still on meds? I've been off meds
for about a year and 1/2 (on the diet 2 & 1/2) and the diet itself is
enough to keep me symptom free. I don't know if my letter helps in your
dilema. I can only tell you that the diet has been a life saver for me.
Good luck in whatever you decide.
Rachel

------------------------------

Date: Sun, 21 Sep 1997 13:33:52 -0400 (EDT)
From: EllenAdams@aol.com
To: SCD-list@longisland.com
Subject: Re: general question?
Message-ID: <970921133237_-630589577@emout06.mail.aol.com>

In a message dated 97-09-21 12:56:08 EDT, you write:

<< I think I'm at a crossroad. Do I make the sacrifice and stay on the diet,
or
do I eat the way I enjoy eating??
>>

You might find that, given a little more time, you enjoy the diet more. I
know most of my cravings pretty much faded and that surprised me (I was just
sure I'd be dying for a coke by now, but I find that I genuinely prefer apple
juice at this point!) I've been on the diet for about 3 weeks.

In my case it's made a big difference in how I feel so I'm highly motivated
to continue. But I can see how if it doesn't seem to make that much
difference, you'd question whether it's worth it.

One idea would be to get an ELISA test for food sensitivities. You can be
sensitive to foods without realizing it. A compromise diet for you at this
point might be to religiously avoid those foods you test as sensitive to.
The test might give you the concrete motivation to avoid those foods, and
avoiding them might help to prolong your remission.

Ellen

------------------------------

Date: Sun, 21 Sep 97 19:43:08 UT
From: "Jennifer Jenkins" <jjnkns@classic.msn.com>
To: SCD-list@longisland.com
Subject: RE: general question?
Message-ID: <UPMAIL13.199709211849230863@classic.msn.com>

----------
From: MSWday@aol.com
Sent: Sunday, September 21, 1997 11:55 AM
To: SCD-list@longisland.com
Subject: general question?

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SCD MAILING LIST
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How do I know if the diet is working. I've been on it for a week now: but
not sure? I started the diet when I was in good shape though.

I've had CD since '88. Been on the sulfa drugs and the pred.., but last year
I had my first MAJOR resection. I've been great since. Some minor cramping
and minor tenderness occasionally, but NOTHING like before. I started the
diet as a precautionary tactic. I still have the cramping and tenderness, so
I'm not sure.

What it really comes down to is: "am I causing myself extra hassle by
adhering to the diet, or should I just do what my doctor says (which is- if
it bothers you don't eat it, and if it doesn't eat it.) Because I love
pasta... LOVE IT!! And now I can't have it. AND I DON'T LIKE NOT HAVING IT!
I love sugar to, but I accept that it causes me problems I was trying to
avoid that anyway. (which means I cut down my intake -not gave it up
completely) I love bread to ... Bagels, sandwiches etc...

I think I'm at a crossroad. Do I make the sacrifice and stay on the diet, or
do I eat the way I enjoy eating??

any thoughts??

Mike

I am one of those people who subcribes to the list, but does follow the diet
strictly. I have However, I think it would be worthwhile to stay on the
diet until the cravings for pasta and bread subside. This, much to my
surprise, did happen about 3 weeks into during the period when I followed it
religiously..

My doctor then recommended that I add other foods. I was losing too much
weight--she had never weighed me on a scale, this was just her
observation--and I felt like I never had enough energy for full-time work and
school at night. I started with just slow-cooking oatmeal. I allow myself
brown rice from time to time--I'm not sure yet sure if it's OK for me. Wheat
remains a problem.

I think the most important thing that happened while I was on the diet was
losing my insatiable cravings for wheat and other starches. I now eat
considerably less grain or starch based food and feel much better. I don't
feel like I need it at every meal any more. I seem to have a threshold for
carbohydrates in general. A little here and there doesn't bother me, but
something like the 11 servings a day in the USDA food pyramid is way too much.


One book called Natural Healing by Jack Soltanoff, has a couple of different
diets based on natural foods. He feels that wheat and other gluten-containing
foods should be avoided, but allows 2 eat-whatever-you-want days on the less
spartan diet.

My condition, so the doctor tells me, is not that severe, so I can probably
afford to do more experimentation than others on this list. However, it's
hard to really identify your own sensitivities unless you spend a few weeks on
a diet like the SCD.

Good luck.

------------------------------

Date: Sun, 21 Sep 97 08:42:11 +0800
From: "Tom Cattrall" <tomc@pnn.com>
To: "SCD-list@longisland.com" <SCD-list@longisland.com>
Subject: Re: Resources in LA
Message-ID: <199709212052.NAA13355@pnn.com>

The local Safeway here in Oregon carries Dry Curd Cottage Cheese. It is Lucerne brand and
comes in a plastic bag. Recently happened across it while looking for cheese.

Since Lucerne is a Safeway brand, I'd expect that any Safeway store should be able to get it.

Tom

------------------------------

Date: Sun, 21 Sep 1997 18:08:12 -0500
From: "Jim Prousalis" <j-pro@mindspring.com>
To: "SCD LONG ISLAND" <SCD-list@longisland.com>
Subject: general question?
Message-ID: <199709212208.SAA04504@brickbat9.mindspring.com>

I will give you one quick thought.
You said "Some minor cramping
and minor tenderness occasionally, but NOTHING like before. I started the
diet as a precautionary tactic. I still have the cramping and tenderness,
so
I'm not sure".
Sounds to me you should give the diet a chance about a month or so.
See if the cramps and the tenderness goes away.
Are you on the diet 110%?

Good Luck!

Jim

------------------------------

Date: Sun, 21 Sep 1997 18:42:47 -0500
From: Rachel Turet <rachel@longisland.com>
To: SCD-list@longisland.com
Subject: Thanks Lucy
Message-ID: <l03010d02b04b5f948108@[199.171.4.131]>

Dear Lucy & all,
I just took your advice about baking. My complaint was that in order to get
my baked goods cooked inside, the outside would get burnt. You said "bake
longer at a lower temp". Duuhh!!! I just made bananna cake with crushed
pecans. I swear I don't remember bakery stuff tasting this good. If anyone
wants to try something different and you like beans and saurkraut, try this
variation on my Hungarian Mom's sour cream soup (yogurt instead of sour
cream). I use 2 lbs of beans cause I really love them. Best at room
temperature.
1 lb. of navy beans
4 cups of yogurt (I use half & half)
1 egg yolk
1 lb of saurkraut
1 tblspoon salt

soak beans as usual, then cook an hour (4 inches of water above the beans)
then add salt, cook another hour (or until beans are pretty soft, but still
firm ) then add saurkraut, cook another 20 min.
In a large glass (corningware worked well for me) dish, slowly add the egg
yolk to the yogurt (kind of like how you add the starter). Then slowly add
the hot water from the beans into the yogurt, a ladelfull at a time,
stirring well, When this mixture becomes warm (feel the bottom of the
dish), it is safe to add the yogurt mixture back into the beans. Bring to
slow simmer, then shut off and it is done. Served room temperature or cold.

------------------------------

Date: Sun, 21 Sep 1997 19:26:29 -0400 (EDT)
From: SHADOWPUP@aol.com
To: SCD-list@longisland.com
Subject: almond butter delight
Message-ID: <970921192337_1458977556@emout16.mail.aol.com>

for a pretty good dessert (something different):

bananas
almond butter
yogurt
honey if desired

in individual pyrex cups, slice bananas thin and layer on bottom. layer
almond butter on top of bananas and add another layer of thinly sliced
bananas. add honey if desired. top with yogurt. FREEZE. thaw at room
temperature 1/2 hour before serving.

also good is bananas, strawberries and yogurt.

Joan

------------------------------

End of SCD-list V1 #46
**********************


SCD-list Mon, 22 Sep 1997 Volume 1 : Number 47

In this issue:

Mike's "dilemma"
Re: general question?
dairy allergy
diet psychology
Re: general question?
Re: general question?
Prednisone
RE: Prednisone
Re: Asacol and headaches/SCD and dorm life/insurance issues/
Re: Asacol and headaches/SCD and dorm life/insurance issues/
Re: Prednisone
carbohydrate dreams
Re: Prednisone
Re: diet psychology
Re: Has anyone out there with UC been really cured...back on normal diet
RE: Stewart: pregnant wife

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Date: Sun, 21 Sep 1997 21:00:55 -0400 (EDT)
From: SHADOWPUP@aol.com
To: SCD-list@longisland.com
Subject: Mike's "dilemma"
Message-ID: <970921205136_2030785204@emout12.mail.aol.com>

Mike -

Make the sacrifice which is temporary, as everything in life is, and then
after the year of no symptoms, HAVE FUN! if you decide to stop and have
symptoms, etc., you will have to weigh if it is worth it.

ps. i agree with Rachel

Joan

------------------------------

Date: Sun, 21 Sep 1997 23:55:49 -0400 (EDT)
From: JPS3450@aol.com
To: SCD-list@longisland.com
Subject: Re: general question?
Message-ID: <970921235335_-1932098463@emout18.mail.aol.com>

Mike,

I think that you should at least give this diet a chance. I too love all
kinds of "forbidden foods". I am 27 years old and have had UC for 15 years.
I was on all kinds of medications like azulfidine and Asacol, not to mention
prednisone. Ask yourself one question--do you want to keep going to doctors
and the hospital for the rest of your life? In other words, what keeps me
going is believing that If I keep with this diet, I wont have to listen to
all the pessimistic doctors who dont know anything.
To give you some encouragement, I have been on the diet for almost nine
months. It is very very difficult at first. Just give it some time and some
amazing things will happen.

Good Luck,

J.P.

------------------------------

Date: Sun, 21 Sep 1997 21:33:45 -0800
From: lorraine kerwood <raino@uoregon.edu>
To: SCD-list@longisland.com
Subject: dairy allergy
Message-ID: <34260339.3FE5@uoregon.edu>

Hello,
I have recently discovered SCD and am cautiously hopeful and excited
that it will help me with my lifelong IBD. I began the diet three days
ago (the strict one), and some of my symptoms are better, some not.
My big question--I am allergic to dairy. I have been using goat's milk
yoghurt, and been unable to locate dry curd cottage cheese. One of the
symptoms I am having is excema, which usually occurs when I eat dairy.
Advice? Help?

------------------------------

Date: Mon, 22 Sep 1997 16:01:17 +0800 (WST)
From: Jim Tsoukalas <jtso@carmen.murdoch.edu.au>
To: SCD-list@longisland.com
Subject: diet psychology
Message-ID: <Pine.SOL.3.91.970922143858.13671A-100000@carmen>

Hullo,
A recent posting by Mike is indicative of the inertia of
life-style patterns even in the face of serious disease. It's difficult
to accept that something as basic and pleasureable as eating sweets is to
be eschewed, but a chronic disease necessitates a complete shift in one's
thinking and function in life. The loss of life-style associated with
avoiding a very large class of carbohydrates though, is trivial compared to
the losses incurred from suffering many other diseases (eg., MS).
We need to be conscious that there is no cure for CD or UC, and
that (though the point may be open to debate) possibly the most likely
factor in shortening the lifespan of sufferers is surgery relatively
early in life. In the absence of definite knowledge about the
pathogenesis of the disease the value of surgery as a long term solution
will be open to question.
Since there is no cure, sufferers should incorporate into their
thinking the fact that in any foreseeable future they will continue to
have the disease to contend with. It should be realized that a concession
made in the area of eating habits may well buy for a sufferer the
opportunity to function normally in every other capacity, possibly for an
undiminished span of life.
As far as I'm aware there are three strategies for self-
management of IBD's, restriction diets (eg., SCD), probiotics (the
cultivation of 'beneficial' bowel flora through diet or infusion), and
prebiotics (the ingestion of carbohydrates which are fermented in the
colon to produce short chain fatty acids which are purported to have
beneficial effects on the colon wall).
Something that sufferers should be aware of is that medical
treatment is based on a short-term model. When a doctor tells you that
you must take a medication for the foreseeable future, that is not a
long-term strategy, that is a short-term solution extended to an infinite
time horizon.
Sufferers of IBD are fortunate in that the disease can often be
managed with life-style changes and monitoring. But first the sufferer
has to accept some hard realities about their condition. Then they can
obtain information about the possibilities open to them and hopefully
negotiate with their specialist a long-term management plan for the
disease, rather than simply accepting 'reactive medicine' (essentially,
waiting for the disease to do something, and treat that).
None of this is easy. That's why they call it dis(s)-ease.

Regards,
James
Oz

------------------------------

Date: Mon, 22 Sep 1997 08:31:43 -0400
From: Matthew Cirillo <mcirill@emory.edu>
To: SCD-list@longisland.com
Subject: Re: general question?
Message-ID: <3426652F.F5066027@emory.edu>

JPS3450@aol.com wrote:

> I wont have to listen to all the pessimistic doctors who dont know
> anything...

Hey! I object! Doctors, especially those treating UC and Chrons
patients, particularly those who look at you sideways or suddenly lose
their hearing when you try to describe the benefits that avoiding
complex carbohydrates has brought you, they know plenty! Particularly
that they have huge mortgages and Mercedes car payments as well as high
insurance costs. If suddenly all their patients were eating themselves
healthy, well, I better shut up before the AMA has Elaine's book
"removed" from print...

> To give you some encouragement, I have been on the diet for almost
> nine
> months. It is very very difficult at first. Just give it some time
> and some
> amazing things will happen.
>

I've been on the diet for over a year and a half, and I can say, at 37
years old, that I've never felt better! I've started cheating, just to
see if anything happens (had 6 beers the other night, only got a
hangover!) I am staying on the diet for the rest of my life, but only
religiously for the next 6 months).

> Good Luck,
>
> J.P.

------------------------------

Date: Mon, 22 Sep 97 08:17:09 PDT
From: "Kim Endres" <kendres@resdyn.com>
To: "LongIsland SCD List" <SCD-list@longisland.com>
Subject: Re: general question?
Message-ID: <MAPI.Id.0016.00656e64726573203030303730303037@MAPI.to.RFC822>

Mike, Sometimes such a strong craving to a food and resistance to doing
without it can indicate an intolerance for that food. Try to get past the
first few weeks of strong cravings, then "challenge" yourself by eating
just a little of it and see if you have a reaction (usually within the
first few hours, sometimes as much as 24 hours). I know that I felt the
same way about milk.

Good luck, Kim

----------
>
> --------------------------------------------------------------------
> SCD MAILING LIST
> -------------------------------------------------------------------
> How do I know if the diet is working. I've been on it for a week now: but
> not sure? I started the diet when I was in good shape though.
>
> I've had CD since '88. Been on the sulfa drugs and the pred.., but last
year
> I had my first MAJOR resection. I've been great since. Some minor cramping
> and minor tenderness occasionally, but NOTHING like before. I started the
> diet as a precautionary tactic. I still have the cramping and tenderness,
so
> I'm not sure.
>
> What it really comes down to is: "am I causing myself extra hassle by
> adhering to the diet, or should I just do what my doctor says (which is-
if
> it bothers you don't eat it, and if it doesn't eat it.) Because I love
> pasta... LOVE IT!! And now I can't have it. AND I DON'T LIKE NOT HAVING
IT!
> I love sugar to, but I accept that it causes me problems I was trying to
> avoid that anyway. (which means I cut down my intake -not gave it up
> completely) I love bread to ... Bagels, sandwiches etc...
>
> I think I'm at a crossroad. Do I make the sacrifice and stay on the diet,
or
> do I eat the way I enjoy eating??
>
> any thoughts??
>
> Mike

------------------------------

Date: Mon, 22 Sep 1997 09:36:18 -0400 (EDT)
From: JPS3450@aol.com
To: SCD-list@longisland.com
Subject: Prednisone
Message-ID: <970922093526_676576812@emout15.mail.aol.com>

I was wondering if anyone who is on this diet is also taking prednisone. I
have been on the diet for 9 months and havent been able to get off this damn
stuff. My short term goal is to get off it and I have been down to a few
milligrams, but when I get real low, I just get diahrreah and lose a lot of
weight. The one thing that I have noticed on this diet is that although I
have lost about 20 pounds, my appetite is huge. Usually with UC I lost my
appetite as an affect of the disease.

Does anyone have any experiences that they can share with me? I am currently
on 20 mil. of pred, and I discontinued my asacol and other drugs. The only
thing I take is the pred. and I want to get off of this crap.. Please Help..


Thanks,
J.P

------------------------------

Date: Mon, 22 Sep 1997 16:31:45 +-100
From: Stuart Firth <sfirth@centerline.com>
To: "'SCD-list@longisland.com'" <SCD-list@longisland.com>
Subject: RE: Prednisone
Message-ID: <01BCC775.3F84CC60@rsfirth.centerline.com>

------ =_NextPart_000_01BCC775.3F8DF420
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Hi J.P.,

I was wondering if anyone who is on this diet is also taking prednisone. =
I
have been on the diet for 9 months and havent been able to get off this =
damn stuff. My short term goal is to get off it and I have been down to =
a few
milligrams, but when I get real low, I just get diahrreah and lose a lot =
of
weight.=20

>> I was tailoring off from 20 to 1 mg when I started the diet and so =
far (3.5 months later) I have had no ill effects. One thing I'd say is =
that there seems to be a wide band of how bad the disease is - I may be =
fairly mild whilst you may be more severe, so its difficult to =
generalise.

The one thing that I have noticed on this diet is that although I
have lost about 20 pounds, my appetite is huge. Usually with UC I lost =
my
appetite as an affect of the disease. =20

>> I've lost 20 pounds also in 15 weeks. Also, I have more energy than =
in a long, long time. I do get cravings for forbodden foods, but =
occupying yourself with other things (not difficult with two young kids) =
is a great way of forgetting the hunger.

Does anyone have any experiences that they can share with me? I am =
currently
on 20 mil. of pred, and I discontinued my asacol and other drugs. The =
only
thing I take is the pred. and I want to get off of this crap.. Please =
Help..


Thanks,
J.P

>> Stuart

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l9M=

------ =_NextPart_000_01BCC775.3F8DF420--

------------------------------

Date: Mon, 22 Sep 97 12:08:18 CDT
From: ted.kyle@vantis.com (Ted Kyle)
To: SCD-list@longisland.com
Subject: Re: Asacol and headaches/SCD and dorm life/insurance issues/
Message-ID: <9709221708.AA11342@swansong.amd.com>

hi




my son takes 12 asacol a day, and he has headaches, usually about
4 hours after taking the dose. the doctor told him to reduce the
dose , due to the headaches and since his D had stopped.

will the headaches go away with time? ( he has been taking 12 a day
for about 45 days, he has had headaches ever since.)

just in case anyone wants to know, i talked to University of Texas
disability services and they are going to be a big help, russell
can get support and understanding from this group while going to
college. The UC will probably ensure his admission, they register you
as student with a disability, you get letters sent to your professor
and they work with the professors so that they allow
for your illness if needed. the lady i talked to on the phone
actually has IBD herself and was really supportive, she referred
me to her doctor who has a nutritional approach to the disease, i
wonder if it's the SCD.

Has anyone been successfull in getting a college to serve a student
with IBD disability the SCD diet ?

i am getting the ball rolling with my company on extending russell's
medical coverage beyond the age of 19, regardless of his status as
a full time student, hopefully this will go OK, has anyone else
had any experience with this?

ted

------------------------------

Date: Mon, 22 Sep 1997 13:20:33 -0400
From: Bill Miller <miller@bedford.net>
To: SCD-list@longisland.com
Subject: Re: Asacol and headaches/SCD and dorm life/insurance issues/
Message-ID: <3426A8E1.4B310AB6@bedford.net>

Ted Kyle wrote:

> i am getting the ball rolling with my company on extending russell's
> medical coverage beyond the age of 19, regardless of his status as
> a full time student, hopefully this will go OK, has anyone else
> had any experience with this?
>
> ted

All I can say is that you be very very sure that you dot the t's and
cross the i's. I lost my insurance 1 year into the disease. When I was
finished with my undergrad degree (and on my parents policy) I switched
to the university insurance which cost me about $30 a semester. I
wasn't sick at the time. Then I got sick, and when I left school, there
was no way to keep the insurance and I was self employed, so I couldn't
get any insurance at all.

In retrospect, once I started paying for my health care, I started
getting my money's worth. I'm not sure if I would be as healthy as I am
today if it wasn't for losing my insurance. I'm sure we all know people
who will say: "But my insurance doesn't cover it, I _can't_ do that."
(yes you can, yes you can, wake up!). I really think we'd all be a lot
more healthy if we just paid for our own day to day care -- leave the
big operations to the insurance. We'd probably be much richer in terms
of the lowered costs - not only in premiums but in doctor's bills.

------------------------------

Date: Mon, 22 Sep 1997 14:58:07 -0230 (NDT)
From: "Neil G. Bishop" <nbishop@calvin.stemnet.nf.ca>
To: SCD-list@longisland.com
Cc: SCD-list@longisland.com
Subject: Re: Prednisone
Message-ID: <Pine.OSF.3.91.970922145011.17428A-100000@calvin.stemnet.nf.ca>

Hi J.P.,

I'm also on the dreaded pred. down to 10mg. a day and crossing my
fingers! I'm also taking NOVO -5 ASA ( a generic Asacol with no lactose)
which is helping me wean off the pred.. I've been on the diet 5 months
and certainly feel better for it - less bloating and gas, and I eat like
mad without weight gain. My doctor, although a tad sceptical, is
supportive as long as I eat a balanced diet and really wants me off the
pred. as soon as possible but using the NOVO (Asacol) as a maintenance
drug as long as necessary. I do stick to the diet religously (except for
a little too much Scotch at times), and quite enjoy it and really hope it
is the ticket to getting off and staying off the steroids.

Good luck,
Neil

------------------------------

Date: Mon, 22 Sep 1997 13:02:51 -0400
From: "Mazer, C. & Blank, J." <103120.612@compuserve.com>
To: new SCD <SCD-list@longisland.com>
Subject: carbohydrate dreams
Message-ID: <199709221303_MC2-216F-74A9@compuserve.com>

Hi listies,

Working in the "chemical dependency" field, you learn that one of the
symptoms of drug withdrawal (actually, it's a symptom of "post-acute
withdrawal") is drug dreams: the person dreams of getting high, of getting
the drugs, of being chased by cops because of drugs, or whatever to do with
drugs. Well, I've been having carbohydrate dreams (after about 6 weeks on
the diet)!

Has anyone else experienced these?

An example: I'm in a bagel restaurant, where they serve bagels with
assorted toppings, cream cheese, butter, the usual, but up to and including
bagels with french-fries (that's the one I pick).

I'm not really having much problem with actual cravings -- just now and
then when I see a particularly good-smelling bagel or whatever. Just the
dreams.

John Blank

------------------------------

Date: Mon, 22 Sep 1997 13:53:02 -0400
From: Matthew Cirillo <mcirill@emory.edu>
To: SCD-list@longisland.com
Subject: Re: Prednisone
Message-ID: <3426B07D.F2883250@emory.edu>

JPS3450@aol.com wrote: ... havent been able to get off this damnstuff.
... and I want to get off of this crap.. Please Help..

> Thanks,
> J.P

I'm not a physician, but, speaking from experience:

Sounds like you're definitely on the prednisone wavelength! I am at
the final stage of pred, which I started taking after an annoying and
unexpected flare (I've been on the diet over a year). Having been on the
diet for so long, I believe, along with the pred, my flare went away
very quickly, and this was with 20mg max per day. Now I'm taking 5mg.
every other day, which is practically nothing, except that towards the
end of the second day, I get tired, which I attribute to prednisone
withdrawal. I have noticed my stools loosening a bit, but I attribute
this to my ability (and practice)of eating raw veggies, lots of apples,
and nut flour. I am going to alter my diet a bit, going more towards
cooked squashes, hamburgers, etc, until I'm more normal. But I have no
"urgency" or bleeding which were prevalent prior to and during the first
6 months of the diet. (actually I was bleeding a tiny bit even past the
first year).

I think you need to stay on meds a while longer, sticking religiously to
the diet as I had (everyone's different, mind you), and just wait it
out. In a year, if you have a flare, it will require less medical
treatment, this has been my experience.

------------------------------

Date: Mon, 22 Sep 1997 10:48:51 -0700
From: "Rosset" <plrosset@pacificrim.net>
To: <SCD-list@longisland.com>
Subject: Re: diet psychology
Message-ID: <199709221755.KAA05859@cascade.pacificrim.net>

----------
> From: Jim Tsoukalas <jtso@carmen.murdoch.edu.au>
> To: SCD-list@longisland.com
> Subject: diet psychology
> Date: Monday, September 22, 1997 1:01 AM
>
> --------------------------------------------------------------------
> SCD MAILING LIST
> -------------------------------------------------------------------

Jim wrote:

As far as I'm aware there are three strategies for self-
> management of IBD's, restriction diets (eg., SCD), probiotics (the
> cultivation of 'beneficial' bowel flora through diet or infusion), and
> prebiotics (the ingestion of carbohydrates which are fermented in the
> colon to produce short chain fatty acids which are purported to have
> beneficial effects on the colon wall).

Dear Jim,.
I would be interested in knowing more about prebiotics, because I was under
the impression that fermenting carbohydrates in the colon actually was a
major cause of trouble for people with IBD.
Could you please elaborate.
Lucy

------------------------------

Date: Mon, 22 Sep 97 13:59:04 MDT
From: "Daniel Woods" <dwoods@acs.ucalgary.ca>
To: SCD-list@longisland.com (SCD-diet mail list)
Subject: Re: Has anyone out there with UC been really cured...back on normal diet
Message-ID: <9709221959.AA114546@acs5.acs.ucalgary.ca>

Hi Bill,

.... "(And I got off the drugs in 4 months!)"

I agree with you about Chiropractors who specialize in other areas. I used
to see one in Toronto who was also a Naturopath. He believed strongly in the
yeast connection. I followed his diet (from 30+ years experience) which
was mainly avoid all dairy and sugar. Similar to SCD except that I ate
pasta, potatoes, rice. He would not let me have ANY fruit for at least
a year. I noticed big changes the first week by removing all sugar and
drinking lots of 'clean' water. I was off all prescription drugs within
6 months (prednisone, Flagyl). I regained weight as my energy increased
and I started to exercise more. I did this for over two years religiously.
And then I strayed from the diet, eventually needing my second surgery
a couple of years. I paid the price for not staying with what worked.

I now follow the SCD diet religiously. I hope others will learn from my
experiences (and mistakes).

Thanks... Dan.

***************************************************************
* Dan Woods The University of Calgary *
* dwoods@acs.ucalgary.ca Calgary, AB, CANADA, T2N 1N4 *
***************************************************************

------------------------------

Date: Mon, 22 Sep 97 14:14:17 MDT
From: "Daniel Woods" <dwoods@acs.ucalgary.ca>
To: SCD-list@longisland.com (SCD-diet mail list)
Subject: RE: Stewart: pregnant wife
Message-ID: <9709222014.AA125366@acs5.acs.ucalgary.ca>

Hi Stewart (from UK),

<< It's been hard to stick to the diet when you've got two young kids and
a pregnant wife, ... >>

I've been dying to respond to this one for a while. I could not before
because my wife and I were not telling anyone yet. We (yes we) are pregnant
with our second child :) (three months).

I can very much relate to how much work it is taking care of a pregnant wife,
an 18-month old, cleaning the kitchen/house, finances, getting a garage built
right now, *and* cooking/preparing the SCD related foods. This pregnancy
is hard on my wife because she has a lot of nausea, and morning sickness ALL day.
This of course creates a lot more work for me, on top of my full-time job at
the university. It sure sucks out all the remaining energy that I have. It's
a good thing that the SCD (after three months) has given me more energy. I have
now started doing pushups again.

So, overall, "every day in every way, I am getting better and better".

Thanks... Dan.

***************************************************************
* Dan Woods The University of Calgary *
* dwoods@acs.ucalgary.ca Calgary, AB, CANADA, T2N 1N4 *
***************************************************************

------------------------------

End of SCD-list V1 #47
**********************


SCD-list Tue, 23 Sep 1997 Volume 1 : Number 48

In this issue:

baker's cheese
food sensitivity test
Re: Prednisone
Re: Prednisone
Institut fur Mikrookologie any good?
yogurt starter
Extra pointers for quiche recipe

--------------------------------------------------------------------
SCD MAILING LIST
-------------------------------------------------------------------

----------------------------------------------------------------------

Date: Mon, 22 Sep 1997 20:36:00 -0600
From: aagvani@muse.sfusd.k12.ca.us (Steve Hooker)
To: SCD-list@longisland.com
Subject: baker's cheese
Message-ID: <199709230229.TAA10772@muse.sfusd.k12.ca.us>

>Mike and Steve,
>
>Here in the San Francisco Bay Area, and maybe in southern California as well,
>dry curd cottage cheese is more often called baker's cheese. Also, several
>weeks ago there was a post that gave the name of a store in San Francisco
>that was willing to ship DCCC to customers.
>
>Tom

Hi,
That post was mine, and the store (in S.F.) is :

Country Cheese Co.
415 Divisadero St.
San Francisco, CA 94117
(415)621-8130

The owner's name is Mario Mariscal, and his price is very reasonable too. I
pay $2.00 per lb. that's before shipping of course. Mario told me that he
ships it frozen to people. Also try any bakery that sells cheese dainishes.
find out where they get their cheese.

------------------------------

Date: Tue, 23 Sep 97 11:21:12 -0400
From: Renee Zobkiw <rz@triplesoft.com>
To: <SCD-list@longisland.com>
Subject: food sensitivity test
Message-ID: <1337108355-9869821@mailhost.triplesoft.com>

Hi,

Would someone be kind enough to repost the information about the food
sensitivity test that you can have done? Was it called ELISA, or
something like that?

Thanks a bunch,

<renee>

------------------------------

Date: Tue, 23 Sep 97 10:07:40 MDT
From: "Daniel Woods" <dwoods@acs.ucalgary.ca>
To: SCD-list@longisland.com (SCD-diet mail list)
Subject: Re: Prednisone
Message-ID: <9709231607.AA147116@acs5.acs.ucalgary.ca>

Hi group,

It's good to see some new people getting involved on the list, either
asking questions or giving supportive answers.

To those asking about getting off prednisone, do so as soon as your
situation allows. After being on the SCD for a while, your body will
start healing itself *naturally* and the need for prednisone will go
away. I believe that you are better off with Asacol (for UC) or
Pentasa (for CD like me), since these have much less side-effects.

Prednisone has *serious* side-effects and complications... it is a steroid.
For those who take, or used to, prednisone I would suggest you ask your
doctor about getting a bone-density x-ray. This is very mild radiation
and a very simple (relaxing) test. It will help you determine if you
have any bone loss, which leads to osteoporosis. I was diagnosed with
*severe* (like an 80-year old) osteoporosis at age 31 because of prednisone.
This is not to scare anyone, but it is a fact. IBD also robs bone density
because loss of calcium in the bones is a result of protein malabsorption,
not from lack of calcium intake. It's the protein that helps to bind the
calcium to the bones.

Even though I have osteo, I walk and look quite normal. What it really
means is that I have five times higher risk of bone fractures. So
contact sports (oh darn), and parachuting (oh well) are out of the question.
It's a good thing already did bungy-jumping (in water) before I was ever
diagnosed :)

I write this to let those using prednisone be properly informed of the risks.

Thanks... Dan.

***************************************************************
* Dan Woods The University of Calgary *
* dwoods@acs.ucalgary.ca Calgary, AB, CANADA, T2N 1N4 *
***************************************************************

------------------------------

Date: Tue, 23 Sep 1997 11:01:53 -0700
From: "Rosset" <plrosset@pacificrim.net>
To: <SCD-list@longisland.com>
Subject: Re: Prednisone
Message-ID: <199709231805.LAA03734@cascade.pacificrim.net>

Another bone related side effect from prednisone is something called
necro.... can't think of the word, but it has to do with the blood supply
dying off, especially to the hip joints. I know a 32 year old male dealing
with this problem, he's now looking at needing hip replacement surgery.
This is a big problem at his age because the new hip only lasts about 10
years, and they can only do it I think he told me 3 times. He was only on
prednisone for a couple of months.
I have decided not to ever take prednisone again, unless it is absolutely
necessary to save my life. I would rather lose my colon than lose all you
can lose on prednisone. I believe it is prescribed much too casually.
Lucy
PS. Congratulations Dan on the new bambino on the way.

----------
> From: Daniel Woods <dwoods@acs.ucalgary.ca>
> To: SCD-diet mail list <SCD-list@longisland.com>
> Subject: Re: Prednisone
> Date: Tuesday, September 23, 1997 9:07 AM
>
> --------------------------------------------------------------------
> SCD MAILING LIST
> -------------------------------------------------------------------
> Hi group,
>
> It's good to see some new people getting involved on the list, either
> asking questions or giving supportive answers.
>
> To those asking about getting off prednisone, do so as soon as your
> situation allows. After being on the SCD for a while, your body will
> start healing itself *naturally* and the need for prednisone will go
> away. I believe that you are better off with Asacol (for UC) or
> Pentasa (for CD like me), since these have much less side-effects.
>
> Prednisone has *serious* side-effects and complications... it is a
steroid.
> For those who take, or used to, prednisone I would suggest you ask your
> doctor about getting a bone-density x-ray. This is very mild radiation
> and a very simple (relaxing) test. It will help you determine if you
> have any bone loss, which leads to osteoporosis. I was diagnosed with
> *severe* (like an 80-year old) osteoporosis at age 31 because of
prednisone.
> This is not to scare anyone, but it is a fact. IBD also robs bone
density
> because loss of calcium in the bones is a result of protein
malabsorption,
> not from lack of calcium intake. It's the protein that helps to bind the
> calcium to the bones.
>
> Even though I have osteo, I walk and look quite normal. What it really
> means is that I have five times higher risk of bone fractures. So
> contact sports (oh darn), and parachuting (oh well) are out of the
question.
> It's a good thing already did bungy-jumping (in water) before I was ever
> diagnosed :)
>
> I write this to let those using prednisone be properly informed of the
risks.
>
> Thanks... Dan.
>
> ***************************************************************
> * Dan Woods The University of Calgary *
> * dwoods@acs.ucalgary.ca Calgary, AB, CANADA, T2N 1N4 *
> ***************************************************************

------------------------------

Date: Tue, 23 Sep 1997 12:08:00 PDT
From: "Kurt Jensen" <kurt_j@hotmail.com>
To: SCD-list@longisland.com
Subject: Institut fur Mikrookologie any good?
Message-ID: <19970923190803.19952.qmail@hotmail.com>

Hi,

In my search for alternative therapies that might complement the SCD, I
ran into a German "Institut f¸r Mikro–kologie" in Herborn.

They analyze your stool and based on an analysis of the bacteria and
fungus(?) recommend a therapie consisting of:

1) Various "symbioflor" capsules with bacteria.
2) Autovaccine

The Autovaccine is based on your own stool and is supposed to work on
the Mucosa-immunesystem(?).

Now have any of you heard anything good or bad about these guys? Or
about that type of therapy? It seems very serious, but I can't figure
out if it really is.

- Kurt

______________________________________________________
Get Your Private, Free Email at http://www.hotmail.com

------------------------------

Date: Tue, 23 Sep 1997 15:33:32 -0400 (EDT)
From: SHADOWPUP@aol.com
To: intest_health@listserv.azstarnet.com, SCD-list@longisland.com
Subject: yogurt starter
Message-ID: <970923153102_1786371846@emout07.mail.aol.com>

Natren, who is a very reputable probiotic company, has a yogurt starter that
i noticed contained whey and milk solids. is this something i should STAY
away from in reference to elaine's diet?

thanx -
Joan

------------------------------

Date: Tue, 23 Sep 1997 13:52:43 -0700
From: "Rosset" <plrosset@pacificrim.net>
To: "SCD-list" <SCD-list@longisland.com>
Subject: Extra pointers for quiche recipe
Message-ID: <199709232057.NAA12206@cascade.pacificrim.net>

Just a couple extra pointers on the quiche recipe (below) that I sent in a
couple of weeks ago. I like it best made with whole milk yogurt, the
tartness adds to the flavor. If you are using the 1/2 and 1/2 yogurt (less
tart) I would recommend substituting the cheddar cheese for swiss cheese.
Also, if the bunch of spinach is small, use two. You want enough spinach in
there so that you can taste it.

----------
> From: Rosset <plrosset@pacificrim.net>
> To: SCD-list <SCD-list@longisland.com>
> Subject: Spinach crusted mushroom quiche recipe
> Date: Friday, August 29, 1997 2:06 PM
>
> SPINACH CRUSTED MUSHROOM QUICHE
>
> CRUST
> 1 bunch spinach
> 3 tbsp butter
> 1/4 tsp salt
> 3/4 cup almond flour
>
> Wash spinach, hold it in clumps, and cut in about 1 inch slices
> Melt butter in pan over med. heat, add spinach and salt and cook until
> spinach is limp (won't take long)
> Remove pan from heat and stir in the almond flour.
> Butter pie pan and spread the above mixture into pan just going about
half
> way up the sides.
> Cook at 375F for 15 min. Remove from oven.
>
> While crust is cooking make filling:
>
> 1/2 medium size onion, chopped
> 3/4 lb mushrooms, washed and sliced
> 6 oz grated mild or med. cheddar cheese (about 2 cups)
> 1 cup homemade yogurt
> 4 well beaten eggs
> 2 tbsp butter
> 1/4 tsp salt
> 1/4 tsp dry oregano (1 tsp if fresh)
> 2 tbsp fresh chopped parsley
>
> Saute onion and mushrooms in butter with the oregano, parsley and salt
for
> about 5 min., until onoins are transluscent and mushrooms tender. Place
in
> pie pan on top of crust~ place cheese evenly on top. Beat eggs and stir
in
> the yogurt, and pour over. Dust with paprika (optional). Bake at 350F for
> about 35 min., or
> until set. This is one of those dishes that taste even better a day or
two
> later, gently reheated.
>
> This really isn't very difficult to make. Hope you like it.
> Lucy

------------------------------

End of SCD-list V1 #48
**********************



SCD-list Wed, 24 Sep 1997 Volume 1 : Number 49

In this issue:

Re: Re: general question?
DCCC
Re: Re: general question?
Re: DCCC
Re: DCCC
houghson nut co.
[Fwd: (no subject)]
[Fwd: [Fwd: (no subject)]]
Re: [Fwd: [Fwd: (no subject)]]

--------------------------------------------------------------------
SCD MAILING LIST
-------------------------------------------------------------------

----------------------------------------------------------------------

Date: Tue, 23 Sep 1997 23:00:39 -0400 (EDT)
From: MSWday@aol.com
To: SCD-list@longisland.com
Subject: Re: Re: general question?
Message-ID: <970923215919_1416894431@emout03.mail.aol.com>

I really appreciate everyone words of encouragement. Today someone at work
had a birthday party and I wanted to bury my face in the cake. I wanted to
eat the whole thing. I'm going to try and stay on the diet for at least the
month recommended. Then I might try some experimenting. Who knows??

thanks again
Mike

------------------------------

Date: Wed, 24 Sep 1997 00:29:58 -0400 (EDT)
From: SHADOWPUP@aol.com
To: SCD-list@longisland.com
Subject: DCCC
Message-ID: <970924002711_1897248006@emout07.mail.aol.com>

Hi -

Stewarts in Vermont is cheaper than Country Cheese Co. their prices are:

24 oz = 1.73
5 lb = 5.28

the 5 lb. works out to be $1.06 per pound. shipping might kill us tho

Joan

------------------------------

Date: Wed, 24 Sep 1997 06:59:59 -0500
From: Rachel Turet <rachel@longisland.com>
To: SCD-list@longisland.com
Subject: Re: Re: general question?
Message-ID: <l03010d00b04eb0ef61e1@[199.171.4.141]>

Dear Mike,
Hopefully after a month on the diet, you won't crave the sugar as badly and
you'll find enough improvment to warrent staying on the diet.
Good luck,
Rachel

------------------------------

Date: Wed, 24 Sep 1997 07:01:52 -0500
From: Rachel Turet <rachel@longisland.com>
To: SCD-list@longisland.com
Subject: Re: DCCC
Message-ID: <l03010d01b04eb1597ac0@[199.171.4.126]>

Dear Paul & Melissa,
It must be nice to finally see the light at the end of the tunnel. Maybe
someday you'll even be able to just have a 9-5 job and have some time to
enjoy life. I can't wait to see you.
Love, Rachel

------------------------------

Date: Wed, 24 Sep 1997 07:03:21 -0500
From: Rachel Turet <rachel@longisland.com>
To: SCD-list@longisland.com
Subject: Re: DCCC
Message-ID: <l03010d02b04eb1da9909@[199.171.4.126]>

Sorry all, I just sent you a message meant for my brother. It's early & the
minds not working too well.
Rachel

------------------------------

Date: Wed, 24 Sep 97 14:43:24 MDT
From: "Daniel Woods" <dwoods@acs.ucalgary.ca>
To: SCD-list@longisland.com (SCD-diet mail list)
Subject: houghson nut co.
Message-ID: <9709242043.AA113128@acs5.acs.ucalgary.ca>

Hi group,

I thought you might find this interesting... I looked up in my yellow
pages under "Nuts - edible" and found a wholesaler of nuts. I called
and confirmed that I could purchase a 25 lb box of ground blanched almonds
for about $125 CDN. Hughson's price was around $90 US + shipping + duty
+ exchange rate (nearly 40%).

I picked up my first order yesterday. On the box it said, go ahead guess,
Hughson Nut Company fom California. So I am getting Hughson's product
from a local distributor :) Being in Canada, and in my city, this is more
convenient and basically the same price.

To anyone looking for a source of nuts (mainly for people outside the USA)...
check your phone book. The larger cities will more than likely have a
supplier you can call. Same goes for DCCC.

Thanks... Dan.

***************************************************************
* Dan Woods The University of Calgary *
* dwoods@acs.ucalgary.ca Calgary, AB, CANADA, T2N 1N4 *
***************************************************************

------------------------------

Date: Wed, 24 Sep 1997 15:04:31 -0700
From: "Gene M. Justman" <genemash@plinet.com>
To: SCD-list@longisland.com
Subject: [Fwd: (no subject)]
Message-ID: <34298E6F.4F46@plinet.com>

Message-ID: <3428581A.7D42@plinet.com>
Date: Tue, 23 Sep 1997 17:00:26 -0700
From: "Gene M. Justman" <genemash@plinet.com>
X-Mailer: Mozilla 3.01Gold (Win16; I)
MIME-Version: 1.0
To: Scd-list@longisland.com
Subject: (no subject)
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

9-23-97
From:genemash@plinet.com
To: SCD-request@longisland.com


I've been having problems interacting with this
site, so this is a test!
site so this is a test

------------------------------

Date: Wed, 24 Sep 1997 15:39:13 -0700
From: "Gene M. Justman" <genemash@plinet.com>
To: SCD-list@longisland.com
Subject: [Fwd: [Fwd: (no subject)]]
Message-ID: <34299691.6A7C@plinet.com>

Message-ID: <342994DA.824@plinet.com>
Date: Wed, 24 Sep 1997 15:31:54 -0700
From: "Gene M. Justman" <genemash@plinet.com>
X-Mailer: Mozilla 3.01Gold (Win16; I)
MIME-Version: 1.0
To: genemash@plinet.com
Subject: [Fwd: (no subject)]
Content-Type: message/rfc822
Content-Transfer-Encoding: 7bit
Content-Disposition: inline

Message-ID: <34299322.4431@plinet.com>
Date: Wed, 24 Sep 1997 15:24:34 -0700
From: "Gene M. Justman" <genemash@plinet.com>
X-Mailer: Mozilla 3.01Gold (Win16; I)
MIME-Version: 1.0
To: SCD-list@longisland.com
Subject: (no subject)
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Date: 09/24/97
From: genemash@plinet.com
To:SCD-request@longisland.com
Subject: Beer/Betasone

I hope this message gets there!

Having been a craft home brewer of fine beers for about
years that's what I miss the most after being on this
diet for about 6 weeks. The book is pretty vague on this
matter as well telling us to avoid beer. Does this mean to
not drink it at all or that its ok to have one occasionally?

Also my DR. told me about a drug called Betasone which supposedly
is as effective as prednisone but does not have the same long
term side effects. Has anyone else heard of this drug? I guess
it's awaiting approval from the FDA here in the U.S. but is being
used in the European market.

------------------------------

Date: Wed, 24 Sep 1997 19:37:45 -0500
From: Rachel Turet <rachel@longisland.com>
To: SCD-list@longisland.com
Subject: Re: [Fwd: [Fwd: (no subject)]]
Message-ID: <l03010d01b04f6287526b@[199.171.4.135]>

Elaine suggests keeping away from beer I guess because of hops, barley
(yeast?) ect. An occasional white wine is fine. I'm sorry, I'm not familiar
with the drug you mention.

Rachel

------------------------------

End of SCD-list V1 #49
**********************


SCD-list Thu, 25 Sep 1997 Volume 1 : Number 50

In this issue:

No posts?
No posts on SCD-list
don't try... do it
Institut fur Mikrookologie any good?
No posts
No postings in 2 days
Hello all
Where is everyone?

--------------------------------------------------------------------
SCD MAILING LIST
-------------------------------------------------------------------

----------------------------------------------------------------------

Date: Thu, 25 Sep 1997 08:53:04 -0500 (CDT)
From: Elizabeth Liener <exuliz@exu.ericsson.se>
To: SCD@MAELSTROM.STJOHNS.EDU, SCD-list@longisland.com
Subject: No posts?
Message-ID: <199709251353.IAA07180@b01d04.exu.ericsson.se>

Hi, I haven't seen any posts to this newsgroup in
a few days. Is something strange going on?

/Liz

------------------------------

Date: Thu, 25 Sep 1997 07:34:42 -0700
From: "Rosset" <plrosset@pacificrim.net>
To: "SCD-list" <SCD-list@longisland.com>
Subject: No posts on SCD-list
Message-ID: <199709251438.HAA28135@cascade.pacificrim.net>

Am I the only one not getting through? I haven't received my posts or
anyone else's for almost 48 hours.
Thanks, Lucy

------------------------------

Date: Thu, 25 Sep 97 8:46:28 MDT
From: "Daniel Woods" <dwoods@acs.ucalgary.ca>
To: SCD-list@longisland.com
Subject: don't try... do it
Message-ID: <9709251446.AA75972@acs5.acs.ucalgary.ca>

Hi Mike and others,

> ..... I'm going to *try* and stay on the diet for at least the
> month recommended. Then I might *try* some experimenting. Who knows??

Once think I have learned about getting things done, is to never use
the negative words 'try', 'can't', should, etc. These create a negative
outlook on your expectations. Mike, instead of 'trying' the diet,
'do' the diet. Trying implies a half-hearted attempt at somthing. We
are all guilty of this, including myself, however we *can* do it.

Have you ever noticed that I also never use the word 'but', instead I
use 'however'. Using 'but' in a sentence negates the first part of a
sentence. I know these are just semantics, nonetheless it does make
a difference in the way you look at things, and the message you send.

If you do the diet for at least three months (strict), you will most
likely see good results as I have (and I was pretty bad).

Just my humble opinion of course.

Thanks... Dan.

***************************************************************
* Dan Woods The University of Calgary *
* dwoods@acs.ucalgary.ca Calgary, AB, CANADA, T2N 1N4 *
***************************************************************

------------------------------

Date: Thu, 25 Sep 1997 07:57:27 PDT
From: "Kurt Jensen" <kurt_j@hotmail.com>
To: SCD-list@longisland.com
Subject: Institut fur Mikrookologie any good?
Message-ID: <19970925145728.4451.qmail@hotmail.com>

Hi,

In my search for alternative therapies that might complement the SCD, I
ran into a German "Institut f¸r Mikro–kologie" in Herborn.

They analyze your stool and based on an analysis of the bacteria and
fungus(?) recommend a therapie consisting of:

1) Various "symbioflor" capsules with bacteria.
2) Autovaccine

The Autovaccine is based on your own stool and is supposed to work on
the Mucosa-immunesystem(?).

Now have any of you heard anything good or bad about these guys? Or
about that type of therapy? It seems very serious, but I can't figure
out if it really is.

- Kurt

______________________________________________________
Get Your Private, Free Email at http://www.hotmail.com

------------------------------

Date: Thu, 25 Sep 1997 09:42:25 -0700
From: "Rosset" <plrosset@pacificrim.net>
To: "SCD-list" <SCD-list@longisland.com>
Subject: No posts
Message-ID: <199709251646.JAA02601@cascade.pacificrim.net>

Could I get someone to let me know (directly) if I'm the only one cut off.
My posts are not getting through on my end.
Thanks a lot.
Lucy Rosset
plrosset@pacificrim.net

------------------------------

Date: Thu, 25 Sep 1997 10:13:10 -0700
From: prateeksha@infoasis.com (Prateeksha Bogardus)
To: SCD-List@longisland.com
Subject: No postings in 2 days
Message-ID: <v01550102b04fe9957deb@[206.40.74.37]>

Hi there, I am not receiving postings. Anyone else have this problem?

Prateeksha

------------------------------

Date: Thu, 25 Sep 1997 17:47:21 -0500
From: Rachel Turet <rachel@longisland.com>
To: SCD-list@longisland.com
Subject: Hello all
Message-ID: <l03010d02b05099cab1f5@[199.171.4.126]>

Dear All,(lurkers this means you too),
Mails been real quiet the lat 2 days and I've had some inquiries as to
whether or not the list is still intact. PLEASE be so kind as to send out a
word or two just as reassurance that we are still on the air. According to
the list server we should be, but this is just a verification. Thanks.
Rachel

------------------------------

Date: Thu, 25 Sep 1997 18:45:02 -0400 (EDT)
From: BCohen7014@aol.com
To: SCD-List@longisland.com
Subject: Where is everyone?
Message-ID: <970925184216_1619439257@emout04.mail.aol.com>

Haven't received any posts the past couple of days. Is everything ok?
JoEllen

------------------------------

End of SCD-list V1 #50
**********************




SCD-list Fri, 26 Sep 1997 Volume 1 : Number 51

In this issue:

Re: No posts
Posting's
postings
Re: Nut Flour.....
RE: posts
Black coffee
Test Message -- IMPORTANT

--------------------------------------------------------------------
SCD MAILING LIST
-------------------------------------------------------------------

----------------------------------------------------------------------

Date: Thu, 25 Sep 1997 20:05:20 -0500
From: Rachel Turet <rachel@longisland.com>
To: SCD-list@longisland.com
Subject: Re: No posts
Message-ID: <l03010d04b050ba755ec2@[199.171.4.126]>

Dear Lucy, Did you get this post from me? If not, there is definately
something going on & at least I can tell Linda that I sent this out & noone
got it.
Thanks,
Rachel

Dear All,(lurkers this means you too),
Mails been real quiet the lat 2 days and I've had some inquiries as to
whether or not the list is still intact. PLEASE be so kind as to send out a
word or two just as reassurance that we are still on the air. According to
the list server we should be, but this is just a verification. Thanks.
Rachel

------------------------------

Date: Thu, 25 Sep 1997 19:45:10 -0500
From: rgstock1@juno.com (Robert G Stockbridge)
To: SCD-list@longisland.com
Subject: Posting's
Message-ID: <19970925.194514.2974.0.rgstock1@juno.com>

It looks like everyone has all the answers they need for now. If there
are no questions or information to give out nobody receives any mail.
It looks like most of the members that want to cheat have quit cheating
or quit period.
It probably would be nice if a few of the newer participants would write
about their pluses or minuses.

Bob Stockbridge

The Beautiful Mississippi Gulf Coast

------------------------------

Date: Thu, 25 Sep 1997 20:42:18 -0600
From: aagvani@muse.sfusd.k12.ca.us (Steve Hooker)
To: SCD-list@longisland.com
Subject: postings
Message-ID: <199709260235.TAA16864@muse.sfusd.k12.ca.us>

>Dear All,(lurkers this means you too),
>Mails been real quiet the lat 2 days and I've had some inquiries as to
>whether or not the list is still intact. PLEASE be so kind as to send out a
>word or two just as reassurance that we are still on the air. According to
>the list server we should be, but this is just a verification. Thanks.
>Rachel

Everything seems to be working from my end. I get the digest each day. I
don't know if I would be receiving individual posts or not of course.
Steve

------------------------------

Date: Thu, 25 Sep 1997 23:40:07 -0600
From: "R. Allan Partridge" <raparch@planet.eon.net>
To: SCD-list@longisland.com
Subject: Re: Nut Flour.....
Message-ID: <342B4AB7.4CC4@planet.eon.net>

This is one of those "repeat it again" requests.

We would like the address/phone/fax for Hughson's Nut Flour, we have a
local supplier for nut flour (Edmonton, Alberta) but we are certain the
the Hughson's seems finer. If someone could send it to us that would be
greatly appreciated.

Thanks
Partridge's

------------------------------

Date: Fri, 26 Sep 97 8:44:10 MDT
From: "Daniel Woods" <dwoods@acs.ucalgary.ca>
To: rachel@longisland.com, BCohen7014@aol.com, exuliz@exu.ericsson.se,
prateeksha@infoasis.com
Cc: SCD-list@longisland.com (SCD-diet mail list)
Subject: RE: posts
Message-ID: <9709261444.AA18728@acs5.acs.ucalgary.ca>

HI Rachel, JoEllen, Liz, Prateeksha,

I have no problem receiving the posts. Of course I only receive it around
5pm mountain time since I am in digest mode.

Thanks... Dan.

***************************************************************
* Dan Woods The University of Calgary *
* dwoods@acs.ucalgary.ca Calgary, AB, CANADA, T2N 1N4 *
***************************************************************

------------------------------

Date: Fri, 26 Sep 1997 11:55:11 +0000
From: "Ron Leach" <ron@baldhead.com>
To: SCD-list@longisland.com
Subject: Black coffee
Message-ID: <199709261607.MAA01581@baldhead.com>

Good morning everybody:
I started the SCD recently and I was wondering if it's OK to drink
black coffee, no cream no sugar?
Does anybody know?
Thanks.

Ron Leach

------------------------------

Date: Fri, 26 Sep 1997 18:30:04 -0400
From: Linda Kahrs <linda@invision.net>
To: SCD-list@longisland.com
Subject: Test Message -- IMPORTANT
Message-ID: <342C376C.6AAA@invision.net>

Hello Everyone..

I'm usually not a list member, but I have subscribed myself for one
reason. I have been informed that people on this list are not recieving
messages and I am trying to diagonse the problem.

I would appreciate it if everyone that recieves this message, send me a
PRIVATE email, to linda@invision.net telling me that they indeed did
recieve this and other messages from the list.

I hope with the information I recieve from all of you I will be able to
better diagonse the problem and make your activities on the list easier
and more informative.

Once again, if you recieve this message, just send a note to

linda@invision.net

saying that you recieved this message.


Thanks for your cooperation!

Linda
linda@invision.net

------------------------------

End of SCD-list V1 #51
**********************



SCD-list Sat, 27 Sep 1997 Volume 1 : Number 52

In this issue:

Re: Test Message -- IMPORTANT
Re: general question?
Re: Test Message -- IMPORTANT
Re: Test Message -- IMPORTANT
Re: Test Message -- IMPORTANT
Re: Test Message -- IMPORTANT
Re: Test Message -- IMPORTANT
Re: Test Message -- IMPORTANT
Sv: Test Message -- IMPORTANT
Re: Test Message -- IMPORTANT
nut flour
Latest update
Re: Latest update
Health Update
Re: Latest update

--------------------------------------------------------------------
SCD MAILING LIST
-------------------------------------------------------------------

----------------------------------------------------------------------

Date: Fri, 26 Sep 1997 19:23:00 -0400 (EDT)
From: El1256@aol.com
To: SCD-list@longisland.com
Subject: Re: Test Message -- IMPORTANT
Message-ID: <970926191750_1530045884@emout09.mail.aol.com>

I did receive this, but not m,uch else today , 2 messages.

------------------------------

Date: Fri, 26 Sep 1997 19:35:57 -0400 (EDT)
From: JESAMEANA@aol.com
To: SCD-list@longisland.com
Subject: Re: general question?
Message-ID: <970926193435_-899390791@emout19.mail.aol.com>

STAY ON THE DIET?
I have been on for 7 months and feel great. I have no more pains and my
doctor has taken me off asacol. The diet does work, but healing does not
happen overnight. Be patients and you will be please with the results...I
know my doc is amazed!

-jesameana
p.s.-need some support? E-mail me i am hear.

------------------------------

Date: Fri, 26 Sep 1997 16:58:08 -0700
From: prateeksha@infoasis.com (Prateeksha Bogardus)
To: SCD-list@longisland.com
Subject: Re: Test Message -- IMPORTANT
Message-ID: <v01550100b05199ab0e93@[206.40.74.61]>

>--------------------------------------------------------------------
>SCD MAILING LIST
>-------------------------------------------------------------------
>Hello Linda,

I received your message, but up to then, had not received any messages for
about 48 hours from the SCD list. Hope you can figure out what's going on
and correct the problem soon! Prateeksha.
>
> I'm usually not a list member, but I have subscribed myself for one
>reason. I have been informed that people on this list are not recieving
>messages and I am trying to diagonse the problem.
>
> I would appreciate it if everyone that recieves this message, send me a
>PRIVATE email, to linda@invision.net telling me that they indeed did
>recieve this and other messages from the list.
>
> I hope with the information I recieve from all of you I will be able to
>better diagonse the problem and make your activities on the list easier
>and more informative.
>
> Once again, if you recieve this message, just send a note to
>
> linda@invision.net
>
> saying that you recieved this message.
>
>
> Thanks for your cooperation!
>
> Linda
> linda@invision.net

------------------------------

Date: Fri, 26 Sep 1997 17:00:52 -0700
From: prateeksha@infoasis.com (Prateeksha Bogardus)
To: SCD-list@longisland.com
Subject: Re: Test Message -- IMPORTANT
Message-ID: <v01550101b0519ae55877@[206.40.74.61]>

I received the message below from someone. Did it go through the
SCD-list@longisland.com? If so, then we're back on! Hurray!

Prateeksha




>--------------------------------------------------------------------
>SCD MAILING LIST
>-------------------------------------------------------------------
>I did receive this, but not m,uch else today , 2 messages.

------------------------------

Date: Fri, 26 Sep 1997 18:42:50 -0600 (CST)
From: Allan Tease <tease@cs.uregina.ca>
To: SCD-list@longisland.com
Subject: Re: Test Message -- IMPORTANT
Message-ID: <199709270042.SAA21156@MERCURY.CS.UREGINA.CA>

> >Hello Linda, MESSAGE RECEIVED....
>
> I received your message, but up to then, had not received any messages for
> about 48 hours from the SCD list. Hope you can figure out what's going on
> and correct the problem soon! Prateeksha.
> >
> > I'm usually not a list member, but I have subscribed myself for one
> >reason. I have been informed that people on this list are not recieving
> >messages and I am trying to diagonse the problem.
> >
> > I would appreciate it if everyone that recieves this message, send me a
> >PRIVATE email, to linda@invision.net telling me that they indeed did
> >recieve this and other messages from the list.
> >
> > I hope with the information I recieve from all of you I will be able to
> >better diagonse the problem and make your activities on the list easier
> >and more informative.
> >
> > Once again, if you recieve this message, just send a note to
> >
> > linda@invision.net
> >
> > saying that you recieved this message.
> >
> >
> > Thanks for your cooperation!
> >
> > Linda
> > linda@invision.net
>
>

------------------------------

Date: Fri, 26 Sep 1997 20:15:11 -0500
From: Gerry & Rene Jantzi <gjantzi3@airmail.net>
To: SCD-list@longisland.com
Subject: Re: Test Message -- IMPORTANT
Message-ID: <3.0.3.32.19970926201511.0068db6c@mail.airmail.net>

... got it

At 06:30 PM 9/26/97 -0400, you wrote:
>--------------------------------------------------------------------
>SCD MAILING LIST
>-------------------------------------------------------------------
>Hello Everyone..
>
> I'm usually not a list member, but I have subscribed myself for one
>reason. I have been informed that people on this list are not recieving
>messages and I am trying to diagonse the problem.
>
> I would appreciate it if everyone that recieves this message, send me a
>PRIVATE email, to linda@invision.net telling me that they indeed did
>recieve this and other messages from the list.
>
> I hope with the information I recieve from all of you I will be able to
>better diagonse the problem and make your activities on the list easier
>and more informative.
>
> Once again, if you recieve this message, just send a note to
>
> linda@invision.net
>
> saying that you recieved this message.
>
>
> Thanks for your cooperation!
>
> Linda
> linda@invision.net
>
>

------------------------------

Date: Fri, 26 Sep 1997 21:19:10 -0400
From: "witkowski" <witkowskis@worldnet.att.net>
To: <SCD-list@longisland.com>
Subject: Re: Test Message -- IMPORTANT
Message-ID: <19970927013720.AAA28949@a-zcusto>

Message Recieved

----------
> From: Linda Kahrs <linda@invision.net>
> To: SCD-list@longisland.com
> Subject: Test Message -- IMPORTANT
> Date: Friday, September 26, 1997 6:30 PM
>
> --------------------------------------------------------------------
linda@invision.net

------------------------------

Date: Fri, 26 Sep 1997 22:40:28 -0400 (EDT)
From: Im4Jeffrey@aol.com
To: SCD-list@longisland.com
Subject: Re: Test Message -- IMPORTANT
Message-ID: <970926223852_-262253607@emout19.mail.aol.com>

i recieved the message

------------------------------

Date: Sat, 27 Sep 1997 08:50:31 +0200
From: "Svend-Aage Andersen" <sv-aage@post3.tele.dk>
To: <SCD-list@longisland.com>
Subject: Sv: Test Message -- IMPORTANT
Message-ID: <19970927064900.AAB43246@warfactory>

----------
> Fra: Linda Kahrs <linda@invision.net>
> Til: SCD-list@longisland.com
> Emne: Test Message -- IMPORTANT
> Dato: 27. september 1997 00:30
>
> --------------------------------------------------------------------
> SCD MAILING LIST
> -------------------------------------------------------------------
I recieved the message.
Yvonne.

------------------------------

Date: Sat, 27 Sep 97 06:32:24 PDT
From: "BILL" <btren@bestweb.net>
To: "SCD LIST" <SCD-list@longisland.com>
Subject: Re: Test Message -- IMPORTANT
Message-ID: <MAPI.Id.0016.007472656e2020203030303530303035@MAPI.to.RFC822>

I got your message,thanks, I guess

----------
> --------------------------------------------------------------------
> SCD MAILING LIST
> -------------------------------------------------------------------
> Hello Everyone..
>
> I'm usually not a list member, but I have subscribed myself for one
> reason. I have been informed that people on this list are not recieving
> messages and I am trying to diagonse the problem.
>
> I would appreciate it if everyone that recieves this message, send me a
> PRIVATE email, to linda@invision.net telling me that they indeed did
> recieve this and other messages from the list.
>
> I hope with the information I recieve from all of you I will be able to
> better diagonse the problem and make your activities on the list easier
> and more informative.
>
> Once again, if you recieve this message, just send a note to
>
> linda@invision.net
>
> saying that you recieved this message.
>
>
> Thanks for your cooperation!
>
> Linda
> linda@invision.net
>

------------------------------

Date: Sat, 27 Sep 1997 05:14:00 PDT
From: "T G" <tguar@hotmail.com>
To: SCD-list@longisland.com
Subject: nut flour
Message-ID: <19970927121400.1309.qmail@hotmail.com>

Dan,
Did you actually ever order nut flour from Hughson, and if you did what
is the difference in price from the place you order from now? Do you
think that the nut wholesaler you have found in Alberta would ship to
Ontario?

Thanks,
Tina




______________________________________________________
Get Your Private, Free Email at http://www.hotmail.com

------------------------------

Date: Sat, 27 Sep 1997 11:40:34 -0500
From: Cheryl Crabill <ccrabill@worldnet.att.net>
To: SCD-list@longisland.com
Subject: Latest update
Message-ID: <342D3702.7659@worldnet.att.net>

Hi everyone,

I don't know if you remember my story or not. I have been on the diet
for 16 months now. Things were great until the end of June. I had even
taken myself off the Pentasa in April. Since the end of June I've had 4
flares which I'm currently still in the fouth. After every flare I
figured it would be the last not going back on the Pentasa full time. I
was so confident! This last flare has been pretty bad though. I went
back to the good doctor :-) this week and he has upped my Pentasa from
16 to 20 pills a day. I expected him to point his finger and tell me I
told you so about going off the Pentasa. It wasn't that bad though. He
did say that I lasted a little longer than most people do while not
taking the Pentasa. So that was encouraging. He is concerned about my
weight since it doesn't leave me much margin when things are bad. My
blood tests showed inflammation but other that that they were great with
the exception of being just a little low on Potassium. My cholesterol
was great!

I'm now into the second week of diarrhea and hoping it doesn't last much
longer. I'm sick of chicken soup but don't want to eat anything that
will prolong the diarrhea. I need to try to gain some weight too. So
cooked vegetables? I've noticed before when I've had flares that the
nut muffins add more bulk to the stool once I'm on my way back to
health. Are nut muffins ok to eat while I'm still having diarrhea and
cramping? I'm hungry, yet at the same time I'm kind of nauseas. Kind
of weird.

I'm trying to avoid being put back on the Prednisone. I'm supposed to
call back the doctor next week and let him know how I'm doing. If it's
not any worse I think he will let me remain on the higher dose of
Pentasa for a little longer to see if it will work.

The doctor said it was worth experimenting coming off the Pentasa, but
it didn't work, so now stay on it forever. I probably will for quite a
while, > 1 year, but who knows...I beleive the body can heal given the
chance and I think I had a pretty good start at it. For some reason
I've taken a few steps backwards, but I still think that given a little
more time and a chance to heal I can some day get back to getting off
the medicine. Maybe, I was just a little premature.

Hoping everyone else is feeling good,

Cheryl

------------------------------

Date: Sat, 27 Sep 1997 14:40:06 -0500
From: Rachel Turet <rachel@longisland.com>
To: SCD-list@longisland.com
Subject: Re: Latest update
Message-ID: <l03010d01b05310bcb704@[199.171.4.132]>

Dear Cheryl,
Sorry about the setback. Hope you're feeling GREAT soon. As for the nut
muffins, I'd avoid putting whole or chopped nuts in them for now. Couldn't
hurt to add a banana or two to the batter. See how you do on them just
being made with the nut flour and don't eat more than one to start. If all
seems well 24 hours later, try another. Keep us posted.
Rachel

------------------------------

Date: Sat, 27 Sep 1997 12:23:32 -0700
From: Dempsey <stellar1@pacbell.net>
To: SCD <SCD-list@longisland.com>
Subject: Health Update
Message-ID: <342D5D34.7134@pacbell.net>

Hi everyone,

I just wanted to write in to say that at the end of being on the diet
for 8 months, I am now symptom free. I also have been able to begin
eating dairy again, which I wasn't able to for quite awhile. I have
followed the diet fanatically. In August I had an upserge in health
after doing a 20 day course of an anti-protozoal drug (Yodoxin) after a
test showed that I was infected with an amoeba (and probably had been
for the last seven years). Since doing the drug, the last remaining
symptoms I had that I was unable to shake, loose stool and lowered
vitality, went away. I can't believe how healthy I feel now. As a side
point, my fibromyalgia symptoms are virtually gone now too.

So, I remain on the diet, faithfully, and will continue to stay on it
for another year. I just wanted to write in and tell everyone, because
I used to be really sick and weak and I never thought I would ever get
my health back. So, everyone, hang in there.

Denise

------------------------------

Date: Sat, 27 Sep 1997 15:58:02 -0700
From: "Rosset" <plrosset@pacificrim.net>
To: "SCD-list" <SCD-list@longisland.com>
Subject: Re: Latest update
Message-ID: <199709272302.QAA11391@cascade.pacificrim.net>

Dear Cheryl,
Did you taper off the Pentasa slowly? The reason I'm asking is because I
had a severe flare-up after abruptly stopping Rowasa enemas (Rowasa and
Pentasa are both 5-ASA drugs). About 12 years ago I participated in a
double
blind patient study for Rowasa retension enemas. As it turned out I got
the real thing, and in no time I was doing great. I used them nightly for a
few months and when the study was over I was told that's it, no more
enemas, and that it would be a couple years before they finished with the
approval process. I was a bit concerned about the severity of the
post-Rowasa flare-up, so I called the doctor to find out if there was any
way I could get
more enemas. He admitted that it wasn't a good idea to abruptly stop using
them, and he let me have a few boxes left over from a patient who had
dropped out of the study, and then I was able to successfully taper off.
Unfortunately a
few years later when
they finally went on the market they didn't work for me anymore.
Just to give you some encouragement that it is possible to get off the
drugs, I've been off all drugs for almost 4 years. Before I started the
diet I was on Prednisone, 12 Asacols, Rowasa enema every
night, and a cortenema in the afternoon to try to control my non-existent
bowel control. After a couple of months on the diet when I decided to stop
the drugs, I tapered off everything very slowly (not just the prednisone).
Remember, a few bumps in the road are to be expected, so don't get too
discouraged.
Keep us posted on your progress.
Lucy
PS. Have you tried the 1/2 and 1/2 yogurt? It might be good for the extra
calories, since you are concerned about your weight.



> From: Cheryl Crabill <ccrabill@worldnet.att.net>
> To: SCD-list@longisland.com
> Subject: Latest update
> Date: Saturday, September 27, 1997 9:40 AM
>
> --------------------------------------------------------------------
> SCD MAILING LIST
> -------------------------------------------------------------------
> Hi everyone,
>
> I don't know if you remember my story or not. I have been on the diet
> for 16 months now. Things were great until the end of June. I had even
> taken myself off the Pentasa in April. Since the end of June I've had 4
> flares which I'm currently still in the fouth. After every flare I
> figured it would be the last not going back on the Pentasa full time. I
> was so confident! This last flare has been pretty bad though. I went
> back to the good doctor :-) this week and he has upped my Pentasa from
> 16 to 20 pills a day. I expected him to point his finger and tell me I
> told you so about going off the Pentasa. It wasn't that bad though. He
> did say that I lasted a little longer than most people do while not
> taking the Pentasa. So that was encouraging. He is concerned about my
> weight since it doesn't leave me much margin when things are bad. My
> blood tests showed inflammation but other that that they were great with
> the exception of being just a little low on Potassium. My cholesterol
> was great!
>
> I'm now into the second week of diarrhea and hoping it doesn't last much
> longer. I'm sick of chicken soup but don't want to eat anything that
> will prolong the diarrhea. I need to try to gain some weight too. So
> cooked vegetables? I've noticed before when I've had flares that the
> nut muffins add more bulk to the stool once I'm on my way back to
> health. Are nut muffins ok to eat while I'm still having diarrhea and
> cramping? I'm hungry, yet at the same time I'm kind of nauseas. Kind
> of weird.
>
> I'm trying to avoid being put back on the Prednisone. I'm supposed to
> call back the doctor next week and let him know how I'm doing. If it's
> not any worse I think he will let me remain on the higher dose of
> Pentasa for a little longer to see if it will work.
>
> The doctor said it was worth experimenting coming off the Pentasa, but
> it didn't work, so now stay on it forever. I probably will for quite a
> while, > 1 year, but who knows...I beleive the body can heal given the
> chance and I think I had a pretty good start at it. For some reason
> I've taken a few steps backwards, but I still think that given a little
> more time and a chance to heal I can some day get back to getting off
> the medicine. Maybe, I was just a little premature.
>
> Hoping everyone else is feeling good,
>
> Cheryl

------------------------------

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