Letters from the Specific Carbohydrate Diet support group 1997 (13)

Re: SCD: Scope Time!
Mon, 24 Feb 1997 23:25:56 GMT

> Saw my doctor last week for the first time since going on the diet six
> months ago. It has been several years since my last colonoscopy, so I
> have set one up for this Wednesday. My question is, what have you all
> been eating the evening/afternoon before, those of you who have had
> the scope while on the diet? The directions for Golightly say just
> clear liquids like broth, jello, etc for the evening meal, none of
> which seems allowable. What about eating something substantial at
> mid-afternoon and then counting on the Golightly to fill me up in the
> evening?
> I also had some blood work done last week so will be able to report on
> my cholesterol in a few days. I have the general impression that most
> people on the diet do not get elevated cholesterol levels, contrary to
> what you might expect. I know there was one exception here recently.
> Incidentally, my doctor had no reaction when he learned I was on the
> diet and doing well. They get great poker faces, don't they?!?
> Bart Hansen
> hansenb@frb.gov
Dear Bart,
Yeah, Doctors just simply refuse to believe that anything can heal what
they can't. I drank mostly tea on the day before my colonoscopy. I'd be
concerned about "something substantial". It might not digest all the way
through before the procedure and I'd hate for them to tell you they got
inconclusive results and had to do the whole thing over again. You might
try making soup and drain off and drink just the liquid. Good luck! Keep us

Re: SCD: Scope Time!

You can have clear homemade chicken broth, homemade jello made with plain gelatin and grape or apple juice, the clear (non-pulpy) juices themselves such as grape or apple. These are all allowable by both the SCD and the Colonoscopy prep procedures. That's about it.

From Elaine
Mon, 3 Mar 1997 23:26:26 GMT

Dear all, The following is letter sent by Theo Colborn PH.D. to Dr Peter
Green of Columbia Presbyterian Med Center in NYC. Elaine faxed it to me
yesterday & asked that I share it with you. I thought I could scan it but
it seems I have to type it out (whew, long letter for a non-typist).
Wouldn't it be nice if it actually had some influence?

Dear Dr. Green,
All four of my children were born with Celiac disease. At age 2 & 1/2 the
oldest was extremely ill even though he'd been placed on a gluten free diet
by a pediatrician who had diagnosed his problem as celiac disease. By late
1952 his health had deteriorated seriously when we discovered Drs. Sidney &
Merrill Haas who immediately put him (and his newborn sister) on a
disacchride-free & complex sugar free diet. After 5 days on the diet for
the first time in his life he passed a solid stool and slept through the
Our last 2 children also presented the same symptoms shorty after birth.
How ell I remember the hours spent boiling milk with CASEC powder and the
many times it foamed up, boiled over, and made our home reek of scorched
milk. By the time our last child was born, Sidney Hass had passed away and
we had to find Merrill who had semi-retired to Peekskill. Most important,
after only a short time on the Haas diet my children became as healthy as
their peers. Today, my children (age 37 to 47) have no overt celiac
symptoms and are productive, well adjusted adults.
In my case, at age 45 (in 1972), following an IV with Inferon
(iron-dextran) prior to a hysterectomy, I began to have severe hypertensive
attacks, myalgia, and diarrhea and colonic distress when I ate pork,
including lard. By age 53, a great deal more than pork distressed me. It
never occured to me that I was experiencing the same symptoms my children
experienced in infancy. I was diagnosed with stress syndromw and irritable
bowel syndrome and told to change my life style and eat more grains and
roughage. The latter, of course made me worse. I had one colonoscopy,
sigmoidoscopy, and ultrasound examination after another, which revealed
At age 58 I saw a gastroenterologist who suggeted that perhaps I had celiac
disease based on my children's history. Unfortunately, withing 2 weeks of
that examination I was scheduled to move 2500 miles to Washington, DC to
take a new position. As a result, I started again trying to fina a
physician in DC who would work with me rather than prescribe medications
and tell me to remove stress from my life. My original degree was in
pharmacy and I did not want to get on the antacid, antispasmodic,
tranquilizer treadmill. I got no help from searching the medical literature
about celiac disease either. The gluten-free diet was useless. And except
for continuing to eat potatoes and rice (in order to sate my appetite) I
ended up on the Haas diet. This was not adequate and about 2 years ago my
health deteriorated so much, I thought I might have to retire. Because of
flatulance, diarrhea, and severe vaginitis and cystitis it was impossible
for me to work around others, travel, and eat outside my home. In addition,
I had wasted to 100 lbs and was fatigued, had trouble consentrating and was
in constant pain
Then one day, I was in a used book store and saw a book called "food & the
gut reactio" by Elaine Gottschall. I must admit that I was skeptical
because she was a dietician (Elaine wants me to clarify that she is a
cellular bioligist). I could not believe what I read. She was RIGHT on. I
came home & removed rice & potatoes from my diet. In 4 days I had my first
solid bowel movement in 25 years. I also slept for 8 hours uninteruppted
for the first time in years. I had forgotton what it was like not to suffer
from and be distracted by bowel & bladder urgency. The color came back to
my cheeks. I managed to put on 15 lbs, and my energy was fully restored.
I am taking the time to write this because I am truly concerned about all
the children with celiac disease who are chronically ill.. They do not have
to be chronically ill. I have attended several local celiac society
meetings and watched the chldren. These children will never be able to
reach their fullest potential while on a gluen free diet. The good news is
that it only takes about 3 years on a restricted carbohydrate diet to
restore the childrens health so that they are sympton free and remain that
I plead with you to try this simple approach to controlling and reversing
celiac disease. You should expect success if you enlist patients and
parents who have the discipline to maintain constant supervision over their
children's diet and who have the intelligence to understand simple organic
chemistry. I realize that it is harder today to restrict children to a diet
such as this with all the prepared foods on the market and the faster pace
of life. However, both my husband and I worked while raising our children.
We made tremendous changes in our lifestyle to accomodate our children, but
in doing so we succeeded in restoring their health. At that time it did not
seem like such an inconvenience as we watched our children blossom. When
they cheated on their diet, or relatives allowed them to cheat, we all had
to pay for their misery. All I can say is that it was well worth the extra
time & effort. My children still have excellent dietary habits and avoid
prepared sugar/starch-rich products on the market.
In my work I often get letters from people who describe themselves as
victims. Most of the letters are filed away agter I send them a thankyou
note for their interest in my work and encourage them to continue the
efforts to improve their lives. Consequently, I hesitated sending this
letter to you. In the end I decided I must--- because I cannot stop
thinking about all those children at the celiac meetings with their
strained faces and miserable dispositions. They deserve the good fortune my
children and I found via the restricted carbohydrate diet. They do not have
to remain chronically ill. I often see adults whom I am certain would
benefit from this diet but I am certain they would not have the disipline
to follow the regime; On the other hand, I can no longer count the number
of people whom I have convinced to try this diet and who have had their
health restored, including women with diagnosed Crohn's disease who had no
hope of ever regaining their health.
Only the best to you in your endevour to create an awareness about celiac
disease and doing something about it.
With deep respect,
Theo Colborn

Starting over
Sun, 9 Mar 1997 22:35:10 GMT


Your questions are most valid and I should have clarified what I had
said. I really should not be posting to the group as I am not dedicated to
the diet as others are. I have none the less had remarkable improvement.
Elaine has said that if the diet has not helped you after one month that it
probably won't be of benefit. After one month I could not see enough
progress to really merit such strict eating, and so I gave up and went off
the diet. I got so sick. I was very surprised, and so I went back on the
diet and I didn't get really healthy, but I wasn't sick either. And so I
have stayed with the diet all this time because I must admit I do feel
better eating this way. But I am not strict and as such my experience
cannot really be of benefit to others. I probably eat about 90% according
to the diet, that is the best I find I can do with three teenagers to cook
for and an overly busy life myself. I did end up on a holiday last summer
and was able to stay with the diet for 3 weeks, 100%. I did not find any
noticeable improvement in that time. I am extremely strict with sugar as
that has such a horrible effect on me, but I don't notice any problem with
rice. I can't tolerate honey at all, but don't notice any ill effect from
pasta as long as the sauce is homemade. And so I go along, not following
Elaine totally but having found a comfortable way to function, sort of
customized. I don't consider that I will ever "go off" the diet. I think I
will eat this way for the rest of my life, and I am ok with that thought.
If you really want to give the diet a try, 100% + is the only way to
go. But if it doesn't work, than personally I wouldn't drop it completely.
There is just too much merit to it on so many levels. I am one of the
fortunate ones who have had surprisingly good cholesterol and Hdl and Ldl
results. It would be a long list if I listed all the health benefits I have
acheived. My life the way it was and the way it is, there is no comparison,
even in the amount of time I used to spend in Doctor's offices would amaze
anyone. No more of that for me. You might find my story sad, but if you
get at least as good a result as I have, you will not be sad! If you get
the result that Rachel has, you will be thrilled! I hope you are,



Great to know that there are others out there who have customized and are
still getting a benefit. None the less, I think that for the benefit of the
Newbies, all variations of the diet should be prefaced with a disclaimer.
They really have to learn how to do it and how to do it right, and it
becomes very confusing to them when someone like me posts a message, as
shown in Joaquim's initial response.
Interesting that some of the things that you find allowable are like poison
to me, and some things that top your no list are things that I can eat a bit
of. By the way, you don't say how you are doing these days, would love an
update. You have been on the diet about the same time as I have and also in
the group the same length of time.

I have lately been having unusual success and I think it might be because I
am making my yogurt with starter instead of with storebought yogurt. Thanks
to the person who suggested this. Or maybe I have been on the diet such a
long time that it is finally starting to clear up my intestinal problems.


To Carol et al..Update
Tue, 11 Mar 1997 3:13:50 GMT

Hi Carol and all:

Carol, you had asked for an update, and here it is!

I feel that I have gained an incredible amount of control over my disease in the
year or so on the diet. If I feel slightly off (increase in D, more gas ect..)
I know it's my own fault, and I know what KIND of food to look for. For
example, I think that I have to scratch peas off the list...along with all the
other legumes. I don't think I can do legumes AT ALL! Bummer, since I just
bought a whole bunch of frozen peas (so convenient!), but I think they make me

One negative side effect that I have noticed is that the better I feel, the more
I go into a kind of denial that I have a disease at all. I recently got a new
job and with it, new health insurance. I was not paying attention to how much
meds I had left and, as a result, ended up going about 5 days without. I know,
I know, really stupid but who said denial was intelligent? By the end of the
4th day, I was beginning to feel that old feeling of extreme urgency to "go",
which I had not experienced in years. A rude awakening, to be sure. But, I
have learned how to get myself back on track pretty quickly by paring down to a
few basics (applesauce, carrots cooked to mush, scrambled eggs and meat).

Even though I'm pretty happy about my progress, I get really frustrated at times
and just can't help myself from cheating. I get so sick of going out to
resturants and finding the few things that I can eat, waiting for my food, and
when I get it only to discover that it's served over polenta or something like
that. I feel like screaming because they did not think to list in on the menu.
It takes a supreme act of will (which I don't always have) to turn down food
that's SITTING RIGHT IN FRONT OF YOU. I feel like an alcoholic at times,
sneaking a bit of this or that when no one's around.

As I've mentioned, I got a new job. To be brief as possible, I had been working
for several years in a human services agency, where everyone was very close, to
the point that everybody knew everybody else's business. With the new job, (in
for-profit, very different) I wanted to take a different approach. I don't want
to be close with the people I work with, it's a different environment, I want
more separation between personal and professional. Well, as there is always
food in the work environment, I've already had to turn down numerous items of
food that I can't have. Already, I can tell my co-workers are wondering "what
the hell DOES she eat?" I get torn between wanting to keep my privacy (as I
think my UC is MY business and no one elses), and just wanting to say..."Look, I
can't eat this, that or the other thing because....." I have not decided yet
how I will resolve this conflict.

Anyhow, I gotta go...sorry if the above seems a little negative (2 days before
my period EVERYTHING tends to sound negative!!!). Wishing everyone success,
good health, and minimum trips to the bathroom....

April in Seattle


On Mon, 10 Mar 1997, Dempsey wrote:
> Roy (and everyone)
> Very interesting indeed about the aspartame. I too have been suspicious
> of it for awhile -- only indulged on that unfortunate whim. Actually,
> before I found this diet, it was one of the things I gradually figured
> for sure triggered D for me if I had it two days in a row. It was
> enough that I eventually gave it up. I can't believe it, there was a
> time, long ago, as a teen, I practically used to live on the stuff, I am
> embarrassed to say. Roy, if you know of any particularly good
> information on the web regarding aspartame's effects, could you let me
> know? (By the way, all, I don't know how this relates to the diet, it's
> not a carbohydrate, so it must have some other way of causing
> irritation).

Denise and folks,

Luckly I saved the www address for the aspartame. Worth a visit. IDBers
should play safe and stay clean of nutrasweet. Citrucel, higly recommended
for regularity by doctors, has that poison. The regular Citrucel has sugar
which as we all know is out of question



Re: Possible Aspartame Problem?
Tue, 15 Apr 1997 2:45:54 GMT

>Hi Everyone,
>This is a general request for any who might be familiar with the following
>series of events over the last 24 hrs.
>Martine has been faithful on the diet for over 14 months, (7 months with
>meds). We have been monitoring her bloodwork since that time as we get a
>copy from our GP. Her HB has come up to 105 (from 44 lin Feb 96) and her
>platelet count has dropped from 1300 in Feb 96 to 550 as of Thursday 10th
>April. Our GI and GP state that the platelet count is an indication of
>inflammation activity and hence " disease activity" The strange thing is
>that last night (Friday) she started to pass blood, quite red and brisk,
>although no other symptoms (pain, nausea, loss of appetite. etc) accopanied
>it. It has continued to this afternoon (Saturday). Our only possible
>culprit for this could be that with supper last night she had a glass of
>diet Pepsi (with Aspartame) We were wondering if any others had a similar
>experience, or had, for no possible reason a "flare" in the middle of
>recovery through the diet?. It is baffling us all as her recovery has been
>steady with weight gain, bloodwork improvements and the ability to do more
>in her daily activities.
>looking forward to hearing from any of the group

There are many reasons for a flareup. Since both Crohnes and Colitis are
associated with the immune system, when it is assaulted ( by flu or other
virus, it can fall out of balance). Whilst the diet may balance the bowel
flora, an unbalanced execution of the diet can cause severe malnutrition
(deficiency in some vitamins and minerals or keto acidosis if not enough
carbohydrates are consumed) you can go OK on the surface, but meanwhile the
body is being depleted of vital minerals. Balanced and nutritional diet is
essential whilst on the diet. plenty of vegetables many times each day is
what is required once the diarrhea stops.
Also do not overlook the effect of stress hormones on the GI tract. and on
the metabolism in general. Adrenal exhaustion is common in those with this
condition since long term anxiousness will deplete the hormone reserves. -
replace with EPO, olive oil, linseed oil and cod liver oil on a daily
basis. all of which are allowed on the diet. fight anxiety with weak herbal
teas that relax and maybe some aromatherapy.

Regards Michael

Re: Possible Aspartame Problem?
Tue, 15 Apr 1997 1:21:23 GMT

>Hi Everyone,

>... Our only possible
>culprit for this could be that with supper last night she had a glass of
>diet Pepsi (with Aspartame) We were wondering if any others had a similar
>experience, or had, for no possible reason a "flare" in the middle of
>recovery through the diet?. It is baffling us all as her recovery has been
>steady with weight gain, bloodwork improvements and the ability to do more
>in her daily activities.
>looking forward to hearing from any of the group

Dear Allan,
This sounds very familiar, but God only knows whether it was the aspartame or
some other ingredient in the pop. I was doing just fine on the diet too (I
have CD), and then one day when I was really thirsty and saw some Coke in the
fridge, I drank about 1/4 cup. I didn't think it could do much harm. The same
day, several hours later, I started getting liquid bloody diarrhea spraying out
all over the place. This was the worst I had ever experienced! I thought it
must have been the Coca Cola for sure because that was the only deviation I
made from the diet. Anyway, as it turned out, I went to my gastro doc and he
gave me Dipentum, which I had never tried before, because I had been taking
Asacol and it wasn't doing anything for the bloody d. The Dipentum stopped the
bleeding (apparently), but after a week or so on it, I had to discontinue it
because the diarreah continued (non-bloody though) and it was suspected as
being a "side effect" of the Dipentum. When I stopped taking it the diarrhea
went away, so it was basically confirmed that the Dipentum was the cause.
After that I was fine for a long time.

Months later, I started drinking Perrier carbonated water with some juice
added. I had a pretty bad flare, and finally figured it may have been the
soda. I don't know for sure, but I gave it up and was fine again. So, I think
that even though some carbonated things are supposively allowed on the SCD,
some of us cannot tolerate them at all, therefore, if you experience something
similar, and you suspect pop or soda as the cause, I would discontinue it. Of
course, you are probably already aware that Aspartame in general is not allowed
Hope this helped.
Anna (in remission after less than a year on the diet).

Carolyn, (& others) Tue, 15 Apr 1997 15:29:56 GMT

I'm on the diet for 1 month now. I am better than before, not only because of the diet but also because I've started with prednisone (15 mg/day) one week ago.

As you well know, it is very difficult to know exactly when to start with each kind of food. So, I've been eating almost exclusively carrots, green beans, zucchinis, tomatos, cooked apples and pears, swiss cheese (Emmental), cheddar cheese, fish, meat, yoghurts and also bananas (very little) in the last days. I'm also taking some vitamins and Cat's Claw.

I decided to maintain (more or less) this basic diet until having diarrhea more than 3 times per day.

I have to confess that I was hoping to be a little better by now, but I don't complain.

Best wishes,

Joaquim Dias (1 month on the diet)

Joaquim's progress
Tue, 15 Apr 1997 17:35:54 GMT


You are doing wonderful on the diet! You can start to eat new foods when
your diarrhea is under control. Just start slowly with the new foods so that
you can tell if something is bothering you.

Are the vitamins you take sugar-free? Be very careful about those things.
Also, make sure the bananas are very ripe. I've had problems with bananas
because I like to eat them before they turn completely ripe.

Are you making your own yogurt? Its very import that you do it right. What
is the Cat's Claw for?

I don't remember you saying if you had crohn's disease or something else.
I've had crohn's since 1980. And after two bowel resections, this diet is
the best medicine I've found. But I still struggle with the crohn's and with
staying on the diet.

Be patient with the diet and give it time to work!

Your friend,

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