Doctors...


Browsing through the archived ibdlist digests, I came upon this doctor's opinion on our diet. This is the same guy I was referring to, who previously wrote me ignorant e-mail messages.

Anna


From: SPHolland@aol.com
Date: Mon, 27 May 1996 17:05:45 -0400
Subject: What Dr. Holland has to say about a diet

Well, a question came addressed to me. I think I addressed such a question before, but it may have been in another context.

It was asked:
This is a question for Dr. Holland. According to the people at the Olde Crohn, thousands of people have been helped by the specific carbohydrate diet (no grains, few milk products, no sugar). Several people who write to this group appear to have had success. Yet whenever I mention it to my doctor or gastroenterologist, I get answers like "UC is categorially not a dietary disease."
Have there been any large-scale studies of this diet?
Has it been shown not to work for most people?
Does the theory behind it make any sense? (The idea is that an unknown agent damages the intestines' ability to secrete certain enzymes, with the result that bacteria flourish in undigested food, which in turn further damages the intestines and so on.) If this diet works for any significant number of people, it would be worth a try, even though it sounds incredibly difficult and restrictive to follow. If it's a lot of malarkey, I don't want to mess with it. Life is tough enough these days. Thanks.

In general, physicians do not make recommendations based on theory alone.
There is a rich history of theory based approaches not helping - bleeding to get out bad humors, trephination to release devils in the head causing headache, leaving high blood pressure untreated so that blood will get into the areas of the brain, kidneys, and heart that are partially blocked off, and treating irregular heartbeats with medicine to make the heart beat regularly. And that is with what was felt to be informed physicians!
Now, look at the uninformed theory of the specific carbohydrate diet. Regarding the enzyme deficiencies: What deficiency? Lactase perhaps, but that would not require such a restrictive diet. And bacteria flourishing? Half the dry weigth of stool is pure bacteria. They depend on fiber getting into the colon undigested so that they can matabolize it to short chain fatty acids that we need for our health.
Now, there are certain patients that are well advised to avoid certain foods that are mentioned in the specific carbohydrate diet no-no list. But none of those patients will benefit by avoiding everything. The patient with celiac disease needs to avoid certain grains, but everything else is ok. The problem I see with the diet is that it is overly restrictive for everyone who would benefit from some of the prohibitions it suggests. So, yes, if you have no sophistication and you want to cover all your bases in someone that might have some sort of digestive disease you could recommend the diet. A smarter approach would be to limit your recommendations to what has been shown to work in controlled trials. I have not seen any references to any trial where anyone was helped by the specific carbohydrate diet.
I suspect that the claim is a lie.
The specific carbohydrate diet may help some, but at the cost of excessive treatment.
(Odd, isn't it, that doctors are blamed for overtreating patients at times, but there is no outcry about the specific carbohydrate diet being overtreatment). It is not useful to engage in a practice just because it has never been shown not to work. No one has ever shown that spraying insect repellent into the rectum is ineffective in ulcerative colitis, but I am not persuaded that such an oversight by the research establishment is a reason to start such a course of treatment.
Now, as far as UC not being a diet related disease, there is some controversy about that. Short chain fatty acids are bacterial metabolites that are the main source of fuel for the enterocyte. Lack of SCFA's causes a certain type of colitis. At the DDW meeting last week a controlled trial of SCFA's was presented that showed that SCFA's have a mild beneficial effect when given as enema's in patients. The benefit was less than that of sulfasalazine. So much for the specific carbohydrate diet - more and different germs may be required for the treatment of UC.
If there is something that turns out to be correct about the specific carbohydrate diet hypothesis do not give it any credit. The underlying hypothesis is a goofy guess. After all, the fact that one can save the life of someone with a blood clot under the skull (an epidural hematoma) by putting a hole in the skull is not a reason to celebrate the people who practiced trephination in the treatment of headaches.

Steve Holland, M.D.


Look at what "doc" says here. He seems to realize that eliminating sucrose helps, but doesn't link that with the possibility of any dietary limitations having an effect. He finds it "far fetched" that refined flour and sugar are hard to digest -- like he knows the first thing about food and it's effect on the body. I'd like to ask him how many hours of schooling he had in nutrition, etc. Does this guy make any sense to any of you? I don't know why I let comments like these bother me, but I do. It scares me to think that the majority of doctors out there think there is no connection between food and illness. Do most of you out there just ignore things like this since you probably can't change someone's opinion?



From: SHolland@eworld.com
Date: Thu, 16 Nov 1995 00:36:25 -0800
Subject: Re: IBDlist Digest (15 Nov 95)

The radical treatment (surgery etc.).
It is not surprising to hear that industrialized countries have the highest incidence of these kinds of disorders since their diets consists of very difficult to digest foods such as a lot of refined flour, sugar, an almost decadent quantity of protein in the form of red meat. Nor is it surprising to hear that mediterraneans are the most healthy people on the planet because of the capital presence of fruit, fish, and olive oil in their diet. As previously indicated, I do not believe it is the only factor in such a


I generally reserve comments to response to questions or to comments of general interest, but this post recently was far fetched. It is generally considered that simple sugars, refined flours, and meats are the easiest of any food to digest. Fiber foods are actually least well digested. The post went on to complain that doctors denied patients the option of limiting their diets as a way to deny patients control. The fact of the matter is that
ther e are few foods that have ever been shown to affect a patient with
Crohn's on a regular basis. The reason a doc will tell patients this is so that patients do not become diet cripples, avoiding a multitude of foods that they probably could tolerate.

Now, plenty of patients are able to identify a few foods that really set them off. These observations should be respected. Wholesale elimination of the majority of the available foodstuffs in the grocery though, is a sign of digestive problems, not of a cunning approach to the illness. Of the foods that have been shown to be important, patients with strictures should avoid swallowing plugs, like raw broccoli or raw carrots or popcorn seeds. Studies out of europe a few years ago showed that elimination of sucrose decreased relapse rates of Crohn's. Aside from these few diet observations, no other advice is known to regularly benefit patients as a group. As noted above, individual intolerances are common.

Stephen Holland, M.D.




>Date: Sat, 21 Dec 1996 12:37:06 -0500
>To:UC/Crohns
>From:shodanrt@liii.com (Rachel Turet)
>Subject: Elaine answers to Dr. Holland

I faxed Elaine a copy of what Dr. Holland had to say and here is here reply;


>Dear Rachel,
>I'm writing this to give comfort to you and others on our diet when the
>Dr. Hollands, in their ignorance don't want to be bothered by the facts
>and the reality. It is no use arguing with these people; we continue to do
>our work- its safe, its scientific and its effective in over 80 percent of all GI
>problems. You must remember that the Dr. Hollands are redundant when a
>diet is more effective than thier approach. Remember "the Dr. Hollands"
>did this to Dr. Haas and he carried on. I'm doing a history of celiac
>disease and it is appalling to read how effective work was nullified. I'll
>send the 4,000 word article to you after it is published by the English
>group on March,1997.
>Remember too, it happened with the Dr. Shutes in London, but with their
>Vit. E work re: heart disease. It happened to Pauling. But we will carry on
>- one person at a time!
>Love, Elaine
>



On Sat, 14 Dec 1996 11:06:43 -0800 David Ebbo wrote:

First, I'd like to thank everyone who replied to my mail yesterday. It is great to have such support.

Yesterday, I ended up making an emergency visit to my doctor, and not too surprisingly, he put me back on the evil prednisone (40mg, -5mg every 5 days), which I hadn't used since my problems started 18 months ago. I hesitated about taking it, but since I'm going to France in a few days for two weeks, and I would like to enjoy my vacations, I figured it was probably the right thing to do (ironically, I was in France when my problems started, but let's not get superstitious!).

I had also brought Elaine's book with me so he could take a look. He had not heard about it, and he didn't seem too interested. Basically, he looked at the cover, noticed the list of 5 or 6 diseases that the diet is supposed to treat, and said something like: "well, that would be very nice, but there is just no way a single diet is going to treat all these diseases, because they're all really different". I didn't want to get into an argument with him, since I really don't know enough about the diet or the different diseases to make much of a point. Besides, I really think he is a good doctor, so I'd rather stay on "friendly terms".

So what is the 'correct' answer to his criticism? I must say that it is indeed a bit surprising that the exact same treatment (i.e. the diet) would have a positive effect on several more or less unrelated intestinal diseases. Any opinions?

Thanks,
David;


On Sat, 14 Dec 1996 11:06:43 -0800 David Ebbo wrote:
>First, I'd like to thank everyone who replied to my mail yesterday. It is
>great to have such support.
...
>So what is the 'correct' answer to his criticism? I must say that it is
>indeed a bit surprising that the exact same treatment (i.e. the diet) would
>have a positive effect on several more or less unrelated intestinal
>diseases. Any opinions?
>
>Thanks,
>David;
>
>

Hi David,

I don't have an answer for your doctor's criticism, but I'm happy to say that my doctor was mildly positive when I told him that I'd been observing the diet for over a month. I showed him the book and explained that I was trying it out, and he said something like: "I've heard of this diet - I've got a few patients who are on it, and they seem to be doing OK." Then he briefly leafed through the book, looked at some of the recipes, and said: "It seems to be pretty well balanced, so if it works for you, go for it."
He went on to say: "I wish I could offer definitive advice, but there just hasn't been enough research on the causes of these diseases, or the effect of diet for me to able to urge you on one course or another. For now, we'll use the drugs as long as they help, and as long you can tolerate them."

While that isn't a ringing endorsement, I give him good marks for having an open mind, undersanding my desire to exert control, and admitting that he doesn't really have all the answers. I thought you might appreciate hearing about a positive experience.

Bill


Re: My doctor's opinion on the diet

At 6:32 PM -0800 12/14/96, michael cabarles wrote:
>Why question one diet, for a few diseases, when doctors use one drug for
>the same diseases - prednisone?
Yes!
Yes!
Yes!
Yes!
Yes!

Jonathan


At 11:06 AM -0800 12/14/96, David Ebbo wrote:
> he said: "well, that would be very nice,
>but there is just no way a single diet is going to treat all these
>diseases, because they're all really different".


See Andrew Weil's tapes for his indictmant of the medical system, the way it views bodies, and treats such subjectds as diet.
Most GI docs, as well as any other docs, are trained to look for symptoms and get rid of them rather than treat the whole person. Most GI docs know shit about diet, so to speak. It's abvious he knows nothing...


>So what is the 'correct' answer to his criticism?

If you view his words as criticism, check out your criteria for criticism.
You also set yourself up for his remark, if you in any at all knew his response would be similr to what it was.
I'd recommend that you surround yourself with people who have experienced healing, especially those who have recovered from what you have. Find out what they did. See if it works for you.
Next time you have something to present to your doc, like how the mind works or diet, ask him first: do you know ANYTHING at ALL about the subject I want to discuss with you?

Jonathan




I am upset & highly frustrated about a certain MD who e-mailed me a single line note:

"What is the evidence that IBD is caused by starches and sugars?"

He got my address and name off the IBDlist digest, which I am a member of, and I had written a message some of you may have seen entitled "Gottschall diet misconceptions addressed".

I e-mailed him back, explaining that the book has plenty of references citing "evidence" to support the theory behind the diet. I suggested that if he was so interested in disproving the diet, he should at least get the book and read it so that he could know what he was talking about before telling patients that the diet was bad (which seems to be his opinion, as the resident doctor appearing on the IBD list regularly).

He e-mailed me back with a response that had a totally ignorant tone. It was like he ignored most of my comments, and questions, and totally misinterpretted everything I said. I asked him why he or some of his MD associates don't try running some sort of clinical trials to test the diet. He didn't bother answering this.

I responded, and he replied again, with an even shallower response. I found his comments to be patronizing, insulting, and again ignorant. He ended off by saying he was sorry that I suffer intestinal disease, and that perhaps I should get a new doctor and join a support group. I was irritated because I never even mentioned any "suffering" I was experiencing, or problems with not getting proper care from my doctor. The main point of my replies to him were to defend the SCD and to try to open his mind to the possibility that it has some merit. His basic attitude was that until someone served him "evidence like a clinical trial" on a silver platter proving the diet has any merit, he will advise against it, maintaining that it is worthless and even dangerous due to possibility of malnutrition. He is unwilling to look at the book. He requested that I tell him what the bibliographical references were, exactly, so that he could look them up in his library. He suggested that I do so as well.

I am just telling everyone this, because it frustrated me so much, I wanted to scream. He won't listen to reason. It's like he reads my messages and they go in one eye and out the other, without registering any data. I don't know if I should just give up trying to convince him to at least read the book, or if I should get the book and type in all the bibliographical references for him. Anyone want to comment or have similar experiences with doctors?

Anna




Re: NSAID's and IBD
Thu, 23 Jan 1997 0:06:31 GMT

I think we need to stay as open minded as possible. I question the blanket
statement that Doctors, don't care, don't know etc. I for one am alive
after being treated by a competent and compassionate oncologist for
non-hodgkins lymphoma 5 years ago. I have been mis-diagnosed and poorly
treated, I have been accurately diagnosed and treated with success. I can
say the same for almost every facet of my life. I have been ripped off by
plumbers, mechanics, painters, bosses and treated fairly by those
professions as well. Medicine is a combination of an art form/detective
work/technology and hopefully includes learning from mistakes. Physcians
are no more likely to be greedy money grubbers than those in any other
field. Yes they are well compensated/paid and they should be, they are some
of the most important people on this planet. The hours they put in, the
stress and emotional roller coaster they ride with us patients is
extraordinary. Tens of thousands of individuals have been studied for
different results and responses towards different drug regimes. We are
individuals and might have different results. Still we are humans and there
is a tendency to respond in set patterns. Diabetics do better on insulin,
bronchitis responds to antibiotics, atheletes foot improves with
fungicides. Medicine works. I hope most of us will take what works best
for us and the advice of our medical team seriously. Since we are
communicating on the net there is a tremendous spectrum of information for
us to look at. Chrons Colits Foundation of America, virtual hospitals, net
search, support groups (hi). Open and frequent communication with your
doctor is probably the best answer. If you are unhappy with the level of
communication, change doctors. Question doctors, but also question
untrained individuals who are reading literature perhaps without scientific
basis. Without knowing the total population the SCD has been tried on it
is impossible to validate. How many people have tried it, how many have
been helped, how many haven't responded, how many have been worse, how many
would have been better/worse on a given day with/without the diet. Are we
hearing only from those who got better, perhaps those that also have
gluten/wheat allergies that were not diagnosed? I don't know. Without a
large number of people, in the 100's/1,000's broken into a control group
and variable group, no legitimate conclusions can be drawn. I am on the
diet and I am on my meds and I talk/zap my doctor frequently. Part of our
frustration and anger is because of the mystery of our disease, since the
cause (bacterial, autoimmune, diet, combinations of those possiblities,
?????????) is unknown, there is no cure that works for everyone, except
surgical removal of the colon, at least that is the end of colitis and
possible colon cancer. Without knowing the cause, only the symptoms can be
treated, its not a perfect solution, there is a lot of grey area, its
crappy but that is the way it is. Lets be careful and not dispense in
dogmatic terms what works and what doesn't work. Make suggestions but in
reality no one knows.

Dave Johnson
dajhnsn@sdcoe.k12.ca.us




Thanks to Dave Johnson
Thu, 23 Jan 1997 1:53:29 GMT

Well stated! Thanks to Dave for taking the time to say something I wish I
had said. I, too, can point to good experiences with considerate doctors
and nurses. Rather than get into doctor bashing, we should be using this
bandwidth to carefully share information and personal experiences.

Bill Homan
bhoman@transart.com




Dave Johnson comments re NSAID's and IBD
Thu, 23 Jan 1997 13:19:01 GMT

I think that Dave's point of view is very well taken and extremely well
presented and I agree with him.

From my personal experience, I have family members and friends who spend
more time and energy researching the benefits and features of one vacation
spot vs another (or any other major purchase such as a car, tv etc) than
they do in selecting a Dr to treat their bodies.

Sometimes the choice of a knowledgeable Dr with the expertise and a large
patient base in treating IBD is difficult due to the patients location vs
the Dr's, available insurance coverage etc. Like the saying goes "If you are
not part of the solution, then we might be part of the problem".

I am a firm believer that traditional expert medical advice in conjuction
with following the SCD has resulted in very positive improvements in my CD.
I also think that various non traditional remedies also may benefit my
condition. I continue to experiment with them supplementing my ongoing
traditional medical treatment. In other words it is not an either or
situation but one helping the other.

It seems that we have become a nation of "Sue Happy" individuals. This has
hit the medical profession. Some of the suits are very justified and some of
them have been shown to be frivalous. In the end all Drs are being hit with
very high malpractice insurance premiums. I therefore assume that they would
not prescribe any treament that cannot be documented by convential wisdom
and/or is the result of a structured scientific testing program. It would
appear to me that they have everything to lose and very little to gain by
sticking their neck out in suggesting some "untested" protocol.

From the business point of view who would benefit financially from the
expensive cost of doing a scientific test of SCD to prove that it really
works other than the publishers?

I have tried it, I like it, it works for me. Why spend a lifetime bad
mouthing and writing about small segment of the medical world that I am
using my time and brainpower to avoid in the first place.

To your good health....

Mac/IN

Mac W Friedlander,sobaypurcpt@dmci.net



Not telling the GI (HUSH HUSH)
Sun, 4 May 1997 16:25:15 GMT

>Congratulations! You have nothing to gain by not telling your physician
>that you are off meds, what is he going to do, make you take them? Plus
>your information is data and hopefully he and his peers would be interested
>in it. Also if you ever were hospitalized and unconscious, obviously a
>stretch, your med records would be in error and the treatments might
>reflect that error.
>Dave Johnson

Thanks for the congrats! I know I have nothing to gain by not telling my
GI doctor that I am completely off all medication, but like I said he does
not believe in the diet and he will tell me that I am just in remission.
When I first met him on 1/2/97 he got in my face when I told him that my
doctor gave me the book and to follow the diet faithfully. His name by the
way is Dr. Ronald Hoffman, he wrote the forward to Elaine's book. I am
going to see him on 5/14/97 and I plan on telling him that I am completely
off all medication. Going back to my GI doctor he is O.K., but he believes
in only medication, surgery and he also was putting down Dr. Hoffman and
Elaine. So, I hope you can understand my point of view on not telling my
GI. Maybe down the road I will end up telling him who knows?
I have no more cramps and I was previously going to the bathroom about ten
times a day, now I am going about once maybe twice a day! I also noticed
that my breath doesn't stink at all anymore, since I started the diet.
Everything about the diet is great!!!!!!! I thank GOD for Elaine and
everything that she ha s done for me and for everyone that she has
helped!!!!

PS I am not telling anyone to follow my steps. This is for the people who
would JUMP OFF THAT BRIDGE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Again thanks for the concern!

Good Luck!

Jim



Necessity is the mother of invention
Sat, 31 May 1997 11:46:47 GMT

>"painsolv" , Internet writes:
>
>This chap ("Dr. Steve Holland") deserves an e-mail right now. What a dolt:
>the medical establishment can't give us any answers except "cut out the
>bowel" or "here, take these drugs", that's the best they can do. Yet when
>people sit down, think hard & try to figure what works & what doesn't
>to help themselves, doctors yell "That's crock!"
>
>Yes, I understand the medical establishment's position on "valid
>research" ... it's "cold hard logical science" and "double-blind studies",
> ... easy to speak in intellectual babble when YOU're not the one with the
>pain & the bleeding and all the other griefs of IBD!
>
>But when one is sick, all the time, and nothing the doctor does really
>solves it, and then something comes along that might help THAT ALSO MAKES
>SENSE (what could make more common sense than "What I put in my bowel
>can either hurt or help my body. So let's find out WHAT those things
>might be!"), well, that's just not good enough for the good ol' doc.
>Well, excuse me, doc, but YOU can take a hike!
>
>In a way I understand their thinking: from their medical school training
>and the constant propaganda by drug company sales representatives,
>physicians have learned to look at the world like a horse with big
>blinders around its eyes: they only see their tiny little picture, but
>never learned & can't accept that there's a bigger world of possibilities
>out there. And of course they're trained to consider themselves "gods"
>who know everything and can cure anything. Only a few wise old foxes among
>doctors, those who've seen a bit of where medicine fails, AND are willing
>to accept such truths, are more open-minded.
>
>If at least physicians would say "It's not good enough by some of our rigid
>so-called 'scientific' standards, but I keep hearing about it from my
>patients, so maybe there IS something to this ... let's check this out!
>And if you, my patients, says & believes it helps YOU, there must be
>something to it ... let's check it out".
>
>On the other hand, what IS a physician supposed to investigate / believe?
>There's a "fad every month" in the "health food" industry ... once it was
>aloe, then devil's claw, then shark cartilage, then this that & the next
>thing ... the con games & hucksterism in that industry just never stops!
>So what's a doctor supposed to do? Run after every quack "cure" that
>his patients are high & fervent about one month, then next month it turns
>out to have been an illusion?
>
>So maybe the conservatism is a blessing for patients: it prevents us from
>being foisted with one "miracle cure" after the other from our doctors ...
>there's enough of that coming from the "health food" store!
>
>So that means we, the patients, ARE on our own: we have to figure things
>out by ourselves, experiment with our own bodies, and see what works, and
>what doesn't. Then, if enough people over a long-enough time achieve
>good results, it WILL come to the "establishment's" attention, slowly, but
>surely. Then of course they will "hijack" the ideas, integrate them into
>their university research studies, and claim them as their own discoveries.
>Nevertheless, ideas that work tend to "float to the surface" eventually.
>So critics like "Dr. Holland" are actually a good tool to remind us that
>there are other ways to see things, and to make us think harder about
>what we're doing.
>
>My gastro-enterologist, who I've had for about 25 years, and he's head of
>the department at a university hospital in a nearby large city, he just
>sort of "pats me on the head" when I'd say "This colitis of mine, which
>I've had for 30 years, has SOMETHING to do with sugar & dairy products ...
>or maybe something else in my food". So whenever I see him I make clear
>that I believe diet is relevant, but because I've never found "The
>solution" so far, I don't get too arrogant about it. Except the question
>always comes back to this: have THEY, the doctors, found a solution?
>
>And of course, drug companies just LOVE to find "solutions" that involve
>being able to sell a drug to a patient that has to be taken for the rest of
>one's life (like Asacol / 5-ASA)! So they have zero incentive to find REAL
>solutions. That's how life works! In German we say "Bist du Gottes Sohn,
>dann hilf dir selbst" ... "If you're God's son, you help yourself". Or, in
>English there's the phrase "Necessity is the mother of invention".
>
>     That's one man's point of view ... mine,
>
> Dietmar
> near Vancouver, British Columbia, Canada


To: "painsolv"
From: holland@uic.edu (Stephen Holland)
Subject: Re: So, you think the SCD (no lactose, no starches, no grains diet) doesn't work ...
>
>
>The problem I see with a number of physicians is that they do not distinguish
>between an intervention not having support and there being evidence that an
>intervention not work.
>
>For example on the Gottschall diet, there is no evidence that it works, but
>that is not the same as evidence that it does not work. Physicians are
>accustomed to having drugs that have been shown to work, so when dealing
>with drugs that do not have evidence for efficacy the tendency is to
>believe that they cannot work.
>
>In any case, I limit my advice to that for which there is reasonable
>evidence for efficacy given the total situation for a given patient.
>
>Best regards,
>Stephen Holland, M.D.



Re: Dr.Holland
Fri, 11 Jul 1997 3:32:05 GMT

My only contact with Dr. Steve Holland has been on the IBD list and reading
his comments that were causing many IBD patients a lot of concern.

I felt that his answers were thorough, articulate, and professional. He
offered his opinion pro bono in a honest and non scarey form to IBD Digest
audience.

Personally I have the utmost respect for the comments he made during the
last few years.

I have been on the SCD for 14 months and found it to be very helpful in
dealing with my CD. I would never in my wildest expect Steve Holland or any
other Dr. to endorse the SCD. Why should they. Success stories such as mine
and hopefully yours in reality are anecdotal and not scientifically
documented?

Dr's in our litigeous (sp?) have everything to lose and little to gain if
they stray from the proven and accepted medical dogmas. Who would be
willing to underwrite the high cost of a triple blind study in an audience
acceptable to medical establishment?

Why do so many on this group become preoccupied with his opinion about the
SCD? If you feel bad and think the diet might help. Read the book. Make a
comittment and then stick to it. Maybe you will have good luck and see the
type of improvement that I experienced.

Lets face it if there was a "magic bullet" in the form of one medicine and
or one diet in treating IBD and its nasty diseases, then life would be
simple and we would all take that special bullet and be cured. In reality
that is not possible as we all know so we keep on trying to experiment and
find out what works best for us. Isn't that a personall issue and
decision---who needs a Dr. for that?

I've said it before. You really do not know how lousey you feel with CD
until you start to feel better. In my case it was traditional medicine +
the wonderful SCD.

Get healthy and feel gooood again....

Regards

Mac

PS I would be happy to have Steve Holland as my Dr. unfortunately his
practice is too many miles away.


Re: Dr.Holland
Fri, 11 Jul 1997 14:00:33 GMT

>My only contact with Dr. Steve Holland has been on the IBD list and reading
>his comments that were causing many IBD patients a lot of concern.
>I felt that his answers were thorough, articulate, and professional. He
>offered his opinion pro bono in a honest and non scarey form to IBD Digest
>audience.
>
Dear Mac,
Everyone is entitled to their opinion, and much of what you say about
Doctors being in a highly litigious situation has merit, however Dr.
Holland in his remarks does not simply dismiss the SCD as unscientific. He
belittles and mocks those of us who have been reborn to health, as idiots.
I for one am sick unto death of Doctors who think that their education
places them on a godly pedestal with the right to treat us common folk as
fools, unable to think or seek answers. I went to a new rhuematoligist this
week, liked her a lot, but what impressed me most was her interest in my
diet, her willingness to research it for the benefit of some of her
patients and for her remark " As you well know, we doctors have no clue
when it comes to treating IBD". How exquistitely refreshing.
"He offered his opinion pro bono"
Sorry, Mac, but what you might veiw as altruism in Dr. Holland's motive, I
suspect is ego-fest.
Meanwhile, I continue to seek answers from sources who want to help, to
work with me and not make me to feel as though they consider themselves
above me.
Currently, my UC is and has been in remission for over 2 years, thanks to
SCD. Unfortunately the other auto-immune diseases that I have, which are
linked to this, spondylitis and fibromyalgia are not so easy to conquer. I
search desperatly for an "Elaine" to throw me a lifeline in these pools of
despair in my life.
Love, Rachel



Dr. Holland
Fri, 11 Jul 1997 21:29:04 GMT

Dr. Holland wrote:

"Well, yes, a fine theory, but why a diet with the most allergenic protein
mix known to mankind should work is beyond me....

I'm not sure what allergenic proteins he's referring to. Wheat and dairy
are the most common ones. As for dairy, I don't understand why it is
included in the SCD. If one looks at things from a Paleolithic diet
perspective, milk of another animal wasn't in their diet. Other than that,
the SCD is virtually a Paleolithic diet.

Don.



Re: Beliefs, Paradigms
Sat, 5 Jul 1997 23:34:15 GMT

At 05:10 PM 7/4/97 PST, you wrote:
>>On Elaine's diet you'll be eating lots of veggies and some fruits, plus
>>normal amounts of fat. Read the Sears book, and stop worrying about the
>>Fat Police ... I now believe that theory will soon be publically propounded
>>as "Oops, screwed your head around once more, sorry, let's go on to the
>>next fad we can sell you!"
>
>I totally agree with Dietmar's excellent post in response to John's valid
>concern. We have been brainwashed in this society. The industries do it
quite
>easily, and the mainstream medical industries fall for it too.

I call it the "Medical-Industrial Complex" ... industrialized medicine, get
it? (blatantly stolen from the 1960's "Military-Industrial Complex"
catch-phrase)


>Especially the
>Dieticians, whose schooling in my opinion is major brainwashing (sorry to
>offend anyone out there who is one).

Hey, offend, offend onward!

Back in the 1980's I spent one year at a university's nutrition dept
planning to become a dietician. When I submitted a paper on "Vit. A &
possible colitis therapy" (broaching the subject that diet & colitis might,
wow, just might, be linked! real eye-opener, eh?), I was "slapped down" so
harshly by my professor (a woman, just to be fair ... most dieticians are
women ... one of the minor reasons I wanted to get into the professions,
hey, I'm a full-blooded male, I won't deny!), and combined that with the
"food sciences" idiocy we were learning (basically, the chemistry secrets
of how to make industrial foods) that I decided "screw these idiots, I
won't be able to get anywhere with my ideas here!" and left that path.

So I've been "inside the sanctum" somewhat: go ahead, Anna, condemn! It's
up to US to figure it out, since they're no help. And those few
dieticians who've seen the light won't raise their head above the firing
line of their profession's "political correctness" because they'd lose
their cushy gov't jobs (most work in gov't institutions). So there ya
goes! We're on our own! But that's ok, we're doing a great job, the way I
see it.



>The things most MDs and Dieticians
>believe in are pounded it into their heads for years during the training.
>Then
>they become so closed minded, it's almost impossible to convince them of
>anything else. Tell any Dietician about our SCD and they'll tell you it's
just
>plain wrong. They don't want to hear an explanation or believe in anyone's
>testimonial experience,

Because they're brainwashed to discount "personal experience" as
"unscientific" ... as if "science" isn't a totally subjective
value-judgement. If it can't be fit into the square box of a
computerizable data base, it ain't no good, babe! But hey, who can argue
with closed minds?



>because that is the extent of their brainwashing, so to
>speak.
>
>I just saw another exposee that told how they actually have no scientific
>evidence that salt is bad for high blood pressure and heart disease.

Hey, you good guys & gals who have the time really should start to
subscribe to the Paleodiet list server from the same "company" we're now on
... don't quote me, but try <paleodiet@maelstrom.stjohns.edu>, but don't
ask me for advice because I've unhooked & forgot the true details in
preparation for my hip surgery. But the Paleodiet is a fantastic group to
"eavesdrop" / "lurk" around (if you're somewhat scientifically inclined and
can understand the ocasional big words ... it's a group designed for
scientists, NOT laypeople so keep your mouth shut unless you have
astounding insights that scientists would fall over themselves to listen
to). These folks are not your standards scientificos, they're the
oopen-minded kind, really interesting stuff on there.

OK, I'll make it easy for you .... two ways to check them out:
http://maelstrom.stjohns.edu/archives/paleodiet.html
or send "subscribe paleodiet"
in body of text to
<listserv@maelstrom.stjohns.edu>
I think that'll do it.

>Ask
>anyone you know and they'll tell you that too much salt is bad for you.
>Apparently there is no real proof of this. They actually have studies
proving
>the opposite, that there's nothing really wrong with salt, and this idea
of the
>badness of salt started in the 50's with a theory, a rumor and it stuck. The
>media is to blame for all this misinformation as well. Think about how many
>things in the past have been so publicized and thought to be true by the mass
>population, and then later on were disproved and are now regarded as total
>bunk. An old saying goes that many of these ideas we think are "the way it
>is", will one day be accepted to be "as old as sealing wax". (I think that
>refers to the wax people used to use to seal letters, correct me if I'm
wrong)
>meaning that at one time in history, everyone did it and thought it was
normal,
>but now nobody does it anymore and wouldn't even consider it.
>
>Anyway, the point is, I think Dietmar was on the ball with his bit of advice.
>If I were concerned about cholesterol (rightfully so, with all the media
about
>it), I would take a cholesterol test now, before starting the diet, get a
>baseline reading, and then go on the diet for a month. Eat more fish and
>poultry, less red meat; more egg whites, less yolks; more olive oil, less
>butter, and more nuts, fruits, and vegies. Notice I said "more" and "less",
>not "all" or "none". There's nothing wrong with a little butter, but that
>doesn't mean you can slather it on like there's no tomorrow.
>

I agree with you fully on all the above --- Dietmar


>Another thing I remembered is the butter/margerine thing. Remember how it
was
>thought that margerine was healthier than butter.

Geez ... you mean people actually BELIEVED that? That an industrial "food"
could be better than the real thing? I guess people forgot that margarine
(or "oleomargarine", as it was first called, sounds nice & greasy, eh?) was
invented during WWII as imitation butter so that butter oil could be used
to lubricate military equipment!

So we get the crap, and the tanks get the good stuff. Tanks a lot, eh ;-)

> Everyone was convinced.
>Nobody would dare say they thought butter was ok. But NOW, it has been
proven
>that margerine is actually WAY WORSE for everyone than even butter! Ever
hear
>about Trans-fatty acids, hydrogenation, etc?

Paleodiet list again ... they've discussed & discuss all these neat items.


>Did you know that there are
>actually regulations or laws now that prevent margerine advertisments from
>claiming margerine is good for your health? It's all because they proved
that
>margerine is horrible for you! Thank God margerine is not allowed on this
>diet. Although, I stopped eating margerine way before I found this diet.
>Margerine was only invented during the war because there wasn't enough butter
>to go around. I'm too young to remember, but remember when you had to
squeeze
>the food coloring in and mix it up yourself? Gross! When the war ended
there
>was no reason to keep eating margerine, but the companies needed to keep
making
>money so it became the "healthier" counterpart to butter. Now we all know
>different, don't we. Not to mention that margerine is an oil usually
stored in
>plastic (for those of you who read my plastic ramblings earlier).
Margerine is
>probably worse than eating plastic.
>
>Ok, you're starting to think I'm nuts again,

Nope, I'm with ya!


>so I better go.

Stay, damsel, stay!

>That'll be all
>for now. Sorry to be so long.
>Anna
>
>

Good work. Excellent.

See you,

D




Excerpt from a fax from Elaine Gottschall
To: Lotte Wackerhagen

Date: September 8, 1997

The medical doctor is not a research scientist and most do not follow research findings. I do not know what group hands down his protocol for patients but they usually have one thing in mind: CRISIS INTERVENTION. This is often diametrically opposed to restoring real health.
For example, most people with inflammatory bowel disease have iron-deficiency anemia and sometimes, pernicious anemia. To give iron supplements and iron injections for a very short period is OK but hardly, if ever, resolves the problem. In fact, the oral iron supplements generally exacerbate the intestinal problem and are known to increase bacterial infections. (The research into this area fills volumes).
The proper way to treat would be to make sure sufficient folic acid and B-12 are given (often by injections) and try to get the patient to eat eggs and liver and iron found in the hemoglobin of animal foods. Of course, the best way to treat is to cure the diarrhea which is preventing the absorption of all nutrients, vitamins, minerals, calories.




Date: Thu, 3 Sep 98 14:19:15 MDT
From: "Daniel Woods" <dwoods@ucalgary.ca>
To: SCD-list@longisland.com (SCD-diet mail list)
Subject: History of Medicine (joke)

Since there has been recent discussions on the list about how
doctors "guess" about prescriptions, and comparing alternative
(more natural methods), I thought you'd like to see this...

Forwarded message:
> Subject: The History of Medicine
>
> 2000 B.C. - Here, eat this root
>
> 1000 A.D. - That root is heathen. Here, say this prayer.
>
> 1850 A.D. - That prayer is superstition. Here, drink this potion.
>
> 1940 A.D. - That potion is snake oil. Here, swallow this pill.
>
> 1985 A.D. - That pill is ineffective. Here, take this antibiotic.
>
> 2000 A.D. - That antibiotic doesn't work anymore. Here, eat this root.

Thanks... Dan.



Date: Fri, 14 Aug 98 10:04:23 MDT
From: "Daniel Woods" <dwoods@ucalgary.ca>
To: SCD-list@longisland.com (SCD-diet mail list)
Subject: Re: How come CCFA doesn't discuss the "SCD" diet at all?

FYI...
Here's my letter to the CCFC (Canada) and their (typical) response.
My letter may sound harsh, however true none-the-less.

Thanks... Dan.
---------------
Hello,

I was once a member of CCFC but stopped doing so because of your lack of
support towards non-medical alternatives, and especially your attitude
towards diet changes. I found these approaches to be as pitiful and
demeaning as those found in doctors.

I have had CD since 1983, have had 40 inches of small intestine removed after
two operations (1986, 1995). The latter was due to no longer following the
diet changes I had made with the help of a Naturopath. My choice, my mistake,
but due to GI "specialists" saying "eat whatever you want".
I did so until
June 1997 when the doctor wanted me to tube-feed myself at night due to many
BM and losing 10 lbs in 6 months.

Instead I chose to start the Specific Carbohydrate Diet (SCD) based on the
book written by Elaine Gottschall. One year later I have gained 15 pounds,
no longer have gas, bloating, heartburn, 2 *NORMAL* BM per day, and feel much
better (even after two surgeries).

My point is *diet does matter*. Personal testimonials mean a lot more than
bureaucratic research (funded by pharma's pushing more pills).

Please include this book in your list of IBD books and let CD/UC sufferers
decide for themselves (not decided by you) if it is worth doing. There's
an internet support mailing list of over 180 users with many testimonials
of this diet has helped many. And yes, it does not help everyone, but it
does help the majority of us. It's not a diet, it's a healthy lifestyle
change which helps to boost our immune system. I do not claim that it is
a cure, simply that it can allow permanent remission of all symptoms if
it is followed throughout life.

I welcome any comments.

Thanks...Dan Woods.

dwoods@ucalgary.ca
University of Calgary


> Dear Mr Woods,
>
> We work hard to improve our programs and therefore thank you for your
> e-mail. It is however, not clear whether your comments are meant to express
> the views of the University of Calgary or not.
>
> First, I am sorry to hear that you no longer support the CCFC. Our mission
> is to find a cure for ulcerative colitis and Crohn's disease. To realize
> this we are committed first and foremost, to raise increasing funds for
> medical research. The CCFC also believes that it is important to educate
> individuals with inflammatory bowel disease (IBD), their families and the
> general public about these diseases.
>
> You are mis-informed regarding our support of alernative approaches in
> medecine. Two years ago we launched "Innovations in IBD Research". This is
> a program that funds novel or innovative approaches to IBD research. This
> program was developed to stimulate and support studies that do not fall
> within the boudaries of traditional medical research. You might be
> interested to know that the first recipient of this grant is a University of
> Calgary scientist.
>
> We are quite aware of the recent trends in health care. Consumers are
> becoming increasingly knowledgable and more involved in the management of
> their diseases. More of them are conducting their own research into both
> mainstream and alternative therapies. Our member publication, The Journal,
> continues to cover emerging research and therapies (you'll be interested to
> note that a number of reviews and articles have appeared regarding Ms
> Gottschall's book). Our education events, hosted by volunteers and health
> professionals across the country also often feature talks on alternative
> therapy.
>
> We are disappointed that you find our "approaches to be pitiful and
> demeaning". We don't "try to pass judgement", we in fact work hard to
> provide as much information as we can. The reality is that we do not have
> medical staff and we don't want to do a disservice to members and others by
> providing "amateur" advice. We have made a conscious decision to focus a
> good portion of our efforts on fundraising for medical research in order to
> find a cure.
>
> I hope this clarifies any misunderstanding. If you or the University have
> any further concerns about our work, I hope you will bring them to our
> attention.
>
> Best wishes,
> Barbara
>
> Please help us increase awareness of the Foundation and IBD
> by telling a friend or colleague about our work!
>
> Barbara Victor
> Director of Communications
> Crohn's and Colitis Foundation of Canada
> 21 St Clair Avenue East, Suite 301
> Toronto, ON, M4T 1L9
>
> tel: (416) 920-5035 ext.21
> fax: (416) 929-0364
> e-mail: ccfcbv@netcom.ca


Date: Thu, 24 Dec 1998 21:48:39 -0400
From: Rachel Turet <rachel@longisland.com>
To: SCD-list@longisland.com
Subject: off topic - essay

Chronic Intestinal Illness

Does modern medicine have all the answers?

I was sitting on the cold steel examining table in a flimsy medical drape, more chilled by my thoughts and fears than the frigid atmosphere. In the next room, to which the door had been left carelessly open, I could hear the aloof doctor discuss stock quotes on the telephone, unaware and probably indifferent to the fact that with each passing second I was closer to running away, fleeing back to my cocoon of ignorance.

For close to a year now, an increasing amount of blood had been seeping from my bowels and I'd finally worked up the courage to hear the truth, certain I was dying of the big "C". Dr. Aloof finally remembered he had a patient and came in to do the humiliating, painful exam. I later learned that this exam need not have hurt and was more a reflection of his need to get back to his more important business. In any case, he saw no blood. In retrospect, I'm amazed at how easily I was able to translate this into irrefutable proof. A few words from this fool allowed me to disbelieve my own eyes. For those of you who have not heard the expression, "denial ain't just a river in Egypt."

A year later, I was admitted to the intensive care unit of the hospital. With tubes running from every orifice, with a positive diagnosis for ulcerative colitis and with a blood count at half of the norm, it was truth-time, there was nowhere left to hide. I had a disease which well might kill me or at best, spare my life, but leave me forever tied to a plastic bag substituting the function of my colon. Although Dr. Aloof had been replaced with Dr. Compassionate, it seemed that he had no new bag of tricks to deal with my illness. Modern science had not progressed from the dark ages in finding answers forulcerative colitis and the only known cure was amputation of the colon. My quest for answers was fruitless. I was to live on steroids until they could no longer stave off the inevitable. I researched hungrily for answers. I joined the Crohns/Colitis Association which sent me a little card to keep in my wallet, beseeching store owners to allow the carrier to use their bathrooms. So official, soooo demeaning.

Bloated by steroids, exhausted by the burden of living life from bathroom to bathroom, I was determined not to lie down and die. I worked, I played and I remained grateful for tolerant and loving family and friends who were able to abide each event and every conversation punctuated by multiple bathroom trips.

One day, a casual acquaintance mentioned hearing a woman on the radio who had written a book about a diet cure for ulcerative colitis. I thanked her graciously for thinking of me, and because she had taken the time to write it down, I took the name from her, but thought "my goodness, how naive?" Did someone actually think that a simple diet could cure this repulsive disease??? Every doctor I'd spoken to, every article I'd read, said that food had nothing to do with the condition and could in no way influence it, except maybe negatively. From my own experience I knew that a piece of fruit or vegetable turned to blood as it passed my digestive system. A few weeks later, I again saw this woman who wanted to know if I'd read the book. From my high perch of knowledge, I tried not to be annoyed at her kind caring, but after all, how could one possibly believe that if something so simple as food could fix this, omnipotent doctors wouldn't know about it?

As it happens, the third time this woman approached me, I wasn't feeling quite so high and mighty and actually went out and bought the book. Reading "Breaking the Vicious Cycle" by Elaine Gottschall, confirmed that I'd wasted both my time and money. Everything in it was contradictory to all that I knew. Each food listed, with the possible exception of home-made yogurt, would most certainly hospitalize me, and besides , I hated yogurt. Testimonials in the book jacket most certainly had to be fake or bought. I shared my disgust with my husband, spitting out angry words for this foolish author who would profit by offering false hope to a group of doomed, bleeding sufferers. He agreed that she must indeed be a charlatan, not that I left him much room for objection. Just as my tirade was winding down, the phone rang, fate calling, in the form of a cousin from another state. She sensed my agitation and asked if I was OK. Not quite done with my anger, I ranted some more, explaining it all to her. Hesitating, (I guess my disposition was intimidating) she told me of a friend with Crohns (a closely related disease), who'd been on what sounded like a similar diet. "Rachel, I don't know if it's the same diet, or if the gravity of your illness is the same" she said, "all I know is that she has almost died from it and she now considers herself to be cured." She then gave me the woman's name and number and from that moment, nothing would ever be the same.

That call was the very first in hundreds, made and received in a network of recovering or cured ex-sufferers (see testimonials) of what is collectively known as inflammatory bowel disease. The diet was everything it promised and the author, Elaine Gottschall, is a saint who was initially motivated into research in order to save her eight year old daughter's colon, which the doctors wanted to remove. She has since become a close personal friend and I will carry and spread her message 'til the day I die. The first helping of yogurt immediately soothed my diseased innards and began my short journey into complete remission. I have four symptom free years under my belt and a burning fury at a closed minded medical profession who will not look at a simple solution to a complicated disease. They point at lack of research data, while refusing to conduct a study.

I can't help thinking, "What if someone were to discover the cure for cancer or AIDS?" How would they muscle their way through the snake oil salesmen, to a forum upon which to be heard? How does one pierce the armor of calloused skepticism we all wear to shield us from years of exposure to those who would sell us lies and fabrications? There is more than one road, more than one truth, more than one cure. To put all of one's faith into the word of one doctor, who is at best merely human, can be truly foolhardy and naive. Each of us must bear responsibility for personal optimum health. Choices, including alternative medicine should at least be thoroughly researched and if plausible and not dangerous, should be considered. Most medical doctors won't supply such information. It is not a part of their education and in fact might be considered unethical, not to mention unprofitable, of them to promote these alternatives. Additionally, no matter how dedicated, no one doctor can prioritize the individual health issues of an entire practice full of patients; it is simply impossible. My own gullibility, in believing that doctors have all the answers to health issues, could have cost me my health, maybe even my life.

Elaine Gottschall, like the Odone family of "Lorenzo's Oil" fame are pioneers who refuse to accept the sentences passed on them by traditional medicine, and choose instead to research and find their own answers. As in Elaine's situation, Augusto and Michaela Odone, were determined parents who battled the medical establishment to save the life of their son who was diagnosed in 1985 with a rare disease called Adrenoleukodystrophy. It takes extraordinary courage to disregard conventional medical advise and explore alternatives, especially when a young child's welfare hangs in the balance. Thanks to the taking of personal risks and Elaine's steadfast stubbornness, I currently own my health and my future looks bright. Her disciples, which I am proud to be counted amongst, spread her message in any way we can. I started a web site which now has two hundred participants, growing larger every day. We share recipes, hope and common experience and ours is but a tiniest portion of the community of her followers. As we grow in numbers, I'm certain that this diet will eventually be the accepted course of treatment for inflammatory bowel disease, even if outside the medical community. Penicillin was once only mold, the world was once considered flat and until four years ago, I believed that food had nothing to do with ulcerative colitis;......live and learn.

Rachel Turet


Date: Fri, 25 Dec 1998 11:44:37 -0800
From: mpetee <mpetee@nas.com>
To: SCD-list@longisland.com
Subject: Re: off topic - essay

Rachel Turet wrote:

> Chronic Intestinal Illness
>
> Does modern medicine have all the answers?

Maybe Im just a pessimist but why would doctors especially specialist want to find a cure? The is more money in repeat bussiness (maintenance) than a total cure.


Date: Tue, 29 Dec 1998 10:01:08 -0500
From: Christine Brennen-Leigh <cbleigh@biztechinc.com>
To: SCD-list@longisland.com
Subject: Rachel's Essay

Rachel:
Your essay was incredible! I am printing it off and am going to save it. I may even give it to my mother's doctor to read.

It is hard for her, someone who has always believed in whatever a doctor tells you to go against him and follow this diet. She keeps wavering every time this "God" tells her that the diet is stupid and she needs to eat bread and sugar and drink milkshakes to gain some weight or she will end up in the hospital again. Each time she speaks with him or one of the dieticians he sends to her she says that they say you CAN eat this or that. Or maybe I should TRY this and see if I can eat it. I keep telling her that this diet has been refined since the 60's and to look at all the people it has helped, who believe in it. Then I tell her that in the spring they were ready to take out her diseased colon and just weeks ago while in surgery for a twisted section of bowel, the surgeon said that the area where her Crohns was looked not too bad, so whatever she was doing was helping.

I don't personally have UC or Crohn's but I do have another autoimmune disorder called Interstitial Cystitis. In some ways it is like Crohns, but affects the bladder. Five years of seeing doctors, having painful tests and procedures left me with three choices. To continue taking useless drugs, go for installations where they pump chemicals into your bladder (where you hold them for 20 min. and then expel them) or live with it. I chose none of them. I looked, I researched and I discovered alternative approaches and in 1995, discovered a wonderful natural health care practitioner. Today, I have my odd little flare, but I have my life back. And 95% of the time, I am symptom free. There was a time in the early 90's that I could barely make it through the day.

I can't wait to receive my copy of Elaine's tape. Maybe if Mom actually sees her talk she will give herself over 100%.

Christine

PS, how do I contact Elaine? I would like to talk to her about my mom, but I don't want to bother her with a telephone call. Could someone send me her fax number? Thanks. C.


Date: Tue, 29 Dec 1998 10:33:39 -0400
From: Rachel Turet <rachel@longisland.com>
To: SCD-list@longisland.com
Subject: Re: Rachel's Essay

Dear Christine,
Most people have a problem with the concept that "Dr's simply dont' have all the answers" I get a lot of calls about the diet and this is the biggest hurdle people have to overecome in order to try it ("but the DOCTOR said.."). I read my essay in front of the class, and out of the corner of my eye saw a young man's eyes open wide. I was not surprised when he approached me after class with questions. His 8 year old niece has crohns. I've spoken to the childs father and probably the main reason that he will try it for his daughter is that like yourself, he found out that Drs dont always know. He himself had suffered for years with allergies, had bad reactions to meds, found an alternative, natural course and hasn't suffered since. Doctor's self-appointed godlike posturing has made our work more difficult, but far from impossible. Keep plugging with your Mom, she's in my thoughts and prayers.
Love, Rachel



You can reach Elaine Gottschall at:

Hm: (905) 349-3443
Fx: (905) 349-3420




Date: Thu, 31 Dec 1998 13:52:11 -0500
From: "david emerson" <efurnitr@tiac.net>
To: <SCD-list@longisland.com>
Subject: getting the docs to LISTEN

Having read Rachel's essay, and having been raving mad at many times in the past six months, a potential light bulb went on last night.

It sometimes infuriates me to be told I'm going about this all wrong by my doctors. They won't even LOOK at the book. "There is no research to support this theory." We all know the story - I'll try not to rant. (One last comment before going on - my doc once put me on Asacol saying "There was one study done which showed that this MIGHT help prolong a remission after surgery." That doesn't sound like astounding research evidence to me!!!! This was after I'd had surgery because "She's already here in the hospital, and it's summer, so we might as well get it done now on the chance that it might prevent having to miss a semester of school." What a GREAT reason to have surgery. To bad I didn't know better at the time!!)

But, while that wasn't very positive, it DOES bring me to my point - the HEALTH INSURANCE COMPANIES are the ones who paid for that $20,000 bill plusall the medications and Dr appointments.

Would it not make sense that while doctors and phamaceutical companies stand to gain nothing by researching this diet, health insurance companiesstand to gain a major financial savings!!! Has anyone ever pursued a major letter writing campaign to these companies? I wonder if we could put together a well written, convincing cover letter and send it with a large stack of our personal stories to many of these companies. It could make our point, and I wonder if we could garner enough support to actually get some publicity and credibility??!!!

I am sending a copy of this, with a cover letter introducing myself, to Elaine. Maybe I'm just new and naive about the scale of the struggle, but we have to start somewhere. I would be willing to play a major role in organizing such a campaign if others think it might be productive. I guess we'd need an idea of what exactly we're asking for, however, just publicity would be a good place to start.

LET ME KNOW WHAT YOU THINK!!!!

Thanks, Nancy


Date: Thu, 31 Dec 1998 16:30:26 -0400
From: Rachel Turet <rachel@longisland.com>
To: SCD-list@longisland.com
Subject: Re: getting the docs to LISTEN

Dear Nancy,
You know how sometimes, you have to see something several times before it hits. Well, the idea of contacting insurance companies with our struggle is not a new one, but the question for me has always been "what is it that we would be asking them for?" After reading your letter, and for the first time, I KNOW. Since the diet can't require payments for simply eating well and healthy, we cant't ask them for reimbursement for food, however, what if we were to approach them from a place something like this...
Gastrointestinal disease must cost billions in insurance payments. There has been a diet circulating for years that has a high rate of success for those on it in aleviating symptoms that usually require medical treatment, prescription drugs and surgery. The medical establishment and the crohns/colitis foundations refuse to consider promoting the use of this diet, based on lack of research, while refusing to fund any. It would seem in the best interest of insurance companys to initiate such research. Your profit margin could prove staggering.... yada yada yada Talking to their pocket books could prove fruitful where trying to raise their social concience would probably fail.
Whaddaya think?? We could back up our pitch with tons of testimonials. OOHHH I'm getting excited here. Guys, talk to me.
Rachel


Date: Fri, 01 Jan 1999 08:06:59 -0500
From: Ruth Callahan <callahan@webspan.net>
To: SCD-list@longisland.com
Subject: Re: getting people with IBD to LISTEN

Happy 1999 everyone!

How about working on getting the general public with IBD to listen that diet changes can work!

My doctor who is a traditional gastroenterologist is supportive of this diet. He thinks SCD works because of my careful dedication to changing all my eating habits Personally he also chooses to eat a protein and vegetable based diet sohe understands what I'm doing. Anyhow, He mentioned that most of his patients are unwilling to drastically change the way they eat. When he mentions eating differently to people most won't even change a little bit to feel better immediately. They want a prescription tomake the pain go away.

Remember we live in a culture of expecting doctors to fix our problems with medicine and surgery. Being told to eat scrabbled eggs and chicken soup for aweek is radical. North Americans Cultural perceptions of how we heal is slowly changing, but it still has a long way to go.

Like Deanna I'm also involved in the alternative birthing community and that has been a long painful struggle to educate both the public and the medicalsystem. Consumers need to demand changes before institutions believe they can loose money (patients) by not changing.

Change is always motivated by consumer demand. Don't stop taking to your gastro about the diet and how it's working for you.

Ruth (uc)
New York, New York


Date: Mon, 11 Jan 1999 08:07:13 -0800
From: "Benke, Anna" <BenkeA@pac.dfo-mpo.gc.ca>
To: <SCD-list@longisland.com>
Subject: Shira

Dear Shira,
When I first came down with Crohn's 3 years or so ago, I almost died of dehydration at home and ended up in hospital for a month on IVs. I didn't eat anything for 3 weeks of that time. My neighbor brought me the book BTVC, while I was still in hospital. It looked interesting, but I knew nothing about this disease, so I showed it to my Gastroenterologist in the hospital. When I handed it to him and asked if he heard of it, etc, he opened it up to the front page with the disclaimer, and read it aloud to me. He then closed the book handed it back to me and said that diet has no effect on this disease and that I should eat anything I wanted and as much food as I could. He said there should be no reasons of any kind for restrictions. He wanted me to start eating and gaining weight back. I listened to him, and started eating everything. It didn't make me feel any better. The IV cortisone and the oral prednisone to follow masked most of the symptoms of the CD, but I was not healing. I decided at this point, to give the SCD a try. I started it, but I did not follow it properly. It was a half hearted effort, as I was constantly cheating here and there, which with this diet spells failure. After several months, I was unable to be weaned off the steroids because each time my doc tried to lower the dosage gradually, the symptoms would be back with a vengeance. Then the dosage would have to be increased even more than before, just to keep the disease at bay. I went off the SCD because I thought it wasn't going to work, and it was easy to come to this conclusion, given that by eating all the crap I could get my hands on instead, I was following doctors orders. I gained 80 lbs in 8 months. I felt miserable and out of control on the medication. Over these months I had tried every alternative treatment out there. I saw numerous Naturopaths, etc, but none of the supplements, treatments, extensive allergy tests or special diets they prescribed helped at all. Finally, I said to myself, I will do anything to get off this medication and get my health back, so I decided to try the SCD one more time, and this time religiously and carefully. As a result, I was able to get off the Prednisone in a few months and I felt better than ever. I know the diet worked for me, because the way I was going, I wasn't going to get better on my own out of the blue. I found a new Gastroenterologist who was not so adamently against the diet, and he has never put me on Prednisone ever since. I have been on and off the SCD ever since, and it always induces remission for me in 1 month or less. I have been able to avoid medication for the past year and a half.

My advice to you: ignore all MDs, Dieticians, or Nutritionists advice concerning diet. They don't know anything about the subject that can help us. Continue on the medication prescribed, as Elaine says in the book. The dr. will ultimately wean you off it when you start to get better from the diet. Try the SCD again, and do it gradually and carefully. Don't worry that you went off while in hospital. It's no big deal. I have gone off it numerous times, but always end up back on it, because it makes me feel so much better. I have more energy than I know what to do with when I am on this diet. If you don't feel better within a month on the diet, then you can return to eating everything. The SCD won't hurt you, and for all your doctor knows, that IS the way you would normally be eating in the first place. They tell us to eat whatever we want, so they shouldn't care if we eat the SCD foods instead of junk. Realize that you don't need a doctor's approval to try this diet. If I had ignored my dr. from day one, and went on the diet strictly in the beginning, I could have avoided a lot of pain and suffering over the months I was dependant on Prednisone. There is a lot of support on this list, so hang in there, and you'll feel better in no time. I'm going to forward another message that has tips for beginning on the diet. I have forwarded it to several others, who found it to be helpful, so I hope you do also.
Take care, Anna


Date: Tue, 12 Jan 1999 14:15:39 -0600
From: porter@sprint.ca
To: <SCD-list@longisland.com>, <Ruca908@aol.com>
Subject: Ignorant Doctors (was Shira)

A wholehearted second to this post. Thanks for taking the time to share. If diet doesn't matter, than what does it matter if we try it? So many medical people are frightened by the unknown. You know why? Doctors receive about one day (or was it week, I forget) of nutritional training in medical school. They lack the knowledge and confidence in this area, attributing any kind of deviant from standard American diet (SAD) to "quackery."

Michelle
CD


Date: Tue, 12 Jan 1999 15:57:37 -0500
From: Nancy Emerson <nemerson@newfound.k12.nh.us>
To: SCD-list@longisland.com
Subject: Doctors and LIFE!!

This message was originally composed with a rant about doctors in this beginning spot. However, I'll replace it with the statement that I refuse to see mine anymore (I do have an appointment with a new one two hours away in two months). The old one told me too much BS.

BUT:
Without any doctors I have gained five pounds, reduced all my symptoms and feel great!! I haven't had a bad day for weeks now!! When I get diarrhea it lasts an hour or so, instead of days!!

Can I find anything more to put exclamation points after?

How about: Hello world, I'm back!! Another 20 pounds and ALL of me will be back!!!

Okay, enough already. I might overload the system with glee...
I'm signed on, and if I never go off the SCD I dont' care!

And I'm going skiing this weekend, it snowed today in NH and life couldn't be better.

Keep writing to this site folks - we are not only saving our own lives, we are saving each others' lives in many ways.

After all, we MUST do it, because the doctors might prevent us from truly dieing, but they will never give us our real lives back for the living!!

Nancy


Date: Tue, 12 Jan 1999 19:02:10 -0800
From: James & Cathy Yokota <james.yokota@cwix.com>
To: SCD-list@longisland.com
Subject: Re: Ignorant Doctors (was Shira)

Agreed. Another point is, if thoracic surgeons always tell patients with heart problems that they need to change their diets in order to lower their cholesterol levels, how come gastrointerologists never mention the SCD to patients with chrons and colitis? The medical community should know about the SCD by now. If they don't, they are seriously out of touch with reality.

Cathy


Date: Thu, 18 Feb 1999 15:37:10 -0700
From: "Michael Windrim" <windrim@cadvision.com>
To: <SCD-list@longisland.com>
Subject: RE: GI Doctors review

Lucy:

We all have to remember that even GI docs only have two weeks of dietary training in their whole education. They are also (partly because of popular demand) far more likely to put us on "magic bullet" medicines than to have us change our diets or lifestyles. They are also slaves to the scientific method. It is how they work and let's face it - not much research has been done. No large organization will donate grants if there is not some hope of financial reward in the end. Well, eating good food will only pay off for organic growers and they are not well known for their cash donations to food research.

It will take the effort of people like us and well informed, open minded doctors to move this to the next level - but it may take time. Just like the healing.

Michael Windrim

Date: Sun, 07 Mar 1999 02:30:26 -0800
From: Deborah Idol <cat@cloud9.net>
To: SCD-list@longisland.com
Subject: Re: success

Hi Paula,

> I had a hard time convincing my son's doctor that sulfasalazine might help
> more than Asacol. He gave me all the reasons that it is less efficacious
> than Asacol. Any info regarding the use of sulfasalazine with UC is
> greatly
> appreciated.

I have never taken sulfasalazine, as I'm allergic to sulfa drugs; so I can't help you here, I'm afraid. However, as Elaine thinks this is the best drug to try when the diet isn't enough yet, I would find a doctor who is willing to prescribe it.

> Also, I would love to hear from UC patients who have found the diet is
> really helpful beyond the first six months. I would especially love to
> hear
> some success stories, having spent an hour on the phone with a gastro,
> however well-meaning.

When I have the money to buy decent quality meat, and am not getting food poisoning constantly, and when I have the money for all the supplements I need, I do pretty well (especially when I drink red wine every day). Even without those things I have gone from
- being one day away from death (when I was put in the hospital and couldn't even hold down a cup of tea)
- being on a massive dose of prednisone (I am still suffering from side effects from all the prednisone I have taken, so I hate to think of anyone taking this drug, especially a young person)
- being in unbearable pain almost all the time
- having the eminent Dr. Henry Janowitz telling me I should accept the fact that I would be very sick for the rest of my life, would have to take immunosuppressants forever, and eventually have to have surgery to being medicine free and staying out of the hospital.

If I had taken Dr. Janowitz's advice and kept eating the white flour, white rice, white pasta (not that whole wheat would have helped ;-) ) and sugary things he suggested should make up my diet, my life would have gone from unbearable to worse.

The SCD is not a *complete* solution for everyone, as we usually have so many deficiencies, both from the diseases and from drugs we've taken for them, that we need supplementation, often with mega doses (preferably by injection) until our absorption is improved. We also need to get rid of whatever parasites we might still have, and make sure that we are *very* careful about the freshness of the meat we eat. It would also be a good idea to find a source for human micro flora, as these bacteria apparently colonize the gut, unlike those in our yogurt or most probiotic supplements which do not tend to last as long.

Often, it's very difficult for young people to fanatically adhere to the diet and they may succumb to flares after eating a forbidden taste of something outside the home. But this diet does work miracles and certainly there is no hope of anything resembling quality of life for any of us if we don't stick to it! Getting right back on the diet after having "cheated" is necessary, and often extra vitamin supplements will help hasten healing. Most people do go off and cheat here and there a number of times before they finally realize it's counterproductive and not worth it no matter what.

Any GI doctor who recommended the SCD, vitamins and herbs to get rid of parasites would soon find his/her practice had dwindled to almost nothing. There would be very little need for the specialty any more, and almost all of them would have to find another field. If I'd listened to Dr. Janowitz, I'd still be going to him regularly, in and out of the hospital, and would be one of his many cash cows. I haven't seen any doctor for UC since I heard Elaine Gottschall plugging her book on Dr. Hoffman's radio show. That was over four years ago.

Take care,

Deborah

Date: Thu, 11 Mar 1999 12:51:51 -0500
From: mwgdsg@juno.com
To: SCD-list@longisland.com
Subject: Re: Dr. Mark Peppercorn

Nancy -

On Wed, 10 Mar 1999 11:18:23 -0500 Nancy Emerson
<nemerson@newfound.k12.nh.us> writes:
>I'm thinking about donating a copy of BTVC to my local doc -
>it seems worth the price of the book in case it helps someone.

When I first got on the diet & immediatly felt better, I was all excited & planned to buy books for my primary care & Gastro DRs. In my excitement, I wrote to Elaine & told her my plan. She wrote back :

"All gastroenterolagests know about this book - whatever you do, don't waste your money and buy them a book. One of our Canadian doctors must have over 20 books because every time a patient gets better, tells him/her, he says he never heard of it & he is given a book! THEY ARE NOT ALLOWED TO TELL YOU ABOUT. Either the drug companies and/or The National Institutes of Health forbids them! So what do we have - suffering & more suffering."

I really don't think my Drs had ever heard of SCD, but after getting this note from Elaine, I told them about it & figured if they were really interested, they would buy their own copy. Neither showed a whole lot of interest. I have printed out several success stories & given them to my gastro. He says he reads them, but they stay in my file, so who knows?

Diane
Florida

Date: Wed, 14 Apr 1999 10:41:38 -0400
From: Geoff McCombe <700836@ican.net>
To: SCD-list@longisland.com
Subject: Re: GI appointment

>
>Sounds like the makings of a great book title: "GIs Are From Mars,
>SCD-ers Are From Venus." Imagine the possibilities: first a book...
>then more books... and tapes... and an infomercial... LOL!
>
>--
>Deanna
>
>

Hey, I think you've got something there!!!!

You've got to laugh thought - it's the only thing that keeps you sane.
But, I think that might be good psychology - from now on all "GI's" are called "MARTIANS".
It's that old ploy - if you have to give a speech - imagine everyone sitting there in their underware!!!
Everytime you see your GI imagine him sitting there with antennae poking out of his head!!!

Cheers, Irene

(I have to get off this internet, I am still stitting here in my pyjamas, it's becoming an addiction for me).

Date: Thu, 15 Apr 1999 14:25:21 -0600 (CST)
From: mbc sales <mbc.sales@sk.sympatico.ca>
To: SCD-list@longisland.com
Subject: Martians!@#*

You people are too funny! And actually I can easily visualize my EX-MARTIAN with an antenna sticking out of his head!! Although since our recent falling out (due to his pig headed attitude about getting me well, going on the diet, instead of lining his pockets) I would have liked to have stuck his antenna elsewhere!!!!@$#
Maybe their lack of open-mindedness is due in part to their antennas? Loose connection? Causing Brain Failure?
And the remark about Martians are from Mars, SCDers are from Venus. Brilliant! What a wonderful break from the usual daily stuff, Aaaah, I love laughter...thank you all.

Whitney


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