What about lactose/sucrose? (was: RE: Re: question for those who have been on SCD for a long time

[Guest guest]

Thanks much for this, AJ. I have Crohn’s (have had since the

early 1980s) and I find it all fascinating. And interesting. The more I can

learn about Crohn’s the better. I’ve read Lutz’s Life Without Bread, which

I’ve also found very helpful, and which keeps me from being anal retentive

about SCD, though I’m not generally the anal retentive type anyway; at least I

haven’t been in the past, having Crohn’s and all (sorry!).

Personally, I would very much like to hear more about the

lactose/sucrose (disaccharide) part of the story that you by-passed, especially

since lactose has been a real problem for me, and for many here.

I’ve been on the diet three months and have improved a lot, but

still have an ongoing but generally mild ache in my right side (the site of the

disease and my past surgeries, two of them). My blood work is normal, except for

somewhat low protein levels. But obviously my disease is still active in some

way.

Please keep posting here.

n

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of dietscd

Sent: Friday, May 01, 2009 4:14 PM

To: BTVC-SCD

Subject: Re: question for those who have been on SCD for a

long time

Howdy. I've been part of the list that has been mentioned elsewhere, but have

avoided the Yahoo! group as (quite frankly) I have a lot to say about things,

and when I get a lot of email, I tend to spend too much time replying to that

email, and this group is pretty busy.

So, I apologize for neglecting y'all, but I'm just so busy.

The tragedy of Ebringer's work is that Elaine was still alive when he was

actively publishing all this work, from the mid-1980s on forward. Worse,

Ebringer is a rheumatologist, and his work has been published in rheumatology

circles; it is now generally accepted that Klebsiella pneumoniae (Kp) has a lot

to do with ankylosing spondylitis. Ebringer has made clear inroads in terms of

implicating Kp as a cause of Crohn's and ulcerative colitis, but this work is

not as well-accepted for several reasons.

Here's the theory in a nutshell. Stick with me.

Klebsiella pneumoniae is an opportunistic pathogen, known to cause pneumonia

(as its name implies), and is also the second-leading cause of Gram-negative

sepsis ( " blood infections " ). This becomes important later. In its

role in ankylosing spondylitis (AS), Crohn's disease (CD), and ulcerative

colitis (UC), it is NOT a pathogen, and is not even an infection. It is a

commensal organism- one of several hundred critters swimming around in your

gut, performing all sorts of obscene biological things while making your

intestines its home. For the majority of individuals, it is harmless (provided

it doesn't get into your lungs or your bloodstream- same as many otherwise

harmless bacteria).

However, Kp has one trait that causes it to be less-than-endearing: it eats

starch. This alone isn't a problem- but the *way* it eats starch is a problem.

In order to break down complex starch- amylopectin starch (which is depicted in

BTVC- Elaine knew it was part of the problem, but didn't know it was THE

problem) is attacked by Kp using an enzyme- a " de-branching " enzyme.

Think of de-branching enzymes as a pair of hedge shears, lopping off branches.

These " branches " consist of short chains of glucose molecules, which

Kp then consumes. It's like a digestive enzyme for bacteria.

Unfortunately, there's a little amino acid sequence in this enzyme (which is

called pulullanase) called QTDRED. That's the amino acids: Q-T-D-R-E-D, which

means a glutamine connected to a threonine connected to aspartate, then

arginine, and glutamate, and another aspartate.

This same sequence appears in certain types of human collagen (there are

20-some types of collagen). So- somehow the human immune system becomes

sensitized to this bacterial protein. If the body forms antibodies to QTDRED,

then it'll attack pulullanase- which is pretty futile, as pulullanase isn't

attacking the body. It's floating around in your intestines, produced by the

klebsiella. Unfortunately, these antibodies will also attack things that look

just like it, which includes the QTDRED sequence in your collagen.

If the individual is HLA-B27 positive, the attack tends to be on the collagen

of the spine. If HLA-B27 negative, the attack tends to be on the collagen of

the intestines.

Meanwhile, the human continues to consume starch, feeding the klebsiella, which

then produces more pulullanase- to which the body responds by cranking out more

antibodies. With more antibodies comes more autoimmune attack of the

intestines, and more ulcers. With more ulcers comes more mixing of the

bacterial proteins with the immune system. You can see where this is going.

This is why the Gottschall diet works: it eliminates amylopectin starch from

the diet. Stop feeding the klebsiella, and it has no reason to produce the

enzyme to break down starch. In fact, in order to grow Kp from my own gut, I

had to start eating large quantities of cashews and peanuts- which have

" slow " starch in them, which is amylopectin wedged into a waxy

matrix. If I eat more cashews, almonds, and peanuts, my stool gets loose and I

can culture Kp. If I do not, the bacteria don't show up.

This is why antibiotics like Flagyl (metronidazole) and Cipro (ciprofloxacin)

work. Klebsiella are EXTREMELY antibiotic resistant, so trying to knock them

out with this or the Borody protocol (the " triple antibiotic cocktail "

that must be taken for years) work poorly, and why other antibiotics don't work

at all.

This is why steroids work without causing the disease to run rampant. If it

were a true infection like Mycobacterium avium ssp. paratuberculosis (as some

have hypothesized), then taking steroids would be a very messy end for the

host. Along with immunosuppressants, the immune system would take a vacation,

the organism would overwhelm the host, and the host would probably die. In this

case, Kp is not pathogenic.

This explains why tumor necrosis factor alpha (TNF-alpha) inhibitors, like

Humira and Remicade work. The entire class of drugs was invented to combat

Gram-negative sepsis. As I started out (some paragraphs above), klebsiella is

the second-leading cause of Gram-negative sepsis in humans.

The klebsiella theory also explains why anti-inflammatories work. It also

explains why NSAIDs are contraindicated: NSAIDs are known to create tiny little

holes in the gastrointestinal tract, which is presumably one reason why they

combat heart disease (by slowly bleeding the patient, making them lose iron-

which is known to prevent heart attacks). These tiny little holes cause the

immune system to mix with bacterial proteins, and- whammo. Flares.

This explains why endoscopy is frequently followed by a flare: that fiberoptic

snake wends its way through the intestines, causing small scrapes- allowing the

bacterial proteins from klebsiella to mix with the immune system.

Now, don't get me wrong; there's a BIT more to it than just starch once the

individual gets sick. Disaccharides (lactose and sucrose, mainly) complicate

the situation. But this is already far too long, so I'll leave that bit out.

As for me- I've been on the Gottschall diet for 16+ months, and off my meds for

over 15 months. I was diagnosed 16 months ago, in fact, and only on the drugs

for 2-3 weeks. As it stands, my blood values are ALL NORMAL; that took a long

time. 6 months ago, only two values were out of whack: my blood glucose was 2

points LOWER than norms (which is harmless), and my red cell distribution width

(from my folate-deficient megaloblastic anemia) was 15.1 (norms 13.0 to 15.0,

down from 16- or 17-something just 3-4 months earlier). I am back to normal-

normal weight, normal exercising, normal stool, you name it.

But it took a very long time, and strict adherence to the Gottschall diet. My

doctor is not a believer, and thinks my intestines are surely plotting against

me; he insists on endoscopy, and I talked him down to capsule endoscopy since I

don't want that fiber-optic snake dinging up my nice-and-intact intestinal

mucosa.

As for me- to date, I have been unable (despite running many experiments) to

find antibodies against Kp in my own blood serum. This is discouraging, but it

is possible I am not performing the tests correctly. The refereed literature is

full of work by Ebringer and others, implicating klebsiella.

These theories are not well-accepted (indeed, they're hardly known at all)

within gastroenterological circles. Instead, they offer us antibiotics,

steroids, immunomodulators, TNF inhibitors- all drugs with serious side

effects, including cancer and death- and inform us that surely a diet cannot

possibly work, and may even be dangerous. Would that they were to make us read

the black box warning on a shot of Humira or Remicade, I doubt many folks would

go through with it.

It's very simple: the industrialization of America and the rest of the world

has led to the proliferation of white, bleached wheat, in gignormous

quantities. Starch from corn, potatoes, wheat and its brethren now constitute

an unnaturally large proportion of the diet. Diseases like Crohn's were unknown

before white flour, and didn't appear on other continents until well after they

landed on their shores.

Today, I can consume rice, pinto beans, and small amounts of processed corn

with no pain. The same is not true of wheat. Wheat starch has something special

about it- probably the lectins that come with it- that inspires pain and

discomfort, while other forms of starch do not.

I don't have all the answers about precisely what causes this disease, and I'm

sure there are many trails to the same destination. But Elaine was absolutely

spot-on about this disease. The other genius is Dr. Wolfgang Lutz ( " Life

Without Bread " ). His very simple rule- no more than 72 grams/day of

carbohydrates- is elegant and (in my humble opinion) an excellent alternative

to follow for those who are too busy or travel too much. In fact, if that 72

grams/day is restricted such that none of those calories come from " The

Celiac Four " (barley, rye, oats, or wheat- the BROW proteins), I suspect

the Lutz management scheme would be greatly amplified in its efficacy.

The Lutz rule is one reason why I try not to become neurotic about tiny traces

of starch or sugar in any foods I consume. Yes, my chicken seasoning has

malto-dextrin in it. I still eat it. My salt may have some trace of dextrose

added as a flowing agent. It's not going to make me ill. Your mileage may vary,

but the one thing I cannot seem to stress enough is not to become orthorexic

because of the SCD: don't become afraid of food.

For all this is holy, EAT RICHLY. Steak! Eggs! Sausage! Bacon! Full-fat yogurt!

Have some more cheese, some SCD-safe custard with LOTS of eggs and butter.

Don't be scared by butter and fat and protein. Carbohydrates are what made you

ill- the USDA food pyramid is upside down, jamming our guts with 50-55-60% of

our calories from carbohydrates- it's obscene and WRONG. I had no idea how

wrong-headed this was until reading " Good Calories, Bad Calories " by

Taubes: 608 pages, including 140 pages of notes. It will hurt your mind

and damage your furniture as you will want to hurl this book at a wall every

2-3 pages when you realize how absolutely WRONG the " war on fat " has

been.

Please don't starve yourself on the SCD. It doesn't have to be a breakdown over

there being " nothing to eat. " It needs to be a shift from pasta and

wheat and ice cream and cookies, yes- and supermarkets cater primarily to the

wheat-rice-potatoes-high fructose corn syrup market, yes- but they still have

food you can eat!

I'm 5'11 " (probably 5'10, but I'm sticking with 5'11 " ), male, and I

weighed 139 pounds when diagnosed on 19 December, 2007, having steadily lost a

pound a week since June of that year. Nothing abated my weight loss. Within two

months, my bleeding had stopped, and within three months I was UP 13 pounds.

I'm now 159-ish, which is exactly where I want to be. (As a caver, I don't want

extra weight!)

I have a lot more to say, but most of you are probably on your second cup of

coffee by now.

This rant has been brought to you by AJ. Additional rants are available on

tape, 8-track cassette, and stone tablets for $19.95.

-AJ

> >

> > How did you arrive at the conclusion that it was KP that was the

> > troublemaker?

>

> I can't say I have any clinical evidence to prove it in my case but

> I've read quite a bit of Ebringer et al's work about Kp and the theory

> seems to hang together. If it isn't Kp it's something similar...or

> it's something else entirely that behaves exactly as the theory

> speculates :-)

>

> --

> Cheers,

> DF in MA

> UC June '07

> SCD Nov '08

>

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