Re: Re: I&#039;m officially casein- and gluten-intolerant

Weston A. Price Foundation Chapter Leader, Mid Coast Maine

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

“The diet-heart idea (the idea that saturated fats and cholesterol cause

heart disease) is the greatest scientific deception of our times.” --

Mann, MD, former Professor of Medicine and Biochemistry at Vanderbilt

University, Tennessee; heart disease researcher.

The International Network of Cholesterol Skeptics

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

June 28, 2005

>It was the Transglutaminase number that the enterolab rep told me suggested

>I'd only been gluten sensitive for a few years cuz it's somewhat low. He

>said, in time it would increase if I continued eating gluten. Apparently,

>this cannot be applied to antigliadin IgA though.

I left out an important point! The Enterolab rep thought I've only been

gluten sensitive for about 2 years based on my antitissue Transglutaminase

score. That fits right within the timeframe that I was thinking of due to my

symptoms, which started with candida and loose stools about 3 years ago and

and ended with bloat about a year ago.

Suze Fisher

Lapdog Design, Inc.

Web Design & Development

Weston A. Price Foundation Chapter Leader, Mid Coast Maine

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

“The diet-heart idea (the idea that saturated fats and cholesterol cause

heart disease) is the greatest scientific deception of our times.” --

Mann, MD, former Professor of Medicine and Biochemistry at Vanderbilt

University, Tennessee; heart disease researcher.

The International Network of Cholesterol Skeptics

http://www.foodsci.uoguelph.ca/dairyedu/chem.html#protein3

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

June 28, 2005

>>>>>>>>I took that test, too, and it came back positive for both gluten and

casein intolerance. I'm in complete denial about the casein

intolerance and have been scarfing down the cream, cream, cream.

lisa>>>>>>>>>>>>

Hi ,

When you scarf down all that cream and so on, do you have symptoms? If you

have no symptoms then, take it from me, you'd better be ULTRA careful about

messing around with these things. I mean, of course, you shouldn't eat

anything that you're allergic too. Period. But maybe you don't know how

serious the consequences are.

I was diagnosed with true celiac disease by means of a blood test and then a

biopsy only about a month ago. I'm 53 and only heard about gluten a couple

months ago on this board from Heidi. Coincidently I found a new

gastroenterologist who insisted I have the celiac gene test. I told the

doctor, " but I have no symptoms! " and he said that was usually the case

among people with the traditional full-blown celiac disease: we feel

absolutely no symptoms and so we go ahead and eat whatever we want.. Now I'm

53 and my doctor gave me a diagnosis of Refractory Celiac Disease because,

even though I've stopped gluten for a year, my intestinal tissue, the ones

he took from the biopsy, are still very messed up - I have no villi -- and

indicate ongoing damage despite being gluten-free. So tomorrow I get to have

a ct scan to check for intestinal lymphoma because small intestinal cancer

becomes increasingly common the longer you go without a diagnosis and/or

continue to ingest gluten (and casein.)

If you're younger you can just stop the gluten/casein and your body will

repair itself right away. Do it! The younger you are when you stop the

gluten/casein the better chance you have of leading a healthy long life. I

only wish I'd known about all this back then and so that's why I have to

pass it along.

Please be careful.

~Robin

June 28, 2005

> Re: I'm officially casein- and gluten-intolerant

>

>On 6/28/05, Suze Fisher <s.fisher22@...> wrote:

>

>> Nonetheless, as I understand it, the reaction is to a particular

>> amino-acid sequence in casein which should not be affected by

>> pasteurization.

>

>The amino acid sequence wouldn't be, but the digestibility very well

>could be, and an immune reaction could only take place if the amino

>acid sequence is *undigested*.

Right.

>

>> At least that's the conventional wisdom and may be true.

>

>You mean it's the conventional wisdom that pasteurization doesn't

>change amino acid sequence, or it's the primary wisdom that it follows

>from that that pasteurization wouldn't be a factor in immune reaction?

The former. Although it seems the latter would flow from that.

>

>> I do know that casein is a very flexible protein and alters

>shape depending

>> on

>> pH but I don't think it alters it's amino acid sequence.

>

>All proteins change shape according to pH, but how is that related to

>pasteurization?

It's not to my knowledge. I didn't mean to indicate it was, I was just

mentioning another factor for consideration. Although it IS possible that

heat changes the micelle cluster in some way. Casein apparently exists

primarily in large micelle clusters. This site mentions something about heat

and acidity affecting equilibria between the micelle and the milk serum. I

do not know if that has any effect on peptide exposure though. Note also it

looks like there are peptide strands hanging off the micelle in the bottom

figure.

Additionally, from what I understand, casein is *unusually* flexible - the

stuff I've read said it acts differently than most other proteins due to

it's unusual degree of flexibility. But again I don't know if this in any

way affects it's digestibility or amino acid sequences.

>

>I would guess that the pastuerization causes sulfer atoms on

>neighboring amino acid strands within the casein protein to form

>disulfide bridges, which could affect the ability of enzymes to gain

>access to certain portions that are supposed to be hydrolized, and in

>that way liken the chance that an undigested problematic strand would

>be available for an immune reaction further down along the way.

Could be.

Suze Fisher

Lapdog Design, Inc.

Web Design & Development

Weston A. Price Foundation Chapter Leader, Mid Coast Maine

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

“The diet-heart idea (the idea that saturated fats and cholesterol cause

heart disease) is the greatest scientific deception of our times.” --

Mann, MD, former Professor of Medicine and Biochemistry at Vanderbilt

University, Tennessee; heart disease researcher.

The International Network of Cholesterol Skeptics

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

June 29, 2005

> Re: I'm officially casein- and gluten-intolerant

>

>>>I left out an important point! The Enterolab rep thought I've only

>> >>been gluten sensitive for about 2 years based on my antitissue

>>> Transglutaminase score. That fits right within the timeframe that

>> >>I was thinking of due to my symptoms, which started with candida

>>> and loose stools about 3 years ago and ended with bloat about a

>>> year ago.

>>> Suze Fisher

>

>Hi Suze, Just wondering what you think about this: My

>gastroenterologist thought that the real problems for celiac start

>when your body has sustained some " insult " . In my case he said he

>thinks it was a virus that may have really set it off. (He thinks a

>virus was behind the Lake Tahoe CFS outbreak in 1986 that I was

>sorely infected with. They called it Epstein-Barr back then..) He

>said he thinks celiac is " the great mimic " and that is why it is so

>often underdiagnosed..

That is my understanding too. Clearly I have not been gluten-sensitive from

birth. So my gene got " turned on " by something. It seems like that's pretty

common.

>

>Your candida must have come about from some other " insult " no? Did

>you take a lot of antibiotics around that time for something? Or

>what caused the imbalance?

A few years prior I went to the ER and was put on antibiotics for several

weeks, IIRC. That might have had something to do with it. But I had extreme

emotional stress for several months before the candida attack. My dog was

dying of cancer and I went to great lengths to try to save him, but to no

avail. I blamed myself (rightly so) for his premature death. I had some

other emotional stress at the same time AND I was eating a mostly vegetarian

diet and eating junky carbs too. Then the candida set in and I also had a

patch of white hair appear almost overnight at the same time. I think it was

also around that time I noticed my stools were always too soft. I think all

that culminated in a breakdown of my immune system. :-(

Suze Fisher

Lapdog Design, Inc.

Web Design & Development

Weston A. Price Foundation Chapter Leader, Mid Coast Maine

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

“The diet-heart idea (the idea that saturated fats and cholesterol cause

heart disease) is the greatest scientific deception of our times.” --

Mann, MD, former Professor of Medicine and Biochemistry at Vanderbilt

University, Tennessee; heart disease researcher.

The International Network of Cholesterol Skeptics

>> http://www.foodsci.uoguelph.ca/dairyedu/chem.html#protein3

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

June 29, 2005

> Re: I'm officially casein- and gluten-intolerant

>

>On 6/28/05, Suze Fisher <s.fisher22@...> wrote:

>

>> >You mean it's the conventional wisdom that pasteurization doesn't

>> >change amino acid sequence, or it's the primary wisdom that it follows

>> >from that that pasteurization wouldn't be a factor in immune reaction?

>>

>> The former. Although it seems the latter would flow from that.

>

>I don't think so, as we both agreed that pasteurization could affect

>the digestibility, and an immune reaction would be to undigested

>casein.

Actually, I'm not so sure about that. Beyond an IgA reaction to a specific

amino acid chain in casein and gluten causing an immune reaction, there is

also the opiates - gluteomorphin and caseomorphin which cause reactions as

well (although I'm not sure if they're considered *immune* reactions) and

the shortest peptide length that causes the problem is only *3* amino acids

in length! Autistic kids and those with celiac disease (and perhaps those

who are gluten and casein-sensitive) may not produce enough of the enzyme

that breaks down gluteomorphin and caseomorphin, called Dipeptidyl peptidase

IV. One job of this enzyme is to break down peptides in which proline is in

the second position, which is the case with gluteo- and caseo-morphin.

However, when it breaks them down to a three-amino acid peptide with proline

in the middle, this peptide then inactivates DPP IV! It seems very strange.

Interestingly, hydrolized gelatin *inhibits* DPP IV and one theory is that

the hydrolized gelatin in the MMR vaccine contributes to autism.

In any case, I'm still not sure if this is considered an immune reactionm

but DPP IV is present on lymphocytes - immune system cells - in the lining

of our intestine, kidneys and blood vessels. Nonetheless, I don't know if

that means that the opiate-induced rages that some peopel experience from

caseo- and gluteomorphin are considered immune responses. However, for all

intents and purposes, it seems that not only is undigested casein an issue,

but so too is mostly digested casein for those who don't have an adequate

amount of DPP IV. One theory is that autistic children may have a genetic

" defect " that interferes with their ability to produce this enzyme, btw.

>

>> It's not to my knowledge. I didn't mean to indicate it was, I was just

>> mentioning another factor for consideration. Although it IS possible that

>> heat changes the micelle cluster in some way. Casein apparently exists

>> primarily in large micelle clusters. This site mentions something about

>> heat and acidity affecting equilibria between the micelle and

>the milk serum. I

>> do not know if that has any effect on peptide exposure though.

>Note also it

>> looks like there are peptide strands hanging off the micelle in

>the bottom

>> figure.

>>

>

>That website says that heat causes irreversible aggregation of micelles:

>

> " At temperatures above the boiling point casein micelles will

>irreversibly aggregate. On heating, the buffer capacity of milk salts

>change, carbon dioxide is released, organic acids are produced, and

>tricalcium phophate and casein phosphate may be precipitated with the

>release of hydrogen ions. "

OK, I didn't have the time to read the site other than the part I posted.

What temp is the boiling point?

>

>> Additionally, from what I understand, casein is *unusually*

>flexible - the

>> stuff I've read said it acts differently than most other proteins due to

>> it's unusual degree of flexibility. But again I don't know if this in any

>> way affects it's digestibility or amino acid sequences.

>

>I don't know anything about casein chemistry, but I do know that all

>proteins will only exist in the natural state within a certain pH

>range, and outside of that range they denature. Some will have more

>than one natural form and thus have other ranges where they change

>shape without completely unraveling. Perhaps what you are referring

>to is that casein exists in a variety of shapes at a variety of pH

>ranges without denaturing, in which case that would make sense and my

>original response would be inapplicable.

I don't remember if any of the stuff I've read on it offered that as an

explanation. I just recall that they emphasize how it's flexible and open

structure make it different from most other proteins.

Suze Fisher

Lapdog Design, Inc.

Web Design & Development

Weston A. Price Foundation Chapter Leader, Mid Coast Maine

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

“The diet-heart idea (the idea that saturated fats and cholesterol cause

heart disease) is the greatest scientific deception of our times.” --

Mann, MD, former Professor of Medicine and Biochemistry at Vanderbilt

University, Tennessee; heart disease researcher.

The International Network of Cholesterol Skeptics

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

June 29, 2005

> Re: I'm officially casein- and gluten-intolerant

>

>I know, it does suck! I'm sorry you had the same news!

>

>Oh geez, but now you've just given me too much info and I am thinking

>I need to stop dairy. I just don't know how I will deal w/ it!

Well, I don't know if you have to give up all dairy. But if you did test

postive for an immune reaction to cow's milk, I'd definitely give up cow's

milk. If you have no symptoms of intolerance, it might be too risky to

experiment with other species' milk since you'd have no idea if you're

reacting to it or not. I gave up cow's milk as soon as I got my results.

With gluten, I've given myself 10 days to go off all gluten foods/drinks, as

I find I do better when I can mentally prepare myself. Plus I'm taking DPP

IV when I consume anything that might have gluten in it.

I don't know how you handle deprivation best, but maybe you can give

yourself a time limit as well so you can mentally prepare for it. Since you

are nursing though, I'd think you should probably go off it sooner rather

than later since two other human beings are relying on you being healthy for

their own health :-/

>

>Yes, I mostly consumed raw dairy before the test so I guess those

>numbers indicate I have a problem w/ that. I just don't have any

>symptoms so it's hard to stop!

Maybe the fact it's so hard to stop is a symptom :-) At least a symptom of

the addictive affects of caseomorphin.

>

>Also, I mentioned this test to Dr. Ron Schmid who I consulted w/ a few

>times last year, and he essentially disregarded it (so i happily did

>too!) I also work w/ practitioners who do a form of muscle testing and

>raw dairy always tests well for me. Hmmm....

Well, if it were me, I'd go with the IgA test result over muscle testing

personally. As for Ron, I don't know why he disregarded it, I've written him

about that to find out.

>

>Uggh, but I am nursing twins and am worried that they are not getting

>what they need through my breastmilk because I'm eating so much dairy.

>At this point, this is the only motivation to stop!

And a good one at that! :-)

>

>my numbers really don't look good compared to yours:

> Gluten Sensitivity Testing

>> Fecal Antigliadin IgA 25 units (Normal Range <10 Units)

>> Fecal Antitissue Transglutaminase IgA 25 units (Normal Range <10

>> Units)

>> Microscopic Fecal Fat Score: 384 (Normal Range < 300 Units)

>>Food Sensitivity Testing

>> Fecal anti-casein (cow's milk) IgA antibody 29 Units (Normal

>> Range <10 Units)

Definte positive for everything :-( Did you do the gene test? If so, what

was the result?

>

>would love to find out what you will eat now that you are off

>gluten/casein. have you started?

See above.

>

>the good news is that I'm actually getting tired of dairy--can't

>believe it, but it's true!

>

>thanks for the rec on that list. i will check it out.

>

>lisa

The URL is GFCFNN/

Several folks on this list are also on that one. (It's kind of an offshoot

of this list.)

Good luck in going off dairy!

Suze Fisher

Lapdog Design, Inc.

Web Design & Development

Weston A. Price Foundation Chapter Leader, Mid Coast Maine

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

“The diet-heart idea (the idea that saturated fats and cholesterol cause

heart disease) is the greatest scientific deception of our times.” --

Mann, MD, former Professor of Medicine and Biochemistry at Vanderbilt

University, Tennessee; heart disease researcher.

The International Network of Cholesterol Skeptics

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

June 29, 2005

Re: I'm officially casein- and gluten-intolerant

I know, it does suck! I'm sorry you had the same news!

Oh geez, but now you've just given me too much info and I am thinking

I need to stop dairy. I just don't know how I will deal w/ it!

(snip)

, it could be worse ! I just got our families' results back from York,

and between us all we're allergic to over 20 foods, including all grains, milk,

eggs, nuts and many veggies and fruits. I'm totally feeling the deprivation !

Rebekah

June 29, 2005

On Wed, 29 Jun 2005 03:16:48 -0000

" lisa_mc_connell " <mmlisa2@...> wrote:

> I know, it does suck! I'm sorry you had the same news!

>

> Oh geez, but now you've just given me too much info and I am thinking

> I need to stop dairy. I just don't know how I will deal w/ it!

>

> Yes, I mostly consumed raw dairy before the test so I guess those

> numbers indicate I have a problem w/ that. I just don't have any

> symptoms so it's hard to stop!

The test indicates you have a problem with cow's milk, not much else,

and maybe not all cow's milk at that. What kind of cow dairy have you

been consuming, holstein or another breed?

> Also, I mentioned this test to Dr. Ron Schmid who I consulted w/ a few

> times last year, and he essentially disregarded it (so i happily did

> too!) I also work w/ practitioners who do a form of muscle testing and

> raw dairy always tests well for me. Hmmm....

Interesting about Ron. Are they muscle testing the same milk you drink

at home?

============================================================

" So this is how freedom dies -- to thunderous applause. "

(Senator Padme Amidala in " Star Wars Episode III: Revenge of the Sith " )

============================================================

June 29, 2005

I'm working on designing a rotation diet right now. For breakfast I'm currently

giving them a meat (homemade sausage or baked chicken or fish patties) and a

fruit with nut or coconut milk. Lunch is homemade broth based soup with " safe "

veggies of squash, mushrooms, celery, and meat, plus a salad or fruit. Dinner

is same as lunch, with either a millet, or amaranth based bread item, or a pecan

or walnut-based " bread " item. Snacks are fruit, jerky/meatballs, and fruit

(fresh or dehydrated), and sesame butter.

It's a process.

Rebekah

Re: I'm officially casein- and gluten-intolerant

oh, i'm sorry, rebekah. so what are you eating? I'm afraid to take a

test like that for fear of those results! But it's so good to know so

you can do something about it.

lisa

>

> , it could be worse ! I just got our families' results back

from York, and between us all we're allergic to over 20 foods,

including all grains, milk, eggs, nuts and many veggies and fruits.

I'm totally feeling the deprivation !

>

> Rebekah

>

June 29, 2005

Rebekah:

What a shame! I am sorry for all of you. Does it mean you can only

eat meats in safety? What if those veggies, nuts and fruits you are

allergic to were organic? Would that make a difference?

JC

No -- what I'm discovering is that MOST of our food allergies may have been

caused by overgrowth of candida, which caused severe damage to our intestinal

flora, and resulted in leaky gut. Thus, we react to even the most innocuous

foods, even organic ones. We've eaten only organic sources of meat and produce

for over 1 year now. On our allergy tests, we cleared as OK for every meat, and

most fruits, with the exclusion of grapes, pineapple and cranberries. But,

veggie-wise we have to avoid SO many, it's overwhelming right now. I'm working

on a rotation diet of our " safe " foods, and techniques for repairing the damaged

gut.

Rebekah

June 30, 2005

> Nonetheless, I don't know if

>that means that the opiate-induced rages that some peopel experience from

>caseo- and gluteomorphin are considered immune responses. However, for all

>intents and purposes, it seems that not only is undigested casein an issue,

>but so too is mostly digested casein for those who don't have an adequate

>amount of DPP IV. One theory is that autistic children may have a genetic

> " defect " that interferes with their ability to produce this enzyme, btw

Suze:

I think you covered all the bases so well! The opiate thing isn't

considered an allergy at all, but the issue is: WHY do some people

react more to the opiates than others? Lack of digestion being

one part, leaky gut/brain being the other part? Personally I

think the zonulin connection is what makes it all fit: if your gut

and brain leak, those opiates get out a whole lot faster, and with

more severe results.

Heidi Jean

July 2, 2005

> Re: I'm officially casein- and gluten-intolerant

>

>(suze) Well, I don't know if you have to give up all dairy. But if you

>did test

>> postive for an immune reaction to cow's milk, I'd definitely give up

>cow's

>> milk. If you have no symptoms of intolerance, it might be too risky to

>> experiment with other species' milk since you'd have no idea if you're

>> reacting to it or not. I gave up cow's milk as soon as I got my results.

>> With gluten, I've given myself 10 days to go off all gluten

>foods/drinks, as

>> I find I do better when I can mentally prepare myself. Plus I'm

>taking DPP

>> IV when I consume anything that might have gluten in it.

>

>(lisa) Hey, whats DPP IV?

An enzyme that digests some of the peptides in gluten and casein.

>

>(lisa) so you e-mailed him, huh? Yeah, he really didn't even seem

>interested in discussing it. I sent him Dr. Fine's response about

>pasteurized casein vs. raw casein (dr. fine believes it doesn't

>matter) and Dr. Ron seems to think it is an important distinction in

>terms of intolerance. I know you and chris have been going back and

>forth about this issue (i think that's what you are discussing--I'm

>having a hard time following! I guess i should really educate myself

>better)

I don't think anyone knows if pasteurization has any impact on an IgA

reaction to casein. Because it's an unknown, I'd be very cautious about

consuming it since you tested quite highly allergic to it.

>

>The other issue here is that sometimes I feel like i am so crazy w/

>the way I eat. I feel like I am eating the healthiest possible foods

>including the raw dairy. I see how other people eat and think, " now i

>have to give up raw dairy, too? " It's just frustrating.

Indeed, it is. However, with gluten, there are plenty of other substitutes

so that shouldn't be too bad to give up for an NT'er. With dairy it's a

whole 'nother story. However, as I said, it's possible you may only be

allergic to cow's milk, or even just to one type of casein in *some* cow's

milk and not others. There are so many unknowns. I'm experimenting with

fermented sheep's milk currently. So far it *seems* like I " m not bloating

which I do with cow's milk. I will retest my milk IgA again in several

months to see if there's any shift in my numbers. I will also continue to

take my DPP IV enzymes to assist in casein digestion.

>>

> (suze) Definte positive for everything :-( Did you do the gene test?

>If so, what

>> was the result?

>

>() Yes, here are the results. Gene test for gluten sensitivity.

>Molecular analysis: HLA-DQB1*0501, 0602

OK, you have two copies of gluten sensitive genes as I understand it. So at

least one of your parents has at least one of the genes. Or one could have

both, or each could have one. Your siblings may also carry these genes. Dr.

Fine has found that about 75% who have the genes have active gluten

sensitivity.

>I apologize for not knowing how to respond appropriately w/out making

>this a confusing mess. I will have to pay more attention to how people

>do this in their posts!

Actually, it's not a mess at all, you organized it very well - it was easy

to follow :-)

Suze Fisher

Lapdog Design, Inc.

Web Design & Development

Weston A. Price Foundation Chapter Leader, Mid Coast Maine

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

“The diet-heart idea (the idea that saturated fats and cholesterol cause

heart disease) is the greatest scientific deception of our times.” --

Mann, MD, former Professor of Medicine and Biochemistry at Vanderbilt

University, Tennessee; heart disease researcher.

The International Network of Cholesterol Skeptics