Gluten intolerance help

[Guest guest]

I've been reading the anti-gluten posts and sort of thinking that maybe that

could be the answer to my health problems, or maybe my eldest son's behavioral

issues. Then, all of sudden today, it was like one of those smack yourself in

the head moments. I realized that while neither me nor my eldest has many

symptoms of gluten issues, my youngest son has several of them. Hello!

He has a severely distended abdomen starting after breakfast and it's worse by

bedtime - after 3 meals. He has bowel issues and weak nails. His teeth do seem

nice, though. He's adopted, so I don't have a way to look at our health issues

and see them in him.

So, I'm writing to ask those of you (like Katja - the interim Glutenator) who

may know which would be good for me to join for help with gluten

specifically. I started tonight by giving him no grains with supper, and his

stomach wasn't half the size it usually is - so that's a good sign. Is corn

something I have to watch, too? Is there a difference in celiac and gluten

intolerance? Do I need to have tests run or just trial and error it?

Just starting to figure this whole thing out. Any advice would be much

appreciated. Thanks!

Steph

[Guest guest]

Steph,

I'm not the gluten expert around here, but I have a little

experience with food allergies. Gluten isn't the only the that

could do that to your son. It could be milk or eggs for example.

There's a gluten free list called GFCFKids. Those folks are very

helpful.

--- In , " Steph " <flybabysteph@b...>

wrote:

> I've been reading the anti-gluten posts and sort of thinking that

maybe that could be the answer to my health problems, or maybe my

eldest son's behavioral issues. Then, all of sudden today, it was

like one of those smack yourself in the head moments. I realized

that while neither me nor my eldest has many symptoms of gluten

issues, my youngest son has several of them. Hello!

>

> He has a severely distended abdomen starting after breakfast and

it's worse by bedtime - after 3 meals. He has bowel issues and weak

nails. His teeth do seem nice, though. He's adopted, so I don't

have a way to look at our health issues and see them in him.

>

> So, I'm writing to ask those of you (like Katja - the interim

Glutenator) who may know which would be good for me to

join for help with gluten specifically. I started tonight by

giving him no grains with supper, and his stomach wasn't half the

size it usually is - so that's a good sign. Is corn something I

have to watch, too? Is there a difference in celiac and gluten

intolerance? Do I need to have tests run or just trial and error it?

>

> Just starting to figure this whole thing out. Any advice would be

much appreciated. Thanks!

> Steph

>

>

>

[Guest guest]

At 06:07 AM 9/15/2004, you wrote:

> " You can get him tested, which is a good idea if you can afford it. "

>

>Are there tests that conventional doctors can do? That'd be a lot cheaper for

me.

All the tests are " conventional " , actually. Celiac is a recognized

disease and the NIH just finished a special session about it. The

problem is convincing your doc to DO the test. They were told

in medical school is is " very rare " in the US, so unless you are

dying they don't test for it. The University of land (conventional!)

did a study that proved it is NOT rare in the US, just underdiagnosed.

The Reader's Digest called it " one of the 10 most underdiagnosed

conditions " .

Here is a link to a " doctor journal " document: print it out to show your

doctor. The tests are listed. Those will not catch the minor

cases, or the IgA may be too low to call " celiac " but still

will indicate gluten intolerance. But the tests themselves have

gotten cheaper, and the docs will do them to shut you up

sometimes. The article says celiac is in 1 in 200 people, more

recent ones say 1 in 100. But gluten intolerance is far more

common, like 1 in 10. And actually, most humans don't

digest gluten properly ... one item in the Lancet showed that

even normal people can get villi damage from eating too much

gluten, but it was a very small study and I haven't heard if anyone

replicated it. Gluten gloms onto the villi normally, which you would

think would affect digestion in anyone, whether they have the

immune reaction or not.

http://www.aafp.org/afp/980301ap/pruessn.html

Katja's mention of health insurance issues IS a real

issue though. While the doctors are ignoring the

celiac issue, health insurers regard it as a big deal

(mainly because, untreated, people die alot, and

they don't feel anyone can really stick to the diet).

Which is one reason I like the private testing. I suspect

this will change once the real prevalence is more widely

known.

Heidi Jean

[Guest guest]

Steph-

>So, I'm writing to ask those of you (like Katja - the interim Glutenator)

>who may know which would be good for me to join for help with

>gluten specifically. I started tonight by giving him no grains with

>supper, and his stomach wasn't half the size it usually is - so that's a

>good sign. Is corn something I have to watch, too? Is there a

>difference in celiac and gluten intolerance? Do I need to have tests run

>or just trial and error it?

I strongly recommend buying and reading _Breaking The Vicious

Cycle_. Gluten is not the whole story, though it certainly can be very

important. If you'd like a more bowel-centric group with a bit less volume

to deal with than this one, I recommend Healing Crow.

-

[Guest guest]

Thanks to , , Heidi, and Katja (in no particular order)! :-)

I'm reading, reading, joining lists, reading some more...waiting for Heidi's

book...

" From: " clzdawson "

Subject: Re: Gluten intolerance help

Steph,

I'm not the gluten expert around here, but I have a little

experience with food allergies. Gluten isn't the only the that

could do that to your son. It could be milk or eggs for example.

"

Actually, his casein issues are how we got into NT in the first place. We

picked him up from the hospital at 2 days old and he was already congested. I

asked my pediatrician about it at every well visit for the first six months, and

he just said, " Everything seems fine. " Well, by 7 months he was gagging and

choking on backdrip all day! I had read Marilu Henner's books and she has

casein issues and mentioned the congestion. So, I bought some soy formula and

within 3 days his congestion was completely gone. I had a feeling that the soy

stuff was not good, so I asked someone about goat's milk for babies and she

loaned me her NT.

So, that's how we got into NT. He still gets congested with pasteurized cow

milk, and slightly congested with raw cow milk. He seems fine on raw goat milk,

and I just starting kefiring a few weeks ago.

Right now I'm trying to not eat gluten on purpose - not quite knowledgeable

enough to irradicate it yet. This morning we ate McCann's for breakfast and I

felt cruddy afterwards. Darnit! We eat oatmeal 3-4 times a week. I was hoping

McCann's would be okay. I think that and good NY style pizza and calzones will

be the hardest things to give up. :-(

Oh, I tried Tinkyada spaghetti the other night - it wasn't too bad! My husband

didn't like it much, but it's all in his head - I know this from experience. He

loves lo mein and these were similar to that. He is willing to eat it, though.

I'm blessed in that way. :-)

Thanks again! Steph

[Guest guest]

>

> Now, gluten intolerance basically happens because the

body " recognizes " a set

> of peptides in wheat/barley/rye as being viruses or fungi.

Interesting. Doug Kaufmann says that these grains are universally

infected with fungi.

I'm still puzzling over this disease, and how prevalent it is.

So folks who are native to the Middle East can tolerate gluten

better, right? I wonder how much of their diet is things like

kefir? Since the Middle East is a part of the world that tends to

stay warm all year, wouldn't their traditional foods need to be

fermented for the most part? But as you move north, the need for

fermenting everything is not as severe. And you can raise other

grains than wheat, or very little grains at all?

At a convenience store here that is run by Middle Easterners, they

carry " kefir cheese " in a container that has Persian-looking printing

on it. I got some one time. It's apparently not really the

traditional product. I believe it was made in California, and it had

things added to it to make it taste lactofermented. It is a lot like

cream cheese, but has a tangier flavor. I ate it on bagels instead

of cream cheese. They also carried LOTS of pita-type bread. The

bread and the " kefir-cheese " were the only foods that appeared to

similar to foods from their home country. The rest of their

merchandise appears to be typical for a convenience store in a town

with a big college. Junk food, in other words.

Maybe Middle Easterners *don't* have tolerant genes, but their diet

includes enough kefir and kefir-like foods that the beneficial

bacteria in them help control the problem with the wheat?

I wish either The Glutenator or The Interim Glutenator would have a

nice sit-down with Doug Kaufmann or Dave Holland.

[Guest guest]

>Maybe Middle Easterners *don't* have tolerant genes, but their diet

>includes enough kefir and kefir-like foods that the beneficial

>bacteria in them help control the problem with the wheat?

Kefir and bacteria really do help ... so does red wine (and olive oil, is my

guess), and

sourdoughing the bread. But the etiology of gluten intolerance is VERY well

studied, they think they even know the 20-peptide string that is basically

indigestible and starts the whole thing. And it isn't just in people: Irish

Setters

get it too. The HLA genes are programmed to recognize microflora ... they help

protect you against all kinds of germs ... and the genes in question are

HLA-DQ2, and DQ8.

(also recently they've identified a couple of others, but 95% of gluten-reactive

folks have

one of those two). They tested blood bank blood, and yeah, the genes are less

common in

the Middle East.

It may well be that all grains have a trace of fungi, but millet and rice just

don't

cause the same set of problems. However, the Middle East is more dry, so they

wouldn't get the ergot problems that the northern countries got with wheat/rye.

>I wish either The Glutenator or The Interim Glutenator would have a

>nice sit-down with Doug Kaufmann or Dave Holland.

Well, it's really not an " either or " situation. Same with low carb vs. low

gluten ...

grains have LOTS of stuff that is problematic. It's just hard to get your

mind around, because we've all been brought up to think that whole

grains are so healthy.

However, there is a doctor who is also thinking that bacteria or candida

is the trigger for gluten intolerance who has some interesting theories.

I'd love to see where the research goes ...

>

Heidi Jean

[Guest guest]

>

> >Maybe Middle Easterners *don't* have tolerant genes, but their

diet

> >includes enough kefir and kefir-like foods that the beneficial

> >bacteria in them help control the problem with the wheat?

>

> Kefir and bacteria really do help ... so does red wine (and olive

oil, is my guess), and

> sourdoughing the bread. But the etiology of gluten intolerance is

VERY well

> studied, they think they even know the 20-peptide string that is

basically

> indigestible and starts the whole thing. And it isn't just in

people: Irish Setters

> get it too. The HLA genes are programmed to recognize

microflora ... they help

> protect you against all kinds of germs ... and the genes in

question are HLA-DQ2, and DQ8.

> (also recently they've identified a couple of others, but 95% of

gluten-reactive folks have

> one of those two). They tested blood bank blood, and yeah, the

genes are less common in

> the Middle East.

This is really interesting. I keep wondering, however, whether it's

a chicken-or-egg question. Which comes first? Does continuous

exposure to wheat cause the genes to change? Or are the genes just

waiting for a trigger point to be reached, insofar as the amount of

exposure to wheat in one's lifetime?

I want to spend some time talking to a few of these Middle Eastern

ladies here. I would like to get them talking about what they are

used to eating back home. Dr. Price never got over there, did he?

>

> It may well be that all grains have a trace of fungi, but millet

and rice just don't

I don't think Doug fingers millet and rice as problems...except a

source of starch. It's the more common grains he mentions all the

time.

> cause the same set of problems. However, the Middle East is more

dry, so they

> wouldn't get the ergot problems that the northern countries got

with wheat/rye.

For sure!

>

> >I wish either The Glutenator or The Interim Glutenator would have

a

> >nice sit-down with Doug Kaufmann or Dave Holland.

>

> Well, it's really not an " either or " situation. Same with low carb

vs. low gluten ...

> grains have LOTS of stuff that is problematic. It's just hard to

get your

> mind around, because we've all been brought up to think that whole

> grains are so healthy.

You got that right!

>

> However, there is a doctor who is also thinking that bacteria or

candida

> is the trigger for gluten intolerance who has some interesting

theories.

> I'd love to see where the research goes ...

Who is that? I would like to read what he's saying.

[Guest guest]

Oh, I forgot mention that you're getting me more interested in this

thing.

DH is of Czechoslovakian extraction. I read something that said

gluten intolerance was " discovered " in Czechoslovakia during WWII(?)

when children, deprived of their usual wheat food, actually were

healthier!

DH discovered he was allergic to penicillin after a truck accident at

age 16. Before that, he was an excellent student. Afterwards, I

guess it wasn't so easy to ace everything.

He has claimed to have allergies of all kinds (dust, in particular,

as well as pollen). He has way fewer complaints when he eats less

grain foods. I'm wondering how he would do if he went GF.

So I'm wondering if the big dose of antibiotics (penicillin) at age

16 didn't suddenly kill off a lot of his good flora, and he never

quite recovered.

So when's your cookbook coming out? ;-) (hint-hint)

[Guest guest]

>This is really interesting. I keep wondering, however, whether it's

>a chicken-or-egg question. Which comes first? Does continuous

>exposure to wheat cause the genes to change? Or are the genes just

>waiting for a trigger point to be reached, insofar as the amount of

>exposure to wheat in one's lifetime?

The genes are thought to be there for protection against

some microbe ... you have LOTS of HLA genes, they give you

built-in immunity to baddies. They recognize the proteins on

the microbe ... if a microbe has those proteins they attack.

Unfortunately, a peptide string in wheat " looks like " some

microbe (possibly candida). Dr. Mercola calls this " molecular

mimicry " . But the genes were " put there " (by God or natural

selection, depending on your philosophy) to protect against

microbes ... folks that don't have that gene will have more

problems with whatever microbe it protects against. Kind of

like the Europeans didn't have as much problem with smallpox

as the Indians did, because the smallpox-sensitive Europeans

died out. We are in the process of killing off the wheat-sensitive

genetic stock.

>I want to spend some time talking to a few of these Middle Eastern

>ladies here. I would like to get them talking about what they are

>used to eating back home. Dr. Price never got over there, did he?

Actually the history of the Middle East makes me think that

maybe even if you aren't allergic to gluten it still messes

up your brain ... they have a huge issue with violence over

there. My parents went there once and said it was crazy ...

there was a fender bender, and the two guys got out of

their cars and started fighting. Instead of breaking them

up, the bystanders started fighting each other also ...

>

>I don't think Doug fingers millet and rice as problems...except a

>source of starch. It's the more common grains he mentions all the

>time.

But millet and rice ARE the more common grains in some other

countries. And they do get mold. They just don't seem to

cause immune problems so much. Part of it is that they don't

have much protein at all ... it's the proteins in grains that cause

problems. Wheat is uniquely high in protein, which is one

reason it's been used to replace meat in the diet (soy is another

one, and it is also allergenic, though never eaten in as great

a quantity).

>

>>

>> However, there is a doctor who is also thinking that bacteria or

>candida

>> is the trigger for gluten intolerance who has some interesting

>theories.

>> I'd love to see where the research goes ...

>

>

>Who is that? I would like to read what he's saying.

>

Roy Jamron ... here is what he wrote:

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

Finding Gluten Peptides Inside Bacteria - Part 1

Whether gut bacteria play a role in the pathogenesis of celiac disease is

an important question that needs to answered by celiac disease research.

If such bacteria exist, a cure for celiac disease might exist by the

elimination of these bacteria from the gut. I present here a discussion of

a research method that might provide the answer to that question. I

strongly urge that NIH funding be set aside for a study utilizing this

method.

My article, " Are Commensal Bacteria with a Taste for Gluten the Missing

Link in the Pathogenesis of Celiac Disease? " , which appears in the current

Spring 2004 edition of ' " Celiac.com's Guide to A -Free

Life Without Gluten " is available free at:

http://www.celiac.com/st_prod.html?p_prodid=3D967

That article proposes that the immune system may become intolerant to

gluten via an unknown species of pathogenic bacteria which is able to

internalize gluten peptides. The result is that when dendritic cells

(antigen presenting cells) sample the pathogenic bacteria and break it down

into peptides for presentation to naive T cells, the internalized gluten

peptides are mixed with the bacteria's own native peptides. The immune

system would not be able to distinguish internalized gluten peptides from

the pathogenic bacteria peptides. When the dendritic cell presents these

internalized gluten peptides to a T cell, the T cell would receive signals

which tell the T cell that the internalized gluten peptides are from a

pathogenic bacteria. Hence the immune system would learn to respond to

gluten peptides as though a pathogenic bacteria were present, resulting in

gluten intolerance.

My article suggests that celiac research should try to find and identify

such bacteria by searching for gluten peptides within the cell membranes of

gut bacteria. In the time since writing that article, I have been looking

for methods to detect gluten peptides within bacteria. I have found that

an established method exists that can do this. That method is called

immunogold electron microscopy.

Immunogold electron microscopy uses monoclonal antibodies, labelled with

fine gold particles, to probe for and bind to specific epitopes of a

specific antigens in biological specimens. In this case, the antigen of

interest is a gluten peptide. The gold particles (colloidal gold) are

typically between 1 and 20 nanometers in size. Monoclonal antibodies are

produced by a process that involves first immunizing animals with the

desired antigen and ending up by harvesting monoclonal antibodies from

hybridomas which have been created by fusing B cells from the animals with

tumor cells. See:

http://www.accessexcellence.org/AB/GG/monoclonal.html

A number of biotechnical companies offer off-the-shelf antibodies and

custom services to produce monoclonal antibodies made-to-order for specific

peptides. A great source of information on antibodies can be found at:

http://www.antibodyresource.com/educational.html

Prepared biological specimens are exposed to a solution containing the gold-=

labelled monoclonal antibodies. The antibodies will bind to target

antigens present on the specimen surface. Specimens are sliced into

ultrathin sections of tissues or cell suspensions (which includes

suspensions of bacteria cells.) By slicing the bacteria into ultrathin

sections, access is gained to any antigens (gluten peptides) that have been

internalized by the bacteria. When that specimen is examined under a

transmission electron microscope (TEM), the colloidal gold particles will

show up as distinct opaque spots indicating the presence and the location

of the target antigen (gluten peptide) within the specimen.

The process of searching for gluten peptides within bacteria would begin

with fecal samples collected from a variety of subjects: with and without

celiac disease; on gluten free and non-gluten free diets; adults and

children; twins discordant with celiac disease; etc. Fresh feces from

gluten free subjects can be incubated with gluten peptides to see if any

bacteria in the feces take up gluten peptides.

Using a centrifuge, bacteria is separated from fecal matter, concentrated,

and collected in a suspension. The bacteria suspension is further

processed and embedded within a cured small block of epoxy resin, or,

alternately, the suspension is fixed in a special low temperature resin and

frozen into a solid small block. That block is then cut into ultrathin

sections with a glass knife using an ultramicrotome. If frozen, the

sections are thawed. The ultrathin sections are supported on fine metal

grids and then treated with solutions of stains and gold-labelled

monoclonal antibodies to be made ready for viewing under the electron

microscope. Ultrathin sections prepared by freezing usually allow better

access to the specimen's antigen binding sites for the monoclonal

antibodies than do ultrathin sections which have been embedded in epoxy

resin. The epoxy resin process is called ultramicrotomy, and the low

temperature process is called cryoultramicrotomy.

Immunogold electron microscopy has already been used in celiac disease

research to study the distribution of gliadin within enterocytes of the

intestinal mucosa. Hence monoclonal antibodies suitable for immunogold

studies to find gluten peptides within bacteria have already been

produced. See:

K.-P. Zimmer, T. Mothes, E. M=E9ndez, P. Ciclitira. Immunoelectron

Microscopical Analysis of Gliadin Transport Pathways within Enterocytes.

10th International Symposium on Coeliac Disease, June 2002, Paris, France

http://www.maladiecoeliaque.com/colloque/Lectures/c7-8.htm

---------

Eur J Gastroenterol Hepatol. 2001 Oct;13(10):1189-93

A monoclonal antibody that recognizes a potential coeliac-toxic repetitive

pentapeptide epitope in gliadins.

Osman AA, Uhlig HH, Valdes I, Amin M, Mendez E, Mothes T.

Department of Laboratory Medicine, Clinical Chemistry and Molecular

Diagnostics, University Hospital, Leipzig, Germany.

OBJECTIVES: Antibodies that detect coeliac-toxic prolamins from wheat,

barley and rye are important tools for controlling the diet of coeliac

disease patients. Recently, a monoclonal antibody R5 that recognizes wheat

gliadin, barley hordein and rye secalin equally was described. In this

study, the epitope recognized by R5 was investigated. METHODS: Both a phage-=

displayed heptapeptide library and overlapping peptides spanning the

sequence of alpha- and gamma-type gliadins (pepscan) were screened for

binding of R5. RESULTS: Both techniques yielded comparable pentapeptide

consensus sequences (phage display QXPW/FP; pepscan QQPFP). According to

recent observations, this peptide stretch may be of key importance in the

pathogenicity of coeliac disease. This sequence occurs repetitively in

prolamins (in gamma- and omega-type prolamins more frequently than in alpha-=

type prolamins) together with several homologous peptide stretches, which

are recognized less strongly. CONCLUSIONS: R5 seems to be a good candidate

for the specific detection of putative coeliac disease-active sequences in

prolamins and thus represents a valuable tool for the quality control of

gluten-free food.

PMID: 11711775 [PubMed - indexed for MEDLINE]

....................

Finding Gluten Peptides Inside Bacteria - Part 2

----------

Examples of Immunogold Electron Microscopy

The following articles contain micrograpic images of immunogold-labelled

ultrathin sections of bacteria as well as discussions of the methods used

to prepare the specimens. The older articles are stored as PDF files of

scanned pages which take a long time to download. (Paste web addresses

together on one line):

Kruger E, Witt E, Ohlmeier S, Hanschke R, Hecker M. The clp proteases of

Bacillus subtilis are directly involved in degradation of misfolded

proteins. J Bacteriol. 2000 Jun;182(11):3259-65.

http://jb.asm.org/cgi/content/full/182/11/3259?view=full & pmid=10809708

Newman G, Crooke E. DnaA, the initiator of Escherichia coli chromosomal

replication, is located at the cell membrane. J Bacteriol. 2000 May;182

(9):2604-10.

http://jb.asm.org/cgi/content/full/182/9/2604?view=full & pmid=10762265

Walderich B, Holtje JV. Subcellular distribution of the soluble lytic

transglycosylase in Escherichia coli. J Bacteriol. 1991 Sep;173(18):5668-

76.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?

tool=pubmed & pubmedid=1885544

Kroncke KD, Orskov I, Orskov F, Jann B, Jann K. Electron microscopic study

of coexpression of adhesive protein capsules and polysaccharide capsules in

Escherichia coli. Infect Immun. 1990 Aug;58(8):2710-4.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?

tool=pubmed & pubmedid=1973415

Bayer MH, Keck W, Bayer ME. Localization of penicillin-binding protein 1b

in Escherichia coli: immunoelectron microscopy and immunotransfer studies.

J Bacteriol. 1990 Jan;172(1):125-35.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?

tool=pubmed & pubmedid=2403537

Paques M, Teppema JS, Beuvery EC, Abdillahi H, Poolman JT, Verkleij AJ.

Accessibility of gonococcal and meningococcal surface antigens: immunogold

labeling for quantitative electron microscopy. Infect Immun. 1989 Feb;57

(2):582-9.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?

tool=pubmed & pubmedid=2492264

E, E, Ascaso C, Mendez E, R, JL. Subcellular

localization of the major pneumococcal autolysin: a peculiar mechanism of

secretion in Escherichia coli. J Biol Chem. 1989 Jan 15;264(2):1238-44.

http://www.jbc.org/cgi/reprint/264/2/1238

Acker G, Bitter-Suermann D, Meier-Dieter U, s H, Mayer H.

Immunocytochemical localization of enterobacterial common antigen in

Escherichia coli and Yersinia enterocolitica cells. J Bacteriol. 1986

Oct;168(1):348-56.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?

tool=pubmed & pubmedid=3531175

----------

Microscopy

[Guest guest]

>So I'm wondering if the big dose of antibiotics (penicillin) at age

>16 didn't suddenly kill off a lot of his good flora, and he never

>quite recovered.

Could be ... gut flora have a lot to do with health. Some docs are using

antibiotics to kill off ALL the gut flora and then " reseeding " it with

good stuff though.

>So when's your cookbook coming out? ;-) (hint-hint)

Soon as all the recipes work ... you are the guinea pigs, of course!

>

Heidi Jean