Re: celiac/leaky gut (was Re: dairy problems)

[Guest guest]

>

>did you have a biopsy of your digestive tract tested to make the

>diagnosis? i had my blood tested 2x --once through reg MD and again

>through the Uofland's screening study-- and both tests returned

>negative. rather than go through the biopsy, i opted just to remove

>gluten anyway. then i added it back a la NT, but on a very small

>scale.

I had a blood test, but it was after I went GF. I haven't persued it: the

only thing a diagnosis would buy me is a potential mark on my insurance

premiums. A tiny amount of gluten sets me off: I get really itchy skin,

cold hands, red bumps, nausea, sinus pain, and 2 days of gut problems, so

it's not really tempting. I did order a test for the genetic marker though

and am awaiting the results (you can order it on the internet at

www.finerhealth.com).

The biopsy is often negative too, so hardly worth it. One lady went through

several biopsies, all negative: but when she did one of those

swallow-the-camera deals they did find patchy damage. I'm holding out for

the swallow-the-camera -- that is a better test for cancers, which is what

I'm really worried about.

Also, there have been tests done where they had relatives of celiacs ingest

gluten, and watched the little villi get flattened, then spring back into

shape -- even though the person had no detectable antibodies and no

detectable villi damage. So I tend to think it is a disease like diabetes:

you can have it " a little bit " -- and if you have it a little bit, your

body just will never like gluten very much.

>a couple of days ago, after my tummy became distended on NT oatmeal,

>i got rid of my final source of gluten. of course, with all the

>special things i put in my oatmeal, i can't point a definite

>accusative finger at the gluten, but i won't miss it.

Oatmeal is almost always contaminated with wheat (there was a big

discussion about this on the Celiac list-group awhile back). They think

plain, uncontaminated oats are probably ok, but next to impossible to get

unless you grow your own. I got some whole sorghum recently: it looks a LOT

different than wheat and I'd bet it would make a good rolled cereal (I

don't have a roller yet, so I haven't tried it).

I'm not convinced I don't react to other things also, which is one reason I

got interested in NT. From listening on the Celiac group, a whole lot of

Celiacs don't digest ANY grains well, and I don't either. I did take a cue

from Sally though and now I eat more pre-processed grains, like masa and

tortillas, and soak the other flours (and don't use the gf mixes much: they

have a lot of stuff in them). And I'm eating fewer grains and more vegies

and good meat. I think the " fermented condiments " work really good too:

Celiacs in particular don't produce enzymes well. The interesting thing is,

on the Celiac list group very few people are interested in eating

nutritionally, mostly in finding bread-subsititutes.

-- Heidi

[Guest guest]

Heidi-

> From listening on the Celiac group, a whole lot of

>Celiacs don't digest ANY grains well, and I don't either.

Please, do yourself a favor and get a copy of the new edition of _Breaking

The Vicious Cycle_ by Elaine Gottschall. (The new version has a supplement

specifically about celiac, though I haven't read the supplement.) The diet

she describes is extremely effective for all forms of bowel disease -- and

often for ailments that aren't normally associated with bowel function.

-

[Guest guest]

At 11:55 PM 4/3/2002 -0500, you wrote:

> > From listening on the Celiac group, a whole lot of

> >Celiacs don't digest ANY grains well, and I don't either.

>

>Please, do yourself a favor and get a copy of the new edition of _Breaking

>The Vicious Cycle_ by Elaine Gottschall. (The new version has a supplement

>specifically about celiac, though I haven't read the supplement.) The diet

>she describes is extremely effective for all forms of bowel disease -- and

>often for ailments that aren't normally associated with bowel function.

>

>

>-

Thanks, I'll look into it! I've heard it mentioned a few times. Actually

everything is going well for me in that department until I eat something I

shouldn't. I don't think people were meant to eat all that many grains

anyway, and I don't like them all that well (though I really TRIED to stick

to that silly pyramid, believe it or not). I'm amazed though that celiacs

aren't counselled more to REALLY change their diet, not just eliminate gluten.

Heidi Schuppenhauer

Trillium Custom Software Inc.

heidis@...

[Guest guest]

At 12:14 AM 4/4/2002 +0000, you wrote:

>i have nothing that dramatic w/gluten, only w/pasteurized milk

>products, but i'm hoping that, now that i've totally cut out gluten,

>i might tolerate raw, cultured milk from pastured cows more easily.

>maybe it's just wishful thinking.

Probably not just wishful thinking. About 1/10 (or more) of

gluten-intolerant people are lactose-intolerant, because the enyzymes are

all fouled up. After the gut normalizes, they usually become

lactose-tolerant again. It can take up to a year though.

Also, microscopic colitis is a common side-effect, because the bacteria get

fouled up too and this causes the immune system in the lower intestine to

attack the gut (I'm simplifying: it's complicated and I don't pretend to

know the details). The fermented foods, obviously, is a real good idea. But

if there are still problems, one doctor recommends a 10-day course of Pepto

Bismol: it DOES work, I'm not sure what the Bismuth does but it's an old

remedy. Once the colitis is healed up, it likely won't come back if you

don't eat gluten (and assuming gluten was the original problem).

And most celiacs don't have much reaction to eating wheat, at least not

that they notice. Which is surprising. The fact I react is actually very

helpful, otherwise I'd never have known about it. It took me a long time,

and a food diary, to associate these strange bumps with anything I was

eating. I always assumed I was just a good flea target and no one else in

the house was.

Anyway, good luck on the milk!

Heidi Schuppenhauer

Trillium Custom Software Inc.

heidis@...