RE: glutenator! help!

[Guest guest]

Katja-

this was happening to me (I'm grain free) and in on my new baby. I linked it

to crispy nut consumption. I also cut out dairy (raw goat yogurt) for several

weeks to see if that helped.

I just ate some so we will see if it affects his skin. I do get dry skin on

my elbows every winter and it does look similar to eczema. It goes away though

in spring, summer and doesn't return until Feb.

Elainie

[Guest guest]

Katja,

though I'm NOT the glutenator, just a gluten-free happy customer [mostly], and I

think most of your observations/conclusions are on the right track, one sentence

caught my attention <<if she takes a bath, they flair up>>... so... what do you

add to the bath water?... I've stopped using any kind of soap and it made a HUGE

difference to the quality of my skin and to candida 'rashes' I used to get in

various skin folds...

second comment... my younger son used to get, as a baby, a rash on his bottom...

did an experiment [cruel one]... took him off cow's dairy and gave him...

gasp... soya milk [didn't know any better then] but... the rash disappeared...

after 4 weeks I re-introduced cow's milk and the rash re-introduced itself

too... might be worth withdrawing cow's dairy first see if it makes a

difference... then if it doesn't, withdraw goat's and sheep's milk products...

no other way of knowing really...

hope this helps,

Dedy

glutenator! help!

ok. this is going to be a bit long, so i'll try to be as organized as

possible!

i had a new patient yesterday who is a dead ringer for celiac/IgA. IBS,

hair and nail trouble, lactose intolerant, has to eat every 3 hours, kids

have skin issues, etc...

as she was describing her children, she mentioned that the 6 year old still

has cradle cap and bumpy arms, and the 3 year old has a " spot " on her

bottom: a red spot with a distinct boundary, which is sometimes red and hot

and sometimes dry and flakey...

this got my mama-me kind of upset, and here's why:

amber has had a bout of excessively dry skin this winter. everyone who

looks at it says it's " just dry skin " , our naturopath said it wasn't

eczema, and the bit of it that was on her legs did go away with the salves

that we've been making for her (coconut oil, lanolin, and calendula) - that

helped me believe that maybe people were right about the dry skin... the

thing is, i have this very painful nag that tells me it's *not* " just dry

skin " .

on her arms, chest, and back, it's raised dry patches, which aren't exactly

" scaly " like eczema would be. they're more...flakey, or crusty maybe, but

not the pussy kind of crusty. they often appear to have red cracks through

them, like antique porcelin/china does. they get better some days and not

other days, and it doesn't seem to matter how many times we slather her in

salve. if she takes a bath, they flair up. they don't actually *seem* to

bother her - in that she doesn't scratch at them...

on her bottom they're less raised, but still with boundaries. sometimes

smoother and quite red, other times paler and dry and a bit flakey.

she also has mild cradle cap, though she didn't have it since she was a

baby - it sort of " came back " .

in the last while it is getting better, which was mostly attributed to

spring coming and cod liver oil...

hearing my new client mention this on her children yesterday, i had this

terrible pang of ouch. i wasn't going to let this be ok in her children,

and i knew it wasn't " just dry skin " for them. my mind was already

prescribing grain free and fish oil for her kids...so why was i allowing

amber to go on this way? (insert some motherly guilt here, which i brushed

away so i could finish with my appointment)

so last night i was up late doing more research. finally, this morning, i

went back to the celiac site. one link i had *not* clicked on in the past

was the DH (Dermatitis Herpetiformis)link - i sorta filed it away as " oh

yeah, skin problems... " this morning i checked it out and the photographs

on the UK site - the milder photographs - strongly resemble what's going on

in both appearance and location.

so, ok, i have a diagnosis that i'm satisfied with. though i could be

wrong, it's always nagged at me that this was food related, and the

pictures really are the same. so, now's the tough part. amber has never had

grain. of course, she was receiving gluten in my breastmilk for many months

of her life (she's a year old on saturday and we've only been gluten free

for the last couple/few months). putting that together with the fact that

sometimes it takes a while for the symptoms to show and then to clear up

again, this makes perfectly fine sense.

so here are my questions:

1. do you agree with me so far?

2. she eats dairy. raw organic happy dairy. so do i. we *live* off dairy in

this house. i really don't want to give up dairy, and even more i REALLY do

not want her to be dairy-intolerant. really really really.

do you think that we need to give up the dairy until her skin heals? am i

just digging in with denial here? if we do give up dairy, is kefir still

ok? is ghee ok? (i would think those would both be fine).

3. am i freaking out, and really she's going to be fine in a while longer,

i have to give the exposure she had to gluten time to heal up...?

thanks heidi and everyone!

-katja

[Guest guest]

Katja,

When I was vegan macrobiotic I had terrible itchy eczema.The interesting

thing was that i did not eat any nuts/seeds/oils/or glten containing foods ( no

flour products, seitan, no oats, barley etc...) and no sugars ( not even

fruit for many years). And the problem kept getting worse. I did eat miso,

tempeh

and wheat free tamari.

I finally summed it up to a severe fatty acid deficiency/imbalance. After I

lost my dietary dogma I started using butter and usung fish oil supplements as

well as eating fish and eggs (this was before NT) and it went away. I couldn't

believe it was that simple but since that time there are certain *trigger*

foods that will create the same eczema (citrus, sugar, cow dairy in any form

except butter, butter oil and ghee, grains and too many nuts). Do you use

Primal Defense?

Elainie

[Guest guest]

>so here are my questions:

>

>1. do you agree with me so far?

Yep.

>2. she eats dairy. raw organic happy dairy. so do i. we *live* off dairy in

>this house. i really don't want to give up dairy, and even more i REALLY do

>not want her to be dairy-intolerant. really really really.

>do you think that we need to give up the dairy until her skin heals? am i

>just digging in with denial here? if we do give up dairy, is kefir still

>ok? is ghee ok? (i would think those would both be fine).

DH is weird ... I have it VERY mildly. People with DH are considered " celiac "

but they

don't usually test positive for IgA antibodies ... maybe because the antibodies

get

deposited in the skin? (that's what causes the itching ... deposits of IgA).

Also it

takes FOREVER to go away. The deposits don't go away when you stop eating

grains.

As for the " no grain " .... there are two things I can think of. First,

homeopathic amounts

of gluten can set this off. Personally I wasn't eating much grain when I " gave

up " grain ...

just a couple of rye crackers in the evening and a beer. The amounts of gluten

that

are in some vitamins or other pills, or sprouted barley, or malt syrup (which

seems to

be in everything!) is enough to do it. Also, *iodine* causes flare ups, for

reasons

I don't understand, but after having no gluten for a couple of years I still get

itchy if

I eat iodized salt.

Also, there are people who think that *any* IgA allergy can cause the same

symptoms

as gluten intolerance. It's just that no one has studied them much. But in young

kids, they do know that milk and eggs sometimes cause exactly the same problems

(including damaged villi). Anyway, the most common villians are corn, soy, eggs,

milk, yeast,

but technically it could be anything.

I'm not sure about dairy myself. I tested positive for IgA antibodies to casein,

so

I KNOW I react to it. But kefir *seems* to be ok, so I use it. Fermented casein

isn't the

same as " raw " casein, and it rat studies it is a LOT safer for the baby rats.

Anyway,

plain cream reliably gives me a migraine the next day, kefiili cream doesn't.

You can try stopping the dairy and see what happens, though I know how hard it

is (esp. if you aren't eating grains ... getting a kid to live on meat and

vegies isn't

easy unless you are Inuit, I think!). But if it is DH, it might linger for

months and months.

In the celiac group, a lot of people end up on heavy duty drugs to combat it, it

doesn't seem to go away easily. Could be those people ARE reacting to casein,

but

really, I haven't heard of *any* studies on that (or anyone saying they gave up

milk

to make their DH go away).

>3. am i freaking out, and really she's going to be fine in a while longer,

>i have to give the exposure she had to gluten time to heal up...?

If it were me I'd check for trace contamination (cupboards, toaster oven, malt

in

foods, etc) and make sure you are using non-iodized salt. I kept getting

outbreaks

that ended up being because of the toaster oven, the gluten gets impregnated

into

the sides, I guess, and comes out when you cook? I don't know, I got a new one.

Also I had to replace all my non-stick pans (which really I shouldn't have been

using

anyway). Also sugar kept being a problem, which ended up being because I had

used the flour scoop in the sugar container ... so I tossed the sugar, washed

the

container, and got new bags of sugar. Cheeses often contain gluten too, heck

if I know why but someone contacted a cheese manufacturer and they said

many of their cheeses do. I'd feel this was all kind of crazy except in the

celiac

groups everyone complains of the same problem, it's like an invisible poison.

And use lots of coconut

oil in stuff (if you aren't already) ... it seems to do wonders for the skin.

I've also

been supplementing my diet, and my son's, with dried anchovies, and THOSE seem

rather magical ... I'd love to make some sort of tasty snack I could get the

rest

to eat (maybe fried in coconut oil with salt and spices and nuts, as per the

recipe

I posted the other day).

Also someone I write to a lot privately has eczema and uses kefir on it ...

just slathers it on ... and that seems to work (she's tried a ton of

other things). I'd guess the " good " bacteria help. My hands get really

soft if I rub kefir on them, then rinse.

In my case my skin starts itching about 2 hours after a problematic meal.

Also my pulse rate goes up. So you can easily to a pulse test on her ... stop

the suspect food for a week, then take her pulse, feed her a big meal of

the suspect food, and take her pulse 1 hour then 2 hours later. That won't

tell you if it's an IgA allergy, just that she *reacts* to it. My daughter is

fine

with beef, but when we go out to a certain fast food joint and get a bunless

burger, her pulse goes way up (she can feel it and tells me) ... I'm assuming

there is gluten or something else in the beef, who knows? I just try to

avoid the place ...

-- The Glutenator

[Guest guest]

At 12:04 PM 3/23/2004, you wrote:

>

> >so here are my questions:

> >

> >1. do you agree with me so far?

>

>Yep.

big snip:

oh heidi. seriously. i love you SO much!

i'm not sure if you'll ever know how totally valuable you are to us!!

and elainie and dedy too, of course! thanks for all the stuff - i'm going

to digest and ruminate for a bit and then there will be more...

-katja

[Guest guest]

At 01:01 PM 3/23/2004, you wrote:

> if we do give up dairy, is kefir still

>ok? is ghee ok? (i would think those would both be fine).

>--------------------------------------------

>Hey Katja,

>

>I hope you find a solution to the skin problem your daughter has. I just

>wanted to say that ghee is casein free and easy to make. My son is casein

>free for digestive reasons. It took longer for us to see results with him

>off casein than off gluten. So you may want to wait a couple weeks to see

>if she responds to a dairy free diet, should you decide to try it. I

>realize it can be daunting when you already live grain free, but if she gets

>better through dietary intervention, you'll adjust. You can make nut

>cheeses and otherwise make it workable. Do y'all eat potatoes?

>

>Deanna

well, the thing is, she still nurses a ton. and i don't eat much at all in

the way of carbs. (except dairy). so i'm being totally stubborn and piggish

and i can't believe i'm putting myself ahead of my daughter here,

but....insert lots of whining.

and i keep thinking, well, it's getting *better* so maybe it was truly just

the grain....

-katja, who apparently has a priority problem.

[Guest guest]

if we do give up dairy, is kefir still

ok? is ghee ok? (i would think those would both be fine).

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

Hey Katja,

I hope you find a solution to the skin problem your daughter has. I just

wanted to say that ghee is casein free and easy to make. My son is casein

free for digestive reasons. It took longer for us to see results with him

off casein than off gluten. So you may want to wait a couple weeks to see

if she responds to a dairy free diet, should you decide to try it. I

realize it can be daunting when you already live grain free, but if she gets

better through dietary intervention, you'll adjust. You can make nut

cheeses and otherwise make it workable. Do y'all eat potatoes?

Deanna

[Guest guest]

i'm going at this in chunks while i absorb...

i was thinking, *if* it's gluten intolerance and she has no dairy symptoms,

then it should be fine. except that pesky part about any IgA allergin

having glutenous effects.

i wonder why she doesn't scratch at it? perhaps she has it mildly too? it

sure doesn't LOOK mild, but i guess next to some of those pictures, it does

after all...

it is DEFINITELY getting better. it's minimally 50% better than it was at

its worst. we've determined that means we should expect it to take at least

as long to heal as it's taken to get this far, but possibly longer...

we don't eat corn or soy, or yeast...so we just have eggs and milk to

check. *sigh* two favorites. she doesn't seem to show any symptoms to the

dairy (i keep coming back to that, don't i?) except the skin...i should

start charting very exact stuff about her skin and her food i think...the

part about " Could be those people ARE reacting to casein, but really, I

haven't heard of *any* studies on that (or anyone saying they gave up milk

to make their DH go away). " makes me feel a lot better...i need to think

about this some more...

as for trace contamination, holy cow. i KNOW i have some of the things you

listed...i had just not thought that far through. so far we were doing

great and seeing results for us, so ya know...i'm going to have to go

through the house again about grains...i've kept some things for guests but

i guess they're out the door now!

what about eating meat that ate grains? our pigs definitely had some

leftover sourdough...and she's had our pork.

we're aaalllll about the coconut oil though!! wheee!

dried anchovies...what about sardinnes? anchovy paste?

kefir rub: check! then she'll try to lick her arms: she llluuuuurrrvves kefir

pulse test! good idea!

[Guest guest]

Katja,

I started using PD during my recent pregnancy. It makes bowel movements very

efficient but that's the only thing I noticed from it. I use it every morning

mixed in with green juice/Pefect Food.

A lot of people really like it and have had fantastic results. I did notce

however that if I took to much it produced a detox reaction in the form of itchy

eczema on my foot (the very same place that many many years ago it appeared

when I lived in Colorado- which seemed to be an environmental trigger).

Elainie

[Guest guest]

> well, the thing is, she still nurses a ton. and i don't eat much at all in

> the way of carbs. (except dairy). so i'm being totally stubborn and

piggish

> and i can't believe i'm putting myself ahead of my daughter here,

> but....insert lots of whining.

>

> and i keep thinking, well, it's getting *better* so maybe it was truly

just

> the grain....

>

> -katja, who apparently has a priority problem.

Few months ago I gave up raw dairy except for raw yogurt, butter, cheese and

frozen yogurt I made once trying to figure out the constant mucus and crusty

feeling on my eyes in the morning...it worked. Yogurt and butter I have just

about everyday. Before I had a raw source I could only eat yogurt and butter

for dairy. Cheese and ice cream would slow my digestion for days. Dairywise

for me is if its raw, is cultured, has enzymes or is the fat... its ok.

Wanita

[Guest guest]

Katja,

I just read this and thought of you: " Topically applied, cod liver oil

contributes to faster wound healing and improvement in skin quality.39 An

excellent treatment for diaper rash and other skin conditions is cod liver

oil mixed with zinc oxide. And cod liver oil taken orally helps maintain

soft skin and minimize wrinkles. "

http://www.westonaprice.org/nutrition_guidelines/codliveroil.html

You obviously care very much for your family, and I think your priorities

are fine. Try not to beat yourself up too much over things you aren't even

sure about :-)

Deanna

[Guest guest]

ohh - good call! i was actually thinking about whether this would be

good/possible...just i hadn't gotten around to researching yet

i do beat myself up a little, i guess. i really depend on guidance from my

emotions, which while generally strongly accurate, is often painful. but

hey, " if it hurts, don't do that " has actually served me pretty well

the funny thing? today after each time i drank milk, i got a stomach ache.

hee! so i've decided not to immediately give up dairy, but to chart things

for a few days or a week and see. heidi said that people didn't find that

giving up dairy made the DH go away, but she also said that IgA stuff can

have gluten-affects. however, the DH is getting better on its own with the

lack of grain. sooooo...i'm going to gather more data.

we just changed over from CLO to fish oil, but i'm betting it would also

help on her skin. i'm going to try replacing one of her daily coconut

oil-lanolin-calendula slatherings with fish oil and see how that goes...

-katja

At 04:58 PM 3/23/2004, you wrote:

>Katja,

>

>I just read this and thought of you: " Topically applied, cod liver oil

>contributes to faster wound healing and improvement in skin quality.39 An

>excellent treatment for diaper rash and other skin conditions is cod liver

>oil mixed with zinc oxide. And cod liver oil taken orally helps maintain

>soft skin and minimize wrinkles. "

>http://www.westonaprice.org/nutrition_guidelines/codliveroil.html

>

>You obviously care very much for your family, and I think your priorities

>are fine. Try not to beat yourself up too much over things you aren't even

>sure about :-)

>

>Deanna

[Guest guest]

Hi Katja,

Can you point me to the right url to see those pics?

Thanks, deb

> so last night i was up late doing more research. finally, this

morning, i

> went back to the celiac site. one link i had *not* clicked on in

the past

> was the DH (Dermatitis Herpetiformis)link - i sorta filed it away

as " oh

> yeah, skin problems... " this morning i checked it out and the

photographs

> on the UK site - the milder photographs - strongly resemble what's

going on

> in both appearance and location.

[Guest guest]

At 05:06 PM 3/23/2004, you wrote:

>Hi Katja,

>

>Can you point me to the right url to see those pics?

>

>Thanks, deb

<http://www.dermatitisherpetiformis.org.uk>www.dermatitisherpetiformis.org.uk

hm. oddly centered. go go gadget formatting artifacts.

-katja

[Guest guest]

we don't use PD...

but fortunately i am certain this is not eczema...in fact, i had even

recorded in her health journal when this very first started that it started

with the little bumps, just like the DH site mentions. so i feel really

certain in the diagnosis (phew! it feels good to be certain finally!)

i've seen PD mentioned a lot - tell me about your experience with it?

-katja

At 04:02 PM 3/23/2004, you wrote:

>Katja,

>When I was vegan macrobiotic I had terrible itchy eczema.The interesting

>thing was that i did not eat any nuts/seeds/oils/or glten containing foods

>( no

>flour products, seitan, no oats, barley etc...) and no sugars ( not even

>fruit for many years). And the problem kept getting worse. I did eat miso,

>tempeh

>and wheat free tamari.

>I finally summed it up to a severe fatty acid deficiency/imbalance. After I

>lost my dietary dogma I started using butter and usung fish oil

>supplements as

>well as eating fish and eggs (this was before NT) and it went away. I

>couldn't

>believe it was that simple but since that time there are certain *trigger*

>foods that will create the same eczema (citrus, sugar, cow dairy in any form

>except butter, butter oil and ghee, grains and too many nuts). Do you use

>Primal Defense?

>

>Elainie

[Guest guest]

>i wonder why she doesn't scratch at it? perhaps she has it mildly too? it

>sure doesn't LOOK mild, but i guess next to some of those pictures, it does

>after all...

DH usually itches a LOT ... I just got tiny little bumps, but man did they itch.

I thought they were flea bites. But they only itched for an hour or two,

though the bumps would stay for days. I don't know of a way to tell

eczema from DH though, without a biopsy.

>it is DEFINITELY getting better. it's minimally 50% better than it was at

>its worst. we've determined that means we should expect it to take at least

>as long to heal as it's taken to get this far, but possibly longer...

Well THAT is a good sign! If it's getting better then you are probably on

the right track. DH does take forever to go away.

>as for trace contamination, holy cow. i KNOW i have some of the things you

>listed...i had just not thought that far through. so far we were doing

>great and seeing results for us, so ya know...i'm going to have to go

>through the house again about grains...i've kept some things for guests but

>i guess they're out the door now!

We don't allow guests to bring wheat in the house either ... the " crumb " issue

just drives me nuts. But I do serve dessert and pasta and pizza, no one really

notices ingredients (or asks, for that matter! Sheesh people are trusting. I

could

be using dried bug flour for all they know!).

>what about eating meat that ate grains? our pigs definitely had some

>leftover sourdough...and she's had our pork.

My chickens get wheat in their chicken food ... I switched to whole grain oats

but oats still have wheat in them sometimes. It's only a problem when

I don't wash my hands well (I stopped holding chicken food in

my hands at all now, I use a scoop). But otherwise it doesn't seem to be

an issue.

>we're aaalllll about the coconut oil though!! wheee!

>dried anchovies...what about sardinnes? anchovy paste?

Well, I love sardines and canned anchovies, but the canned ones

are a couple of bucks a can and sheesh, I'd bankrupt us at

the rate I eat them! One thing about the dried ones though is

they are more portable, and they have all the guts, brains, eyes,

bones etc. They are supposed to be a good flavoring agent

for soups when ground, but I haven't tried that yet.

>kefir rub: check! then she'll try to lick her arms: she llluuuuurrrvves kefir

Aha, so she IS getting probiotics! Good for you!

>pulse test! good idea!

And cheap!

-- Heidi Jean

[Guest guest]

At 08:37 PM 3/23/2004, you wrote:

>DH usually itches a LOT ... I just got tiny little bumps, but man did they

>itch.

>I thought they were flea bites. But they only itched for an hour or two,

>though the bumps would stay for days. I don't know of a way to tell

>eczema from DH though, without a biopsy.

what's the process of the biopsy? does it hurt? i would assume it would at

least to some degree...

you'd mentioned that celiacs can have trouble getting health insurance - i

wonder if this also carries over for DH?

-katja

[Guest guest]

>what's the process of the biopsy? does it hurt? i would assume it would at

>least to some degree...

I don't think it hurts much ... they take a tiny bit of skin and look at it

under

a microscope, under ultraviolet light. The IgA " glows " I believe.

>you'd mentioned that celiacs can have trouble getting health insurance - i

>wonder if this also carries over for DH?

Hmm. I dunno. People with DH are considered to " have " celiac (even though most

people with DH don't have serious villi damage, though all have " some "

villi damage, maybe not enough to show on the tests).

The health insurance thing is weird ... people with celiac who stick to

the diet are as healthy as anyone else (or more so, they often eat better)

but the belief is that the diet is " too hard " for anyone to actually stick

to. Once the new statistics kick in though (1 in 100 folks are diagnosably

celiac, a whole lot more react to gluten) I don't know what they'll do. Give

premium breaks for non-wheat-eaters, maybe?

-- Heidi Jean

[Guest guest]

I understand that some fungus glows, too. That's one way they

diagnose things that might be fungal infections.

>

> >what's the process of the biopsy? does it hurt? i would assume it

would at

> >least to some degree...

>

> I don't think it hurts much ... they take a tiny bit of skin and

look at it under

> a microscope, under ultraviolet light. The IgA " glows " I believe.

>

> >you'd mentioned that celiacs can have trouble getting health

insurance - i

> >wonder if this also carries over for DH?

>

> Hmm. I dunno. People with DH are considered to " have " celiac (even

though most

> people with DH don't have serious villi damage, though all

have " some "

> villi damage, maybe not enough to show on the tests).

>

> The health insurance thing is weird ... people with celiac who

stick to

> the diet are as healthy as anyone else (or more so, they often eat

better)

> but the belief is that the diet is " too hard " for anyone to

actually stick

> to. Once the new statistics kick in though (1 in 100 folks are

diagnosably

> celiac, a whole lot more react to gluten) I don't know what they'll

do. Give

> premium breaks for non-wheat-eaters, maybe?

>

> -- Heidi Jean

[Guest guest]

>I understand that some fungus glows, too. That's one way they

>diagnose things that might be fungal infections.

>

>

Could be. DH doesn't look anything like any fungus I've seen though ... it

starts with a tiny blister (think a pinprick, you can barely see them) which

itches like the dickens, and appears usually symetrically on both limbs.

In my case it appears very predictably 1 to 2 hours after a meal with gluten

or iodine.

One reason I started the WD was that it makes it easier to track this stuff ...

with only ONE meal to track (fresh fruits and vegies being very non-problematic)

it's easy to track the times.

I kind of think fungus is opportunistic ... we are ALWAYS inundated by fungus,

it is all over, but usually it doesn't take hold or bother us. The highest

levels

of fungus are in the forest, where a lot of healthy natives have lived. I think

fungus likes sugar though, and most Americans are part-time diabetics, having

high blood sugar levels at least part of the time.

-- Heidi Jean