Re: Gluten Intolerance again

[Guest guest]

----- Original Message -----

From: " Steph "

So, I believe I do have gluten issues. My question is, do I go and get

tested, just to be sure, or do I just decide that I have gluten issues and

stop eating it - knowing that I can't get tested later?

>

Steph, I always advise people who suspect GI to get tested before going gf,

even though it isn't mandatory. The reason is that once you go gf, to go

back and retest is to deal with skewed results and they might not be

accurate....the intestine replaces itself every 72 hours and healing begin

in that time period. So if someone is borderline, going gf first can yield

a false negative.

That said, the reason that I suggest testing first is that many people don't

have the discipline to do the learning curve and stick with the changes

necessary if they don't have objective, scientific data to refer back to.

Plus it silence sceptical family members. Going gf requires a paradigm

shift in dietary thinking that often needs the reinforcement of test results

to shore up a flagging sense of discipline....especially when there is

temptation. Someone on this list who is already thinking outside the box

might not need that kind of " support. "

> Also, what is the best way to tell people that we don't eat gluten? >>

I always bring our own snacks and ask everyone not to feed my kids.

<<Like when my kids go to church and homeschool co-op where they have cookie

and cracker snacks (don't even get me started on that!) ? >>

<nodding> I always bring our own snacks and ask everyone not to feed my

kids. I also teach my kids not to eat anything without checking with me

first. Now they don't eat anything that doesn't come out of their own snack

bag.

>>Do I say, they're celiac, or just that they shouldn't have gluten? I

don't want to have to spend an hour explaining it all the time. >>

Which is why I always bring our own snacks and ask everyone not to feed my

kids. The learning curve is quite steep and I haven't found a short way of

explaining it that covers all the bases. So many people will say, " But this

goldfish cracker isn't wheat....it's flour! " " But this graham cracker isn't

wheat....it's graham flour! " And that doesn't even cover the hidden types

of gluten like the malt sweeteners in things like Kellogg's Rice Crispy's.

My older children can articulate their food issues to adults (and I've

drilled into them that just because an adult offers it, doesn't make it safe

for them to eat) but my 18 mo old hasn't a clue. I'm going to buy a " Don't

Feed the Bear " shirt for her to wear when we're in " mixed company. "

I guess that's why I was thinking the tests would be good - then I would

know definitively. Just thinking out loud.

>

I'm a big fan of tests. I've found that there is always a weak moment, a

moment of doubt and second-guessing, or at the very least something to show

to sceptical family members (who probably have gluten issues of their own,

since it is genetic and don't want to hear about it who think that this

is just another wackjob diet that we are haring off on. My favorite celiac

test is http://www.enterolabs.com

HTH!

--s

[Guest guest]

>I've been reading _Dangerous Grains_ - which btw I don't like the title of. I

kept thinking it was one of those scare tactic books, but it really isn't like

that inside. But, I digress...

I agree. I think the editor chose the title! The authors are very calm

scientific types,

who would probably name it something boring.

>I have many of the associated issues - anemia, low bp, heartburn/GERD, asthma,

autoimmune thyroid, short 5th finger (kind of a funny sign of food issues IMO

:-P), infertility/miscarriages, history of related issues in my family - and

basically nothing else I've tried over the last 2 1/2 years has worked. So, I

believe I do have gluten issues. My question is, do I go and get tested, just

to be sure, or do I just decide that I have gluten issues and stop eating it -

knowing that I can't get tested later?

I agree with Suzanne that testing is really good to help a person

stick to the diet. I did get tested, mainly because I was beginning

to think I was crazy. However, the rest of the family just decided

they felt better without gluten and my dh did not want to do

any testing. He did go out once and have a big lasagne dinner,

and the results cured him of wanting to do it again.

>Also, what is the best way to tell people that we don't eat gluten? Like when

my kids go to church and homeschool co-op where they have cookie and cracker

snacks (don't even get me started on that!) ? Do I say, they're celiac, or just

that they shouldn't have gluten? I don't want to have to spend an hour

explaining it all the time. I guess that's why I was thinking the tests would

be good - then I would know definitively. Just thinking out loud.

I just tell folks that we are allergic to wheat. Folks understand

allergies, and actually they get more careful than if you use something

like " gluten intolerant " ... they picture something like peanut allergy

where you could die quick. IMO gluten intolerance is basically an

IgA allergy (as opposed to an IgE allergy, the usual kind). No one

has asked me for proof they are allergic to wheat ... I guess it is

common enough for parents to notice the kids react to some foods.

One medical person asked me what happens if my son gets wheat ...

I said the last time he got some he got hives (which is true, though AFAIK

hives aren't from the IgA style reactions). Interestingly, since folks

are getting more savvy, sometimes when I say to, say, a waitress that

we are " allergic to wheat " they'll say " Oh, are you gluten intolerant? "

and then they'll have the whole rundown of what foods are ok at

that restaurant.

I told the kids originally they could eat whatever they wanted outside

the house, but they also noticed they felt bad when they ate

those things (esp. canker sores, they hate canker sores!). So then

I started making special foods for them. But my daughter decided

she really didn't like cupcakes all that much anyway, so we stopped.

At birthday parties we end up bringing a cake and often sharing

it with other folks too ... it does get awkward though. Sometimes

I end up just bringing the " main " cake .. homemade cakes are

really better than most of the storebought ones. As for cookie

and cracker snacks ... we've gotten into the habit of using fruit

for a snack, and jerky, which is better for any number of reasons.

The kids don't have the blood sugar swings that make them *starving*

any more, so skipping a meal isn't as big a deal, but in a pinch, there

are some GF chips and crackers one can eat at parties (Fritos, Cheetos,

Pirates Booty, rice crackers ... probably cross-contaminated, but not

enough to really affect the kids). Raw fruit and vegies are being served

at more social gatherings lately too.

I tried explaining it to my relatives and mostly they thought I

was crazy. Lately as they've seen the health results though

they are more like " I don't understand what you are doing,

but it seems to be working! " . My dh looks 10 years younger,

and has lost 20 lbs, and the kids are really much healthier too.

Most of the relatives on both sides have various and

sundry health issues: we don't. It does make me sad though ... there

are several cases of MS in the family, which I'm convinced

are gluten-related, and all kinds of gut problems, but they

won't listen to anything unless an MD says it.

Anyway, your thinking aloud has really hit on the crux of the problem:

eating GF is no big deal EXCEPT for the social issues. It's kind

of like eating kosher was to keep the Jewish people " apart " ...

eating GF tends to be socially isolating, since food is such a

central part of socializing. The only consolation I can offer is

that in a few years this will be a standard kind of thing (and more

and more foods will be GF) now that it's beginning to reach

the mainstream press and the NIH is making a bigger deal out

of it.

Our solution has been to make our house more and more

the focus of our activities, and to invite folks over here.

We have " movie nights " with a big theater screen, and lots

of good meals ... the kids have all kinds of projects they

do, and they do visit friends (bringing food, usually!). But

we've gotten out of the habit of going to the mall for

entertainment, eating out for a date etc. Instead we have

book time (I read to the family while they are eating, as

I tend to eat while I'm cooking ...), craft time, gardening,

making jam, playing games, having friends spend the night,

raising chickens.

>

Heidi Jean

[Guest guest]

At 09:43 AM 9/18/2004, you wrote:

>I've been reading _Dangerous Grains_ - which btw I don't like the title

>of. I kept thinking it was one of those scare tactic books, but it really

>isn't like that inside. But, I digress...

>

>I have many of the associated issues - anemia, low bp, heartburn/GERD,

>asthma, autoimmune thyroid, short 5th finger (kind of a funny sign of food

>issues IMO :-P), infertility/miscarriages, history of related issues in

>my family - and basically nothing else I've tried over the last 2 1/2

>years has worked. So, I believe I do have gluten issues. My question is,

>do I go and get tested, just to be sure, or do I just decide that I have

>gluten issues and stop eating it - knowing that I can't get tested later?

i generally advise people to just go gluten free. the proof is in how you

feel. but if you have the money and desire to be tested, sure. just know

that if they come back negative, that's not necessarily the end of the story...

>Also, what is the best way to tell people that we don't eat gluten? Like

>when my kids go to church and homeschool co-op where they have cookie and

>cracker snacks (don't even get me started on that!) ? Do I say, they're

>celiac, or just that they shouldn't have gluten? I don't want to have to

>spend an hour explaining it all the time. I guess that's why I was

>thinking the tests would be good - then I would know definitively. Just

>thinking out loud.

i advise people to be quite firm even if they aren't tested. it's no one's

business how you got diagnosed - whether it was a biopsy or trial and

error. so firmly tell people that your child has celiac (or say that

they're gluten intolerant - either one), and yeah. you're going to have to

explain it all the time. that's just the way of it. whether you get the

tests or not, you have to explain it!

-katja

>Any advice would be appreciated. Thanks again!

>Steph

>

>

>

[Guest guest]

Thanks Heidi, Katja, and Suzanne for the advice on testing and what to say to

people!

I ordered the tests for all of us from enterolab.com.

Another question: If we are gluten intolerant, do I have to stop using the

wheat based cat litter (swheat scoop)?

Oh, yes, and how do you know if extracts are safe? Like vanilla extract, etc.

I usually get mine from Frontier, the organic ones. I noticed that the chocolate

extract says " gluten free. "

Thanks! Steph

[Guest guest]

>I ordered the tests for all of us from enterolab.com.

Wow, a big step!

>Another question: If we are gluten intolerant, do I have to stop using the

wheat based cat litter (swheat scoop)?

It's a personal decision ... our animals are GF except the chickens (I need to

do

more research there) out of self-defense, I get their food on my hands

and get sick from it. The stuff gets in the air too, and I breath it. So if it

was me, I'd use another litter. But I've never had a cat that would use

a litter box, so I haven't had to face that question.

>Oh, yes, and how do you know if extracts are safe? Like vanilla extract, etc.

I usually get mine from Frontier, the organic ones. I noticed that the chocolate

extract says " gluten free. "

The latest thoughts are that grain alcohol is ok, because 1. It's usually made

from corn and 2. It's very distilled. Some caramel colors though are not GF.

McCormick's spices and vanilla are generally ok though, I don't know about

Frontier. Usually when you have a question though, you can Google on something

like " Frontier vanilla gluten " and get some hits, or call the company. The

gluten-free groups talk about this stuff a lot too, and come to consensuses.

Some products marked " gluten free " are not, and usually some folks are reactive

enough they can tell. When tested, one study found 16% of GF products contained

gluten. It only takes one gram of gluten a day to prevent healing. Soooo ... I

tend to avoid products except the basics. Vanilla extract is basic though!

Apropos of that, at lunch today my daughter said " Mom, it's a really good thing

we are allergic to wheat! " . " Why? " I asked. " Because if we weren't you never

would have learned to cook so good and make such good bread " . Heh heh. She was

scarfing a turkey sandwich at the time. She's right, tossing the packaged stuff

makes life a lot yummier.

>

Heidi Jean

[Guest guest]

----- Original Message -----

From: " Steph "

> Thanks Heidi, Katja, and Suzanne for the advice on testing and what to say

to people!

>

> I ordered the tests for all of us from enterolab.com.

>

Keep us posted!

> Another question: If we are gluten intolerant, do I have to stop using

the wheat based cat litter (swheat scoop)?

>

I would, but I have small children who get into things. Still, I think that

the dust could be an issue. I keep a " kosher " kitchen and I can see how

x-contamination can happen.

> Oh, yes, and how do you know if extracts are safe? Like vanilla extract,

etc. I usually get mine from Frontier, the organic ones. I noticed that the

chocolate extract says " gluten free. "

>

> Thanks! Steph

IIRC, Frontier extracts are gf, but I'd encourage you to follow up, since it

has been over a year since I've been able to use these (corn allergies).

These days I make my own extracts from potato vodka.

--s

[Guest guest]

I recently switched from Swheat Scoop to Dr. Elsey's if you are looking

for an alternate. I got it at Petsmart and I love it. I never really

liked Swheat Scoop as it is too dusty and I don't like to think about

how much dust my cats were inhaling every time they used the box.

Jo E.

> Another question: If we are gluten intolerant, do I have to stop

> using

the wheat based cat litter (swheat scoop)?

>

I would, but I have small children who get into things. Still, I think

that the dust could be an issue. I keep a " kosher " kitchen and I can

see how x-contamination can happen.

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