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From:
Patrick Koenig <[log in to unmask]>
Reply To:
Patrick Koenig <[log in to unmask]>
Date:
Tue, 9 Apr 2002 09:15:21 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

Well, I got quite a response to my questions, over 80 people have
responded so far. That didn't surprise me, but what did surprise me was
the thought and time people took to respond. There were extremes in
opinions from not allowing gluten anywhere near home to thinking it
unfair to restrict the whole family from gluten. The responses where not
judgmental of what others do, just explanations on what works for each
person and why. I was pleasantly surprised.

I asked this questions because we have 4 children, 2 Celiac. One whose
been on the diet 13 months(2 1/2 y.o.boy), one that's been on the diet 7
months(10 y.o. boy). Our 2 1/2y.o. was very symptomatic before
diagnosis. He's not quite old enough to verbalize if he's having a
stomach ache. He gets occasional bouts of diarrhea but no serious
symptoms like he had prior to diagnosis, including neurological
problems. We're still trying to find what works for us, your responses
reinforced what we've done.  We've read and basically follow advice from
Dana Korn's book, "Raising your celiac child". Everyone must find what
works for them.

Now for the summary:
Not everyone answered all the questions. Some people just gave a general
statement about how careful they are.
I was impressed, a lot of people said they never cheat, only 3 people
admitted to cheating on occasion. That wasn't a question I specifically
asked.
1. Do you allow gluten in your house?
        59 yes-
        13 no -several of these people lived alone or both members of the
family were eating GF.

2. Do you eat food made on non dedicated lines?
        46 yes Some people who are symptomatic Celiacs said that if a food made
on non dedicated lines bothered         them they would avoid that particular
food. Quite a few people said they eat Frito Lay products       without
problems.
        13 no Many of these people said that they are so sensitive, they eat
very few processed foods and    then only if they are made on dedicated
lines.

3. Do  you eat in Restaurants?
        63 yes Most said they did without much trouble. Steak, chicken.
potatoes, salad mentioned a lot. But    also, Thai, Vietnamese resturants
were mentioned by several. I need to find out more about these  places.
        11 no Again most people who said they never eat out had too many
problems with reactions and it wasn't   worth the risk.

4. Have you had follow up tests showing that your diet was doing the
job?
        28 yes, yearly blood work was negative or repeat biopsy showed return
to normal villi.
        Many said they never had follow up tests done either because
improvement in their symptoms was enough        proof for them and their
doctor, or because they were never "officially" diagnosed in the first
place.
        4 no a few said their blood work was still mildly positive and they
were working to get rid of any  hidden gluten.

I will summarize again if I get more responses. Thanks for all of you
who took the time to respond, and especially those of you who shared
more specific info, which I've included below.

Happy Spring!
Beth

A great guide to eating really
healthy, and great I might add, is the SCDiet in BREAKING THE VICIOUS
CYCLE.
Everyone with a digestive problem also suffers from intestinal bacterial
overgrowth which can give many of the same nasty symptoms of Celiac
Disease
and damage the intestines causing malabsorption of nutrients.  This diet
is
not only gluten free, it's about starving the bad bugs and increasing
the
good ones to optimize digestion and regain health.  All Celiacs need to
take
a look at this way of eating . . . which is truly less stressful and
more
beneficial than constantly checking the status of processed foods.
You'll
also have much better tasting foods!

It's more expensive, but the peace of mind is worth it
for me.  It took me (non celiac) about 3-4 weeks to
adjust to the diet.  But now I only eat gluten when I
am out of the house and in restaurants with my family
I either eat gf out of respect for them.

I have not had trouble with things like Lay's potato chips, etc.  It
seems a bit hysterical to me to worry about this.  There has to be a
balance to life - and I like to claim every convenience food I can (i.e.
chips).  I cook an awful lot from scratch, but I like to think I am
being
reasonable.

I do allow gluten in the house, but try to keep it away from my food. I
have my own corner of the kitchen with my toaster (into which we only
put gluten free items), my part of the freezer and my part of the
refrigerator. I try to avoid g-f foods that are not made on a dedicated
line, but sometimes succumb to temptation for a treat.


I am careful but not compulsive; Ann Whelan and  Gluten Free Living have
been my guide.

I allow my husband to keep gluten breads and snacks available. We have
separate toasters, and he's very careful to avoid
contaminating my gf foods or food prep areas. If he's afraid he did so
accidentally, he always warns me! I put ladybug stickers on gf
margarine, spreads, etc., and some things we just use separate brands.

I try to avoid cross contamination, but I do eat Fritos and Lays chips
with
no reaction - and I do react if I get gluten.

I do allow gluten in the house.  I feel "Why punish the rest of the
family
by neglecting them of the foods that I cannot have"

We have gluten in the house but only other family members favorite foods
that have
a low chance of accidental consumption and low chance of contamination
such as a
box of Raisin Bran or a bag of Goldfish crackers.  My husband's previous
favorite
foods are not allowed such as Fig Newtons because of the cruelty of the
temptation.

I definitely don't ingest any
gluten knowingly. I have not "cheated" once. But I am
probably not as careful as some. First off, I eat out
sometimes, and that's always risky. I explain my
requirements and hope for the best. Most times it works out
fine. I never eat at fast food chains. I choose local
restaurants where the food is made fresh to order.

We keep a separate pantry for Max's foods.  I've followed all the
suggestions from Danna Korn's book about
separate colanders, separate butter and condiments, etc.  My son is
doing great on the diet and is thriving.  He's not so verbal yet
so it's difficult to know if he's gotten something by mistake - except
thru the occasional diahrea.  We eat at restaurants sometimes
but always with explanations and fingers crossed.

Yes, I allow gluten in the house.  I couldn't imagine a lonelier
existence than one of not having family members or friends visit, and
serving them the foods they enjoy.

My whole house is gf because there is just me and my husband.  We
accidentally discovered that he feels better gf so he is on the diet now
also.

I am the celiac....our house is totally celiac.  We have always had a
rule that if
one member is on a special diet...EVERYONE is on that diet.  Goes back
for over
fifty years, that rule

Of course(I allow gluten in the house) I would never be so self-centered
and rude to my family as to force
them to center their lives around my disease

I have the CD in our family, I allow gluten food in our house, I eat in
restaurants and seldom have any problems with finding something I can
eat on
the menu. I know which kind of restaurants to avoid, however.
 I made most of my food from scratch and seldom waste time looking for
mixes
and prepared food.
I was biopsy diagnosed and had several over a period of two years five
years
ago while the doctors were trying to find the cause of another illness.
Each
time they checked my villi and they were fine.
If I make a mistake I know the results of my mistake the next day and
seldom
make a mistake.

How careful are you? VERY - we treat gluten as if it were rat poison!
Do you allow gluten in your house? RARELY, when we have house guests.
But then ALL their food is segregated, a big "X" is marked on the top of
their margarine, etc.  All uses of Mayo, mustard, jam, etc must be
approved
by the "Gluten Nazi" (that's me!) to avoid contaminating our food and
kitchen.   We never have problems with our guests, as our families and
friends DO understand the seriousness of this disease.  Many saw my
husband
go from bad to worse to near death.  They are all warned of the rules
before
being granted permission to visit.  Sound severe?  Yes, it is.  My
husband is
my number one priority.  I cook and bake almost everything from scratch,
and
I also eat gluten free, for simplicity, and to see if the stuff I am
providing for him is good or not.

* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *

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