Re: Re: How quickly can I get help?!?!

[Guest guest]

What is your procedure for using condiments at home? Any chance that a

gluten laden knife went into the gf peanut butter jar, or the butter

dish, or the mayonnaise? Manufacturers change ingredients -- have you

checked the labels of your favorite foods? sorry not to be more help.

Cheryl in Colorado

Maslan wrote:

Thanks -

All of the kids use Tom's brand toothpaste, the

orange-mango flavor - I checked so long ago, I'm assuming it's still

gf. Should I be more careful about his toothbrush touching the

others?? They're all in one cup by the sink......

I still use 's Head-to-Toe for all of

them, too. Ages 7, 5 & 22 mos. - it's just the easiest. If anyone

knows that it might not be safe, let me know!

Thanks!!

-----

Original Message -----

From:

pjs_21030

To:

SillyYaks

Sent:

Friday, August 27, 2004 1:05 PM

Subject:

Re: How quickly can I get help?!?!

This may be obvious to some, but have you checked toiletries

like

toothpaste and shampoo?

I've read posts, I think on this site where some of those products

can contain gluten. I've also read arguments that it's impossible to

absorb gluten through the skin, but you never know

paul

> Ok, the ground beef is the last straw!! I have been content in

reading along with everyone's stories & nodding my head, completely

relating to all of them. I feel like I'm repeating my son's story,

but I too obsessed about his growth & weight. We started his life

on

the "weight watch" trying to get him up to 10lbs., so he could have

heart surgery and then after the surgery to mark his recovery.

Before his dx (I think I just mentioned this last week, sorry) he

was a few months shy of his 5th birthday, wearing 18-24 mos. sized

clothes, & weighing roughly 25 lbs.(had for over a year). Our

pediatrician assured us there were still signs of growth, so not to

worry, but another mom suggested we check to see if he'd ever been

tested for Celiac & that got his ball rolling in the right

direction. After dx, he immediately improved, both in energy,

symptoms and growth. I actually started worrying about him getting

heavy!

>

> His bloodwork confirmed his improvements, so life was good. We

actually have 2 families that we're friends with who also have boys

around my son's age and who also have Down Syndrome. Both of those

boys were dx (within 3 mos. of each other) with leukemia (another

grand "side effect" of having DS is that these kiddos have like a

20x higher chance -than typical kiddos - of developing a specific

type of leukemia). I am happy to report that both of the boys

responded well to the chemo. (approx. 2 yrs worth!!) and are doing

well today, but remind me daily how lucky we are to just be dealing

with Celiac.

>

> That brings me to "life was good". In Dec. of last year I had the

pediatrician check his bloodwork because I was concerned about

behavior issues at school & didn't know what to credit them to -

DS,

new to "real" kindergarten (w/potential contamination everywhere!),

or diet mistakes at home. I am still NOT good with deciphering what

tells me what - IgG vs. IgA, etc. - but whatever # shows compliance

to the diet should have been down under 40, based on how his #s

trended since dx. That # was 53.something on Dec's test. Again I

was assured by ped. that this just reflected him having the disease,

not an actual problem w/diet. We just got results back from our

annual "road trip" to see his ped.GI and that same # came back at

173.something - I AM FLOORED, defeated, full of angst, everything

you can imagine!!

>

> WE NEED HELP - (probably mentally first)! I cannot find anything

in our routine, food items, cookware, etc. that is different now

than when we started this almost 3 yrs ago & his #s always

continued

to drop (he was checked every 3 mos. his first year after dx). The

only new element is Kindergarten (sorry to unnecessarily scare

anyone). I think they have good procedures in place - all the kids

in his class wipes their hands w/baby wipes when they come into

class each morning (in case anyone eats their breakfast in the car),

I've been told - hand washing after lunch, they wipe the lunch table

down before he sits to eat, he goes through the lunch line with the

other kids, but just to get a tray, and he puts his lunch from home

on it. No gluten-filled pasta projects in the classroom, that I

know of, and I think they check paints, glues, etc. for art class.

>

> Obviously the other issue is home - especially since the rest of

us are not gf.

> Other than a mother-in-law that just asked a few weeks ago - "He

can have a Pop-tart, right?" We don't have anybody around that

doesn't "get" that he has diet restrictions. They all mostly defer

to us, and ask what he can or can't have, or know we bring/have his

gf food. I have had another pow-wow with the dietician, and I've

gone & bought another new toaster, griddle, cookware (we looked

like

we were getting ready to send a child to college at Target). I

threw away sponges & Handi-wipes, only to use papertowels right

now. Should I just feed him bread & water - oh no, wait, I can't

do

that either!!! (I hope someone laughs with me) Rice & water maybe.

>

> I really just needed to VENT my overwhelming concerns with this

new situation. I'm not up for a debate about "bloodwork validity"

either - I just want my son to be ok. If you have any advice I

would love it!! If you've actually read this whole dissertation,

you're my new best friend! Thanks, as always, for being such a

great group of advisors and listeners. I always try to remember

things could be worse, unfortunately my dad just died of colon

cancer & all I can think is that I'm setting my son up for that

next

if I don't figure this out quick.

>

> My best to all of you & your families!!!

>

>

>

> RE: How quickly can we see progress?

>

>

> My Son with CD was born in the 10th percentile. He remained

there until just before his third birthday - that's when he dropped

completely off the growth chart. He wore the same size clothes for

two years!! The Pediatrician still didn't think there was a problem

until I brought in a pamphlet on CD and demanded testing for my Son.

Its been almost two years since he's been GF. He's just now starting

to shoot-up. We just had an appointment with the Pediatrician and

he's back on the growth chart! YAHOO!!

>

>

>

> Don't worry about your daughter..it may take a while. But I

would also make sure you thoroughly check all foods she eats, to

make sure she isn't getting gluten from somewhere. You can find

gluten in the strangest places...ground beef for example! Who

would've thought?!?

>

>

>

[Guest guest]

Make sure you also check hand soaps and/or gels. Many I've looked at

recently had various wheat ingredients in them. Vitamins can also be a

problem, as formulas can change and we seldom remember to recheck

ingredients after a while. Mystery Vit. E can be from wheat germ oil, etc.

Projects at school can hold many dangers: the glue they use, licking stamps

or paper, paints or playdoughs that are not gf, and so on. And many kids

simply swap food and never tell their parents about it (sometimes they will

when confronted with " proof " of the blood test results).

You might want to recheck the brands of things you are using (rather than

relying on ingredient lists, if you do that). Or get one of the home test

kits to check things like the flours, breads, pastas and vitamins you use

(they can be expensive, however).

Also, if you have any gluten items at home, it isn't unusual for kids to

sneak down at night and eat them. Of course, crumbs can be a problem, also.

I assume you use separate condiment containers, etc? Different colanders to

strain pasta? No touching of serving spoons between gf and non-gf items? No

wooden utensils that might get into the gf stuff?

At the least, I would cut out all brands that have had cross contamination

problems for a while (Lay's, Cape Cod, Kettle, etc). And double check any

deli items you buy, as many I've found now contain hidden soy and/or

wheat -- a problem not only if you buy those items, but for cc on the

slicers.

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

From: Maslan

I still use 's Head-to-Toe for all of them, too. Ages 7, 5 & 22

mos. - it's just the easiest. If anyone knows that it might not be safe,

let me know!

---

[This E-mail scanned for viruses by Declude Virus]

[Guest guest]

Lunchmeat has been my one big concern during this revelation. I usually buy Jennie-O from Sam's, but they have recently switched to a new brand of turkey, so I started buying the 's ham - looked at ingred., but didn't call to check, shame on me, right. If anyone has additional info. on this, I would appreciate it.

RE: Re: How quickly can I get help?!?!

Make sure you also check hand soaps and/or gels. Many I've looked atrecently had various wheat ingredients in them. Vitamins can also be aproblem, as formulas can change and we seldom remember to recheckingredients after a while. Mystery Vit. E can be from wheat germ oil, etc.Projects at school can hold many dangers: the glue they use, licking stampsor paper, paints or playdoughs that are not gf, and so on. And many kidssimply swap food and never tell their parents about it (sometimes they willwhen confronted with "proof" of the blood test results).You might want to recheck the brands of things you are using (rather thanrelying on ingredient lists, if you do that). Or get one of the home testkits to check things like the flours, breads, pastas and vitamins you use(they can be expensive, however).Also, if you have any gluten items at home, it isn't unusual for kids tosneak down at night and eat them. Of course, crumbs can be a problem, also.I assume you use separate condiment containers, etc? Different colanders tostrain pasta? No touching of serving spoons between gf and non-gf items? Nowooden utensils that might get into the gf stuff?At the least, I would cut out all brands that have had cross contaminationproblems for a while (Lay's, Cape Cod, Kettle, etc). And double check anydeli items you buy, as many I've found now contain hidden soy and/orwheat -- a problem not only if you buy those items, but for cc on theslicers.-----Original Message-----From: MaslanI still use 's Head-to-Toe for all of them, too. Ages 7, 5 & 22mos. - it's just the easiest. If anyone knows that it might not be safe,let me know!---[This E-mail scanned for viruses by Declude Virus]

[Guest guest]

Lunchmeat has been my one big concern during this revelation. I usually buy Jennie-O from Sam's, but they have recently switched to a new brand of turkey, so I started buying the 's ham - looked at ingred., but didn't call to check, shame on me, right. If anyone has additional info. on this, I would appreciate it.

RE: Re: How quickly can I get help?!?!

Make sure you also check hand soaps and/or gels. Many I've looked atrecently had various wheat ingredients in them. Vitamins can also be aproblem, as formulas can change and we seldom remember to recheckingredients after a while. Mystery Vit. E can be from wheat germ oil, etc.Projects at school can hold many dangers: the glue they use, licking stampsor paper, paints or playdoughs that are not gf, and so on. And many kidssimply swap food and never tell their parents about it (sometimes they willwhen confronted with "proof" of the blood test results).You might want to recheck the brands of things you are using (rather thanrelying on ingredient lists, if you do that). Or get one of the home testkits to check things like the flours, breads, pastas and vitamins you use(they can be expensive, however).Also, if you have any gluten items at home, it isn't unusual for kids tosneak down at night and eat them. Of course, crumbs can be a problem, also.I assume you use separate condiment containers, etc? Different colanders tostrain pasta? No touching of serving spoons between gf and non-gf items? Nowooden utensils that might get into the gf stuff?At the least, I would cut out all brands that have had cross contaminationproblems for a while (Lay's, Cape Cod, Kettle, etc). And double check anydeli items you buy, as many I've found now contain hidden soy and/orwheat -- a problem not only if you buy those items, but for cc on theslicers.-----Original Message-----From: MaslanI still use 's Head-to-Toe for all of them, too. Ages 7, 5 & 22mos. - it's just the easiest. If anyone knows that it might not be safe,let me know!---[This E-mail scanned for viruses by Declude Virus]