Re: just a vent. . . .Rast test

[Guest guest]

What is that? He just had a blood test. I'm a little leery of the intestinal

biopsy, sounds so invasive.....but we may not have any other choice, because I

know it's from the wheat, but somewhere down the line, someone is not going to

go on my word and I'll have to put up with allergic reactions.

Loriann

Wife to Dewight

Mom to , 10 years, DS-ASD, ADHD, ODD

And , 16 months and Strong Willed

[Guest guest]

In a message dated 11/15/00 1:31:46 AM Eastern Standard Time,

hsmyangel@... writes:

<< What is that? He just had a blood test. I'm a little leery of the

intestinal biopsy, sounds so invasive.....but we may not have any other

choice, because I know it's from the wheat, but somewhere down the line,

someone is not going to go on my word and I'll have to put up with allergic

reactions. >>

Loriann,

To do the full allergy testing requires various needles. Our Alison (8,

NDA) had hives for a full year when she was a year old. My ped had said at

the time that he didn't want to do testing on one so young and that we would

wait until she was 2 years old. But by that time, they stopped. They have

come back sometimes, and my personal opinion is that it's a reaction to

extreme change in temperature. It's only happened a few times, when we have

had extreme drops to cold weather; didn't happen when temps went up.

Maddie had the intestinal biopsy. I'll be honest; it's no picnic. She

was quite young when we did it and she bounced right out of it with no

problem. But the whole IV thing, and waking up from the drugs is a nightmare

for us. Some kids are fine with it, but Maddie goes haywire from the drugs.

She's had two endoscopies (1 biopsy), a sleep study (which though not

invasive, was WAY worse than the endoscopies), tubes, and two MRI's, so she's

been put under numerous times. I hate it, but it was always necessary.

Donna

[Guest guest]

In a message dated 11/15/00 1:25:16 PM Eastern Standard Time,

hsmyangel@... writes:

<< He's not had very long to damage those cilia (or whatever they're

called) >>

They're called vili. We were so sure Maddie had celiac because of her blood

work and her behavior and mood. Even when the doc did the scope he said he

thought he saw flattening of the vili. But when the biopsy came back,

there was no celiac. The reflux was causing the behaviors and moods. As far

as the bloodwork goes, I have to say that none of her bloodwork ever seems

to be in the right range. Loriann, I was just about ready to put her on the

diet. I joined the celiac listserv, read up on celiac, and was about to buy

a bread machine (even though I'm a cook and prefer doing things like that by

hand...LOL). We had a different problem, but if I saw results like you have,

I'm afraid I'd have to stick with it. I understand your hubby though. What

if it is something else, like allergies. Talk with your doc and see what he

adises.

Donna

[Guest guest]

,

Thanks for the reply. I'll bring the Rast test up to his doctor. 's

reaction is only in the diaper area when he has a bm. It doesn't affect his

behavior like it does . , I can tell within 20 minutes that he's had

something off his diet from the way he goes hyper and acts higher than a kite.

The problem was with , he had been on the diet for about a week, maybe

slightly more when they did the blood test. I asked if it would matter and they

said no. I may take him off the diet until the appointment on Friday.

Just keep us in your prayers. If the little bit of gluten that's in soy sauce

can cause a reaction for the next bm, I'm going to be going through sheer he**

over the next two days.

Loriann

Wife to Dewight

Mom to , 10 years, DS-ASD, ADHD, ODD

And , 16 months and Strong Willed

[Guest guest]

Lori,

The celiac blood work is for IgG, IgA, and some other things. RAST is for

common foods.And I think there are several panels for this. We just had

this done on and Essie. I have the test in front of me. 's was

egg white, milk(does not say casien or lactose), codfish, wheat, peanut,

soybeam. Essie's was for trees, mold, mildew, dog and cat dander, egg

white, wheat, milk, oats, peanut and soybean.

What I really wanted on was corn--so there must be another RAST panel.

Plus we did Celiac on , Essie and Sam. I think is celiac!! We

have a big dr. appt Saturday for eter, Sam and Essie, so will have my

answers then.

Yesterday, I think, you wanted a positive dx for insurance to help with the

cost of food(reimbursemnts). I called CHAMPUS--they laughed at me!!@#$%#

And it is very complicated to keep these records--but not impossible!

Husbands---if your children are celiac?sensative to gluten/casien it will

not take long for them to react. For us wheat takes about 20 minutes.

Understand casien will be reactive in 3 or 4 days. If DH sees that

difference he should want you to do the diet right away. Just do it when he

is going to be home for a few days.

We also opted NOT to do the biopsy on JJ. And will not on either.

It's just too much. But you need the dx, and I understand that. At the

conference we went to at Stanford we heard that you need a dr. with celuac

experience cuase many GI dr misdx even with the biopsy. And the biopsy

needs to be done on the top of the intestine where the stomach dumps into

the intestine. That is where is most damage will be, and where the cancer

will start.

Good luck, I know what you are doing through.

& Garry, parents of (10 ds), (9 ds/g-tube), JJ (6

ds/autism/celiac), (6 ds), and Esther (3 ds). All adopted.

[Guest guest]

Does JJ get physical problems, or behavioral?

Since has only been on table food for a little less than a year, maybe

that's why it didn't show up? He's not had very long to damage those cilia (or

whatever they're called).

, on the other hand has only been ON the diet for 10 months. His might

still show up positive on the intestinal scan. He was so addicted to anything

that ended in a vowel...you know, spaghetti, ravioli, tortallini, etc.

Loriann

Wife to Dewight

Mom to , 10 years, DS-ASD, ADHD, ODD

And , 16 months and Strong Willed

[Guest guest]

Lori,

Casien stays in the system for only about a week. But gluten--who knows.

Some have been tested after 7 YEARS on the diet and still test positive.

I'll keep you in my thoughts. I know what JJ's like with slipups.

& Garry, parents of (10 ds), (9 ds/g-tube), JJ (6

ds/autism/celiac), (6 ds), and Esther (3 ds). All adopted.

[Guest guest]

JJ has both behavioral and physical. Bangs his head on the floor, pulls

hair, bites, cries, etc. His cheeks get red, diaper area gets red, and he

did have a bloated tummy pre-diet. This is with ONE slipup! And I know if

we took him off the diet his bottom wuld be raw all the time like before.

I still use stuff that ends with i! I like Pastato brand. This are made

with potatoe and rice, gives him a little more calories.

& Garry, parents of (10 ds), (9 ds/g-tube), JJ (6

ds/autism/celiac), (6 ds), and Esther (3 ds). All adopted.

[Guest guest]

nathan had that RAST test done when he was a baby, soo sick with mucus all

the time, but allergies came back neal to none then, and docs dont want to to

it agin now even tough he is older, they just draw blood and test it to all

the allergens in the lab, much better then all those pricks o nour arms and

back, and even legs. shawna.

[Guest guest]

OK, now I know what test you're talking about . My neighbor, when I was in

highschool, had that. I don't think I'd want to put my baby through that. It

was probably hundreds of little pin pricks with different things on them, then

watch for reactions. Am I right? Well I guess we find out this afternoon.

has an appointment at 1:30.

Loriann

Wife to Dewight

Mom to , 10 years, DS-ASD, ADHD, ODD

And , 16 months and Strong Willed