Re: Celiac Disease???

[Guest guest]

In a message dated 6/23/2006 3:41:32 P.M. Eastern Standard Time,

rylan_becky@... writes:

Patti ~

Sorry to hear about the celiac. There is a boy Dylan goes to school with who

has downs/celiac/Sorry to & does quite well. There is no doubt it will take

some additional planning. I know this other little guy (13 t/o) is VERY picky

on top of it. They do okay though. It's such a big thing when it first

happens and you have to start planning & thinking differently about each and

everything that goes into your childs mouth, but (as we've learned from the

diabetes & I've seen with our friends w/diabetes & celiac) it becomes a routine

&

you eventually won't even think twice about it.

I know that probably doesn't help you much ~ but you're in our thoughts &

hang in there!

If you are interested I can forward this email on to them & see if they want

to correspond with you regarding dealing with it. Their little guy doesn't

have autism though.

Take care & keep us posted.

Becky

Hi Becky,

thanks for responding so quickly. I would welcome any advice -- I'm still

in the " overwhelmed " stage -- but yes, I will deal with it. I don't have a

choice. Besides we mom's have becomes experts at dealing with " things " .

But if they have any good web sites, that would be great.

thanks,

patty

[Guest guest]

Adam has been on this diet for almost a year. At the start it was hard to

find things and to know what to do. We make accomodations all the time so he

does not feel as if he is missing out. There are so many great products now.

There is even a gluten-free mall on line. Adam's favorite food was mac and

cheese, now he eats mac and chreese. Over time it will get easier for you.

michelle

[Guest guest]

HI Patti,

Andy was diagnosed with Celiac Disease last August.

We've had to make some changes, but there are

appropriate foods to substitute in for thsee things.

It's harder on the family, I think, because rather

than tell Andy he can't eat anything we're eating, we

all eat gluten-free.

I have some books I *recommend* for cooking and

getting food informatoin (particuarly shelley case/s

book, " The gluten free diet " (a list of resource) on

my website

(http://downsyndromenutrition.com/resources_software.htm)

It's work at first. I agree. But Andy's so much

healthier, that I am not complaining!

Also, there's a chapter in my book (the Down Syndrome

Nutrition Handbook) on Celiac disease if you need to

undrestand how it all works.

Hang in there.

Joan

--- hamburgpatti@... wrote:

> Hi everyone. I need help. just tested

> positive for Celiac Disease,

> and I'm freaking out about it. His favorite foods

> are cheeze-its, nutra

> grain bars, and pizza. He doesn't understand, and I

> don't even want to think

> about health food stores and special diets.

> We still have to go to the G.I. for further testing.

> But I just wondered if

> anyone else has this deal thrown into the mix.

> Patty.

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

[Guest guest]

I just KNOW I wrote a response, but it isn't showing

up. So.......

Patti, andy has had Celiac Disease diagnosis since

last august.

I " m going to wait and see if thte post shows up before

I tell you more!

I just want you to know ther are others!

Joan

--- hamburgpatti@... wrote:

> Hi everyone. I need help. just tested

> positive for Celiac Disease,

> and I'm freaking out about it. His favorite foods

> are cheeze-its, nutra

> grain bars, and pizza. He doesn't understand, and I

> don't even want to think

> about health food stores and special diets.

> We still have to go to the G.I. for further testing.

> But I just wondered if

> anyone else has this deal thrown into the mix.

> Patty.

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

[Guest guest]

Thanks guys, for info on Celiac. The cookbooks sound great and I think I'll

be picking them up shortly. I have calmed down a bit since my panic attack

this morning, but still I am pretty bummed that I have to deal with all of

this on top of everything else. It's nice to have you guys out there to " lean

on " . I really need a shoulder to cry on at times like this (my husband died

five years ago, and times like this I really, really need him). So thanks

for being there for me.

I have a question though. I ran into a friend in the grocery store as I was

looking at all the " healthy food " , feeling overwhelmed, and she told me that

they need to do a biopsy on him to confirm it. All I'm going on at this

point is the call from the nurse saying his bloodwork tested positive for

celiac. She said I still have to to the next step. I'm waiting for the Dr.'s

office to call with the appointment to the Ped GI. But his bowel movements are

not consistent and he goes from normal to mushy to constipated to back to

normal again???? He is very active and otherwise seems fine.

But my question is should I stop the gluton right now, or should I wait to

hear from the GI? This women also told me that he will have to be put to

sleep for the biopsy. How were your children tested>>????

[Guest guest]

There ARE many good products!

Pick up Case's book, The Gluten Free diet for

lists of vendors and where to find things. She's

great.

Amy's frozen foods makes a rice crust cheese pizza and

a spinach feta (but our store doesn't carry it) as

well as a really YUMMY mac and cheese (way too high

fat for me) and a vegetable lasagna and cheese

enchilada. She has lots of gluten-free products.

Kinicikinnik foods has WONDERFUL foods. donuts,

breads, OREO-type cookies....

and the gluten free pantry has really good angel food

cakes, etc.

Use rice pasta or QUinoa pasta for spaghetti and such,

use lots of rice

Teh tricks are in sauces and seasonings. No soy, no

teriyaki unless it's gluten free, etc.

The even have gluten-free beer...but he's probalby a

li ttel young for that.

later,

j

--- Mitch0519@... wrote:

> Adam has been on this diet for almost a year. At the

> start it was hard to

> find things and to know what to do. We make

> accomodations all the time so he

> does not feel as if he is missing out. There are so

> many great products now.

> There is even a gluten-free mall on line. Adam's

> favorite food was mac and

> cheese, now he eats mac and chreese. Over time it

> will get easier for you.

> michelle

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

[Guest guest]

Hi Patti,

Before you implement the diet, make sure the GI Doc

wants you to. They may want you to wait until after

the biopsy. Ask the nurse which tests they did. If

they did a tissue transglutaminase, there is no need

for abiopsy as it is a genetic marker test. The

biopsy just confirms what the blood tests say. It

used to bet he gold standard before the tissue

transglutaminase test.

If you can get a hold of my book, The Down Syndrome

Nutrition Handbook, there is a chapter on celiac

disease in there. It may help you understand it. The

symptoms really vary. I was just talking with

Case, who wrote " The Gluten Free Diet " and is

considered very knowledgeable (she is!) and she told

me that people without DS are having really varied

symptoms, too. So it's way underdiagnosed in America.

Constipation can be a symptom, Diarreha, you name it.

Teh incidecne of CD in DS is 10-12%.

The good news is that if your son has CD, you will

start to see improved health and he will have more

" educable times " than before. Honest. Get rid of

constant " bother " from teh food you eat and life is

better!

Teh breads are really really hard to make.I know

Sherbert does it, but I just can't master it, nor do I

have the time to try right now. So I use the

Kinnickinnick (sp) bread mix that you just add water

to. It's great. WE also buy Gluten-free buns by Ener G

Foods at New Seasons ( a grocery store here).

Where are you located?

You will find there are tons of resources. WE even

have a brick oven GF pizza place that delivers!!!

Just to let you know...Andy's just finishing his

evening snack of Gluten-free Angel food cake with

Gluten-free oreo-type cooking pieces stirred into it.

It's tasty!

Hang in there!

Joan

__________________________________________________

[Guest guest]

Thanks Joan,

You are right about waiting on the GF diet -- I spoke with the doctors

office and they said as long as he is not having symptoms, that I should wait

until I talk with the GI's office. I hate this " waiting period " of not

knowing.

But I guess, I'm not going to worry about it, and the idea of him thriving

more if he's on the diet is very promising.

Thank you so much for all your help. I'm glad to hear your son is enjoying

his cake and cookies. Life is good!

patty