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joalabbs Newbie
joalabbs
Posted

Hello, My name is Stephanie and two of my three children were just diagnosed with celiac disease. I am so confused and upset. I dont know where to begin with all of the information that I have. I am afraid to feed them for fear that I will be giving them something that will make them sick. I will gladly take any suggestions that anyone has. My son is nine and he was diagnosed the day before thanksgiving. His doctor recommended that the other two be tested. They were tested on Dec. 26. My daughter's blood test came back postitive and she sees the the GI specialist on the 29th. I am very confused. HELP :(

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Guest jhmom
Guest jhmom
Posted

Welcome to the board Stephanie. I understand your concern of feeding your children something wrong but I'm sure you will do fine. :)

Until you become confortable with the disease and how to feed your children you could always stick to simple things like: meat, veggies and fruit, although depending on their GI symptoms I would not give them too many.

Some suggestions I have for you is to read everything you can about Celiac Disease, search for gluten free food (in the stores or online) and read every label before serving it to your children (to check for hidden gluten). On this site there is a Safe Food List and a Beware of list. I hope this helps :) This is a wonderful support group so don't be afraid to ask questions, that's what we are all here for.

Here are some links that have helped me since my diagnosis last Sept

Open Original Shared Link

www.kinnikinnick.com

Open Original Shared Link - has a nice gluten-free food list

These are only a few, but it's a good start.

granny Rookie
granny
Posted
Hello, My name is Stephanie and two of my three children were just diagnosed with celiac disease. I am so confused and upset. I dont know where to begin with all of the information that I have. I am afraid to feed them for fear that I will be giving them something that will make them sick. I will gladly take any suggestions that anyone has. My son is nine and he was diagnosed the day before thanksgiving. His doctor recommended that the other two be tested. They were tested on Dec. 26. My daughter's blood test came back postitive and she sees the the GI specialist on the 29th. I am very confused. HELP :(

Stephanie,

Welcome to the board and know there is a lot of great info here. I agree with Stacie, the sites she listed are great. I made copies of the safe and forbidden foods and carry mine right into the grocery store and check everything!

I was thrilled to find Open Original Shared Link because it contains so much by brand name and that helped me since we don't have health food stores here.

I mean there are 9 pages of candy we can have!!! This thrilled my granddaughters! I can still eat candy with them! Granny

DLayman Apprentice
DLayman
Posted

The absolute best books you can get are: Kids with Celiac Disease by Danna Korn and Wheat free Worry Free by Danna Korn as well. These should be carried by any local borders books, I reccomend buying them..

Some websites that go along with these..

Open Original Shared Link

Open Original Shared Link

And there is a Celiackids group on Yahoo as well.

I have also read Breaking the Vicious Cycle by Elaine Gotshall This you should be able to get through the library you might want to read it first before buying..

Some sites to look at with this..

www.Pecanbread.com there is also a yahoo group by this name

www.Breakingtheviciouscycle.info this has a few chapters of the book online, including the one on celiac.. but I reccomend getting and reading the whole book it really aids in the understanding of the chapters.

www.scdrecipe.com

Also another book is Incredible Edible Gluten-Free Food for Kids

150 Family-Tested Recipes

By Sheri L. Sanderson

I HIGHLY reccomend that you go out and get the Kids with celiac disease book TODAY!! It deals with alot of what you are feeling right now! It will help you calm down and focus on the task at hand which is getting your kids on a good diet that will help them.

And any questions no matter how silly you think they are come here and ask them!

Denise

seeking-wholeness Explorer
seeking-wholeness
Posted

Hi, Stephanie!

I second Denise's recommendation to read Kids with Celiac Disease; it will be a big help to you! Another list of gluten-free foods that you should be able to find at a regular grocery store is Open Original Shared Link.

You must be quivering with stress and worry right now! A diagnosis of celiac disease means a major lifestyle change, and when it affects our children we have an understandable tendency to blame ourselves for every "accident" they suffer. Remember that the gluten-free diet takes AT LEAST a year to master! Your children will have accidents, both at home and away--but that doesn't make you a bad parent! The journey of a thousand miles begins with a single step, which you are taking. Congratulations!

  • 2 years later...
vampella Contributor
vampella
Posted

I have to agree with everyone on the books, they are great. Also this site is AMAZING!! the people here are so great and helpful...kindest people I've meet online.

I am also new to this...1 month into it my daughter is almost 4. My advice is to sit back and take a few slow deep breaths. EVERYTHING will work out fine.

It's not as scary as it seems. your kids can get healthy and happy again. I already know you will do great, you asked for advice, that's the first step, the second is to be confident in yourself as a mother. you will learn and it's not that hard.

Read everything you can. If there is a gluten free store near you, go there and ask advice. we only have one store here but it's run by a man who has celiac and we went in there knowing a lot about celiac but came out knowing ALOT about how to feed Emmah. He was great.

Also the food is a lot more pricey but YOU CAN CLAIM IT ON YOUR INCOME TAX.

Good luck and don't be afraid to ask questions, I do all the time LOL

Char

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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
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