Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New To Celiac


joalabbs

Recommended Posts

joalabbs Newbie

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 :(


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Guest jhmom

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
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

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

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

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

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    2. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    3. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,858
    • Most Online (within 30 mins)
      7,748

    Beckyq
    Newest Member
    Beckyq
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.