Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,032
    • Most Online (within 30 mins)
      7,748

    Moxielu
    Newest Member
    Moxielu
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • kate g
      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
    • cristiana
      Hi @Karmmacalling I'm very sorry to hear you are feeling so unwell.  Can you tell us exactly what sort of pain you are experiencing and where the pain is?  Is it your lower abdomen, upper abdomen etc?  Do you have any other symptoms? Cristiana
    • trents
      The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a strict gluten-free diet, the symptoms do not remit. These cases may be refractory celiac disease or due to gluten contamination; however, the lack of response could be related to other dietary ingredients, such as maize, which is one of the most common alternatives to wheat used in the gluten-free diet. In some celiac disease patients, as a rare event, peptides from maize prolamins could induce a celiac-like immune response by similar or alternative pathogenic mechanisms to those used by wheat gluten peptides. This is supported by several shared features between wheat and maize prolamins and by some experimental results. Given that gluten peptides induce an immune response of the intestinal mucosa both in vivo and in vitro, peptides from maize prolamins could also be tested to determine whether they also induce a cellular immune response. Hypothetically, maize prolamins could be harmful for a very limited subgroup of celiac disease patients, especially those that are non-responsive, and if it is confirmed, they should follow, in addition to a gluten-free, a maize-free diet." Notice that those for whom it is suggested to follow a maize-free diet are a "very limited subgroup of celiac disease patients". Please don't try to make your own experience normative for the entire celiac community.  Notice also that the last part of the concluding sentence in the paragraph does not equate a gluten-free diet with a maize-free diet, it actually puts them in juxtaposition to one another. In other words, they are different but for a "limited subgroup of celiac disease patients" they produce the same or a similar reaction. You refer to celiac reactions to cereal grain prolamins as "allergic" reactions and "food sensitivity". For instance, you say, "NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing" and "IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. I need to remind you that celiac disease is not an allergy, it is an autoimmune disorder. Neither allergy testing nor food sensitivity testing can be used to diagnose celiac disease. Allergy testing and food sensitivity testing cannot detect the antibodies produced by celiac disease in reaction to gluten ingestion.  You say of me, "You must be one of those who are only gluten intolerant . . ." Gluten intolerance is synonymous with celiac disease. You must be referring to gluten sensitivity or NCGS (Non Celiac Gluten Sensitivity). Actually, I have been officially diagnosed with celiac disease both by blood antibody testing and by endoscopy/positive biopsy. Reacting to all cereal grain prolamins does not define celiac disease. If you are intent on teaching the truth, please get it straight first.
    • Bebygirl01
      Perhaps you would still like to answer the questions I posed on this topic, because that is all I asked. I am curious to know the answers to those questions, I do not care about the background of Dr. Osborne as I am more aware of the situation than you are, and he is also one of the best known authors out there on Celiac disease. But did you even bother to read the three Research Papers I posted by NIH? You must be one of those who are only gluten intolerant and not yet reacting to all glutens aka grains, but I AM one of those who react to ALL the glutens, and again, that is one of the two questions I originally posted on this matter. NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing. I started with the failed FDA explanation of what Gluten Free is and I stayed sick and got even sicker. It wasn't until I came across NIH's papers and went off all grains that I realized that in fact, I am Celiac and reacting to all the glutens. IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. Those who are just getting started with learning about grains etc., can take it easy by just being "grain free' and eating a lot of meat, vegetables, etc. or whole foods as God has intended, without buying so called gluten free garbage out there that is making them sick and the whole reason they are not better. I tried the stupid gluten free garbage and it didn't work, and that will make anyone want to give up, it is better to teach the entire truth and let the patient decide, rather than give them misinformation and lies.
    • Nicola McGuire
      Thank you so much I will speak to the doctor for dietician apt . Thank you for your advice Beth much appreciated 
×
×
  • Create New...