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. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

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

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
×
×
  • 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.