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- Just Got A Diagnosis


ashleyld

Recommended Posts

ashleyld Rookie

Hi, i just got the phone call yesterday from my daughters Ped Gi. all her blood tests point to Celiac disease. next step is an endoscopy. I guess i just need to know we are not alone and changing my entire families life wont be horrible. 

thanks for your help and words of encouragement.


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



Celiac.com Sponsor (A8-M):



ashleyld Rookie

also should i be letting her play with playdoh? She doesnt eat it.. but could it hurt her?

kareng Grand Master

also should i be letting her play with playdoh? She doesnt eat it.. but could it hurt her?

 

 

She needs to keep eating gluten until all her testing is finished (including the endo).  I wouldn't use Playdoh because it gets under your nails and all over.  Too easy to accidentally get some on my mouth.  There are gluten-free brands.

ashleyld Rookie

She needs to keep eating gluten until all her testing is finished (including the endo).  I wouldn't use Playdoh because it gets under your nails and all over.  Too easy to accidentally get some on my mouth.  There are gluten-free brands.

Thank you! I didnt realize there were gluten free brands! I will keep a look out. Her favorite thing in the world right now is playdoh. I dont know how i could take that away!

mamaw Community Regular

aroma dough is gluten-free;;;;;; soy  yer dough  (modeling clay)  is gluten-free....

There  are  many others....

The adventures  of a gluten free  mom blog  has  a  review of  gluten-free  play doughs.... I tried to  copy & paste  but  it  wouldn't let me....

 

If  she  is  school age  please  make contact  with  the  school in regards  to  celiac....

 

Keep  her  eating  gluten until all testing  is  complete......

nvsmom Community Regular

Welcome to the board.  :)

 

Don't forget to get the rest of the family tested as celiac disease tends to run in families. If everyone tests negative, and they continue to eat gluten, they should be retested every couple of years or as soon as symptoms appear.

 

Good luck with the endoscopy.  Make sure they take at least 6 biopsy samples.

Cara in Boston Enthusiast

Any change is hard until you get the hang of it.  We have been gluten-free for almost three years now and it is like second nature.  I do recall, in the first few weeks, we were eating tacos about 3 times a week because I didn't think I could come up with any gluten-free meal ideas.  Seems silly now.

 

You, your husband, and your other children need to be tested as well - even if you don't have any symptoms.

 

See if there is a Celiac Support Group in your area.  Ours was wonderful and sent my son a big box of gluten-free treats to "welcome" him.  He felt very special.


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



Celiac.com Sponsor (A8-M):



ashleyld Rookie

Thank you guys! Yesterday i had the worst anxiety about all this. But i feel better now. 

I know i need to keep her eating gluten until after the test. I am going to get at least myself and my middle daughter tested, but for the ease of it.. it will be my entire on the diet. its too hard to single out one person.

Thank you for the blog, im going to go google that now, and i am going to see if there is a group around here! Thanks!

frieze Community Regular

if you take your entire family gluten free you are lowering the window on testing.  get every one tested now.

ashleyld Rookie

if you take your entire family gluten free you are lowering the window on testing.  get every one tested now.

I have to wait until after she gets the endoscopy before i get remove gluten. I will Def get myself and my middle daughter's blood drawn before the gluten is out. :D

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,740
    • Most Online (within 30 mins)
      7,748

    Klsdurbin
    Newest Member
    Klsdurbin
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      You are most welcome, Marie.  Thank you for getting in touch, because this sort of post will be seen by other parents who find themselves in this position, I am sure there are many.   And as I say, in the long run, I am sure your daughter will be sorry for what she said.  I remember having a go at my dear Mum when I was in my twenties about something and then apologising, saying, "I don't know how you put up with me."  I can't remember her exact words but it was something along the lines of, "I used to say things like to my Mum.  Now it's my turn [to be on the receiving end]!"    😂  Although it isn't very nice to be on the receiving end, it is good your daughter feels safe to say these things to you. We look forward to hearing from you again in due course.  
    • Wheatwacked
      Are You Confused About Your Celiac Disease Lab Results? Some people test negative but have a positive biopsy, others test positive but negative biopsy.  This is why it can take years and misdiagnosis of other diseases that Celiac Disease can mimic. The above link is a good read with real life examples. Something I find interesting is that in 1980 or so a new diagnosis was created, Non Celiac Gluten Sensitivity, only 10 years after Norman Borlaug won the Nobel Peace Prize for creating our modern wheat and the Green Revolution.    
    • trents
      @Steve-n-Portland, there is a difference in the requirements to use the label "Gluten Free" and the label "Certified Gluten Free". "Gluten Free" is governed by FDA regulations and has a ceiling of 20 ppm. "Certified Gluten Free" is a labeling convention used by the GFCO, an independent international third party certifying group that uses 10 ppm as its standard.
    • trents
      We have had numerous reports from forum participants experiencing gluten reactions from Trader Joe "gluten-free" products. It seems it's not a good place for the celiac/gluten sensitive community to shop.
    • Steve-n-Portland
      Also, a class action lawsuit was launched in 2024 against Trader Joe's re: their " gluten free" everything bagels. They tested at 269ppm. (Personally, I am not sure they will win. The FDA says that the *ingredients* have to be less than 20ppm for a company to label something "gluten-free."  In order to be certified as gluten-free by the GFCO, the *final product* needs to be less than 20ppm. That said, the lawsuit is arguing that most people read that label and assume the final product is safe for people with celiac. Thus, many people were made sick. And being sick can have costly consequences in regard to work or school, depending when one becomes ill.)
×
×
  • Create New...