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

My 10 year old was just diagnosed w Celiac


Kareg

Recommended Posts

Kareg Newbie

My daughter had JVR at age 2 and is in remission but now we have a Celiac diagnosis to contend with.  I am Type 1 diabetic so autoimmune runs deep I gather.  For her, until I see her Dr after the Holidays etc do I need to check shampoo and everything or just focus on food?  Can she have a little gluten over the holidays?  I just found out this afternoon and trying to educate myself- looking for best site recipes and how deep I need to remove gluten out of her life 


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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master

Welcome to the forum, @Kareg!

How was your daughter diagnosed?  By blood tests?  By endoscopy?  Often people go gluten free before all testing is done which negates the test results.  

What were your daughter's symptoms that led to her diagnosis?  If she continues eating gluten, symptoms can become worse.

trents Grand Master
(edited)

To echo what kk said, you should not put her on a gluten free diet until all testing for celiac disease is complete. Usually, there are two stages of testing, the first being blood antibody screening and the second being an endoscopy with biopsy of the small bowel lining to check for damage to the villi. The endoscopy/biopsy is the gold standard test and serves to confirm the blood testing if that was positive. 

If all testing is complete then your daughter needs to go on a strict gluten free diet with no cheating, not even during the holidays. It is challenging enough to avoid accidental gluten exposure without purposeful consumption which would only set back healing of the small bowel lining.

Yes, you should make a reasonable effort to eliminate gluten from anything that might purposely or incidentally wind up in her mouth such as pills, vitamins, lip balm, toothpaste and shampoo.

What is JVR?

Edited by trents
Scott Adams Grand Master

Welcome, and we have lots of recipes here:

https://www.celiac.com/celiac-disease/gluten-free-recipes/ 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,164
    • Most Online (within 30 mins)
      7,748

    VGL
    Newest Member
    VGL
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...