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

NG feeding tube for underweight,"failure to thrive" 12 year old? Anyone have any experience with one?


inver

Recommended Posts

inver Apprentice

12 year old diagnosed celiac daughter has "fallen off" the weight curve.  She eats but very small quantities. (Please don't suggest high calorie shakes..foods etc ... already doing all of that).  So far we've had negative results on gastric emptying, endoscopy, colonoscopy, etc.  Going to do Small Bacterial Overgrowth test, impedance test, redo gastric emptying (doc feels previous hospital did it incorrectly).  Gastro is very worried about her growth.  She has not gained any weight this year. Extremely slow weight gain previous years. Celiac is controlled. Tried EVERYTHING with diet.  Really wants to do an naso gastric feeding tube to give highly caloric/nutritious liquid feeding directly to her stomach.  Has anyone had experience with this?  Good? Bad?  Please respond only if you or someone you know has actually done this.  Thank you!

 


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



Celiac.com Sponsor (A8-M):



Jays911 Contributor

My newborn grandson (4 months old) is on one and thriving.  I have a friend with a three year old that is just learning to eat by mouth.  These tubes are very common, but I have no experience with someone of her age.

 

  • 3 years later...
LGOTCH Newbie

Hi~I know this post is 4 years old, but I’m dealing with the same issue currently.  Exact same story. What did you end up doing and what was the outcome? 
Thanks

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
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
×
×
  • 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.