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

8-Year Old With Celiac Disease .. No Idea Where To Go Next

Mom2CjJaedonEthan

Recommended Posts

Mom2CjJaedonEthan Newbie
Mom2CjJaedonEthan
Posted

My 8-year-old son was diagnosed with Celiac Disease back in February 2007. The doctor ran blood tests and his nurse called to inform me that the tests came back positive. That is all they did. No further information was provided in regards to the "what next."

My sister was diagnosed a few months before my son, and when her blood tests came back positive they performed an endoscopy on her. She has been insisting that I need to get after my son's physician to get further testing, but no matter how many times I insist he ignores me.

Any suggestions???

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

Celiac.com Sponsor (A8-M):


sa1937 Community Regular
sa1937
Posted

You need a new doctor.

Roda Rising Star
Roda
Posted

He is already diagnosed celiac by blood work so I would continue to keep him gluten free or put him gluten free if he isn't already. I agree you need a new doctor as they should have given you some direction. If he hasn't been gluten free you could always request the full celiac panel: total IgA, IgA/IgG tTG(tissue transglutaminase antibody), IgA/IgG DGP( deamidated gliadin peptide antibody) and request a scope with biopsy. They must take a minimum of 6-8, some references are now saying 8-11 biopsy samples from the small bowel. If you want to redo this have it done while he is still consuming gluten. If he is already gluten free then he would have to go back on gluten, eating appx. the equivilent of 2-3 slices of bread a day, for three months.

Darn210 Enthusiast
Darn210
Posted

Did you take him gluten free at that point? What doctor has he seen (for anything) since he was diagnosed?

SilverSlipper Contributor
SilverSlipper
Posted

Hi Mom2CjJaedonEthan,

Have you taken him gluten free? If so, that's great! If not, the parents here are so knowledgeable and can help you through that process. Can you get a referral to a pediatric gastroenterologist?

All the best...

come dance with me Enthusiast
come dance with me
Posted

My 8yo was diagnosed by blood test and I took her off gluten from then without anything else happening. I wouldn't agree to anything invasive for her because the end reult is the same = a gluten free diet for life.

mommyto2kids Collaborator
mommyto2kids
Posted

I am reading this thread and wondering if my biopsy was correct if the endo Dr. said he only took 1 sample. Is my confirmation accurate if he only took 1 sample?

One poster said you need many for an accurate diagnosis. Someone please explain.

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

Celiac.com Sponsor (A8-M):


Roda Rising Star
Roda
Posted

I am reading this thread and wondering if my biopsy was correct if the endo Dr. said he only took 1 sample. Is my confirmation accurate if he only took 1 sample?

One poster said you need many for an accurate diagnosis. Someone please explain.

I'd say if you only had one sample done and it showed up positive then in a weird way consider yourself lucky it showed in that sample. Doing multiple biopsies just helps get a more accurate test since damage can be patchy.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,183
    • Most Online (within 30 mins)
      7,748
    CLGC
    Newest Member
    CLGC
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      71.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Intermittent Fatigue

      By knitty kitty · Posted

      Doctors don't usually test the levels of all the B vitamins.  B12 is frequently the only one checked.   Ask for an Erythrocyte transketolase test to check Thiamine Vitamin B 1  levels.  The eight B vitamins all work together, so they should all be supplemented.  Additional thiamine in the form Benfotiamine can be taken.  
    • knitty kitty
      Testing Help

      By knitty kitty · Posted

      No.  The damage done to the lining of the intestines is caused by the autoimmune response of Celiac disease.   People who have been off of gluten for an extended period may take longer to mount an autoimmune response.  Twelve days of gluten after two years off probably wasn't enough time and not sufficient gluten.  
    • LizzieF
      Testing Help

      By LizzieF · Posted

      @trents @knitty kitty would NCGS show some celiac in biopsy?     
    • LizzieF
      Testing Help

      By LizzieF · Posted

      @trents blood tests were IgA 47-310 normal range - mine was 120; TTG <15.0 antibody not detected, mine was <1.0.
    • trents
      Intermittent Fatigue

      By trents · Posted

      I would make sure he gets checked for B12 and D deficiencies at the minmium. Ferritin is a storage protein for iron. If it is low, it could mean his iron needs are currently being met by robbing from storage but the storage is not being replenished. I find it interesting that his fatigue set in during the winter months. If you live in a northern latitude or where there is a lot of cloudy weather during t he winter months, your husband could be experiencing low vitamin D levels. Even aside from geography and climate considerations, people who spend most of their time indoors are often vitamin D deficient. Low vitamin D levels is a chronic problem in developed countries where people's livelihoods keep them indoors during the day.
×
×
  • Create New...