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

Endoscopy/Colonoscopy needed?


lolabelle

Recommended Posts

lolabelle Newbie

Hi, I posted a few weeks ago that my daughter who is 4 was just tested for Celiac. Her results were positive but the doctor would like to have an endoscopy and colonoscopy because she has blood in her stool and her SED RATE and Fecal Calprotectin  were elevated. Thinking she may have Crohns or IBD. The scopes make me nervous and hate to put her through anything unnecessary. Has anyone who has been through a similar situation offer any advice? Thanks so much!


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



Celiac.com Sponsor (A8-M):



StephanieL Enthusiast

Being young, it would be best to get a baseline and 100% confirmations on the Celiac diagnosis for many reasons.  I would do the endoscope/colonoscopy. The prep will be difficult and not fun but the procedure itself will be harder for you than her!  I promise you that. It sucks for parents.  My kid was 3.5 for his and he remembers none of it. I remember every minute and he doesn't at all!  He also had a brain MRI last year (he was 7) and it was ugly to get him under, again he remembers none of it thank goodness!  

Hugs.  None of us want to have anything done to our babies needlessly!  Not all parenting is rainbows but no one tells you that before you have these little people!  

Jenny Apprentice

My daughter was five when she was diagnosed through a biopsy.  The week before the prep, I talked up the fact that on the prep day, she could only have lots of sugary things--soda,jello, popsicles.  She helped pick out all of her prep 'goodies' and we rented a couple movies for the big day.  On prep, the entire family fasted to support her (even her three-year-old little sister).  By the way, I couldn't believe how much more time I had when I didn't have to spend time cooking, eating, or cleaning dishes!  Prep and procedure was much easier than I anticipated.

Looking back, I am so thankful her celiac was biospy confirmed.  It is serious disease and requires extreme vigilance for gluten-free diet.  The positive biopsy took any fragment of doubt away.  Good luck!

southpaw13 Newbie

My daughter is 7, and got scoped earlier this year. She only did upper, so there wasn't the same prep. I was more nervous than she was, and she has no bad memories of the procedure. Her celiac bx was positive, and I am very glad that we went ahead and did the scope to give us 100% confidence. In hindsight, I definitely do not consider getting my daughter scoped unnecessary (which I may have wondered about a little bit beforehand).

  • 3 weeks later...
Indigosue Newbie

Hi! I, too, debated whether to scope by 6 year-old daughter when her blood work came back indicating Celiac Disease. I talked to the Dr. at length about it and decided to go forward with it for two main reasons: It is a life altering diagnosis and we wanted to be 100% sure that a gluten-free diet was what we had to commit to and we also did want to have a baseline since we were fairly confident she had Celiac. She only had an upper biopsy but it really was an easy procedure. She worried about it but afterwards got over it extremely quickly. Best of luck to you.

 

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. - Scott Adams replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Have Tru Joy Sweets Choco Chews been discontinued??

    2. - Scott Adams replied to chrish42's topic in Doctors
      5

      Doctors and Celiac.com

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

    4. - MauraBue posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Have Tru Joy Sweets Choco Chews been discontinued??

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

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

    • Total Members
      133,259
    • Most Online (within 30 mins)
      7,748

    MauraBue
    Newest Member
    MauraBue
    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

    • Scott Adams
      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    • Scott Adams
      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating gluten daily for weeks beforehand. Many have already gone gluten-free during their pre-screening period, thus their test results end up false negative, leaving them confused and sometimes untreated. It is sad that so few doctors attended your workshops, but it doesn't surprise me. It seems like the protocols for any type of screening should just pop up on their computer screens whenever any type of medical test is ordered, not just for celiac disease--such basic technological solutions could actually educate those in the medical community over time.
    • trents
      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes HLA-DQ2 and HLA-DQ8 seem to be more sensitive to minor amounts of gluten exposure than those with just one of those genes and those with only DQ2 seem to be more sensitive than those with only DQ8. But there are probably many factors that influence the damage rate to the villi as well as intensity of reaction to exposure. There is still a lot we don't know. One of the gray areas is in regard to those who are "silent" celiacs, i.e. those who seem to be asymptomatic or whose symptoms are so minor that they don't garner attention. When they get a small exposure (such as happens in cross contamination) and have no symptoms does that equate to no inflammation? We don't necessarily know. The "sensitive" celiac knows without a doubt, however, when they get exposure from cross contamination and the helps them know better what food products to avoid.
    • MauraBue
      Help!  My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac.  Her favorite candy in the world is tootsie rolls.  I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase.  Have they been discontinued??  Does anyone have another recommendation for a gluten-free/DF tootsie roll option?
    • catnapt
      I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others   thanks again for all the great info    
×
×
  • 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.