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
lolabelle
Posted

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
StephanieL
Posted

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
Jenny
Posted

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
southpaw13
Posted

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
Indigosue
Posted

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.

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

  • Member Statistics

    • Total Members
      133,194
    • Most Online (within 30 mins)
      7,748
    Eliana123
    Newest Member
    Eliana123
    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

    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.