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

Would You Wait For Endoscopy Or Schedule It Sooner?


carecare

Recommended Posts

carecare Enthusiast

I had my 18 yr old's appointment today ..with the ped GI dr. She's scheduled for her endoscopy Dec. 20...my boys are scheduled on the 16th. I mentioned how my boys have been suffering from day one of going back on gluten 10 days ago. He asked if I thought we'd make it until Dec. 16th or not. I said it's certainly difficult knowing one is having daily stomach pain and fatigue and the other is daily muscle pain, canker sores and fatigue. He said if it's too difficult to call and try getting them in sooner for the endoscopy. I'm just worried that if we do it sooner the chance of seeing any damage will be less likely. So we have 3 choices. Call in for an endoscopy sooner than later, wait until december or just call it off. He definitely seems like a doctor who unless it's a positive celiac biopsy that it's not that serious of an issue. I asked if tests were negative yet we know gluten contributes to the ill health of the kids would schools see that as something they have to accommodate. He said it depends on the school/college. We'd have to call and see what they'd do for someone labeled gluten intolerant vs celiac as he said "gluten intolerance" isn't looked at as much of a medical issue and colleges usually don't accommodate like they would for someone with celiac. That really is crazy to me..be we do know that someone who is gluten intolerant can be just as sick from gluten as someone labeled celiac. Grrr...


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



Celiac.com Sponsor (A8-M):



cahill Collaborator

I had my 18 yr old's appointment today ..with the ped GI dr. She's scheduled for her endoscopy Dec. 20...my boys are scheduled on the 16th. I mentioned how my boys have been suffering from day one of going back on gluten 10 days ago. He asked if I thought we'd make it until Dec. 16th or not. I said it's certainly difficult knowing one is having daily stomach pain and fatigue and the other is daily muscle pain, canker sores and fatigue. He said if it's too difficult to call and try getting them in sooner for the endoscopy. I'm just worried that if we do it sooner the chance of seeing any damage will be less likely. So we have 3 choices. Call in for an endoscopy sooner than later, wait until december or just call it off. He definitely seems like a doctor who unless it's a positive celiac biopsy that it's not that serious of an issue. I asked if tests were negative yet we know gluten contributes to the ill health of the kids would schools see that as something they have to accommodate. He said it depends on the school/college. We'd have to call and see what they'd do for someone labeled gluten intolerant vs celiac as he said "gluten intolerance" isn't looked at as much of a medical issue and colleges usually don't accommodate like they would for someone with celiac. That really is crazy to me..be we do know that someone who is gluten intolerant can be just as sick from gluten as someone labeled celiac. Grrr...

how long were the boys off gluten?? Being gluten free for even a short while can effect endoscopy results.

carecare Enthusiast

They were off of gluten from the beginning of August until the later part of September. Maybe a month and a half. Yes, that is why I was concerned about making sure they are on it long enough to show any damage. It's hard to believe how once off gluten...then back on it...how much more severe the reaction becomes. Well, certainly for my boys.

how long were the boys off gluten?? Being gluten free for even a short while can effect endoscopy results.

mushroom Proficient

They were off of gluten from the beginning of August until the later part of September. Maybe a month and a half. Yes, that is why I was concerned about making sure they are on it long enough to show any damage. It's hard to believe how once off gluten...then back on it...how much more severe the reaction becomes. Well, certainly for my boys.

Yes, that is a problem because the reaction can be so much worse. If you are determined to go for the biopsy I would not push for a sooner appt. since even six weeks is a dubious amount of time for a positive test :(

Archived

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

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

    • Total Members
      133,352
    • Most Online (within 30 mins)
      7,748

    Beth Ramsey
    Newest Member
    Beth Ramsey
    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.