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 Scheduled...in A Year! :(


mamatrois

Recommended Posts

mamatrois Rookie

Hello,

 

I had negative Celiac panel results in January (already off the gluten...oops!) and then went to visit a GI in March to discuss my symptoms.  Confirmed that an endoscopy would be the best way to diagnose, was recommended to remain off of gluten until the test, to avoid misery.  Then I was handed my endoscopy date of FEBRUARY 2014.   (O.o)

 

So, from all of my research, will the test even show anything with a year free of gluten?  Should I just scrap the whole idea and go with my self-diagnosis? As far as doing a gluten challenge, I don't think it's possible, as I seem to be frighteningly sensitive to trace amounts in my system.  

 

Thanks!

Rachel


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Open Original Shared Link

 

 

Maybe a new GI?  One who knows what Celiac Disease is?

1desperateladysaved Proficient

I would find a new doctor too.  I also am super-sensitive and I won't consider a gluten challenge. I would think going gluten free without diagnosis would be better than waiting a whole year.

 

All the best to you, get well,

 

D

mamatrois Rookie

Thank you for responding :)  

 

There is certainly a lack of GI's in the area, but I will contact the local Celiac Association and see if I can find one somewhere that can help out or maybe even specializes in Celiac.  I just wonder though, now that I am 100% gluten-free and tender with trace amounts, is there any way to diagnose?  I think my experience so far with 2 GP's and this GI have left me feeling a little unheard.   I know I could try the genetic testing...

 

Ah, well, it's just nice to know there are other people out there who 1.) understand and 2.) may have gone through something similar.

dilettantesteph Collaborator

I just responded to you about quitting your job.  I didn't realize that you are going through problems getting a diagnosis.  My husband's doctor wouldn't test him despite the fact that our son had been diagnosed.  My husband went elsewhere and he indeed tested positive for it.  If you haven't been gluten free very long, you need to act quickly.  It takes some time to heal so that you can still get a positive biopsy is you are tested soon.  You can discuss this with your new doctor.   Otherwise you may have to consider a gluten challenge.  I hope that you can find someone who is experienced with the condition.

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. - CatS commented on Scott Adams's article in Winter 2026 Issue
      5

      Are Gluten-Free Processed Foods Making You Sick? (+Video)

    2. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    3. - Wheatwacked replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    4. - RMJ replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    5. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

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

    • Total Members
      132,800
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
×
×
  • 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.