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

Where Do We Go From Here?


Mylesmommy

Recommended Posts

Mylesmommy Rookie

My son had an EGD and sigmoidoscopy on Monday, upper biopsies negative. Waiting for sigmoid biopsies, but I thought it wasn't usually found that low.

In some strange way I am disappointed because I feel like now I have no answer. He is just really gluten intolerant I guess. I know that gluten free helps, but I feel like when you say your son is gluten intolerant people look at you and say....yeah right.

I am going to get some probiotics and switch him off of dairy again to see if we can really heal his gut. Poor boy, I can tell what he had for dinner just looking at his diaper, it all comes right back out. He can't be getting that much in terms of nutrition.


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



Celiac.com Sponsor (A8-M):



africanqueen99 Contributor

I can't even tell you how sorry I am to hear this.  Seriously, I had two kids scoped last week and they both came back negative.  I cried!  I wanted there to be clear damage so I *knew* I was making the right decision.

 

The oldest kid is still going with celiac - even after a negative biopsy.  The GI DX her before the scope and said that it's not uncommon for kids to clearly have celiac and not have a positive biopsy.  She said it's like having a water mark on the middle of your large dining room table.  You can take a lot of pictures and never see the water mark.  Biopsies are like that - they simply can't see the entire thing.  This kid has every other sign of celiac, though (1st degree relative, stomach pains, no growth in over a year).

 

Middle kid was sort of iffy before the scope.  So he came back negative and we're not going with celiac.  He's going to be nearly 100% gluten-free until he hits the birthday party circuit and then he can have the gluten-y treats there.

 

You know, you can call your son whatever you want to the vast majority of people.  Who cares what they think - if gluten doesn't work for your kid then that's all that matters.

Mylesmommy Rookie

This sounds odd, but it's so nice to hear someone say they almost cried when the biopsy didn't show anything! I feel the same way. I just wanted a concrete answer! Sick, I know. I really wouldn't wish celiac on anyone! I just want to have a straightforward answer. Now I just feel like I put my kid through a procedure for nothing.

I know gluten is not good for him though. I gave him a big bowl of goldfish before he went to bed as a last goodbye before his procedure...he was up four times that night. He still wakes up at night, but when he is off gluten...sleeps like a dream.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,228
    • Most Online (within 30 mins)
      7,748

    Shirley Roberts
    Newest Member
    Shirley Roberts
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • joleenrae
      We had the follow up endoscopy 1 year out from the first one. We left that day and they said visually it looked good so he thought she'd be negative again. Results came back this week as celiac sprue present and level Marsh 3A. So she doesn't have much damage but she is now positive for celiacs... Just thought I'd post in case in takes anyone else a year to get a diagnosis.
    • Scott Adams
      @thejayland10, did you read this article?  
    • shirlane
      I need to supplement my vitamin intake and was told AG1 was a good product.  I checked their website and they claim to be gluten-free, but I see that barley is one of the ingredients.  If the product is gluten-free how can it safely contain barley?
    • trents
      @nataliallano, whatever else can be said, you need to get serious about eating gluten free. Lots of people with celiac disease are like you. We call them "silent celiacs". They have few or no GI symptoms and falsely assume no damage is being done to their body by continuing to consume gluten. Neurological damage is one of them.
    • Zuma888
      Good day, From browsing this forum, I've come to find out that even on a gluten-free diet, many people seem to take years for their antibodies to go down to normal levels, and also that hidden gluten could keep the levels from going down to normal indefinitely. Shouldn't that mean that a celiac person would have a high possibility of testing positive given that they had gone gluten free for less than 2 years or so, and especially if they had not been careful about cross-contamination or had cheat days? The criteria for the gluten challenge makes it seems like the possibility of false negative is high in general.
×
×
  • Create New...