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

Seronegative Celiac


AutumnSky

Recommended Posts

AutumnSky Rookie

Hello I'm new here. 

I am seronegative celiac. It runs in the family. My father carries two variants of the gene but I only have one. My grandmother had celiac as does My brother. 

My most recent EGD and colonoscopy showed intraepithelial lymphocytosis last December. But since the tests came back negative the doctor was unwilling to call it celiac. Now is still have the lymphocytosis, elevated liver enzymes, and b12 deficiency and completely dairy/lactose intolerant. A new GI has decided that I meet the requirements for seronegative celiac and MARSH lvl 1. 

Anyways, I am trying to go gluten free. It's hard. But I need to stick with this. I'm on day three. I hope I can start feeling well soon. 

 


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



Celiac.com Sponsor (A8-M):



trents Grand Master
17 minutes ago, AutumnSky said:

Hello I'm new here. 

I am seronegative celiac. It runs in the family. My father carries two variants of the gene but I only have one. My grandmother had celiac as does My brother. 

My most recent EGD and colonoscopy showed intraepithelial lymphocytosis last December. But since the tests came back negative the doctor was unwilling to call it celiac. Now is still have the lymphocytosis, elevated liver enzymes, and b12 deficiency and completely dairy/lactose intolerant. A new GI has decided that I meet the requirements for seronegative celiac and MARSH lvl 1. 

Anyways, I am trying to go gluten free. It's hard. But I need to stick with this. I'm on day three. I hope I can start feeling well soon. 

 

Thanks for sharing this. We have scattered reports here and there of seronegative celiac disease coupled with negative biopsies. But it is a real thing and your report helps confirm that.

Scott Adams Grand Master

Welcome to the forum, and this article may be helpful:

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,989
    • Most Online (within 30 mins)
      7,748

    BBD82
    Newest Member
    BBD82
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.1k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Brianne03
      Our 17 year old daughter was recently diagnosed with Celiac and we haven't had any real education from her doctor yet; we are waiting for an upcoming appointment, so I've been trying to navigate and educate myself on my own. There are multiple products my daughter uses, such as medications, cough drops, chapstick, gum, etc. that do not contain gluten containing ingredients, but the manufacturers have not labeled the items gluten-free due to processing in a place that might pose a risk of cross contact or maybe not wanting to pay to test their products. How do we safely handle this? Is it a matter of comfortability or reaction?
    • Scott Adams
      Note to self--never go on a Celebrity cruise!😉 I can't imagine how much weight I would gain!!! Their gluten-free selection is amazing!
    • Jordan Carlson
      Hello, I’ve been gluten free for over a year now. I now know and understand that I have been celiac my whole life and my body has been battling without me knowing. Wondering if this has happened to anyone else after diagnosis but I feel like my immune is system is stuck fighting. My mouth is always tingling, I always see stars in my vision, my heart is always pounding, I am always shakey, I get super warm at times. I also cant get rid of this frequent urination either. I definitely notice improvements since going gluten free but its like my body does not have enough power itself to push through this stage. I have an appointment with my doctor this Thursday. But I am wondering if anyone else has experienced symptoms like this and if there is any cause for concern that my nervous system is damaged.
    • aperlo34
      Did you figure this out?? 2.5 months in and have similar feelings. 
    • sh00148
      Hi there, I have a few questions about my daughter who is 2 and has been gluten-free for two weeks following her diagnosis please! She was originally diagnosed due to having faecal impaction and chronic constipation. Since starting the gluten-free diet, we are still on daily movicol but she is pooping a lot more than before. Could this finally be her naturally clearing out the backlog as her digestive system is actually starting to work again? Secondly the colour of her stools has recently been a bit pinkish. It does not look like blood, but I wondered if this is normal again for a colour shift post diet change? Finally, she has had a very large tummy due to the coeliac. How long does this take to go down? Thank you!
×
×
  • Create New...