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
      130,831
    • Most Online (within 30 mins)
      7,748

    JuliaH
    Newest Member
    JuliaH
    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

    • lookingforanswersone
      Thanks everyone. I've decided to do a gluten challenge (4 slices of bread a day for 3 months) and then do a full gluten panel of all the tests that can be done, just to rule it in or out for sure. I think otherwise psychologically it will keep bothering me 
    • Suze046
      Thanks Scott. Those articles are really interesting. I’m cutting out gluten for 6 weeks but honestly I’m not sure I even want to reintroduce it! I ate at a restaurant for the first time on Wednesday and then Thursday was really uncomfortable and had a few trips to the loo.. wonder if there was some cross contamination 🤷‍♀️ if that’s how my body reacts after not eating it for 3 weeks I’m not sure it’s worth reintroducing it and re testing for celiac! It might have been a coincidence I realise that I’m not going to feel better all of a sudden and my gut is probably still trying to heal. Thanks for your supportive message! 
    • RMJ
      Reference range 0.00 to 10.00 means that within that range is normal, so not celiac. There are other antibodies that can be present in celiac disease and they don’t all have to be positive to have celiac.  I’m sure someone else will post a link to an article describing them! Plus, if you are IgA deficient the celiac IgA tests won’t be accurate.
    • cristiana
      Great to have another UK person on the forum!   Re: blood tests, it sounds as if you are being well monitored but if you have any further concerns about blood tests or anything else, do not hesitate to start a new thread. Cristiana  
    • Lori Lavell
      Julia530 - I have the same gene structure and most of the symptoms you have experienced plus more.....I agree with you whole heartedly!! There are approximately 10 (NOT TWO) genes that can predispose a person to having Celiac Disease. I read in Pub Med that HLA DQA1:05  can result in Celiac Disease in approximately 1 in 875 people. While it is obviously more rare it is NOT BENIGN and should not go unnoticed. Go get the book "NO GRAIN, NO PAIN" and I highly suggest you read it cover to cover. It is written by a Chiropractor who quit his medical education when the VA wouldn't allow him to treat the Veterans with debilitating arthritis with a grain free diet. I have been grain free for over 10 years now.....the facts are we are being lied to! There is a form or gluten in every protein in every grain on the planet of which there are 1000 or more. Just because all they are testing for is the Gliadin in wheat is no excuse to report only partial facts. I became a Certified Function Nutrition Counselor who specializes in Celiac Disease other Autoimmune conditions. Lavell Krueger, CFNC - lavellnutrition    aol
×
×
  • Create New...