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

Please help me read the genetic test


Nora Sofian
Go to solution Solved by Scott Adams,

Recommended Posts

Nora Sofian Rookie

Hello! Before that, I asked you to help me with the results of my tests and you helped me read the answer. There, all the results were negative and the doctor prescribed me a genetic test. Today the test result came back, but I can’t figure out whether I have celiac disease or not. The doctor also prescribed me a gluten diet for two weeks, and then I will have to have a gastroscopy with a biopsy.

Genetic test answers

Interpretation: The findings cannot exclude the suspicion of a coeliac disease. Selected HLA alleles of the DQ2/DQ8 locus and other associated DQB1/A1 alleles were examined. Exclusion of DQ2 and DQ8 has a high Negative Predictive Value.

 

Result:

 

1: Alleles from DQB1 were not detected. 02:01 (DQ2) and/or DQB1 03:02 (DQB)

 

2: Alleles fron DQA1 05:01, 05, 08 (without serological DQ2/8 equivalent) were detected.


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



Celiac.com Sponsor (A8-M):



  • Solution
Scott Adams Grand Master

Thank you for sharing your results! Based on what you’ve posted, it looks like you have some of the genetic markers that are associated with celiac disease, but the presence of these markers alone doesn’t confirm that you have the disease. Many people have these genes and never develop celiac. The next steps, like the gluten challenge and the biopsy, are important to determine whether you actually have celiac disease. It’s great that your doctor is being thorough. Make sure to follow the gluten diet as instructed so the biopsy can give accurate results. If you’re feeling unsure, it might be worth discussing your results further with your doctor to get more clarity.

Nora Sofian Rookie

Thank you very much for your answer @Scott Adams

Yes, I changed the doctor and I think this one understands what he is doing and I hope that we will eventually come to some kind of answer. 

My gluten diet will end soon, I still have a few days left before the biopsy, but it’s hard for me, the symptoms are gradually returning, but I have to be patient otherwise I won’t know my diagnosis.

Scott Adams Grand Master

Let us know how it turns out. 

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. If you should get negative results from your tests, it still by be a good idea to go gluten-free for a while to see how you feel.

Nora Sofian Rookie

Yes, of course I will write here when I get a final diagnosis. I'm going for a biopsy on Tuesday, the answer will only be in two weeks. I hope that at the end of the month my doctor will be able to see me and I will know my diagnosis. As soon as I get the biopsy done I will immediately stop eating gluten as I feel good without gluten. The doctor gave me a preliminary diagnosis of NCGS, but he still wants to finally make sure of this, so he ordered a genetic test and biopsy. Thank you very much again for your attention @Scott Adams

  • 3 weeks later...
Nora Sofian Rookie

Hello! Finally I got the biopsy results and was at the gastroenterologist. And finally I have my diagnosis. The doctor diagnosed me with NCGS and they found H.pylori (bacteria) I was prescribed a gluten-free diet and a course of antibiotics. Thank you again for your help and advice ☺️ @Scott Adams

Scott Adams Grand Master

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 


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



Celiac.com Sponsor (A8-M):



Nora Sofian Rookie
1 hour ago, Scott Adams said:

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

@Scott Adams I'll check it out! Thanks!

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
      127,649
    • Most Online (within 30 mins)
      7,748

    Anna Balcom
    Newest Member
    Anna Balcom
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Here is a category of study summaries on the relationship of Type 1 diabetes and celiac disease: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/diabetes-and-celiac-disease/ This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • RMJ
      How frustrating! The Endomysium antibody result is usually given as a titer, 1:5, or 1:10, or 1:20.  This indicates how far the serum can be diluted and still give a positive result. It could be going down but the way they show the results you can’t tell. If you click on the “view trends” button on an electronic version of the results does it show any additional information?
    • misslemon
      Hi, I'm hoping to get some advice on how to handle Mass as a new Catholic.  I'm looking to take the Mass for the first time in March.  I've been told that the church has a "low gluten" option that is 0.01% gluten.  Is this safe, especially to do every week?   I also read that taking the wine instead could be more of a problem if it gets contaminated with regular crumbs.   I found this information online:  "The Benedictine Sisters of Perpetual Adoration in Clyde, Missouri, have developed a Communion host that is extremely low in gluten. The host is made from gelatinized wheat starch. The Sisters report the hosts test to a level of 0.01% gluten. At that level, the lowest that could be tested, no gluten was detected. This means that there is less than 0.01% gluten in one of these hosts. The Secretariat for the Liturgy of the United States Conference of Catholic Bishops has stated that these hosts meet the requirements of the Code of Canon Law (924 §2) and may be validly used at the celebration of the Eucharist with permission of the person's pastor. The Catholic with celiac disease can now fully participate in Holy Communion with the whole parish family. Catholic celiacs may choose to receive consecrated wine at a regular communion station if their parish offers communion under both species. There is greater risk for contamination using this option. The fraction rite may allow small, yet dangerous crumbs to be in the cup." Thank you for any guidance!
    • Jenn D
      My son was diagnosed with Celiac Disease is April 2023. His ttg antibody was over 100 at the time of diagnosis. Now it is at 3 (which is considered negative), but his endomysium antibody iga is still coming up positive. There is no specific number just positive or negative so I'm not sure if he's getting better or not. I'm getting nervous that something else is going on and I was just looking for some advice or an understanding what this "postive" actually means. He gets tested every 6 months. Thank you so much for any responses😊 Attached is a picture of his bloodwork from August 2024
×
×
  • Create New...