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

Tests results, negative and positive, please help me.


Gloria L

Recommended Posts

Gloria L Enthusiast
  • Hi, I'm new to this forum, I hope someone can help me with these tests results, I started feeling sick in March 2020 and getting tested for celiac disease since June 2020 with negative results, even the biopsy done in August was negative. The biopsy report details the findings from specimen A through specimen F, so I’m assuming only 6 samples were taken?? Biopsy was all normal and they even ruled out celiac disease, it says “Duodenal bulb appeared normal, biopsy done to rule out celiac disease”, the doctor confirmed no celiac disease. After that, more blood tests were done with more negative results until this past December, it was positive for celiac disease. Is this possible, to have in the beginning negative blood tests and biopsy results and then all of a sudden a positive blood test? Thank you for reading, please see the pictures.

Screenshot (6).png

Screenshot (8).png

Screenshot (11).png

Screenshot (12).png

Screenshot (15).png

Screenshot (16).png


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

You DGP results, which are the best tests available, are high positive, so it looks like you likely have celiac disease. Many doctors are diagnosing celiac disease via blood tests alone, however, your doctor may also want you to do a endoscope/biopsy to confirm it. Normally you need to keep eating gluten until that part is finished, so be sure to consult with your doctor regarding their interpretation of your blood tests, and whether or not you need a biopsy.

Gloria L Enthusiast
32 minutes ago, Scott Adams said:

You DGP results, which are the best tests available, are high positive, so it looks like you likely have celiac disease. Many doctors are diagnosing celiac disease via blood tests alone, however, your doctor may also want you to do a endoscope/biopsy to confirm it. Normally you need to keep eating gluten until that part is finished, so be sure to consult with your doctor regarding their interpretation of your blood tests, and whether or not you need a biopsy.

Hi Scott, an endoscopy was done in August 2020, the diagnosis of the biopsy is as follows: "Duodenal mucosa with intact villous architecture and no increase in intraepithelial lymphocytosis seen", "Duodenal bulb appeared normal, biopsy done to rule out celiac disease".

The DGP test was in December 2020 ordered by an Integrative medicine doctor, that's why I'm confused, in the beginning all blood tests and even the biopsy were negative until this past December that this new doctor ran the DGP test with a positive result, this doctor told me to keep away from gluten and sent me home, he will see me again in a month. As per this doctor, I started going gluten free since January 7th. 

Gloria L Enthusiast

Should I still call the GI doctor?

Scott Adams Grand Master

Many people who are gluten sensitive don't have villi damage. It would not hurt to contact the GI and aske them how many samples they took, and if they used the Marsh scale to grade them. At least 4 samples are recommended, and then they should be graded using the the Marsh scale.

Given your high DGP results though, some doctors would diagnose you with celiac disease based on these results alone, which it sounds like they've done. If your doctor has recommended a gluten-free diet, and you are on one now, I would stay gluten-free. You don't want to end up with intestinal damage. 

Gloria L Enthusiast
1 hour ago, Scott Adams said:

Many people who are gluten sensitive don't have villi damage. It would not hurt to contact the GI and aske them how many samples they took, and if they used the Marsh scale to grade them. At least 4 samples are recommended, and then they should be graded using the the Marsh scale.

Given your high DGP results though, some doctors would diagnose you with celiac disease based on these results alone, which it sounds like they've done. If your doctor has recommended a gluten-free diet, and you are on one now, I would stay gluten-free. You don't want to end up with intestinal damage. 

Thanks Scott, by looking at the biopsy report, it looks like they took 6 samples because it has reports from specimens A,B,C,D,E,F. I'll call tomorrow the GI doctor and ask anyways. I started to experience digestive problems in March, before March I never had any. The biopsy was done in August, do you think that it could be a possibility that between March and August there was not enough time to cause significant damage to my intestine even though I was having digestive problems already? or only when the intestine has been damaged you start having symptoms? in symptomatic patients I mean. 

Scott Adams Grand Master

Yes, it is a possibility that your celiac disease, similarly to Type I diabetes, kicked in at that time. If you keep eating gluten I suspect your symptoms would continue to get worse and worse, and you may end up with full blown celiac disease with flattened villi and malabsorption of nutrients (trust me that you don't want to go there!).


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



Celiac.com Sponsor (A8-M):



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
      132,202
    • Most Online (within 30 mins)
      7,748

    PatBurnham
    Newest Member
    PatBurnham
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  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.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.