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

HELP not sure if i'm on the right path


birdie761

Recommended Posts

birdie761 Newbie

I wanted to see if you could give some insight to this; if Celiac is a real possibility

I have struggled with digestive issues on and off for years but last few years, have been the worst lately.  I had some bowel issues (blood in stool, change in bowel movements) recently more. I immediately went to my doctor and he ordered a colonoscopy. They did find some very small polyps but rest was clear.    I’ve always felt “pressure” or bloating so I pushed my doctor as I feel something is off. I work out extensively including multiple running activities (did an 8K run a few weeks ago and training for 10k).

I see my gynecologist to rule out anything with my issues ovaries just to be sure (I had a hysterectomy but left ovaries years ago). In the process of all the blood test, a celiac test was done and my doctor referred me to a GI specialist, saying something about having the markers for it. Not sure what that means.  Since the colonoscopy in March 2018, I’ve had discomfort in my upper abdomen, feeling gassy (feels like I have to burp all the time), nausea, continue loose stools or diarrhea. Always tired.  

Here are my blood test

DQ ALPHA 1 (CELIAC HLA-DQ)

01:03,02:01  

 

DQ BETA 1 (CELIAC HLA-DQ)

02:02,06:03

 

 

My pictures I attached showed my stomach in September 2017 at the Tough Mudder I did and now (this last Sunday)

 

Not sure I’m going down the wrong path or not… any thoughts or tests I could do or maybe I’ve done already, to determine this or not

stomach.webp


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master

The distention looks like what some of use get with celiac or in my case even my ulcerative colitis but it is more around the outside rim and lower abdomen.

I can not read panels very well, and in most cases they vary from lab to lab and require a reference range to determine how relative the actual numbers are. You have to be eating gluten daily prior to the labs, and they are not always accurate as some do not test positive on the blood but will have villous atrophy in the endoscope biopsies and even then with a surface area the size of a tennis court...they sometimes miss the damaged areas. You can look up more on the testing here. If you do test positive then at least you can look forward to a cure without meds and getting most of your life back with a very strict diet change. Open Original Shared Link

RMJ Mentor

Those blood tests are for genetics, to see if you have the genes that predispose one to celiac.  Almost a third of the population has the genes for celiac but only 1-2% develop it.  You’d need antibody tests, and if those are positive an endoscopy, to find out if you have it.

Juca Contributor

You need to get tested.

In the meantime, stop eating sugar and artificial sweeteners. It helps with all sorts of digestive issues and it won't mess with you tests (keep eating bread and pasta).

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to MagsM's topic in Related Issues & Disorders
      26

      Inflammation and Menier’s disease link?

    2. - nataliallano replied to MagsM's topic in Related Issues & Disorders
      26

      Inflammation and Menier’s disease link?

    3. - Zuma888 replied to Zuma888's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Hypothetical question about antibodies

    4. - Scott Adams replied to Zuma888's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Hypothetical question about antibodies

    5. - Betsy Crum replied to Betsy Crum's topic in Related Issues & Disorders
      4

      Chest pain from celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,235
    • Most Online (within 30 mins)
      7,748

    judycs
    Newest Member
    judycs
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      How long have you been strictly gluten free? Certainly, it would be good to look into vitamin and mineral deficiencies and supplementation. The B vitamins, magnesium and D3 are all very important to neurological health. Unfortunately, it can be difficult to reverse gluten-induced neurological damage damage if it has gone on for a long time. 
    • nataliallano
      Thanks Trents I'm strict with my gluten-free diet now. I just don't feel any better. I'm going to get tested for vitamins and minerals to see if I need some supplements. For sure I got some damage that doctors call Menier's and the only way they treat it is with medicine that does damage my body more than it helps.   
    • Zuma888
      Thank you Scott for your helpful response! Based on this, would you say someone who is on a gluten-free diet - but not strict about cross-contamination and occasional cheating - and tests negative for tTg-IgA while having normal total IgA is not likely to have celiac, even if they have been 'gluten-free' for years?
    • Scott Adams
      That’s a really insightful observation about antibody testing and the gluten challenge! You’re absolutely right that antibody levels can remain elevated for months or even years after going gluten-free, especially if there’s ongoing cross-contamination or occasional slip-ups. The immune system doesn’t reset overnight—it can take time for antibodies like tTG-IgA to normalize, which is why many doctors recommend waiting at least 6–12 months of strict gluten-free eating before retesting. For someone who’s been gluten-free for less than two years or hasn’t been meticulous about avoiding cross-contact, there’s absolutely a chance they’d still test positive, since even small amounts of gluten can keep antibodies elevated. This is partly why the gluten challenge (where you eat gluten before testing) exists—it’s designed to provoke a measurable immune response in people who’ve been gluten-free long enough for antibodies to drop. But you raise a great point: the challenge isn’t perfect, and false negatives can happen if the timing or amount of gluten isn’t sufficient to trigger a strong antibody response. This is why diagnosis often combines antibody tests with other tools like genetic testing or endoscopy. Your question highlights just how nuanced celiac testing can be! For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
    • Betsy Crum
      Thank you for your response! I have considered starting a food diary in the past, I suppose this is as good a time as any to start.  
×
×
  • Create New...