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

I'm New! Can Anyone Help?

Newbyliz

Recommended Posts

Newbyliz Rookie
Newbyliz
Posted

I'm new to the forum and am not sure if I posted my original question correctly. I have had negative blood tests but came back with positive for DQ2 and a subset of that gene putting me in a moderate risk category since I have many symptoms associated with celiac such as: 3-8 loose stools per day, vitamin b12 and d deficiencies, bloating, gas, stomach pain, severe osteopenia in my back(I just turned 40), inflammation in my entire digestive tract from my esophagus all the way down. I had an upper endoscopy which only showed inflammation(esophagitis, gastritis and duodenitis) and a colonoscopy that also just showed inflammation. I have peripheral neuropathy in my right hand and am constantly fatigued and have joint pain. I am scheduled for a 2nd upper endoscopy in 2 weeks because my new gastroenterologist said that there were no biopsises taken from the first part of the duodenum only the 2nd. The testing has been going on for 18 months and my symptoms have been around for about 7 years. Can you have early stage celiac with just inflammation and negative bloodwork?

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

Celiac.com Sponsor (A8-M):


Wolicki Enthusiast
Wolicki
Posted

Blood tests are frequently false negative. Be sure to stay on gluten until you have the endo, and make sure they take at least 6 samples. Sounds like Celiac to me. Welcome!

Newbyliz Rookie
Newbyliz
Posted
  • Author
Blood tests are frequently false negative. Be sure to stay on gluten until you have the endo, and make sure they take at least 6 samples. Sounds like Celiac to me. Welcome!

Thank you so much for your reply. I have to say that I have been making sure to eat gluten containing foods at each meal and surprise, surprise I am not feeling to great. My stools have definitely increased and the gas and stomach pain also, heartburn seems to be getting worse when I was never one to suffer with it except when I was pregnant with my children. Is heartburn sometimes an indirect symptom of celiac? I just want the second upper endoscopy to be over and to HOPEFULLY

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,210
    • Most Online (within 30 mins)
      7,748
    BJ OConnor
    Newest Member
    BJ OConnor
    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
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      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
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      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
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      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
      CT with contrast.

      By Scott Adams · Posted

      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
      New labs are now very elevated

      By Scott Adams · Posted

      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.