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

Please Help With Blood Test Results

Amyleigh0007

Recommended Posts

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

My son was diagnosed with Celiac a few months ago (both bloodwork and biopsy positive). I have have bowel issues all of my life and the symptoms seemed to have gotten much worse after the birth of my daughter 9 months ago. I thought I had found my answer and was fully expecting a positive dx. I had bloodwork done and everything came back negative. My TTG antibody was <3 (<5 negative, 5-8 equivocal, >8 positve reference range) and my IGA Serum is 179 (81-463 reference range). Can anyone tell me more about my results? I am not sure if I should drop it or pursue more tests. Thank you for your help!

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

Celiac.com Sponsor (A8-M):


lizard00 Enthusiast
lizard00
Posted

Welcome to the forum!!

Have you tried the gluten free diet? The number of people on here with negative bloodwork but either a diagnosis or positive results is pretty high. My bloodwork was negative, but I have Celiac.

It really is up to you at this point if you want to pursue it. If you try the diet, you skew your chances of an accurate result. But if you decide to pursue it, don't quit eating gluten for any length of time.

Are those two tests the only ones they did?

nora-n Rookie
nora-n
Posted

The blood tests, especially ttg and EMA are really calibrated to be positive only in th most severe cases and are negative in 20% even then.

nora

Rachel--24 Collaborator
Rachel--24
Posted
My son was diagnosed with Celiac a few months ago (both bloodwork and biopsy positive). I have have bowel issues all of my life and the symptoms seemed to have gotten much worse after the birth of my daughter 9 months ago. I thought I had found my answer and was fully expecting a positive dx. I had bloodwork done and everything came back negative. My TTG antibody was <3 (<5 negative, 5-8 equivocal, >8 positve reference range) and my IGA Serum is 179 (81-463 reference range). Can anyone tell me more about my results? I am not sure if I should drop it or pursue more tests. Thank you for your help!

I would pursue more testing. You were only tested for one antibody (tTG). Also, some people will have a positive biopsy despite negative bloodwork. I would request the Celiac panel.

The IgA Serum is to make sure that you're not IgA deficient.

As previously mentioned you could try the diet to find out if gluten is your problem....just be sure that you do not wish to pursue testing before you start the diet.

Genetic testing could also be useful as your son may have gotten his Celiac gene from his father.

Amyleigh0007 Enthusiast
Amyleigh0007
Posted
  • Author

After my son was dx I stocked the kitchen with gluten-free food and that's what I was eating too, it was just easier for all of us to eat the same things. I did have some gluten each day, but for the most part I was gluten-free. I am afraid my gluten-free diet for those 10 weeks resulted in negative tests. Is that possible? I was not aware that cutting gluten before testing could result in negative tests until I started really reading posts from this website and others. By then it was too late. My family dr has referred me to a GI. I will talk to him about the pros and cons of more testing. Thank you for your help! I truly appreciate it.

Rachel--24 Collaborator
Rachel--24
Posted
I am afraid my gluten-free diet for those 10 weeks resulted in negative tests. Is that possible?

Yes...you would have to be eating gluten in order for the tests to be accurate. If you take gluten out of your diet antibody levels go down. 10 weeks gluten-free can definately result in a false negative.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer. Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks...
    2. Scott Adams
      - Scott Adams replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Celiac disease is the most likely cause, but here are articles about the other possible causes:
    3. Scott Adams
      0

      Celiac Disease and Longevity: Can Treatment and Healing Improve Long-Term Survival?

    4. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    5. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result. I am interested to know, is your gastroenterologist concerned? Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,210
    • Most Online (within 30 mins)
      7,748
    Joseve
    Newest Member
    Joseve
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • lizzie42
      Low iron and vitamin d

      By lizzie42 · Posted

      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By Scott Adams · Posted

      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
×
×
  • 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.