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

Labs

unknown

Recommended Posts

unknown Apprentice
unknown
Posted

Hey everyone,

I got my blood tested again and my doctor still says that I may not have celiac disease. My only positive was for anti-gliadin IGA and she said that other conditions may cause that, but at least she's finally sending me to a GI (who I have to wait a whole month to see).

Did anyone else on here have similiar results/symptoms and later found out that they do in fact have celiac disease?

Thanks!

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

Celiac.com Sponsor (A8-M):


hsmomof6 Rookie
hsmomof6
Posted

I'm in the same boat as you. All my tests came back negative, except the anti gliadin IgA, which was pretty significantly positive at 61 (>17 being positive). The NP at my GI office said I was negative for Celiac and that the IgA can indicate someone who has a problem with their immune system. She did not elaborate on this, but told me to follow up with my PCP. I haven't gotten in to see them yet, so I'm still waiting. Everything I have found on the web says that this result indicates gluten sensitivity at the least and possible Celiac. The NP did say that I could go gluten free as some patients who aren't Celiac still find that this helps their GI symptoms. I went gluten-free about 10 days ago. My GI symptoms have been better, but not completely gone. I also went lactose free, but today I forgot and ate a grilled cheese sandwich made with Muenster cheese on gluten-free bread and I've had gas and abdominal pain since then. :( I am waiting to get into Mayo Clinic's GI department, my appointment there is in July and I am hoping that they will be a little more helpful than my current GI office.

unknown Apprentice
unknown
Posted
  • Author

I'm in the same boat as you. All my tests came back negative, except the anti gliadin IgA, which was pretty significantly positive at 61 (>17 being positive). The NP at my GI office said I was negative for Celiac and that the IgA can indicate someone who has a problem with their immune system. She did not elaborate on this, but told me to follow up with my PCP. I haven't gotten in to see them yet, so I'm still waiting. Everything I have found on the web says that this result indicates gluten sensitivity at the least and possible Celiac. The NP did say that I could go gluten free as some patients who aren't Celiac still find that this helps their GI symptoms. I went gluten-free about 10 days ago. My GI symptoms have been better, but not completely gone. I also went lactose free, but today I forgot and ate a grilled cheese sandwich made with Muenster cheese on gluten-free bread and I've had gas and abdominal pain since then. :( I am waiting to get into Mayo Clinic's GI department, my appointment there is in July and I am hoping that they will be a little more helpful than my current GI office.

Wow, them saying that IgA can indicate an immune system problem and then not explaining it is really rude! How would they expect you to not freak out about that? I'm freaked out.

After my first post here, I was 100% convinced that I had celiac (after a previous positive lab test that my doctor said was too low to see a GI) and I even started going through all my stuff in the house and labeling stuff with gluten. Now I'm not too sure; all the symptoms could be due to something else or a combo of whatever it is with my already existing diagnosis of PCOS.

Although, in all my online searches it said that IgA is a very specific test for celiac and IgG isn't (so IgG positive could mean something else). That just confuses me.

I guess I'll stop trying to diagnose myself and see what the GI says.

Thanks for your response to my post! Good luck to you and please let me know if you get any info.

Archived

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

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


  • Member Statistics

    • Total Members
      130,695
    • Most Online (within 30 mins)
      7,748
    NadiaH
    Newest Member
    NadiaH
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Grahamsnaturalworld
      Refractory celiac disease

      By Grahamsnaturalworld · Posted

      Where can I find a gastro in adelaide who can diagnose refractory celiac disease have seen 3 so far and don't understand the most obvious question, why my celiac symptoms did not resolve on a gluten free diet the symptoms just got worse as it is attacking my nervous system. 
    • ShariW
      GliadinX/Tolerase G

      By ShariW · Posted

      I recently traveled to Spain and Portugal. I was with a tour group, they knew I needed to be gluten-free and made sure the kitchens preparing the group meals were aware. But just in case, I took Gliadin-X with me and took it for every evening meal - and most other meals. The one time I got glutened was from lunch early in the trip - had to be from cross-contamination. I had not taken Gliadin-X before that meal, which made for a pretty miserable day. Learned my lesson... 😞 
    • Hummer01
      Diagnosis confusion

      By Hummer01 · Posted

      Hi trents, thanks for the response.  The 2nd opinion doctor said that if my CRP is still elevated at that time, he would advise me to look at Crohns/UC or another autoimmune issue. The colonoscopy I had this year seemed to rule those 2 out for now so he still believed celiac may explain it. No previous doctors have suggested any explanation for it even after calling to tell me it was a concerning result.  I guess it feels tough knowing I have positive blood testing, permissive genetics, and visible duodenum changes... and somehow it's NCGS instead of celiac. I'm still surprised the biopsies came back negative when the doctor was so sure they would be positive.
    • trents
      Diagnosis confusion

      By trents · Posted

      "He also said that my CRP should return to a normal level at this time if the culprit was inflammation in the small intestine due to celiac." But with if the elevated CRP levels are caused by some other inflammatory process going on in your body? "She also said that my positive EMA isn't valuable because it has "a high false positive rate." Totally wrong! This is a highly accurate test for celiac disease, that requires specialized expertise to perform and interpret, and it is more expensive than other blood tests. It is generally used as a last test to confirm celiac disease after a positive tTG-IgA test. The sensitivity of a test refers to its ability to correctly identify individuals with the condition. For the EMA-IgA blood test, the sensitivity is generally very high, ranging from 90% to 98%. This means that the test can accurately detect celiac disease in a significant percentage of people who have the condition. The specificity of a test refers to its ability to correctly identify individuals without the condition. For the EMA-IgA blood test, the specificity is also high, typically around 95% to 100%. This indicates that the test can effectively rule out celiac disease in individuals who do not have the condition. Taken from the following article: Looking at the whole picture, I am wondering if you are transitioning from NCGS to celiac disease. Some experts in the gluten disorder field believe NCGS can be a precursor to celiac disease.
    • Hummer01
      Diagnosis confusion

      By Hummer01 · Posted

      Hi all, just wanted to post an update.  I have been gluten free for about 1.5 months now and seeing improvement already in the bathroom.  Recently I had a visit with another GI doctor for a 2nd opinion. He said that while my blood tests and scope are not a "slam dunk" for celiac, he believes it's more likely than not that I have it. His advice was to stay with a celiac-level gluten free diet (no CC) for 6-12 months then retest to make sure TTG-IGA is still negative. He also said that my CRP should return to a normal level at this time if the culprit was inflammation in the small intestine due to celiac.  Today I had a follow up with the original GI that performed the scope. She is confident it is NCGS and says I can still have gluten sometimes. When I asked about the visible duodenum damage, she said it is just "irritation" from gluten because the biopsies were negative. She also said that my positive EMA isn't valuable because it has "a high false positive rate."  I guess I'm having trouble reconciling the totally different advice from these 2 GI's. I want to believe the new doctor more at this point because what he said just makes more sense to me, and he gave an actionable timeline for possible next steps. Feeling lost and disappointed at this point and wanted to write it down here in case anyone has input. Thank you.   
×
×
  • Create New...