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 Celiac.com!
    eNewsletter
    Donate

Venting~no Dx Yet

ryebaby0

Recommended Posts

ryebaby0 Enthusiast
ryebaby0
Posted

Grrrrrrrrrrr.....in late August, my husband went in for a celiac screen (my son was dx 12/03) and the tests came back "inconclusive". (Gliadin IgA negative--but present, IgG very postiive, and tTg "borderline" i.e between 20 and 24) Soo, the family doc wanted to scope him, I said how about we run EMA and the genetic DQ tests first? (This was in early November, the first time they had time to see him after the August results) The doctor agreed, we got the script for a full 5-test celiac screen.

So, he went back in a month ago, got stuck again. We waited. And waited. And called, and called, and called. First, the results weren't back. Then they were in the wrong file. Then they were "doing research", then it was "the lab ran the same tests but they have different names, so we're researching whether they are the right ones" and FINALLY this week the doctor's office says "they only ran the IgA and IgG and tTg, your insurance won't cover the rest" which is complete garbage........ They offered to have him come in AGAIN and get stuck AGAIN and they would "let" us pay for the tests.

We switched doctors :) but are wondering the value of an "official" dx at this point. The second tests did show a still-elevated IgG and a tTg that is now 24. DH is asymptomatic, but the tTg makes us think that he is sustaining damage that is just not bad enough to show yet. Yet being the operative word!

Suggestions, input, advice?

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      121,212
    • Most Online (within 30 mins)
      7,748
    DaniellePaxton
    Newest Member
    DaniellePaxton
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Have this rash forming on the back of my legs. Looking for relief outside of going to the doctor.

      By cristiana · Posted

      HI @Kirbyqueen That's great news your insurance will be kicking in soon.  Sorry to see that you have been dealing with this for six months now, but I do hope you have managed to find some relief with some of the suggestions in the meantime. Perhaps come back and let us know what the doctor says. Cristiana
    • Scott Adams
      Trying to read my lab results

      By Scott Adams · Posted

      I agree, and hopefully your doctor will contact you soon about the next step, which will likely be an endoscopy to confirm your diagnosis. Do you have celiac disease symptoms? 
    • Kirbyqueen
      Have this rash forming on the back of my legs. Looking for relief outside of going to the doctor.

      By Kirbyqueen · Posted

      Still dealing with this rash on my legs. I've eliminated ringworm (through use of topical ointments). And I also know it's not shingles, as I've never had chickenpox before and I'm still fairly young. Through a lot of online research, I'm leaning more towards dermatitis herpetiformis, eczema, or psoriasis. I've actually got a doctor's appointment in May (finally got some insurance) and I'm going to bring it up then. I'm feeling really hopeful and excited to maybe be getting some relief soon.   Big thanks to everyone for the suggestions and positive thoughts!
    • trents
      Trying to read my lab results

      By trents · Posted

      You have three celiac disease specific antibody tests that are positive: Endomysial  Antibody IGA (aka, EMA), tTG-IGA, and tTG_IGG. Furthermore, your Immunoglobulin A at 55 is low, meaning you are IGA deficient. This one is not an antibody test for celaic disease per se but a measure of "total IGA" levels and if low (yours is low) it can suppress the individual antibody scores and even cause false negatives. So, yes, it definitely looks like you have celiac disease.   Do not yet begin a gluten free diet as your physician may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining for confirmation of the antibody testing. This may help:   
    • Bayb
      Trying to read my lab results

      By Bayb · Posted

      Hi, I received my labs via email yesterday and have not heard back from my doctor yet. Can anyone tell me if these results indicate I have Celiac?      Endomysial Antibody IgAPositive  Ft-Transglutaminase (tTG) IgA6  H0-3 (U/mL) - Negative 0 - 3 - Weak Positive 4 - 10 - Positive >10 - Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten-sensitive enteropathy. FImmunoglobulin A, Qn, Serum55  L87-352 (mg/dL) Ft-Transglutaminase (tTG) IgG183  H0-5 (U/mL) - Negative 0 - 5 - Weak Positive 6 - 9 - Positive >9
×
×
  • Create New...