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

Confused About Blood Test!


tickador

Recommended Posts

tickador Newbie

Hello all! I've learned so much from browsing these forums--thanks for all the collective wisdom. The short version of my story is that I'm a 36-year-old mom of 2. My previously annoying digestive issues took a turn for the worse after the birth of my now 6.5-year-old daughter. My doctor at the time ran some blood tests, including a celiac panel, which came back "inconclusive" but I no longer have the results and can't remember which tests it included. I was diagnosed with IBS-D. Oh, and I also have exercise-induced anaphylaxis, which until recently was ONLY made tolerable by taking antihistamines, and I remain "allergic to running," not as amusing as it sounds to my friends.

Things got worse again last spring, and finally over the summer I cut out most wheat as an act of desperation. I started to feel significantly better, and, surprise!--I can run without my legs and waist swelling and itching so badly I want to throw up, for the first time EVER. For about 3 months I've been inconsistently gluten-free. A few times I've had a gluten meal, and I haven't been strict about foods being completely gluten-free. However, I've had WAY less gluten over the last 3 months than any other time in my life.

Soooo, I just had a physical with a new doctor, and she ran a bunch of blood tests including what she (and the lab, at Duke) called the celiac panel. It is clearly incomplete, and this is the result (pasted directly from my report):

CELIAC DISEASE PANEL

Reference

IMMUNOGLOBULIN A *301 mg/dL [46-287]

TISSUE TRANSGLUTAMINASE IgA 8 units

=============================

Negative: <20 units

Weak Positive: 20-30 units

Moderate to Strong Positive: >30 units

I haven't talked to my doctor yet. Can the high IgA just be caused by my allergies, or is it possible for that to be a celiac marker? My TTg is in the negative range. I thought I'd have to be completely gluten free to affect the results, but is it possible I messed them up by being mostly gluten-free, or can I be fairly confident I don't have celiac?

Oh, and one last question--is there any value in doing a homemade wheat patch test? Not for celiac, of course, but for allergies.

I am happy to be avoid gluten forever if it makes me feel better, but I really want something conclusive so that I can know whether I need to avoid it like total poison (celiac), or if it's ok to cheat every now and then if I'm willing to live with the results (allergy/intolerance).

Thanks for reading and thank you SO much for your help.


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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

It's possible you messed up celiac tests by being mostly gluten-free. I've read the high IgA can happen in celiac disease but it's far from diagnostic. You would have to go back to full gluten for a couple months to get an accurate test. It's also only a celiac screen and as you mentioned, there are other tests like deamidated gliadin that are more sensitive. False negatives on TTG are relatively common, at 20-30%.

Is there any possibility of tracking down your "inconclusive" test? Your records should still be on file at that doctor. I'd strongly suggest you get hold of them again.

My asthma has been considerably better after going on the GAPS diet. It's free of grains and starches and uses a lot of probiotics. I also went off dairy. Open Original Shared Link I've been able to "cheat" with a little rice and no ill effects but eating some gluten-free baked goods with a mix of other starches at Thanksgiving gave me an asthma flare-up.

Food allergies and skin testing don't always track. There is no harm in trying a patch test but I'm not sure it would really tell you much, other than to avoid putting wheat on your skin.

Archived

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

  • 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. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      GI DX celiac despite neg serology and no biopsy

    2. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      6

      Shingles - Could It Be Related to Gluten/ Celiac

    3. - Scott Adams replied to Silk tha Shocker's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Help

    4. - Silk tha Shocker posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Help

    5. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      GI DX celiac despite neg serology and no biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,478
    • Most Online (within 30 mins)
      7,748

    Susan Gutenberger
    Newest Member
    Susan Gutenberger
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Roses8721
      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    • Ginger38
      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
    • Scott Adams
      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • Silk tha Shocker
      What is the best gluten free scanner app? I have the "gluten-free Scanner" app. I scanned an almond joy and it says it contains gluten when the package is labeled gluten free
    • trents
      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
×
×
  • 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.