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

Help With Testing Methods


scottyfeelsick

Recommended Posts

scottyfeelsick Rookie

Hi I am new to all of this, so if i'm in the wrong place or something just let me know. This is my first post on a forum(of any kind at all). Any way my question is about my test. I got an enterolab test, and i tested positive for IgA with a 51. and positive Transglutaminase IgA with a 29. my malabsorption was about 1000. HLA-DQB1 Molecular analysis, Allele 1 0302, HLA-DQB1 Molecular analysis, Allele 2 0501, Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5). So I have now been gluten free for about a month after about 10 months of feeling pretty bad. I also am dairy free (temporarily I hope), and I am trying to go easy on corn and soy, all this because I have heard its best to at first. Even though I have not been allergic to anything in my entire life, and I have always had a bit of an "iron gut".

How are these tests? should I get a blood test or a biopsy? I have had a couple good days since going off of gluten, but a bunch of real bad days as well. I am really carefull about CC and I cook all my own food usually from scratch, new frying pan, new cutting board, my own sponge and dish towel, no envelopes, chapstic, ect. I am really carefull. With my enterolab results, does it mean that I have celiac for sure, should i try to get a blood test or biopsy since I am not feeling all that great yet? could it be something else that makes the enterolab tests look like that? I hear people say that if you feel better, don't get any more tests because your body already told you what you need to know, but I don't feel alot better. Only a couple days have I felt really good.

Also, I was put on thyroxine at the same time I went gluten free,(about a month ago) becuase of a low thyroid function. I thought maybe my good days could have to do with that as well?

thanx so much for any insight that anybody might have for me. sorry for such a long post.


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



Celiac.com Sponsor (A8-M):



horsesjapan Apprentice

I'm kinda new to this forum, so I can't help much except to say that if you plan on going to a dr to get a blood test/biopsy, I wouldn't go gluten free yet. And I think celiac and thyroid issues can go hand in hand. Some have posted that they felt worse before they felt better when they went gluten free, like going through withdrawl symptoms.

I don't think the enterolab results can diagnose celiac, I think you need a positive biopsy for that. If you search on here for enterolab you can read what others have said about why the test isn't generally accepted by dr's (doesn't mean the test isn't reliable or anything). If you feel you need a diagnosis by an MD, then I would make an appt and go back to eating gluten. If you don't feel you need a diagnosis by an MD, then I'd continue gluten free/dairy free, and I'd cut out the soy entirely too (my ds is allergic to dairy and soy and wheat, supposedly they all have components in their proteins that are similar).

So far, reading these forums has given me most of the info I've needed. I hope you find answers soon! Good luck!

Nancy

IgG + to gliadin

IgA - to gliadin

IgA Endomysium -

Total IgA not run, awaiting further testing

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. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

    2. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

    4. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

    5. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

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

  • Posts

    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • 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.