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

Negative Blood Test

Sarah P

Recommended Posts

Sarah P Rookie
Sarah P
Posted

So last week I had endoscopy and my doctor called me and told me the results where consistant with Celiac. GI told me to have blood work done to confirm. I called today as I hadn't heard the results back. The RN I spoke to said the blood test was negative but celiac is confirmed with the biopsy. Then my GI doc called and said the RN was not correct and mis-spoke. She said I do not have celiac as the blood test is the definitive test. I see on here though several people had negative blood tests and I have found several articles where Doctors are saying the biopsy is the final answer. Is my doctor crazy?

My Doctor told me she thinks I may have small intestinal bacterial overgrowth. None of my symptoms match up with this, but I seem to have almost text book symptoms of celiac. I really badly want to see a different doctor but I am stuck with this doctor because of my insurance. My GI doctor told me I had no need to be Gluten Free. I don't know I believe her :angry:

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

If you have damage to the villi confirmed by biopsy, you have celiac disease. False negatives are common, both on the blood tests and the biopsy, but false positives are extremely rare.

ravenwoodglass Mentor
ravenwoodglass
Posted

If you have a positive on either test and a negative on the other the positive test outweighs the negative one as the false negative rate is high on both. The biopsy is the 'gold standard' for diagnosis and yours was positive. You need to get on the diet and follow it strictly. Your in the right place to learn what you have to do. Read as much as you can and ask any questions you need to.

T.H. Community Regular
T.H.
Posted

Yeah...what everyone else said. ;)

Also, it might help you feel more settled about your doctor's diagnosis if you ask why she think you might have SIBO. What symptoms did she see that made her suspect this?

I mention that because it's entirely possible to have both, so even if she seems ignorant about celiac disease, she might know about SIBO. Enough of a chance that it's probably worth checking with her to see if she makes sense or not, in your view.

Archived

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

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


  • Member Statistics

    • Total Members
      128,389
    • Most Online (within 30 mins)
      7,748
    Shavon
    Newest Member
    Shavon
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Oats gluten free?

      By trents · Posted

      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
×
×
  • Create New...