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

Diagnosis - Blood Test But No Biopsy?


mama pie

Recommended Posts

mama pie Newbie

Hi

I saw a specialist a couple of months ago who ran the blood tests for Coeliacs. He told me that if I need a biopsy I would hear within a couple of weeks. I didn't hear back and my follow up is in July.

Is it possible that you can get a postive blood test that is, say, high enough that they think no biopsy is needed? Or could he not have called me back for a biopsy because the test is negative and so there's no point in the biopsy?

Has anyone been diagnosed on the blood test alone?

THanks :)


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



Celiac.com Sponsor (A8-M):



mouse Enthusiast

I was diagnosed by blood test alone. I was too sick to have them do the bioipsy. I went gluten-free on the day of the blood test and following the doctor's orders immed. went gluten-free. I also have a problem with the thing going down my throat. Something to do with the meds. they use. The last time they did that to me was six years ago when I had a rare pneumonia. They had to stop and spent an hour regulating my heart and I ended up in cardiac intensive care for the next week and a half. Needless to say, I am curious about where my villi are now (since I am still so tired, after almost 28 months), but not curious enough to go through hell.

Guest nini

I too was dx'ed by blood test alone. My symptoms were very severe and I had had previous luck on the gluten-free diet and my Dr. said based on that to go on the gluten-free diet immediately too. My antibodies were highly positive for Celiac. It took my Dr 10 days to call me back...

If you haven't heard from the Dr. by now, call them back and see what's up, and then if he's not planning on doing a biopsy, go ahead and go on the diet and see if it helps you, if you haven't already.

Good luck with it all. I don't feel that the biopsy is as accurate a test as the medical community would like you to believe. Positive dietary response is the most valid diagnostic tool. If you feel better on the gluten-free diet and your symptoms start to improve, then you have your answer.

mama pie Newbie

Thank you both for your answers. I'm the in the UK so at the whim of the NHS, I've tried calling the Dr but never get anything but an answerphone. It's also possible that he didn't make a note on my file about calling me back and a different person filed my results.

Shouldn't I wait until I see if they do want to do a biopsy before starting gluten free?

Thanks again.

Guest nini
Thank you both for your answers. I'm the in the UK so at the whim of the NHS, I've tried calling the Dr but never get anything but an answerphone. It's also possible that he didn't make a note on my file about calling me back and a different person filed my results.

Shouldn't I wait until I see if they do want to do a biopsy before starting gluten free?

Thanks again.

Yeah, you shouldn't start the diet if they want to do a biopsy, but I would reccommend that regardless of the results, you try the diet after that and see if it helps. You do not need a Dr.s permission to eat foods that are naturally gluten-free. Are gluten-free specialty foods in the UK only available by prescription or can you get those at a grocery or health food store?

VydorScope Proficient

Personaly I think the biospy should be completely droped as a diagnostic tool for celiac disease, but not like I have any say in the matter. :)

Guest nini
Personaly I think the biospy should be completely droped as a diagnostic tool for celiac disease, but not like I have any say in the matter. :)

LOL!!! I completely agree!


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



Celiac.com Sponsor (A8-M):



mama pie Newbie

I have hypothyroid disease already which entitles me to free prescriptions for life so yeah it would be nice to get foods for free on prescription - but I can buy them. My sister has a lot of IgA problems (is that the right term?) so I'm pretty familiar with exclusion diets. I had pretty much decided that I would go gluten free but a diagnosis always shuts people up doesn't it? My husband being one of them.... :D

mama pie Newbie

I meant to ask as well - can you get a positive blood test and NOT have celiac disease?

tarnalberry Community Regular
I meant to ask as well - can you get a positive blood test and NOT have celiac disease?

nope

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. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

    4. - Scott Adams replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

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

    • Total Members
      133,213
    • Most Online (within 30 mins)
      7,748

    beckyEck
    Newest Member
    beckyEck
    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

    • trents
      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.   
    • cristiana
      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10).  Since then it has gone up to 10.   I am not happy with that.  I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut.  My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet.   I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
    • lizzie42
      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
×
×
  • 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.