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

Positive Blood Test - Negative Biopsy


Luci

Recommended Posts

Luci Newbie

I recently had the Prometheus Celiac Serology test done. My DGP IGA was 142 all others were in normal range. I then had an EGD & Colonoscopy. I received a call this morning from the Physicians Assistant that said, "everything came back good". Is there any way the blood test can give you a false positive? I have already started eating gluten free over the past few days after completing my tests,and have emailed companies to find out if my beauty/personal care products contain gluten, but want to make certain I am not making a drastic lifestyle change that is not necessary.


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



Celiac.com Sponsor (A8-M):



psawyer Proficient

My understanding is that the DGP IgA is highly specific to celiac disease, and that a false positive is very rare.

Unfortunately, false negatives on the biopsy can occur for a number of reasons. A few:

Damage to the villi is patchy, and an affected part was not sampled (perhaps too few samples were taken;

The disease is in the early stages, and damage is not yet detectable;

The pathologist is not familiar with celiac disease and failed to recognize the damage on the slide.

frieze Community Regular

How many specimens did they take? not altogether, but of your small Intestine? It is possible they missed the abnormal parts..The DGP is quiet specific for celiac and not overly sensitive, so for it to be positive, wellll....welcome to the club!

Skysmom03 Newbie

Could it be that you have Latent Celiac Sprue? Positive blood test but no symptoms and no signs of damage to the intestines? I would inquire about that.

rosetapper23 Explorer

Celiac expert Dr. Alessio Fasano has written articles on this topic, and he believes that the endoscopic biopsy should no longer be considered the Gold Standard for diagnosing celiac disease based on the facts set forth by Peter above. The chances that damage can be overlooked are so high, this test can no longer be relied on. Dr. Fasano states that if you have positive bloodwork, have symptoms after eating gluten, those symptoms resolve on a gluten-free diet and then return upon resumption of a gluten-containing diet, you have celiac disease. You have made the correct changes to your life, and you will not regret making them. May you have a very healthy and happy life!

shadowicewolf Proficient

I have a positive IGA TTG (rest of the panel negative), negative biopsy (should be noted it was done 4 weeks after going gluten free), positive for both main genes, and positive reaction toward the diet. We're all different! :)

Luci Newbie

Celiac expert Dr. Alessio Fasano has written articles on this topic, and he believes that the endoscopic biopsy should no longer be considered the Gold Standard for diagnosing celiac disease based on the facts set forth by Peter above. The chances that damage can be overlooked are so high, this test can no longer be relied on. Dr. Fasano states that if you have positive bloodwork, have symptoms after eating gluten, those symptoms resolve on a gluten-free diet and then return upon resumption of a gluten-containing diet, you have celiac disease. You have made the correct changes to your life, and you will not regret making them. May you have a very healthy and happy life!

Thank you so much! I have been gluten free for 1 week and have already started to feel better. It is very frustrating because my biopsy report says R/O Sprue. My fiancee says this means "rule out". They took 3 biopsies and have no other explanation of my previous symptoms of nausea, vomiting, abdominal pain, body aches. I am very grateful for the information on this website...otherwise I might have actually listened to my GI doctor and thought it ok to continue to eat gluten.


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



Celiac.com Sponsor (A8-M):



Luci Newbie

My understanding is that the DGP IgA is highly specific to celiac disease, and that a false positive is very rare.

Unfortunately, false negatives on the biopsy can occur for a number of reasons. A few:

Damage to the villi is patchy, and an affected part was not sampled (perhaps too few samples were taken;

The disease is in the early stages, and damage is not yet detectable;

The pathologist is not familiar with celiac disease and failed to recognize the damage on the slide.

Thank you for your response. It really means a lot to have the validation of others that have struggled with getting an inaccurate diagnosis. I have been gluten free for 1 week and other than not being able to rely on my go to chicken sandwich when traveling and an awkward dinner with friends it hasnt been that hard.

Luci Newbie

How many specimens did they take? not altogether, but of your small Intestine? It is possible they missed the abnormal parts..The DGP is quiet specific for celiac and not overly sensitive, so for it to be positive, wellll....welcome to the club!

Received the results today. They did 3 biopsies of small intestine and several in other spots. It states R/O Sprue. I have been gluten free for 1 week and I am already starting to feel better. As my daughter said, if you have to have a disease at least it is one where you can still have wine :) Such great encouraging people on this website! Very grateful to have such a great resource

kareng Grand Master

Received the results today. They did 3 biopsies of small intestine and several in other spots. It states R/O Sprue. I have been gluten free for 1 week and I am already starting to feel better. As my daughter said, if you have to have a disease at least it is one where you can still have wine :) Such great encouraging people on this website! Very grateful to have such a great resource

What did the actual biopsy results say. Rule out is really just a reason to do the procedure. The pathologist may not want to say it is Celiac. there should be descriptions of what was seen when looking at the biopsies.

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 Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

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

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    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
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.