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:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s

    2. - tiffanygosci posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Aldi Pueblo Lindo Yellow Corn Tortillas

    3. - tiffanygosci replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s

    4. - trents replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s

    5. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,975
    • Most Online (within 30 mins)
      7,748

    Mel R
    Newest Member
    Mel R
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
    • trents
      @Mari, did you read that second article that Scott linked? It is the most recently date one. "Researchers comparing rates of headaches, including migraines, among celiac patients and a healthy control group showed that celiac subjects experienced higher rates of headaches than control subjects, with the greatest rates of migraines found in celiac women.  Additionally, celiacs had higher rates of migraine than control subjects, especially in women. In fact, four out of five women with celiac disease suffered from migraines, and without aura nearly three-quarters of the time."
    • Mari
      As far as I know and I have made severalonline searches, celiac disease disease has not been recognized as a cause of migraines or any eye problems. What I wrote must have been confusing.
×
×
  • 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.