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

False Positive Blood Test?


emja73

Recommended Posts

emja73 Newbie

DD is 3 and has her biopsy tomorrow... what aer they looking for? is it even possible to have a false positive blood test? he said he has to do the biopsy to determine whether it's celiac or not, which makes me wonder if there are false positives? otherwise why do the biopsy? ugh.... I hate having her go under anesthesia :((


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

It's my understanding that there are no false positives, yet most docs consider the biopsy to still be the "gold standard" for diagnosis. The biopsy can prove celiac, but cannot rule it out because of it's false negative rate. There's really no easy answer for this question!

nikki-uk Enthusiast
DD is 3 and has her biopsy tomorrow... what aer they looking for? is it even possible to have a false positive blood test? he said he has to do the biopsy to determine whether it's celiac or not, which makes me wonder if there are false positives? otherwise why do the biopsy? ugh.... I hate having her go under anesthesia :((

They are looking for changes in the lining of her bowel which in coeliac disease is called 'villous atrophy'.

The lining of the bowel is covered in finger like projections (like a shag pile carpet! ) but when you have celiac disease these fingers become blunted and shortened. This stops you fully absorbing all the nutrients you need from food leading to malabsorption, weight loss, diarrhoea (sometimes constipation) and a vast range of symptoms.

Your doc probably wants to do the biopsy as unfortunately the blood tests for celiac disease are notoriously unreliable in small children.

During the procedure the doc will take several small samples which will then be looked at under a powerful microscope ( villous atrophy is not always visible to the naked eye )

Hope that helps! :)

flagbabyds Collaborator

actually my sister had many false positives, with one time having all of them being positive, but he had the biopsy done and nothing was wrong, then they ran the gene test and she doesn't have the gene! so it is very rare, but can happen, she then had food allergy testing done and those were positive for wheat and rye but not barley.

this is very very very rare according to my doctor, but there is a lab somehwere in california that he says gives a lot false positives, the lab is quest, so he doesn't use that lab, he only uses promethesus labs in san diego.

but i do agree with Carla because most doctors do think that the biopsy is the difinitive test for all and will tell you if she as it. but a lot of times if they don't take enough of the area or don't biopsy the parts taht are atrophed then it might be negative.

Ursa Major Collaborator

If your daughter has the symptoms, it is very unlikely that the blood test result is a false negative. On the other hand, the biopsy may turn out negative, because in a three-year-old there may not be enough damage yet to be seen (which would be a good thing).

I would advise you to try the diet after the biopsy is done (without waiting for the results first), as at your daughter's age the diet is the most valid test.

Molly, your sister may have the gluten sensitivity genes rather than the celiac disease genes. Conventional doctors only test for the celiac disease genes that have been officially identified at this point (but scientists have admitted that there are likely others that are as yet unidentified). If your sister would get tested with Enterolab, she may end up being identified with the gluten sensitivity genes. It would likely be better if she stays away from barley as well, as the allergy tests are also very unreliable. Since gluten intolerance is NOT an allergy, but an intolerance, if she is intolerant to barley, it wouldn't show up.

Most celiacs don't show an allergy or an intolerance to any of the gluten containing grains, because those only show immediate reactions and won't show anything you get a delayed reaction from.

Just thought I'd mention that.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,072
    • Most Online (within 30 mins)
      7,748

    3rdearesl
    Newest Member
    3rdearesl
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.
    • knitty kitty
      Thiamine has antifungal properties.  The body uses thiamine to keep bacteria and yeasts from overgrowth in the digestive system.   Fluconazole use can cause thiamine deficiency.   Supplementing with thiamine in the form Benfotiamine would be beneficial as Benfotiamine promotes intestinal healing.   Thiamine and the other B vitamins tend to be low in Celiac due to malabsorption.  Talk to your doctor about supplementing vitamins and minerals.
    • Scott Adams
      Welcome @Natalia Revelo, your experience is profoundly difficult and, sadly, not entirely unique within the celiac community. It's the frustrating reality of "silent" or ongoing damage that isn't captured by the MARSH score alone, which only measures active villous atrophy. Your normal biopsy suggests your diet is preventing the classic autoimmune attack, but it doesn't mean your gut has fully healed or that other issues aren't at play. The inflammation from your newly discovered milk and egg allergies is a huge clue; this constant allergic response can create a low-grade inflammatory environment that severely hampers nutrient absorption, effectively creating a "leaky gut" scenario independent of celiac damage. This is likely why your iron stores deplete so rapidly—your body is both unable to absorb it efficiently and may be losing it through inflammation. While the functional medicine path is expensive, it's clearly providing answers and relief that traditional gastroenterology, focused solely on the gluten-free diet and biopsy results, is missing. To move forward, continue the gut-healing protocols your functional doctor recommends (perhaps exploring alternative options to glutamine that won't irritate your cystitis), maintain your strict avoidance of all allergens and irritants, and know that true healing is a multi-faceted process. You might seek a second opinion from a different gastroenterologist who is more knowledgeable about non-responsive celiac disease and the complex interplay of food allergies and micronutrient absorption, but your current path, while costly, seems to be leading you toward the steady health you need.
    • knitty kitty
      Have you had a DNA test to look for Celiac disease genes?  If she doesn't have any celiac specific genes, look for another explanation.  If she does have Celiac genes, assume they are turned on and active Celiac disease is progressing.  All first degree relatives (mother, father, siblings, children) should be genetically tested as well.   Sometimes blood tests are ambiguous or false negatives if one has anemia, diabetes or thiamine deficiency.  Certain medications like antihistamines and steroids can suppress the immune system and result in false negatives or ambiguous results on antibody tests.  
    • Heatherisle
      That was just the visual report, so need to wait for confirmation or otherwise from the results. They did take a biopsy from the upper end of the duodenum(D1). D2 looked unremarkable on the camera. Just wish we didn’t have to wait so long for the results as she’s naturally a very anxious person. But thanks so much for taking the time to answer me
×
×
  • Create New...