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

Is There Such Thing As False Positive?


ElseB

Recommended Posts

ElseB Contributor

My bloodtests came back positive for celiac, and I'm currently waiting for the biopsy. Thing is, I have absolutely no symptoms. Could the blood test be wrong? A few months ago I got sick with antiobiotic colitis and c.difficile. Then, just when I was recovering, out of the blue the doctor says mmm, lets test you for celiac disease. Before the colitis and c.diff. I didn't have any celiac symptoms either. Anyone have any thoughts?


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



Celiac.com Sponsor (A8-M):



Ridgewalker Contributor

I don't believe there can be a false positive. Technically, there could certainly be a lab mistake, where your sample got mixed up with someone else's. The blood test looks for raised antibody levels- which simply wouldn't be there if you weren't Celiac.

Some Celiacs are "asymptomatic." They have no noticeable symptoms, but this does not mean that there is not damage being done to the intestine! Therefore, no Celiac would be asymptomatic forever. That damage will cause symptoms on its own eventually. (Intestinal damage = villi damage, which causes a myriad of problems: vitamin deficiencies, osteoporosis, dental problems, infertility, cancer...)

Also, it is possible to have symptoms that you are so used to, that you just don't really notice them. For example, upon going gluten-free, one might notice an increase in energy- when they didn't even realize they were feeling run-down. Or clearer, sharper thinking... or a cessation of "normal" occasional heartburn... migraine headaches that you may have attributed to something else... etc.

But even if you are completely symptom free-- if you are Celiac, then gluten is destroying your small intestine, whether you can see it or not. :(

Hope this helps.

HAK1031 Enthusiast

this article may help you: https://www.celiac.com/articles/32/1/How-ac...ests/Page1.html

also know that celiac can be brought on in predisposed individuals by stress or illness

hope this helps!

Tim-n-VA Contributor

The most likely thing is that the test is correct and you just don't have noticable symptoms.

There are some ways to get a false positive. Human error in reading slides on the tests that require examination of a slide. The American Celiac website says that other auto-immune diseases can theoretically cause a false positive but it says nothing about whether this has been demonstrated.

In my case, I had no outward symptoms but was tested as part of a large set of tests to try to explain some liver function issues. In retrospect, I could find things that were probably gluten reactions - upset stomach after a breakfast of pancakes or after drinking wheat-beer in Germany.

loco-ladi Contributor

Well, even concidering I have no "medically positive" results here is something to think about...

I am now 40 years old (not old if your a tree but I live with it) my first "celiac" symptoms started when I was in grade school and were ignored, had some more in high school, also ignored.... and until I was in my 30's did any major symptoms show up and they also were ignored by my doctor and misdiagnosed by him as well......

Yes I am angry about this not being found sooner and being found by the medical profession BUT

it took 5-10 years for the first symptom to appear and to be honest it could have been caused by almost anything

it took another 10 years for a few of the other symptoms to appear and again not unusual symptoms or even alarming

by the time I was 30 I knew something was going on.... diagnosed myself via diet between the ages of 35 and 38

so for 30+ years I didnt have very serious issues (but I was still destroying my intestines) why would it be found? I go to the doctor and say "I feel tired all the time" he checks my thyroid and its "borderline" and prescribes me a light dose of pills I feel better for a while then it eventually crawls back even with the pills.

It takes years to destroy everything and it takes years for it all to go back to normal and just because YOU dont recognise any symptoms or maybe even have them as yet, count yourself lucky its been found some of us weren't so lucky.

If you want to continue on a gluten containing diet go ahead its your choice but a few years down the road we will welcome you back with open arms(and keyboards) and help you start something you should be already on.

ElseB Contributor
Well, even concidering I have no "medically positive" results here is something to think about...

I am now 40 years old (not old if your a tree but I live with it) my first "celiac" symptoms started when I was in grade school and were ignored, had some more in high school, also ignored.... and until I was in my 30's did any major symptoms show up and they also were ignored by my doctor and misdiagnosed by him as well......

Yes I am angry about this not being found sooner and being found by the medical profession BUT

it took 5-10 years for the first symptom to appear and to be honest it could have been caused by almost anything

it took another 10 years for a few of the other symptoms to appear and again not unusual symptoms or even alarming

by the time I was 30 I knew something was going on.... diagnosed myself via diet between the ages of 35 and 38

so for 30+ years I didnt have very serious issues (but I was still destroying my intestines) why would it be found? I go to the doctor and say "I feel tired all the time" he checks my thyroid and its "borderline" and prescribes me a light dose of pills I feel better for a while then it eventually crawls back even with the pills.

It takes years to destroy everything and it takes years for it all to go back to normal and just because YOU dont recognise any symptoms or maybe even have them as yet, count yourself lucky its been found some of us weren't so lucky.

If you want to continue on a gluten containing diet go ahead its your choice but a few years down the road we will welcome you back with open arms(and keyboards) and help you start something you should be already on.

Hmmm, interesting points. For now, I've been instructed to keep eating gluten because I haven't had the biopsy yet. I suppose I could be asymptomatic because if I have celiac, I've maybe only had it for 2 months - ever since the colitis and c.difficile episode. Perhaps I had it before, but I certainly never had any of the problems with energy levels that people have described - I've a run a few marathons and I don't know how I could have done that if I was malnourished!!! For now, I'm still eating gluten until the biopsy, but doing my research so I have a game plan for when they tell me to stop eating gluten! Thanks for your comments!

tarnalberry Community Regular

There are a LOT of people who are either asymptomatic, have very light symptoms, or have symptoms that are not GI related at all. It affects different people very differently, and you certainly could have run marathons with it (though who knows when it really was triggered). When you read symptom lists, remember that those are the symptoms that get doctors to pay attention and say "oh, something's really wrong", instead of writing it off as being a "bit off normal, but not really wrong", even though it is for a particular person.

I think you're on the right track - keep eating gluten for the biopsy while educating and preparing yourself. In the meantime, have something scrumptious for us all! :):D


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



Celiac.com Sponsor (A8-M):



Archived

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

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

    • Total Members
      133,206
    • Most Online (within 30 mins)
      7,748

    juliemt
    Newest Member
    juliemt
    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

    • 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
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
×
×
  • 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.