Jump to content
  • 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):

False Positive?


skippermay

Recommended Posts

skippermay Newbie

Hello All,

I stumbled across your forum whilst doing a general google search and have found it to be interesting and informative. I hope you don't mind me posting I am from the UK and have not found a UK based forum as yet.

I wondered if anyone had any opinions on my situation. After a number of years with anaemia on and off my GP recently carried out a blood test for coeliac (sorry don't know which one.) This came back as positive and I was referred to a GI consultant, when I attended my consultant appointment he was very dismissive of the blood test results and said that it was a false positive? I couldn't possibly be coeliac as I was "too tall" (I am 183 cm.) He said he would take more bloods I presumed just to humour me and my GP. These came back as positive for endomysial antibody and tTG > 300. I have been referred for endoscopy next week but consultant is still insisting that both of these results are sure to be false positive.

I know that I will have a clearer idea after endoscopy/biopsy results next week but wondered if anyone else had been told the above?

Thanks for any help.


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

This came back as positive and I was referred to a GI consultant, when I attended my consultant appointment he was very dismissive of the blood test results and said that it was a false positive? I couldn't possibly be coeliac as I was "too tall" (I am 183 cm.)

This "consultant" is an idiot. Find a real physician.

ravenwoodglass Mentor

I agree with previous poster. Not everyone with celiac is short or even thin for that matter. Celiac can be triggered at any time in your life but some doctors still think it is a 'childhood' disease. False negatives in both blood and biopsy are common but not false positives. After you are done with all the testing you choose to do get on the diet strictly.

We have members from all over the world, including the UK, so you are more than welcome here. Ask any questions you need to.

Jestgar Rising Star

We have members from all over the world, including the UK, so you are more than welcome here. Ask any questions you need to.

Oh yeah, this too. ;) I was so disgusted by the way you were treated that I forgot to welcome you.

applegirl03 Rookie

The exact same thing happened to me and it delayed my diagnosis by months. Celiac does not discriminate against height, weight, age, sex, race, or lifestyle. That doctor is an idiot and even if you do the endoscopy and it comes back positive he wont know how to help you since he obviously knows nothing about celiac disease. Go to the Doctor section of the forum and ask people for a good Doctor in your area. Also look for celiac disease centers, they are few and far between but they are out there. I had a positive blood test and they didnt even need to do the scope because liek my doc said, if your having symptoms and your blood work is positive then you have it, no need to put you through another painful procedure, just eliminate it from your diet.

Lisa Mentor

Welcome to the Club Skipper! B)

mushroom Proficient

There is really little point in running tests if you are not going to believe the results, is there?? :rolleyes: Now there ARE still a lot of doctors who consider the blood test to be a screening tool and want to do the endoscopy for confirmation, but to be so dismissive of all positive tests is beyond the pale. I know if you're in the UK you might be a bit restricted on doctors, but hopefully you can find a way to see someone who is a little more celiac knowledgeable. And we don't discriminate against anyone here - heck, they even let this Kiwi in! Welcome to the board.


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.

  • 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 ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

    2. - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

    3. - Joseph01 replied to bethmon's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      We Keep Getting Glutened With Vegetable Oil

    4. - ThomasA55 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

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

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442

    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
    • Joseph01
      This is way past due for your post.  I have Celiac and have been recovering for more than a year.  Doing well.  Used Essential oil to day to fry some chicken.  Read the label all good.  Then ate some chicken.  Here comes the gluten reaction.  I haven't had a gluten reaction since year.  I am angry.   I have been so careful with this crap and don't wan't any set backs!!!!! Good luck to you with your post.   Celiac is HELL!
    • ThomasA55
      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary intake of iron was pretty steady (mostly in the form of red meat). I did carnivore (therby eliminating gluten) for a bit after the second test and felt improvements in my joints and digestion. I still consume gluten occasionally socially, for religious reasons, and through cross contamination/food sharing. For these reasons, I would need to know if I had it, because although my lifestyle is low gluten its not at the strict level it should be if it turned out I was celiac. I will get a gene test first and hope I don't have DQ2.5,DQ2.2, or DQ8, but if I had any combination of those do you guys think I need proper screening through a gluten challenge / blood test? Other context. From 2024-2025, my b12 stayed about the same in the mid 600s folate went up slightly, but I heard it takes longer for celiac to affect the absorption of these. ANA negative, CRP low, ESR low.  I don't know how much noise exists around the saturation and ferritin, but it caught my eye and Celiac seemed like a possibility. I'm under no illusion that it is probable that I have celiac, only that it may be worth screening given my overall profile.   
×
×
  • Create New...