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

Testing Done.

jenny2

Recommended Posts

jenny2 Rookie
jenny2
Posted

can someone tell me if my blood tests come back negative for Celiac disease should i ask the doc for a upper endoscopy done? i had negative blood tests for celiac 8 years ago but postive upper endoscopy with flat villi. the docs thought that i didnt have celiac so i have continued to eat gluten for 8 years. flashforward to today, i am having alot of trouble with losting weight, and digestive issues. i just need so advice, thanks

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

If you had a positive biopsy there is a good chance you have celiac. Have you had the blood tests redone or did you get a copy of them? Some doctors will call a low positive negative. You might want to get bloodwork redone and then give the diet a good strict try no matter what the results. Or you could just go gluten free. Since both blood and biopsy have high rates of false negatives but not false positives the positive biopsy was significant in spite of the negative blood tests. Many doctors would have diagnosed with the positive biopsy since that has been considered the 'gold standard' for diagnosis.

JoshB Apprentice
JoshB
Posted

False positive biopsies are possible, but they would could involve some other fairly serious issue, and you ought to know if that was the case.

The more common cause of false positive is lab mistake; apparently it's really easy to flip the sample the wrong direction and hide the villi (Open Original Shared Link). Maybe that's what the doctor thinks happened? Or maybe your positive was only for minor changes that can be explained by several different conditions?

I'd be asking your doctor to explain why he thought you were negative despite the biopsy. There should probably be some answer other than "Oh... Well, the blood work wasn't positive."

jenny2 Rookie
jenny2
Posted
  • Author

I got retested for Celiac on friday, my gastro doc told me that he would call me with the results of the test. I am having so many problems right now and have lost 21 pounds in 1 month and continue to lose weight, i have mouth ulcers and alternating diarrhea and constipation. i am very worried that i am going to lose more weight and my gastro will tell me that the blood tests were negative. then what will i do? maybe just go gluten free once and for all.

MissKris2 Newbie
MissKris2
Posted

Oh, wow. I hope the blood tests clear things up for you. Between your symptoms and the positive biopsy you had before, it sure sounds like celiac.

Roda Rising Star
Roda
Posted

Yes hon, go gluten free you've got nothing to loose except maybe your debilitating symptoms.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

I got retested for Celiac on friday, my gastro doc told me that he would call me with the results of the test. I am having so many problems right now and have lost 21 pounds in 1 month and continue to lose weight, i have mouth ulcers and alternating diarrhea and constipation. i am very worried that i am going to lose more weight and my gastro will tell me that the blood tests were negative. then what will i do? maybe just go gluten free once and for all.

Wow...that's a huge weight loss, hun! :o When you say you were retested on friday, do you mean blood tests? Hopefully you will get some answers, but even if they are negative, you should still give the gluten free diet a good try (2-3 months). Sometimes gluten intolerance doesn't show up in your blood work, but it still wreaks havoc on your body. :(

Definately go gluten free, no matter what the test says.

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

Celiac.com Sponsor (A8-M):


jenny2 Rookie
jenny2
Posted
  • Author

yes they drew blood tests again on friday for Celiac panel because of the problems i am having with severe weight loss. i do not know why i am losing all this weight, i am eating but sometimes i dont have any interest in food and have alternating bouts of diarrhea and constipation. if i go gluten free right now and then they want to do a upper endoscopy would the results still show if i was gluten free? i dont know how long it takes to get the Celiac blood tests back.

ravenwoodglass Mentor
ravenwoodglass
Posted

yes they drew blood tests again on friday for Celiac panel because of the problems i am having with severe weight loss. i do not know why i am losing all this weight, i am eating but sometimes i dont have any interest in food and have alternating bouts of diarrhea and constipation. if i go gluten free right now and then they want to do a upper endoscopy would the results still show if i was gluten free? i dont know how long it takes to get the Celiac blood tests back.

If you are going to have an endo do keep eating gluten until that is done. Even on gluten there is still a chance of false negatives with testing so when all testing is done give the diet a good strict try.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,007
    • Most Online (within 30 mins)
      7,748
    Mary Harvey
    Newest Member
    Mary Harvey
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.4k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      NEW - 7 year old daughter diagnosed but 'not officially' - negligence from NHS

      By trents · Posted

      Essentially all of our UK forum participants who are in the process of a celiac disease diagnosis report that after their blood antibody testing is done, they have to wait many months to get the endoscopy/biopsy for confirmation. My impression is that the UK/European health care models do great at addressing routine healthcare needs but poorly at specialty healthcare needs.
    • Scott Adams
      NEW - 7 year old daughter diagnosed but 'not officially' - negligence from NHS

      By Scott Adams · Posted

      I think both systems have merits and faults, but in my opinion no citizen of any country should be denied health care, and it should be a basic human right, no matter your income.
    • Monkeyvat
      NEW - 7 year old daughter diagnosed but 'not officially' - negligence from NHS

      By Monkeyvat · Posted

      I want to stand up for the NHS! Yes, it has its issues, but after moving from the U.S. a few years ago, it’s been a real eye-opener to see just how much better the NHS is compared to the American healthcare system. For example, I can call my GP in the morning and often get an appointment that same day. Healthcare is provided to all UK residents, free at the point of use, no matter your income or job status. That’s a massive relief. In the U.S., people regularly go bankrupt because of medical bills—it’s one of the leading causes of financial ruin. Here, that just doesn’t happen. Plus, the UK consistently reports lower infant mortality rates and higher life expectancy compared to the U.S. No system is perfect, but the NHS deserves recognition for what it does right—and that’s a lot.  
    • Russ H
      Does anyone here also have Afib

      By Russ H · Posted

      I developed a heart arrhythmia and on several occasions had to wear a 24 hour Holter monitor. Among other things, I had premature atrial complexes (PACs) and occasional AFib. I was very fit at the time, running and cycling. This completely disappeared following my diagnosis and following a strict gluten free diet. I haven't had a single episode since, in 4 years.
    • trents
      Newly diagnosed with non celiac gluten sensitivity

      By trents · Posted

      Testing for celiac disease, whether blood antibody testing or biopsy procedure, will likely be invalidated when the gluten consumption has been discontinued ahead of the testing or the procedure for more than a couple of weeks or so. For the person with celiac disease, the consumption of gluten results in the production of specific antibodies that can be detected in the blood because the immune system is attacking the gluten as it comes in contact with the small bowel lining. The blood testing is designed to detect these antibodies. Over time, the inflammation wears down the villi that line the small bowel. The biopsy is designed to spot this damage to the lining. When gluten consumption is discontinued, these processes cease. Antibodies begin to disappear from the blood and the villi begins to rebuild. Many people begin to experiment with the gluten free diet before they seek testing and their doctors often neglect to check for this before ordering blood tests and biopsies.  If you want to be sure that you don't have celiac disease, you would need to endure a "gluten challenge" for a period of weeks. This would consist of resuming gluten consumption in the amount of at least 10g daily (the equivalent of about 4-6 slices of wheat bread) for at least two weeks and then get retested or re-biopsied. But regardless of whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity) the antidote is the same: total abstinence from gluten for life.
×
×
  • Create New...