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

Negative Blood Test- Positive Biopsy


peeptoad

Recommended Posts

peeptoad Apprentice

How common is it to have a negative blood test and a positive biopsy?

My blood test was negative and my doctor (maybe with good reason) never went any further with testing and dismissed celiac. About a year or two later I found out onmy own that gluten was one of the major culprits in my GI problems, so I went gluten-free.

A year after that I had a routine visit with my doctor and she asked how my GI stuff was going and I told her it was mostly fine, except when I ate gluten. She then proceeded to tell me that she'd had multiple patients who tested negative on blood come back and tell her they found out gluten was a problem...

I wonder how many people actually go through with the biopsy even when the blood is negative??


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



Celiac.com Sponsor (A8-M):



Bubba's Mom Enthusiast

How common is it to have a negative blood test and a positive biopsy?

My blood test was negative and my doctor (maybe with good reason) never went any further with testing and dismissed celiac. About a year or two later I found out onmy own that gluten was one of the major culprits in my GI problems, so I went gluten-free.

A year after that I had a routine visit with my doctor and she asked how my GI stuff was going and I told her it was mostly fine, except when I ate gluten. She then proceeded to tell me that she'd had multiple patients who tested negative on blood come back and tell her they found out gluten was a problem...

I wonder how many people actually go through with the biopsy even when the blood is negative??

I was really sick when I first went to a GI. My PCP kept telling me there was nothing physically wrong with me..

When I told the GI my symptoms, which were many, and severe. She said she wanted to schedule an endoscope right away, along with a stomach emptying study, and some blood tests. I had blood drawn that day and my scope about a week later.

When she did the endoscope she said I had total villi flattening, scalloping, and a mosaic pattern in my intestine instead of villi. She DXed me on the spot and gave me pics. She also did several biopsies too though.

The results of my blood tests came in a day later. It was negative for Celiac. I'm so thankful that everything was ordered at once. Some Dr.s do the blood test and if it's negative don't look any further. The blood tests are wrong 20-30% of the time.

peeptoad Apprentice

I was really sick when I first went to a GI. My PCP kept telling me there was nothing physically wrong with me..

When I told the GI my symptoms, which were many, and severe. She said she wanted to schedule an endoscope right away, along with a stomach emptying study, and some blood tests. I had blood drawn that day and my scope about a week later.

When she did the endoscope she said I had total villi flattening, scalloping, and a mosaic pattern in my intestine instead of villi. She DXed me on the spot and gave me pics. She also did several biopsies too though.

The results of my blood tests came in a day later. It was negative for Celiac. I'm so thankful that everything was ordered at once. Some Dr.s do the blood test and if it's negative don't look any further. The blood tests are wrong 20-30% of the time.

Thanks. I was aware of the false-negatives on blood test, but wasn't sure how often people actually got the biopsy if their blood turned up negative. It's a good thing in your case (as you say) that everything was ordered all at once.

I think it's probably much more common for a doctor to not order the BX if the blood is negative...but I wonder how many people out there are celiac and don't know it. :huh:

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 Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    2. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    5. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,152
    • Most Online (within 30 mins)
      7,748

    denise.milillo
    Newest Member
    denise.milillo
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.