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:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Celiac friendly probiotics

    2. - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

    3. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    4. - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

    5. - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748

    Peta Dunn
    Newest Member
    Peta Dunn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Florence Lillian
      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
×
×
  • 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.