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

Can I still have celiac disease of the biopsies came back normal?

Lilbarista

Recommended Posts

Lilbarista Newbie
Lilbarista
Posted

A couple weeks ago I had the upper and lower scopes done. My gastroenterologist called me this morning telling me that everything looked fine. She told me that my blood work wasn't great because I have low ferritin and high b12. Is it possible to have celiacs even if the biopsies  came back normal?

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

Celiac.com Sponsor (A8-M):


StephanieL Enthusiast
StephanieL
Posted

Did they run ay Celiac disease serology on you?  That would have been the typical first place to start.


As for the biopsy- Celiac isn't something that attacks the entire lining of the intestines, it's patchy at best so it is possible to miss it esp. if the Dr. didn't take enough biopsies to begin with. I would start with asking for a copy of the patho report and seeing how many samples were taken. 

Lilbarista Newbie
Lilbarista
Posted
  • Author
28 minutes ago, StephanieL said:

Did they run ay Celiac disease serology on you?  That would have been the typical first place to start.


As for the biopsy- Celiac isn't something that attacks the entire lining of the intestines, it's patchy at best so it is possible to miss it esp. if the Dr. didn't take enough biopsies to begin with. I would start with asking for a copy of the patho report and seeing how many samples were taken. 

I'm sure she did that first. I go in on the 7th to talk to her about my pain and what can be done. I'll ask for a copy of everything. 

Celiac Nutritionist Newbie
Celiac Nutritionist
Posted

They need to have taken at least 4-6 samples for accuracy.    Many GI don't know this yet and only take one or two.

Question both your Gastroenterologist and the pathologist to ensure that they are both familiar with Celiac disease.

 

To respond to your question about if its still possible... maybe yes.   If enough samples were not taken, it will not give you accurate results.

Also, they may not have shown "enough" damage yet to be "classified" as Celiac.

-When you get your reports back (always always take a copy home for your own file!)  check to see if they say anything like "mild Villus atrophy" or "non specific duodenities"

Hope that helps!

Kendra

 

 

Archived

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

Go to topic listing

  • 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. Scott Adams
      - Scott Adams commented on Scott Adams's article in Additional Concerns
      4

      Going Low-Gluten May Harm Good Gut Bacteria, Researchers Warn

      Researchers are working on T cell modification therapy that could one day let celiacs eat gluten.
    2. chrisinpa
      - chrisinpa commented on Scott Adams's article in Additional Concerns
      4

      Going Low-Gluten May Harm Good Gut Bacteria, Researchers Warn

      It's like a double edged sword.......we do one thing to improve a problem and cause another problem. I'd like to think the ultimate cure might be something that would train or modify the body to prevent the damage that gluten causes.
    3. Flash1970
      - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

      You might try Heallix. It's a silver solution with fulvic acid. I just put the solution on with a cotton ball. It seemed to stop the nerve pain. Again, not in your eyes or ears. Go to heallix.com to read more about it and decide for yourself Also, I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out...
    4. trents
      - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being...
    5. Roses8721
      - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,500
    • Most Online (within 30 mins)
      7,748
    HDM005
    Newest Member
    HDM005
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Flash1970
      Shingles - Could It Be Related to Gluten/ Celiac

      By Flash1970 · Posted

      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
    • Scott Adams
      Help

      By Scott Adams · Posted

      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
×
×
  • 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.