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

Negative Blood Test But Visible Damage?


Eggs

Recommended Posts

Eggs Rookie

Hi again! Just had some testing. Am a little confused and would appreciate input. 

My lab results were basically negative (deamidated gliadin abs, iga was one point above the reference range, everything else normal), but I had only been eating gluten again for 4 weeks after my doctor drew them after 2 months gluten free. He ordered a biopsy too because in addition to having symptoms that could be celiac disease I have Sjogren's so am at a higher risk. 

I haven't seen the doctor since I got the blood test results (I saw them online), but I just had the endoscopy Wednesday (after 7 weeks back on gluten). No biopsy results yet, but the doctor said he saw damage in my intestine consistent with celiac disease. But he didn't say I have celiac disease. Was he just covering his bases by refusing to commit or is there really a chance that the biopsy comes back negative? I'm worried that my uneventful blood work is going to cause a problem with the diagnosis. My GI told me he's had patients with on-the-fence biopsies and negative blood results who he decided didn't have celiac disease. Does anyone have any input? Can you have visible damage and a negative biopsy and negative blood work?

Thanks for any input!


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

It can take time to build up antibodies in your blood.  That's why celiac experts recommend 8 to 12 weeks of consuming gluten prior to the blood draw.  I am sorry that your doctor did not follow the GI Association's (American, British or Canadian) protocol for celiac disease diagnostics.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

 

It is no wonder that your GI has patients "on the fence".  Perhaps, it is time to get another doctor or at least a second opinion from a more celiac-savvy GI?  

In any case, wait for the biopsies.  I know that it is hard to be patient.  Remember, villi damage can be attributed to many things besides celiac disease.  Without a positive blood test, it is hard to have a definitive diagnosis.  But....you can always test by going gluten-free for six months and gauge how you feel.  Not the best solution, but the bottom line is that you want your health to improve.  

squirmingitch Veteran

I'm quoting you:

 (deamidated gliadin abs, iga was one point above the reference range, everything else normal)

 

You had a positive blood test period! That one positive can not be ignored. A positive is a positive even if it isn't sky high. This is more significant in light of your having only been back on gluten for 4 weeks.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,171
    • Most Online (within 30 mins)
      7,748

    kyle68j
    Newest Member
    kyle68j
    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

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...