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

Biopsy Boardline and Blood work negative


boarderline??

Recommended Posts

boarderline?? Newbie

Hi I'm new to the forum and need some help please.  I have had RA and Sjorens for over 6 years.  Also anemic and while following that up they did a lower and upper scope and biopsies.  The biopsy came back boarderline for Celiac disease.  Bloos test was done and while waiting for that I started to do alot of research about the disease and seemed from what I read that the blood work would come back positive.  Nope couldn't be that easy the blood work came back negative.  So now I'm not sure which is the most accurate?  I figure I should just follow that diet and see what happens but I have read it could take up to 2 years to see real results and doubt I could do that without an actual answer.   Please help!!

 


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



Celiac.com Sponsor (A8-M):



Gemini Experienced

 Are you on any immuno-suppressive drugs for your RA/Sjogren's?  Some of them can interfere with blood testing results.  If not, then it is entirely possible for blood work to be negative and biopsy positive.......that happens to a lot of people.  Neither one is more accurate than the other as damaged villi can be missed on biopsy if damage is patchy.  I am not even sure what borderline means on a biopsy report.  You either have damage or you don't.

Having both RA and especially Sjogren's puts you into the higher risk category for Celiac.  I also have Sjogren's.  Could you post the biopsy results, if you are comfortable with doing that?

 

boarderline?? Newbie

I am on Leflunomode, Nabumetone, hydroxycloroquine and Pilocarpine.  Not sure if any of these would interact with the test or not.  I know I fasted the day before for the scope and hadn't eaten much before I got the blood drawn so not sure if that could mess with it or not.  I don't have any of the reports for the biopsy the doctor just called and said it was boarderline and ordered the blood work.  Feel like I have been left hanging  by them just got a call from a someone in the doctors office (not the Dr) telling me that the result was negative and when I asked if that meant I could have gluetin she responded yes.  Dummy me didn't ask to talk to the Dr

Gemini Experienced

Two of the four drugs listed are immuno-suppressive drugs.  Leflunomode and Plaquenil are the two so there is a strong possibility that either of these 2 (or both) could have affected antibody testing.  If you are testing an antibody level in autoimmune testing (Celiac) and take meds that suppress the immune response, testing results may be useless.  I am not saying for sure that they will but the odds are higher that they might.  Most doctors don't even take this into account, which always boggles my mind.

I think you need a new GI doctor because the one you have is not doing you any good.  You can ask them for the biopsy report and post it here.  You have a right to all medical testing results.  I would not go back to eating gluten unless you want to be re-tested by someone more competent.  Having these 2 diseases, plus anemia, makes the odds of you having Celiac much higher than not.  You could also do gene testing to see if you carry any of the main Celiac genes but that will not tell you if you have it.  It just tells you whether you have the genetic make-up to trip for it.  You do sound like a strong possibility for Celiac, though.

Many people with RA notice much pain improvement when following a gluten-free diet......if you have Celiac.  When I went gluten free after diagnosis, my Sjogren's symptoms improved.  I take no systemic meds for it, although I do use Restasis eye drops for my dry eyes.  Don't get me wrong, Sjogren's still sucks big lemons but things stabilized for me. We'll see what happens as I continue to age......:rolleyes:

frieze Community Regular

Gem, check into Vitamin D, into dry eye.

 

Gemini Experienced
14 hours ago, frieze said:

Gem, check into Vitamin D, into dry eye.

 

I take a lot of Vitamin D and my levels are the highest they have ever been.  They have gone from the twenties to 62 so I keep plugging away at that.  I just have a lot of collateral damage from going so long as an undiagnosed Celiac. I also take 2,000 mg per day of omega fish oil and flax seed oil, which is supposed to specifically help with dry eye.  This is all doing wonders for my good cholesterol but my eyes can still be problematic during allergy season.  I am sure if I didn’t do all this things would be much worse but I wish I could bump it up to the next level of better. I’m sure the aging thing isn’t helping matters any........<_<

If there is something I am missing here, please let me know! 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,680
    • Most Online (within 30 mins)
      7,748

    emmajag
    Newest Member
    emmajag
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Beverage
      I strongly agree with others about processed gluten free foods, like breads and pasta, being bad for us. Read the labels, full of this starch and that starch, seed oils that are inflammatory, etc. Before you were celiac, you probably wouldn't even touch something with those ingredients. I do much better with whole foods, meat, veggies, a little fruit. I made 90% myself, make extra and freeze it for future meals. Cutting out processed gluten free food and eating mostly real whoke food helped me feel much better. And definitely benfotiamine!
    • knitty kitty
      Please be sure to try Benfotiamine or Thiamine Hydrochloride.  The form Thiamine Mononitrate is not absorbed nor utilized well.  Benfotiamine is much more bioavailable.  Perhaps Thiamine Mononitrate was in your previous B Complex supplements, explaining why they didn't work for you.   All the B vitamins work together.  Thiamine needs the other B vitamins to make enzymes and ATP, so you will need to take them.  Taking them in individual supplements is fine.  I've done the same.  Just remember you need all eight.   Let me know how it's going for you!
    • Zuma888
      Thanks! This makes a lot of sense.
    • Zuma888
      Thanks! I am currently trying B1 out on its own. I tried many brands of B-complex and they always make me feel nauseous and tired. I think I may have to try taking each B vitamin on its own.
    • ARutherford
      Thank you heaps for this advice!  
×
×
  • Create New...