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Biopsy Boardline and Blood work negative

boarderline??

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boarderline?? Newbie
boarderline??
Posted

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!!

 

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Gemini Experienced
Gemini
Posted

 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
boarderline??
Posted
  • Author

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
Gemini
Posted

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
frieze
Posted

Gem, check into Vitamin D, into dry eye.

 

Gemini Experienced
Gemini
Posted
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! 

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