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

Positive Bloodwork- Biopsy ?

breann6

Recommended Posts

breann6 Contributor
breann6
Posted

I received results from bloodwork this past monday that i tested positive for Celiac through bloodwork, and would need a biopsy to confirm the results. i have had severe stomach issues for months and tried gluten free (on my own)for three days and didn't have near the issues i normally would have. Then my dr tells me to stop (after telling him)gluten free because they have to have the biopsy before going gluten free. the prob is the biopsy is nearly three weeks away unless my GI DR. can fit me in sooner. My question is, if the bloodwork "clearly" indicates Celiac- my Dr's quote, what are the odds the biopsy will reveal otherwise and why do i have to wait to go gluten-free until then...he said its mainly to confirm diagnoses and check damage and also i have to have follow up biopsy after GL for a period of time?? Sound normal? Sick of being sick and just want to feel better...ready to hit the diet...already made gluten free chocolate cake yesterday and it was YUMMY!! couldn't even tell it wasn't a 'normal' cake :)

thanks in advance!!

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

Celiac.com Sponsor (A8-M):


jknnej Collaborator
jknnej
Posted

Personally, I would do the biopsy. You should to check how much damage is there, and to confirm the diagnosis. It is an easy procedure, with no pain involved, and then you will know for certain.

Also, if God forbid something is wrong in your small intestine because of gluten, they can catch it NOW.

CantEvenEatRice Enthusiast
CantEvenEatRice
Posted

The biopsy is the "gold standard" for diagnosing Celiac. I have no idea why though, especially if you have positive bloodwork. I was sick for at least 10 years before a doctor ran the Celiac blood tests. Mine came back positive and I immediately started the diet and my life changed. I never did have the biopsy. I guess the biopsy is a personal decision. Doctors will encourage it, but you have to decide if you want to keep eating gluten waiting for the test. Also, there are risks involved with having the biopsy. Even if your biopsy is negative, you already know you feel better on the diet. Even if your bloodwork was negative, you know you feel better on the diet. The diet is all the proof you need. But you even have the bloodwork, so you know you have Celiac. I am not saying not to have the biopsy, but I really don't think you definitely have to have it to find your answer. Best of luck!

breann6 Contributor
breann6
Posted
  • Author

thanks so much. I'll go forth with the biopsy just to make sure i don't have anything major wrong. Hopefully i get it moved up and hope that i can atleast start gluten free this weekend- a week or two gluten free shouldn't skew the results of the biospy? Does the blood work definately mean i have Celiac? Is the blood work often wrong and thats why the biopsy is used to confirm?

thanks to you both for your quick responses!! :)

LKelly8 Rookie
LKelly8
Posted

If your doctor says your bloodwork, ". . .clearly indicates celiac. . .", then you have celiac disease.

You're lucky, in a way. Many people don't get such a definitive answer from bloodwork.

The 'scope itself can rule out other illnesses (that you may have on top of the celiac) and it can check to see just how much damage there is to your small intestine. Some doctors like to do a follow up 'scope six months to a year gluten-free to see how well the intestine is healing.

Talk to your doctor about going gluten-free before the 'scope. He may not like that idea.

"...already made gluten free chocolate cake yesterday and it was YUMMY!!" Speaking of cake. :lol: I am anxiously awaiting the arrival of a gluten-free cake/brownie mix from amazon. I keep checking the front door to see if the UPS guy might be there. :P

Guest nini
Guest nini
Posted

My Dr. didn't have me do a biopsy because my bloodwork was so highly positive for Celiac. The more research I've done the more I'm convinced that the biopsy is an outdated and archaic method of dx'ing celiac. It can only confirm the dx, it can never ever rule it out. And, in my personal opinion it is cruel and unusual punishment to make someone continue to eat gluten once you know that is the problem, just to "confirm" the dx. Positive dietary response will confirm the dx AND if you start getting better, guess what, any damage done to your intestines is beginning to heal. IF after you've been gluten-free for say oh 6 months to a year and there has been ZERO improvement, then it's time to do a scope and see if something else is going on, keeping in mind that on average it takes someone 2 years to truly begin to heal from Celiac. My personal opinion is that the biopsy is too risky for too little information. But you have to make the choice that you are comfortable with.

mamatide Enthusiast
mamatide
Posted
the prob is the biopsy is nearly three weeks away unless my GI DR. can fit me in sooner. thanks in advance!!

If it's only 3 weeks away I say wait and find out for certain. I had to wait 3 months just for bloodwork... consider yourself lucky it's so close.

Gluten free for life is a big commitment and somewhere down the road (if you go gluten-free before biopsy and biopsy shows questionable results as a result) you may start to wonder if you really do have Celiac, is it worth it to stay gluten-free...

I see this as an opportunity to assess whatever damage is already present and to start gluten-free with a clean slate.

But that's my opinion... I wonder how long it's going to be for me to be scheduled for a biopsy.

mamatide

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

I've heard way too many stories of the biopsies missing damage for too many years and then the person being told "oh you don't have celiac after all" then they keep eating gluten, keep getting sicker (this is all with positive blood test results) and eventually get a biopsy that comes back so highly positive and with so much damage and by this time the person has developed other related autoimmune disorders that require constant medication for.

chgomom Enthusiast
chgomom
Posted

Mr doc who concentrates her practice on celiac disease and research, said een 6 weeks gluten free isn't enough to really skew a biopsy and challanges if you have highly positive blood work are more dangerous than they are beneficial.

breann6 Contributor
breann6
Posted
  • Author

Thanks for all of your replies!! I got a call this afternoon and will be seeing my gastro tomorrow afternoon instead of the orginal appt. :) I'll update tomorrow on what i find out...

thanks again!

B

Mountaineer Josh Apprentice
Mountaineer Josh
Posted

I definitely suggest getting the biopsy. My bloodwork was 260 and they still did the biopsy to be sure. Fortunately or unfortunately for me, I'm pretty much asymptomatic so it was good to have the biopsy done to prove to me that something was truly amiss. My only symptoms over the years were some mild cramps and bloating.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,612
    • Most Online (within 30 mins)
      7,748
    Rotary
    Newest Member
    Rotary
    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

    • itsdunerie
      Potential celiac need advice

      By itsdunerie · Posted

      Dang......did it again and yeah I should admit I am 63 with clumsy phone thumbs. I started feeling better quickly and a doctor a year later said I had to eat  poison (gluten) every day for a month so he could formally diagnose me and NO FREAKING WAY. I couldn't then and can't imagine putting my body through that crap (no pun intended) on purpose ever again.  Why ingest poison for a month to have some doctor say Hey, All you Have To Do Is Never Eat poison Again.. 
    • itsdunerie
      Potential celiac need advice

      By itsdunerie · Posted

      Poop head, sorry, but I accidentally posted and can't figure out how to continue my post. My long winded post was going to tell you that after I figu
    • itsdunerie
      Potential celiac need advice

      By itsdunerie · Posted

      15 years ago my best friend 'diagnosed' me as Celiac. Her little nephew had been formally diagnosed and her observations of me dealing with brain fog, stomach problems and other stuff had her convincing me to try going gluten free. Oh my heavens, within 3 days, no lie, I felt human again. Took me about a y
    • Scott Adams
      Potential celiac need advice

      By Scott Adams · Posted

      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Potential celiac need advice

      By Wheatwacked · Posted

      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
×
×
  • 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.