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 Blood Test, Negative Biopsy


jlynn

Recommended Posts

jlynn Rookie

Hi everyone,

I was recently told that I had celiac and to start a gluten free diet. I was gluten free for two weeks, and then had a biopsy which was negative for Celiac Sprue. Could the two weeks of gluten free food make my biopsy negative? The doc said he thinks I don't have celiac but to stay gluten free for 6 months and then add wheat. Does anyone have a take on this? Thanks.


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

That sounds like excellent advice. That will give you time to analyze a gluten-free diet and know if you feel better. And a challenge in 6 months will probably make it very clear if gluten is causing you problems.

jhun Rookie

same story with me but i was gluten-free for one month before biopsy. biopsy turned out negative for celiac but found gastritis and peptic duodenitis caused by h pylori, felt really good after the 1 week antibiotic course. doctor ordered me back on gluten but i decided to stay gluten-free even though i know that i can eat gluten without any problem i mean symptoms, its the long term damage im afraid of.

jlynn Rookie
same story with me but i was gluten-free for one month before biopsy. biopsy turned out negative for celiac but found gastritis and peptic duodenitis caused by h pylori, felt really good after the 1 week antibiotic course. doctor ordered me back on gluten but i decided to stay gluten-free even though i know that i can eat gluten without any problem i mean symptoms, its the long term damage im afraid of.

I don't understand. So you believe that you do not have celiac? does the doc think that also? What long term effects are you afraid of if you do not have celiac disease. Does anything happen when you eat gluten? Thanks for your input. Jennifer

jhun Rookie
I don't understand. So you believe that you do not have celiac? does the doc think that also? What long term effects are you afraid of if you do not have celiac disease. Does anything happen when you eat gluten? Thanks for your input. Jennifer

See, after getting diagnosed through bloodwork i tried an elimination diet and gluten challenge i got hurt most with soy but i dont react with gluten at all. most of the people in this board says that if youre blood work is positive then you have it, so to be on the safe side and avoid the long term effects i prefer to stay gluten free although like what ive mentioned earlier i can eat gluten without any symptom flare up but who knows what its causing my intestines. most of the posters here also say that a negative biopsy doesnt mean a thing if you have a positive bloodwork.

pooter Newbie

yep, negative biopsy means nothing if blood work is positive. The Dr. I work for says that dietary response is the best way to tell if you have a problem with gluten. He usually recommends one week completely off gluten, then have a huge gluten meal and watch for symptoms. So based on that advice I would say that two weeks off gluten would affect biopsy results.

JennyC Enthusiast

That is exactly why I plan to refuse to let my son be biopsied. He had tTG levels three times the normal max for his age, and he pediatrician told me to start the gluten-free diet right away. I did before knowing about the possibility of further testing. After three very successful weeks I am not giving him back his gluten goodies only to take them away again. Why put my three year old through a biopsy when there is large possibility that it will come back negative? I have seen fantastic results since putting him on a gluten-free diet. There's no going back now.


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



Celiac.com Sponsor (A8-M):



L.A. Contributor

I too had a positive blood test and a negative biopsy--but biopsy was done after going gluten free for 6 months. The number from my initial blood test were 59. The blood test was redone after a year and my number was 23 and then last year the number was 7. Doc says normal range is in the 20's.

jhun Rookie

jenny, in your son's case it's pretty obvious and conclusive that your son is a celiac. there is really no point in doing a biopsy. in my case i insisted on the biopsy because after a month in the gluten-free diet my symptoms are not improving. the biopsy was negative for celiac but revealed h pylori that was treated with antibiotics and made all of my gastro symptoms disappear. now, it is just the blood work that has tied me to celiacs which is really confusing sometimes im getting tempted to stay out of the diet but i just keep on thinking about my health's future.

NoGluGirl Contributor
Hi everyone,

I was recently told that I had celiac and to start a gluten free diet. I was gluten free for two weeks, and then had a biopsy which was negative for Celiac Sprue. Could the two weeks of gluten free food make my biopsy negative? The doc said he thinks I don't have celiac but to stay gluten free for 6 months and then add wheat. Does anyone have a take on this? Thanks.

Dear jlynn,

I had negative blood tests several years ago, and a negative biopsy. However, the doctor I am with now diagnosed me as Celiac. I began recovering in a few days of being on the gluten free diet. I had a team of doctors working on me before, and I do not even think they knew what villi was or what to look for. You do not get violently ill from a microscoping amount of gluten unless you are Celiac. My doctor told me she has had a handful of patients have this occur with negative tests who were Celiac. The doctors up at IU even missed my gallbladder, despite the supervising doctor of the group being the head of Gastroenterology and Hepatology! The gallbladder is part of the hepatobialary system! :angry:

Sincerely,

NoGluGirl

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

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

    Hollee
    Newest Member
    Hollee
    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

    • Gigi2025
      Hi Theresa,  A few of my friends have your same story. You may be right about barley, etc.  18 years ago at a football game while clapping, suddenly my 4th finger was in agony.  It looked like a vein had burst. It was blue for a couple hours, then disappeared.  Finally realized it happened every time when drinking beer.  It's occurred several times over the years when opening a jar, lifting something that was a bit heavy, holding on to tight to something.  Immediate icing stops the pain and discoloration.  Now avoiding wheat in the US, it rarely happens.  Thanks for the reminder.  Will have Entero Labs run another test. Unfortunately they've relocated to Switzerland/Greece.
    • Russ H
      The EMA test is an old and less sensitive test for anti-tTG2 antibodies. It relies on a technician using a microscope to check for fluorescence of a labelled substrate (typically monkey oesophagus or human umbilicus), giving a simple positive/negative result. It is similar to running a standard anti-tTG2 test but with a high cut-off, making it more specific but less sensitive. Transient rises in tTG2 can be caused by e.g. viral infections and inflammation. Very high levels of anti-tTG2 (>x10 standard range) are almost certainly coeliac disease but moderately raised levels can have several causes apart from coeliac disease. Other food allergies can cause villi blunting but that is much rarer than coeliac disease or other non-coeliac causes. Not All That Flattens Villi Is Celiac Disease: A Review of Enteropathies
    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  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:    
×
×
  • 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.