• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
Holly4

Positive Blood And Negative Biopsy

Rate this topic

Recommended Posts

Excactly what I didn't want to happen has happened...I have a postive blood test for celiac and my biopsy came back as normal. My GI says no way do I have celiac. I have been gluten free for about 4 days. Now I don't know what to do. I don't want to be gluten free if I don't have to, but I also dont want to not go gluten-free if I really have celiac. I would love any input on this matter especially if you have had a similiar experience.

My GI doesn't seem to know much about celiac and only biopsied 2 spots. I wondered if that were enough. He also discovered I have Reflux and damage in my esophagus from that-which has just started in the last month or so...he called in a prescription which I hate to have to take.

I am so lost! Please help if you have any good info or ideas.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


A positive blood test trumps the negative biopsy. Some doctors diagnose without biopsy if the blood tests are positive as the rate of false negatives is pretty high. The damage your doctor did find could very well be due to celiac. I would stay on the diet strictly and give yourself time to heal. The choice to take the meds now or wait a bit and see if you get relief from the diet is up to you, I can't really advise on that one way or the other. You may want to avoid dairy and soy for a little while at first also.

  • Upvote 1

Share this post


Link to post
Share on other sites

It would be very rare (if at all) to have a positive blood test and not have celiac. In this case, I would consider yourself as having celiac.

Your GI should have taken at least six biopsies and even then, if damage is patchy, they may not have shown anything. By going gluten-free, you may find your answer in the way you feel. I understand your not wanting to have celiac...I mean, who does? We'd all like to eat whatever we want whenever we want. So if it were me, I'd go gluten-free and never look back.

  • Upvote 1

Share this post


Link to post
Share on other sites

A positive blood test is enough to diagnose celiac. Your doctor should have taken 5-6 biopsies, as intestinal damage can be patchy. It's also possible that he messed up with the biopsies or that your celiac isn't severe enough yet to cause substantial intestinal damage.

Regardless of why the biopsy was negative, staying gluten free is a must!

  • Upvote 1

Share this post


Link to post
Share on other sites

You're latent! Or "potential"! Definitely stay on the diet unless you want to get sicker and have another endo and/or related health complications like osteoporosis and B12-deficiency related neuropathy in your future.

There's actually a good bit of recent research examining people like you (us). Turns out, they can avoid the whole flat intestines thing by going gluten-free. It's beginning to look like the flattening intestines is the final outcome rather than an early sign of celiac disease.

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:


Ignore the ignorant doctor, listen to the blood test. That recent study involved patients with positive blood tests and negative biopsies, specifically. And those with positive blood tests had metabolic problems just like the positive biopsied celiacs.

The speculation after the study was that the blood test being positive may precede positive biopsies. If it were me, I'd go with the most recent information over the doctor's outdated info.

  • Upvote 1

Share this post


Link to post
Share on other sites

This is exactly what happened to me. I finally bit the bullet and decided to get the biopsy done by a specialist at the Celiac Clinic at New York Presbytarian. It came back clean. My doc said the blood test is only a guide to be used for further evaluation, by no mean definitive. In fact he said it is prone to both false positives and negatives based on a number of variables. I have been heavily stressed for a period of time with a new business and this is when these problems manifested themselves. He put me on Valium, and within a few days I was feeling my old self again, no more bloating or other GI problems. He said the stress can easily through off any blood test. He advised me to reintroduce the gluten into my diet again and see how I feel. He plans to run a blood test again after several weeks and see what the results are, but he anticipates they will be normal this time. So far so good.

Share this post


Link to post
Share on other sites

This is exactly what happened to me. I finally bit the bullet and decided to get the biopsy done by a specialist at the Celiac Clinic at New York Presbytarian. It came back clean. My doc said the blood test is only a guide to be used for further evaluation, by no mean definitive. In fact he said it is prone to both false positives and negatives based on a number of variables. I have been heavily stressed for a period of time with a new business and this is when these problems manifested themselves. He put me on Valium, and within a few days I was feeling my old self again, no more bloating or other GI problems. He said the stress can easily through off any blood test. He advised me to reintroduce the gluten into my diet again and see how I feel. He plans to run a blood test again after several weeks and see what the results are, but he anticipates they will be normal this time. So far so good.

I'm no doctor, but I really question this. I mean, how can stress change or affect your positive antibodies for celiac? Were you eating gluten-free before your biopsy and if so, for how long? Did he take at least 6 biopsies? It's quite possible that damage was patchy or not severe and he could have biopsied areas that weren't damaged.

By reintroducing gluten you may very well have your answer regardless of the failure of the biopsies to indicate celiac.

Share this post


Link to post
Share on other sites

This is exactly what happened to me. I finally bit the bullet and decided to get the biopsy done by a specialist at the Celiac Clinic at New York Presbytarian. It came back clean. My doc said the blood test is only a guide to be used for further evaluation, by no mean definitive. In fact he said it is prone to both false positives and negatives based on a number of variables. I have been heavily stressed for a period of time with a new business and this is when these problems manifested themselves. He put me on Valium, and within a few days I was feeling my old self again, no more bloating or other GI problems. He said the stress can easily through off any blood test. He advised me to reintroduce the gluten into my diet again and see how I feel. He plans to run a blood test again after several weeks and see what the results are, but he anticipates they will be normal this time. So far so good.

I'm sorry but your doctor is flat out wrong about stress causing a positive blood tests. Stress does not cause your body to make antibodies. Celiac symptoms can be sporatic at first and the relief you were getting was from being on the diet. Chances are good that reintroducing gluten is going to flare those symptoms again.

Share this post


Link to post
Share on other sites

Hi. I'm new to this board and being diagnosed. Curious which blood test you guys mean...? I tested positive for celiac with the genetic testing, but negative with the biopsy and, I think, the antibodies....? But I had been gluten free for months before testing (with just 1 slip). I feel better gluten free so, doc diagnosed me with celiac. Anyone else have this experience?

Probably not where I should post this (sorry for hijacking!), but I'm also wondering how long it takes to feel "normal" again... I'm still bloated, sometimes constipated, etc..

?

Thanks!

:)

Share this post


Link to post
Share on other sites


Ads by Google:


Excactly what I didn't want to happen has happened...I have a postive blood test for celiac and my biopsy came back as normal. My GI says no way do I have celiac. I have been gluten free for about 4 days. Now I don't know what to do. I don't want to be gluten free if I don't have to, but I also dont want to not go gluten-free if I really have celiac. I would love any input on this matter especially if you have had a similiar experience.

My GI doesn't seem to know much about celiac and only biopsied 2 spots. I wondered if that were enough. He also discovered I have Reflux and damage in my esophagus from that-which has just started in the last month or so...he called in a prescription which I hate to have to take.

I am so lost! Please help if you have any good info or ideas.

Couple of things: could you go to another doctor who DOES know more about Celiac disease? Ask the receptionist if the doctor does a lot of biopsies. I was told that it takes some skill and skill oftentimes comes with practice. Not that you'd necessarily want to have another biopsy, but just to talk with him/her about yours.

I base the second comment on a recent visit I had with my own doc. I have been seriously gluten free for the better part of a year. I test positive for both genes and my antibodies were up. I decided that since I had never had a biopsy and he had just diagnosed me from my previous symptoms (goiter) and my blood work, maybe it would be a good idea to have one. I asked about it and of course he explained it would take a gluten challenge to do so. I declined. But the critical thing is, he says that as my blood work is showing improvement, the chance of actually finding damage is marginal and it wouldn't change anything anyhow, except make me sicker for another chunk of time. As long as I'm getting better I'm listening to him! Unfortunately, feeling better isn't always what happens at first. Sometimes it takes some time for your body to readjust, as you will see reading some of the other comments.

Good luck!

Share this post


Link to post
Share on other sites

Hi. I'm new to this board and being diagnosed. Curious which blood test you guys mean...? I tested positive for celiac with the genetic testing, but negative with the biopsy and, I think, the antibodies....? But I had been gluten free for months before testing (with just 1 slip). I feel better gluten free so, doc diagnosed me with celiac. Anyone else have this experience?

Probably not where I should post this (sorry for hijacking!), but I'm also wondering how long it takes to feel "normal" again... I'm still bloated, sometimes constipated, etc..

?

Thanks!

:)

Blood tests would either be the complete celiac panel or the newer DGP tests (I guess whatever test asked for would depend on the lab doing the analysis) but if you've been gluten-free, the results would probably not be accurate. The gene tests are definitely NOT diagnostic as people can have the genes and never get celiac.

I'd say your body has already given you the answer, test or no test. And yes, I still have occasional ups and downs...still trying to figure out what "normal" is. lol

Share this post


Link to post
Share on other sites

Blood tests would either be the complete celiac panel or the newer DGP tests (I guess whatever test asked for would depend on the lab doing the analysis) but if you've been gluten-free, the results would probably not be accurate. The gene tests are definitely NOT diagnostic as people can have the genes and never get celiac.

I'd say your body has already given you the answer, test or no test. And yes, I still have occasional ups and downs...still trying to figure out what "normal" is. lol

Thanks for the response!

Yeah, my doc said she's confident, given my symptoms, the testing, and my history and response to gluten-free diet, that I DO have celiac and need to live accordingly. Glad to hear I'm not the only one figuring out what "normal" is...

Thanks!

:)

Share this post


Link to post
Share on other sites

I had a follow up appointment with my GI and he only did one biopsy of my small intestine. It was near the top as well....I am so frustrated. He said it looked normal when he went in there and I think he just assumed it was fine. He did find that I have a problem with reflux which was news to me!

He had also told me I could go gluten free 2 weeks before the biopsy because the cilia would not have time to heal. Is this true???

Share this post


Link to post
Share on other sites

I am no doctor but I do believe that Celiac individuals commonly have Reflux. I would google that. From what I've read a doctor should take about 6 samples in a biopsy. A doctor cannot necessarily see the damage unless its bad, it needs to be sent to a lab for verification. What blood test were you positive on for Celiac?

Share this post


Link to post
Share on other sites

Normally they take about 6 samples in a biopsy. One sample is not enough. If you don't mind me asking do you know what Celiac Test you were positive on? Also, I believe Reflux is common in Celiacs. You may want to google that. You should not be gluten free prior to a biopsy, you need to remain on a Gluten diet. You might consider finding another GI more familiar with Celiac Disease. Best wishes.

Share this post


Link to post
Share on other sites

I had a follow up appointment with my GI and he only did one biopsy of my small intestine. It was near the top as well....I am so frustrated. He said it looked normal when he went in there and I think he just assumed it was fine. He did find that I have a problem with reflux which was news to me!

Your doctor is not competent to diagnose celiac if he can't even biopsy for it properly. I wouldn't trust him to take my temperature. Get a new dr if you can, and get them to test for the nutritional deficiencies that can come with celiac. Iron, B12, folate, vit d, thyriod panel, i'm sure i'm missing some but there are a lot of other posts that recommend what follow up tests you should have.

A couple of other posters have mentioned recent research indicating that those with positive blood tests and negative biopsies showed metabolic changes that were the same as people with celiac. I think that is a good indication that there is a real problem!

From a personal point of view, I had the same thing happen 3 years ago. Positive blood tests, negative biopsy, and my dr said there was no way that gluten was causing my problems. I believed him, and it took another year of being very sick before a different doctor made it clear that I needed to be gluten free. I've been gluten free over 2 years, and am only just regaining my health after 6 months of a very restrictive elimination diet to deal with multiple food intolerances.

If I had gone gluten free at the time of the biopsy I would have been spared 2 more years of terrible health. I developed bad iron and b12 anemia, depression and lots of other food intolerances because of that additional year of damage. Take this seriously!!

Share this post


Link to post
Share on other sites

When, oh when, will doctors stop "practicing" medicine and start being real doctors???

Share this post


Link to post
Share on other sites

Normally they take about 6 samples in a biopsy. One sample is not enough. If you don't mind me asking do you know what Celiac Test you were positive on? Also, I believe Reflux is common in Celiacs. You may want to google that. You should not be gluten free prior to a biopsy, you need to remain on a Gluten diet. You might consider finding another GI more familiar with Celiac Disease. Best wishes.

Hello,

I was a strong positive on the Tissue transglutaminase and moderate positive on the deamidated gliadin. Can other things cause these to be high?

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,949
    • Total Posts
      943,641
  • Member Statistics

    • Total Members
      67,313
    • Most Online
      3,093

    Newest Member
    Kellyon
    Joined
  • Popular Now

  • Topics

  • Posts

    • So PC is not celiac pc? I'm sure fictitious  "Tina" in the ad will discard her "immature anti celiac ad friends" like used napkins and find new friends that are less grossed out by her autoimmune disease.  Or perhaps fictitious "Tina " will patiently educate the baffon friends in the ad. Tina's choice. Another company made a bad choice to join the gluten dude list of celiac bashing in the public media  Hey PC want to attempt to get out of dog house ? contact me for where to send my check For your next marketing idea/ script for your commercial  Your next commercial show two tables one designated gluten-free and one non gluten-free show 2 different color coded themes one gluten-free and non gluten-free example red for gluten-free and black non gluten-free ( whatever game day team colors- catch my drift) showing gluten-free cake served on red plate and non gluten-free cake on other table on black plate. Yo support celiac awareness and safety. this marketing tip per AWOL  contact me for my royalty checks  👍  
    • .....damn I thought I had run into stupid doctors on my own, yours flip flop more then a ADHD kid and I should know that one. Yep celiac and gluten-free for life....get copies of all your POSITIVE test and compile them in a folder, write the others off as doctor stupid was tripping on acid. Get copies of all your medical records and personally take them to a new doctor....might want to look through them first and make sure the idiot did not put anything in there wrong. Well if you can anyway......
      Congrats on the diagnosis and sorry you found one of the idiots, you get those a lot in life just sucks when it is someone in charge of your well-being and health like that. I take it you have already been through the newbie 101 thread and gone to a whole foods diet to boost up the healing, cleaned out the kitchen and set for the haul.  
    • Also I should add that in the 12 weeks, my vitamin d plummeted and now am deficient. Would you guys accept a celiac diagnosis (I am pretty confident that I have it- I was sad before the challenge that I couldn’t eat gluten anymore. Now after the challenge i am EXCITED to never eat it again as I feel like such crap now) or can a positive diamodated Gliadin  IgG indicate anything else? Or is it specific to celiac? I am happy to get a diagnosis,  but want to make sure it’s the right one. I wish I trusted my doc more (example- 3 days ago they called and said congrats, no celiac, u can eat gluten!! The doc signed off on it. But I looked at my results and pointed out that the deamidated IgG levels were not reported yet. The doc said whoops my bad. The next day they came back positive and I got another call & they said, nevermind, no gluten, you’re positive! They are idiots). 
    • Looking for advice and also to help those undergoing testing. I went to my general practitioner back in August with nausea, bloating, diarrhea, migraines, sluggishness, and a feeling of general unwellness. I was eating a gluten diet at the time. My doc ordered the dual antigen screen- it came back positive for celiac. He set up an appointment for me with a specialist. I called the specialist and they could get me in 8 weeks later. I asked the specialist if I went gluten free is this would affect any testing. They said “no” that I was in a gluten diet for so long I would be fine. However, 8 weeks later, the blood test showed no celiac- my results were normal after 8 weeks on a gluten free diet. I felt great, for me the turnaround was almost immediate- in a week or 2 I felt amazing. But that didn’t help with getting accurate results (mostly wanted to rule out another autoimmune disorder). I then went on gluten for 7 weeks (I ate a lot of gluten- like at least a bagel a day and much more on some days- I wasn’t messing around, I wanted an accurate diagnosis)and repeated the blood test at 7 weeks. It came back a very weak positive for deamidated gliadin abs iGg. I then underwent a endoscopy because the doc said that number, although positive, was not high enough to go off of. The endoscopy came back normal- however, the doc noted that higher levels of antibodies were found but not in the “abnormal range.” So, they were present, just not in crazy levels. I then kept eating gluten- I should note my doctors SUCK (could do a whole other post just on this- I have been my own doctor pretty much). I just took another blood test at 3 months eating gluten. My levels are now SUPER high for deamidated Gliadin abs IgG. The doc is confident I have celiac. Question is- my doc is so bad, I wanted to check here to make sure that it indicates celiac. I also wanted to help others as I know there’s lots of conflicting information on how long to do a gluten Challenge. For me, it took 3 months. My gut tells me I am early stage celiac- I don’t have full blown damage yet, but if I keep eating it I am sure it will do some damage. Just wanted to highlight this as if your case isn’t super bad yet, you may have to eat gluten longer- everyone is different. Any advice on my results would be awesome!
    • Hi Matt,  Thanks for taking the time to reply!  I completely agree haha.  Thanks for the links - I'll give them a read over!  I think it was a mixture of the first time travelling with being gluten-free and the added bonus of the language barrier, it made me dread meal times when usually food is the first thing I think about when travelling to new places! Again, I think the planning element was also a factor, not being able to walk past a nice bakery without walking in - why do most Berlin train stations have bakeries in everyone?!?! THE SMELL!!!  Haha, good excuse! Could have used that in the hotel restaurant (arrived late the first night) and the only avail dish was a dry chicken Caesar salad (literally 3 thin slices of chicken, 5 cherry tomatoes and a plate of lettuce).  I am I'll give the website a look over too - thank you! My app's with my consultant are every 6 months, basically was just sent away with no info/advice given and feeling the struggle now that reality has set in that this is for good!  Hope you are well! 
  • Upcoming Events