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

Negative Biopsy

Booghead

By Booghead
in Coping with Celiac Disease

Recommended Posts

Booghead Contributor
Booghead
Posted

I had a positive blood test and and EGD done. The results came back and the biopsy was negative. I feel I do have celiacs because I have been feeling much better after going gluten free. Help?

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

Celiac.com Sponsor (A8-M):


Monklady123 Collaborator
Monklady123
Posted

I had a positive blood test and and EGD done. The results came back and the biopsy was negative. I feel I do have celiacs because I have been feeling much better after going gluten free. Help?

My philosophy is that if you feel better not eating gluten then you shouldn't eat gluten. Who cares what the test says? There are all sorts of variables on that biopsy anyway. If you feel better then don't eat gluten.

Katrala Contributor
Katrala
Posted

Can you get ahold of the biopsy? Find out the doctor's standards for diagnosis? Or the pathologist's?

Lisa Mentor
Lisa
Posted

Positive blood panel in conjunction with positive dietary result can be diagnostic as well. Welcome to the Club! :D

Darn210 Enthusiast
Darn210
Posted

My daughter's doctor would have diagnosed you based on positive blood test alone . . .

Were you gluten free when you had the endoscopy done? That would affect the results. Regardless, I have yet to see a false positve on a blood test and I have seen boatloads of negative scopes where people do well on the diet (scoping can be tricky . . . not enough samples and/or damage is patchy).

Personally, I'd call yourself diagnosed and get on with and enjoy your gluten free life . . . :D

Marilyn R Community Regular
Marilyn R
Posted

:) I had negative blood tests and negative Upper GI. You'd have to tie me up and force feed me to stick gluten in my mouth. It makes me sick, and I don't need a diagnosis to tell me that.

My 11 year old great niece has a kidney condition and my niece took her to a locally respected urologist. When the Urologist read the radiology report, he told my niece that the results reported by the radiologist were medically impossible, and referred her to a pediatric urologist and nephrologist several miles away.

My first thought was I wondered if that was the same radiologist that read my biopsy results, but it doesn't matter. It may actually be better to be undiagnosed. A while ago someone posted that they were denied life insurance due to having celiac disease.

I was pretty sure I'd be negative on both tests because I wasn't willing to do a gluten challenge. I finally found out what was sucking the life out of me on my own, and having someone with the initals M.D, behind their name really didn't need to clarify it.

So what do you do now? Do what has been making you feel better!

sandsurfgirl Collaborator
sandsurfgirl
Posted

There are no false positives on the blood tests. If your blood test is positive you have celiac. Don't let an uninformed doctor tell you differently. There are many stories on this board of people who were told by ignorant doctors they could keep eating gluten even after a positive blood test and years later they were extremely ill when they finally went gluten free.

My son's pediatrician is somewhat of an expert in diagnosing celiac. She diagnoses primarily by blood tests alone. She doesn't believe in subjecting children to endoscopy unless it's absolutely warranted.

If I remember correctly you react pretty badly to getting glutened right? If you don't have a gluten problem then it's not going to give you a reaction.

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

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

Positive blood test and positive results from a gluten free diet sure sounds like a DX to me.

There are many reasons why the biopsy results were negative (not enough samples, biopsy from the wrong area, pathologist error, villous atrophy is not extensive YET, etc.)

Stay the course, stay well! ;)

P,S. My blood panel was NEG and my former GI doc failed to biopsy me when he did the endoscopy back in 2009 (something never explained to me, BTW) and I went downhill for another year and a half. My new celiac-savvy GI said: Your positive response to the gluten-free diet and resolution of multiple vitamin deficiencies and anemia and your long history was plenty for me. You were essentially starving to death and you saved your own life. I would never ask you to resume a gluten-free diet for biopsy. That's just insane.

I love this guy!!! :)

Chad Sines Rising Star
Chad Sines
Posted

even a positive from gluten-free alone is enough for me and many docs.

Archived

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

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


  • Member Statistics

    • Total Members
      131,822
    • Most Online (within 30 mins)
      7,748
    CQkage
    Newest Member
    CQkage
    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

    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By Scott Adams · Posted

      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      @fatjacksonthecat I have been doing some digging about the topic of nicotine and celiac.  I came across many studies that showed that the nicotine patch helped many with long covid and chronic fatigue syndrome.  I have a son who was diagnosed with celiac and his symptoms are severe when he is glutened.  He shows a lot of neurological inflammation and suffered with fatigue, brain fog, depression, anxiety and insomnia. There have been studies revealing that nicotine smoke actually masking celiac symptoms.  I also read that microdosing with a nictoine patch prevents one from addiction.  We are currently trying this out and so far it has lifted the brain fog and helped with anxiety and mood.  One of the studies I have read showed that it's not so much the dose, but the length of time a person is on the patch that showed improvements.  Many showed significant improvement as early as week 3 and continued through week 12.  We are taking 3 day breaks in between to make sure we don't down regulate the nicotine receptors.   How have things been for you?  Are you still chewing nicotine gum?  Perhaps, try the patch?  And how long did it take to ease up on your symptoms when glutened?
    • cristiana
      New here

      By cristiana · Posted

      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      New here

      By trents · Posted

      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
×
×
  • 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.