Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
      128,158
    • Most Online (within 30 mins)
      7,748
    Elaine Gilbert
    Newest Member
    Elaine Gilbert
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Testing

      By trents · Posted

      Did your symptoms improve after going on a gluten-free diet?
    • Scott Adams
      Testing

      By Scott Adams · Posted

      Thank you for sharing your genetic test results and background. Your results indicate you carry one half of the DQ2 heterodimer (DQA1*05), which is associated with a very low celiac disease risk (0.05%). While most celiac patients have either DQ2 or DQ8, these genes are also present in people without celiac disease, so the test alone doesn’t confirm a diagnosis. Since you’ve been gluten-free for 10 years, traditional diagnostic methods (like endoscopy or blood tests) would not be reliable now. If an official diagnosis is important to you, consider discussing a gluten challenge with your doctor, where you reintroduce gluten for a period before testing. Alternatively, you could focus on symptom management and dietary adherence, as your gluten-free diet seems to be helping. Consulting a gastroenterologist or celiac specialist could provide further clarity.  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:    
    • Scott Adams
      Celiac or Addison's complications? Can someone share their experience?

      By Scott Adams · Posted

      @cvz Thank you for sharing your daughter’s story. It sounds like she is managing multiple complex conditions with great care and diligence. It’s encouraging to hear that she is compliant with her gluten-free diet and that her Addison’s disease symptoms are under control. The addition of electrolytes seems like a thoughtful suggestion, especially given her fluid intake. It’s also reassuring that she hasn’t shown noticeable symptoms from accidental gluten exposure, though it’s understandable how challenging it can be to monitor for such incidents. The unexplained high lipase levels are intriguing—perhaps further investigation or consultation with a specialist could provide more clarity. Wishing you both continued strength and success in managing her health. Please keep us updated on her progress!
    • Kj44
      Testing

      By Kj44 · Posted

      Hello I received this in a genetic lab test I requested from my provider.    The patient is positive for DQA1*05, one half of the DQ2 heterodimer. The celiac disease risk from the HLA DQA/DQB genotype is approximately 1:1842 (0.05%). This is less than the 1% risk in the general population. Allele interpretation for all loci based on IMGT/HLA database version 3.55 HLA Lab CLIA ID Number 34D0954530 Greater than 95% of celiac patients are positive for either DQ2 or DQ8 (Sollid and Thorsby, (1993) Gastroenterology 105:910-922). However these antigens may also be present in patients who do not have Celiac disease.   Some background, I have been eating gluten free for about 10 years now. I have never had an official celiac diagnosis due to endoscopy and labs tested after I had already been eating gluten free for over 1 year. I was constantly sick and told you slowly remove foods and see what effects my symptoms. I have also come to realize that I have other symptoms of celiacs and recently requested the genetic testing shown above.    I am looking to see if anyone has other recommendations for testing or just to clarify the results for me as I feel the official diagnosis could be helpful but I am not positive that it is even true for me. 
    • cvz
      Celiac or Addison's complications? Can someone share their experience?

      By cvz · Posted

      My daughter, age 48, has Down syndrome, hypothyroidism, Addison's disease, and Celiac disease, which was diagnosed based on blood tests last July.  After a small intestine biopsy last fall, we were told that she has severe celiac disease.  She is taking both levothyroxine and leothyronine for her hypothyroidism and both hydrocortisone and fludrocortisone for Addison's disease.  She also takes Folic acid, magnesium, vitamin B-12, DHEA (DAGA), and a multivitamin.  In July, she started on a gluten-free diet and is very compliant.  She has had constipation and diarrhea issues all her life and now controls the constipation with Miralax, prunes, and apricots.  Shel has only very occasional syncopes or vasovagal events and muscle aches in her upper back and neck.  She drinks 4-6 or more 12 oz bottles or of liquid per day.  Her doctor has just suggested adding electrolytes to one of those bottles daily.   We are sorry to learn about the issues you are having and would like to stay in touch.  We do not know anyone else with both Addison's disease and celiac disease.  So far, she has no recognizable symptoms.  We are doing our best to keep her gluten-free, but have no way of knowing if she has had an exposure to it unless we catch it ourselves.  For example, a few weeks ago, a restaurant mistakenly breaded her fish, and I did not notice it until she had eaten most of it.  She had no identifiable symptoms of the exposure then or days later. By the way, the reason she was screened for Celiac disease was that her blood lipase levels were unexplainably high.  They still are.  We have no idea why.    
×
×
  • Create New...