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

Biopsy Negative...


DoogiePCT

Recommended Posts

DoogiePCT Apprentice

Hi Everyone,

I'm a 22 year old male with a history of thyroid cancer. So for the past few years, I've been having fatigue issues, along with gastrointestinal symptoms....I've also had a skin rash that looks to me like herpetiforms, and I have a diagnosed thyroid disorder that is well under control. Recently, I've become aware of Celiac disease, and called my doctor, and he informed that when I had an endoscopy a few months ago, they took a piece of my intestine to biopsy for celiac sprue, which came back negative. I asked him to fax it to me, and sure enough, they did and its negative.

My question is, could the biopsy be wrong? Or could I not have been consuming enough gluten in the days before for it to show?

Thanks so much.

Doug


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Welcome to the board!

How many biopsy samples did the pathology report describe?

Gfresh404 Enthusiast
Hi Everyone,

I'm a 22 year old male with a history of thyroid cancer. So for the past few years, I've been having fatigue issues, along with gastrointestinal symptoms....I've also had a skin rash that looks to me like herpetiforms, and I have a diagnosed thyroid disorder that is well under control. Recently, I've become aware of Celiac disease, and called my doctor, and he informed that when I had an endoscopy a few months ago, they took a piece of my intestine to biopsy for celiac sprue, which came back negative. I asked him to fax it to me, and sure enough, they did and its negative.

My question is, could the biopsy be wrong? Or could I not have been consuming enough gluten in the days before for it to show?

Thanks so much.

Doug

You would have had to have been gluten-free for at least four weeks for it to skew the biopsy in any way. A couple days is not going to make a difference.

I am a bit skeptical as whether or not a biopsy can miss damage. I'm sure there are people out there that will disagree with me but if enough samples are taken it is rare for a biopsy to miss damage. Keep in mind though, a biopsy can only diagnose Celiac disease. Currently there is no diagnostic criteria for "Non-Celiac Gluten Sensitivity." NCGS is however gaining more and more attention and I would not be surprised if it becomes an official diagnosis within the next few years.

It is believed that NCGS affects significantly more people than Celiac does. It has also been noted that if people with NCGS continue to consume gluten for a long enough time period, they are very likely to develop Celiac disease. Many people, myself included, believe that Celiac Disease and NCGS are essentially the same thing. In Celiac however, the first organ that is attacked just happens to be the small intestine.

I myself would be considered a non-celiac. I had negative blood work and a negative biopsy, but still responded favorably to a gluten-free diet. The best way to know for sure if gluten is effecting you in any way is to give a gluten-free diet a try. See if you feel any better. But give it some time, I noticed an improvement within a day or two while some people don't start feeling better for months.

jerseyangel Proficient

It's my understanding (and the belief of my former gastroenterologist) that the patchy damage from Celiac can be missed. The small intestine is around 22 feet long, and even with the doctor taking multiple samples (they should take 6-10) it can still be missed. There is also the issue of the skill of the person reading the test--milder damage can be overlooked this way.

If your doctor indeed only took one sample, it's quite possible any damage that might be there was missed.

A positive biopsy can rule Celiac in, but a "negative" can't altogether rule it out. If you've had the biopsy and the bloodwork, I would suggest giving the diet a try for a month and see if you feel better. :)

DoogiePCT Apprentice

Hey all--

the report from the biopsy report says, quote: "Received in formalin, labeled "biopsy duodenum" are three (3) irregular fragments of soft, tan, mucosal tissue averaging 0.3 cm, in maximum dimension which are submitted in toto. 1/3 bm/ab. Small Bowel- duodenum-BIOPSY Negative small intestinal mucosa."

That puts me at ease that I haven't been murdering my own body with what I eat, since my guess is I don't have it. I will have the blood test and then let it go, the anxiety will be too much for me. LOL.

ravenwoodglass Mentor
Hey all--

the report from the biopsy report says, quote: "Received in formalin, labeled "biopsy duodenum" are three (3) irregular fragments of soft, tan, mucosal tissue averaging 0.3 cm, in maximum dimension which are submitted in toto. 1/3 bm/ab. Small Bowel- duodenum-BIOPSY Negative small intestinal mucosa."

That puts me at ease that I haven't been murdering my own body with what I eat, since my guess is I don't have it. I will have the blood test and then let it go, the anxiety will be too much for me. LOL.

Since all that was biopsied was the duodenum you are not in the clear. I would suggest that you give the diet a good strict try for a month or so to see if it helps. You also should see a dermatologist and get the area beside the rash biopsied looking specifically for DH. If you have DH you have celiac.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Dora77 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Permanent Floating & Undigested Stools for a Year

    2. - TerryinCO posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Status Update...

    3. - cristiana replied to Tyoung's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Increasing symptoms after going gluten free

    4. - Jy11 replied to Jy11's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      Conflicting results

    5. - Pasballard replied to Tyoung's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Increasing symptoms after going gluten free


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,971
    • Most Online (within 30 mins)
      7,748

    sha1091a
    Newest Member
    sha1091a
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Dora77
      For some context: I have type 1 diabetes (T1D) (since 11 years) and celiac disease(since 4 years) For about a year now, I’ve been experiencing permanent floating and undigested stools. I’ve had a pancreas elastase test done. The first result was extremely low at 44, but a second test came back at 236. My doctor said that since one result is normal, it rules out pancreatic insufficiency because, according to them, elastase levels would always stay low if that were the issue. However, could the 236 have been a false result? My doctor also thinks I don’t have pancreatic insufficiency because I’m able to gain weight. I also get hgh injections as my bone age is younger than my real age, this also contributes to weight gain, so I dont know if weight gain can rule out malabsorption. But maybe if I had real malabsorption I wouldnt gain any weight even with hgh? For celiac, I’m on a gluten-free diet, but there might b small cross-contamination from things like pepper labeled as “may contain gluten.” or sausages which dont have gluten ingredient but say may contain. My doctor said that small amounts like this wouldn’t harm me and even mentioned that an occasional small exposure to gluten may not do much damage (which seems questionable since I thought even tiny amounts could be harmful). She also said that when Im older (Im m17) I could try eating small amounts of gluten and do antibody blood tests to see if I can tolerate small amounts or not. For reference, I’m asymptomatic when it comes to celiac, so I have no idea if I’ve been “glutened” or not. My first concerning celiac blood test was semi high IgA, then 3 months later we did a check up and my IgA was high so it was confirmed celiac. Since than I’ve had celiac antibody tests done yearly to see how my diet is going, and they’ve been negative, but I’ve heard those aren’t always reliable. I’ve never had a follow-up endoscopy to confirm healing. I also always kept eating „may contain gluten“ food. (I live in Germany so I dont know if „may contain gluten“ is as risky as in the usa but I suppose both are as risky) These stool issues started around the same time I was doing excessive heavy lifting at the gym. Could stress or lifting have triggered this, or is that less likely since the symptoms persist even after I stopped lifting? Occasionally, I’ll feel very mild stomach discomfort, but it’s rare and not severe. My doctor (also a dietist) said floating, undigested stools could still be “normal,” but that doesn’t seem realistic to me. Could this be impacting my vitamin or protein absorption? I also did a fructose intolerance breath test and had a high baseline of 20 ppm, but it never increased—only decreased over time. I fasted for 12 hours and didn’t eat fructose beforehand, but my stomach didn’t feel completely empty during the test. Could this mean the test was inaccurate? For lactose intolerance, I did the breath test but only fasted 10 hours and had eaten lactose prior because I wasn’t aware of the proper diet restrictions. My results were: 14, 12, 15, 25, 35, 40, 40 ppm—which would be considered positive. But given that I didn’t fast long enough or follow the right diet, could this result be unreliable? Has anyone else dealt with similar symptoms? What ended up being the cause for you? And sorry for the long text!
    • TerryinCO
      The Docs' and NP haven't committed to Celiac determination yet but say go gluten-free diet because...  And I have with improved physical results - feeling better; overall functions better, and more energy.  Still 10 pounds down in weight but I still have BMI of ~23.  It's been just over a month now gluten-free diet.  I'm fortunate I get along with diary/milk well and most other foods. I wanted ask about this site's sponsor, gliadin X.  If this is legit, seems like a good product to keep on hand. Though it says it's only a safety for incidental gluten contact - not a substitue for gluten-free diet. What's your input on this? This may be sensitive subject since they're a sponsor. I've used resources here and other sites for information, gluten-free food/product lists. So thank you for all that support. That's it for now - Stay warm...  -2F this morning in Colorado!
    • cristiana
      I did suffer with gastric symptoms before diagnosis, but got all sorts of weird and wacky symptoms after going gluten free.   Things got much better once my antibodies fell to normal levels, but it took years (please don't panic, many people's go to normal levels relatively quickly when following a gluten-free diet). Causes of the symptoms you mention that I also experienced were iron supplements, a temporary dairy intolerance (this is common in coeliacs and should pass when your gut heals properly), and eating oats, as mentioned above.  Other symptoms I got were musculoskeletal pain after diagnosis, but again, once my coeliac blood tests were normal, I had no more pain. I did notice patterns emerging in foods that I reacted to and learned to steer clear of them, then gradually reintroduced them when my gut healed, such as soya, pure oats and dairy products.    You might like to keep a food diary. Cristiana
    • Jy11
      Well the conflicting results continue as the biopsy has come back negative. 😵‍💫 Waiting to discuss further but I really don’t know what to think now? Eight biopsy’s were taken from duodenum which surely should be sufficient if it was coeliac? 
    • Pasballard
      I have Celiacs and want you to be aware of the amount of weight you can potentially put on if you rely on gluten free snacks, bread etc.,they  are high in carbs.  I put on 25 lbs in a short amount of time.  Whole Foods are the best way to go but I struggle with this.  The cost of gluten free is also a problem.  I love black licorice but most have gluten.  My favorite chili seasoning as well.  The list is endless.  I take  Advil liquid gels and had no idea until I read this.  I hope you do better than I have done.  I feel I am destined to suffer daily no matter what.  My aunt didn’t take care of herself and died from complications.  I hope you can get on a good routine.
×
×
  • Create New...