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

Biopsy results incomplete?

Porrin

Recommended Posts

Porrin Rookie
Porrin
Posted

Hi everyone, im from Argentina and im struggling with getting diagnosed since a bit more than a year, I've got nutritional deficiencies that doesn't seem to respond to supplements and GI problems, bloating, pain, steatorrea etc + other autoimmune disorders. They finally realized the upper endoscopy and took 2 samples, but the analysis of the samples seems very incomplete it says they found congestive duodenum mucosa and no signification histology changes, but there is not lymphocytes count or marsh classification whatsoever, should i call and ask for a more detailed report? im just getting so tired of all of this u.u

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

They should have taken at least 6 biopsies. Yes, call them & see if there is a more detailed report. Did you get the celiac blood testing? You should have had that before the endoscopy. Do you have the results of the blood testing? If so, can you post it here along with the reference ranges?

Were you eating gluten every day or had you gone gluten free before the endoscopy or blood testing? Don't quit eating gluten until all testing is done with.

What other autoimmune diseases do you have?

I am not at all familiar with the health care/insurance of Argentina. Is it a government health care or do you guys have individual insurance plans? Can you pick your doctors?

cyclinglady Grand Master
cyclinglady
Posted

Sorry that you are ill.  I just want to add a link regarding the celiac blood tests that your doctor should order to help confirm a diagnosis of celiac disease as many other things can damage intestinal villi.  

Open Original Shared Link

Porrin Rookie
Porrin
Posted
  • Author
1 hour ago, squirmingitch said:

They should have taken at least 6 biopsies. Yes, call them & see if there is a more detailed report. Did you get the celiac blood testing? You should have had that before the endoscopy. Do you have the results of the blood testing? If so, can you post it here along with the reference ranges?

Were you eating gluten every day or had you gone gluten free before the endoscopy or blood testing? Don't quit eating gluten until all testing is done with.

What other autoimmune diseases do you have?

I am not at all familiar with the health care/insurance of Argentina. Is it a government health care or do you guys have individual insurance plans? Can you pick your doctors?

Yes i've heard that they were supossed to take 6 or more biopsis but no, i suposse they didnt know wich is sad, but at least i was expecting a more detailed report, since they havent even found a normal mucosa, congestive means inflamation at least for what i know, i eat gluten every day i was gluten free before and i used to feel better but has been more than a year since i reintroduce gluten for all the testing, the celiac panel is complete (i already checked that) and everything is negative but they said that marsh 1 sometimes get negative blood work (that happend to a close family friend) they also realized a colonoscopy cause my mother has ulcerative colitis and i have an uncle with crohns too, so they checked that and it seems ok, what they did found was chronic gastritis but with no H pylory. I've got psoriasis, hashimoto (the antibodys but thyroid still working) and now it seems i could have Sjogren too. 
Its private healt care, you pay for month and they provide you with a number of profesionals and hospitals and you can chose from that, havent been very lucky tho tbh
Thank you for your answer im gonna try to contact the hospital and ask them for a more detailed report or the samples to take to another place for a proper analysis

squirmingitch Veteran
squirmingitch
Posted

If you can take the biopsies to another place for a second opinion that would be wonderful. 

Well since you had already been gluten free & know it makes you feel better then if you can't get anything else going on with the doctors/tests, you know you can go back to gluten free and feel better. 

The Hashimoto and Sjogren are both associated with celiac disease. It's possible that your villi just aren't damaged enough but I still am upset they didn't do the 6 biopsies. With only 2 biopsies they could have easily missed the damage. Is it possible for you to get another endoscopy? I know that would be so not fun but while you're still eating gluten..........

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    2. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    3. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    4. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
    5. cristiana
      - cristiana replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott. Have manufacturers ever said why that should be the case?
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,440
    • Most Online (within 30 mins)
      7,748
    Lillian Steele
    Newest Member
    Lillian Steele
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By cristiana · Posted

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • 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.