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

So Confused With Labs Vs Biopsy


Mel75

Recommended Posts

Mel75 Newbie

Biopsy reads-

Small bowel biopsy showing preserved villous architecture with moderate numbers of lymphocytes.

My GI doctor tells me it's Celiac but wants to run some blood work-

So all blood work is negative/normal including ANA panel, celiac panel and SED rate.

So the nurse calls me and tells me it's not celiac and stay on protonics twice a day. No need to go gluten free unless I just want to.

I have inflammation in my small intestines and erosive gastrophy. I'm just not sure I'm comfortable with no diagnosis of why?! The nurse said it could just be from acid.

I'm just confused as to what to do? I don't want the inflammation to get worse.

What would you do?

Thanks!!


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



Celiac.com Sponsor (A8-M):



ckd0822 Newbie

Were you gluten free when they did the blood work? If so, that can give a false negative.

cyclinglady Grand Master

Did you get a complete celiac panel or just the typical screening? Here is the complete panel:

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

Exactly where and how many biopsies?

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

I sound like a broken record, but I tested positive on only one of the celiac blood tests and yet biopsies revealed moderate to severe damage. Get copies of your records!

I hope this helps!

Mel75 Newbie

I have copies of my procedures, labs is there anyway I can attach them on here?

I was eating gluten and I'm not sure how many biopsies were taken? Would that be on the pathology report?

nvsmom Community Regular

 I copied the following from the World Gastroenterology Celiac Guidelines: Open Original Shared Link

 

The lesion in the duodenum/upper jejunum may be patchy, as a result of which it may be missed if there is insufficient mucosal sampling [25]. At least four biopsy samples must be taken—three from the second part of the duodenum distal to the papilla, and one from duodenal bulb. A negative histological diagnosis may justify a second biopsy in selected patients who have positive autoantibodies such as endomysial antibodies (EMAs).

Biopsy samples taken from the proximal duodenum above the papilla of Vater may have artifacts (e.g., stretching of villi) produced by submucosal Brunner’s glands, which may be falsely interpreted as flat mucosa.

Under light microscopy, the most characteristic histological findings in patients who are taking a gluten-containing diet are [15]:

  • Blunted or atrophic villi

  • Crypt hyperplasia

  • Mononuclear cell infiltration in the lamina propria

  • Epithelial changes, including structural abnormalities in epithelial cells

  • Intraepithelial lymphocyte infiltration

A series of well-designed studies by Marsh [15] made it possible to interpret the wide range of mucosal damage induced by gluten, with the celiac histological modifications being categorized as ranging from normal mucosa to completely flat villi. The modified Marsh classification [33,34] is widely used in clinical practice (Table 1).

 

Table 1 The modified Marsh classification of gluten-induced small-intestinal damage [33,34]

celiac-english-table-1.png

 

 

Celiacs will usually have villi damge in their intestines.  If you have celiac disease, you have early celiac disease or they missed the patchy damage. It can happen.

 

Because you had negative blood tests, it is less likely that you have celiac disease, especially if they ran the full panel.  If they only rand one or two tests, then chances are greater that it could be celiac disease.

 

Erosive gastrophy... Were you using any meds that could damage the stomach lining ad cause that?  I think it shows up in crohn's and colitis too.  Perhaps google the terms in your report and you may find my information to question your doctor with - you may fnd somethig that fits your situation if it isn't early celiac disease.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,675
    • Most Online (within 30 mins)
      7,748

    Kimmber
    Newest Member
    Kimmber
    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

    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.