Jump to content
  • 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):

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
      134,077
    • Most Online (within 30 mins)
      10,442

    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...