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So Confused With Labs Vs Biopsy


Mel75

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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!!


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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.

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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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