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Biopsy done - do my results show celiac?


kkay

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kkay Rookie

Hi!  Seven years ago I went to a rheumotologist  because I was having body pain and fatigue.  I was anemic and had low vitamin D.  The doctor decided to send me for a biopsy since I tested positive for one of the antibodies on the celiac panel.  I wish I could remember which one.  I don't believe he tested the full panel, because there were only three numbers.  Anyway, my biopsy came back negative.  So after testing for everything under the sun, I was diagnosed with fibromyalgia and IBS.  I don't want to deal with the side effects from medicine, so for 7 years I have been putting up with the pain and symptoms.

Last month, I went to the doctor for a physical after not going for a long time.  He tested my blood for anemia and it came back I had iron deficient anemia.  He had me to do a stool test and it came back I had blood in my stool.  The doctor referred me for a colonoscopy and an endoscopy and I got my results back last week.

The report says my biopsy is suggestive of celiac disease.  The word that is throwing me off is suggestive.  Does that mean I only potentially have celiac disease or do I have it?  Do I only have it if the blood work also tests positive?

Here is what is in my biopsy report:

The biopsies of your small intestine are suggestive of celiac disease.  I recommend your primary care physician obtain tissue transglutaminase IgG and tissue transglutaminase IgA blood tests and then you should go on a gluten-free diet.

Diagnosis:

A. Epithelial lymphocytosis (up to 51 lymphocytes/100 enterocytes) with crypt hyperplasia (see comment)

B. Parasites and Helicobacter pylori organisms not identified

C. Negative for for dysplasia/malignancy

Comment:

In the appropriate clinical and serologic contexts, the findings are compatible with gluten-sensitive enteropathy (celiac disease).  Marsh 2 lesion.  Recommend clinical and endoscopic correlation.

 

From the pathologist:  Microscopic examination reveals small bowel mucosa with intact villous architecture and increased epithelial lymphocytes (up to 51 lymphocytes per 100 enterocytes).  Mild Villous atrophy and mononuclear cell expansion of the lamina propria are present.  Parasites and Helicobacter pylori organisms are not identified.  There is no evidence of dysplasia or malignancy.

 

Can anyone help me?  Does this mean I have celiac or does it only mean I have it if the blood work tests positive for celiac?

Thanks!!!

 


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kareng Grand Master

Keep eating and gluten and get the celiac blood panel.  

 

kkay Rookie

I do have an appointment scheduled with my doctor to get the celiac blood panel and I am still eating gluten.   My brother has celiac disease and he tested negative on blood work, but positive on his biopsy.  So I was just wondering if a biopsy alone is enough to tell if you have celiac disease and if my biopsy showed that.

GFinDC Veteran

Hi Kkay,

The biopsy shows damage to your intestinal lining.  The antibodies test could show what caused the damage.m  I think it is highly likely you have celiac disease.  The doctor at this pint should be doing the full celiac panel, not just the ttg, IMHO.

 

kkay Rookie

Thank you!  I am seeing my doctor this afternoon and I will request the full celiac panel.

squirmingitch Veteran

Here's the FULL panel. Make sure he orders the whole shebang.

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

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      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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