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Can someone make sense of my biopsy?


samden

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samden Newbie

Hello- 

 I am so frustrated with the diagnosis process!  Here's what I've been going through: 

Symptoms- Joint pain and swelling, Vitamin D deficiency, Diarrhea, brain fog, headaches, etc

Blood test- 

Deamidated Gliadin (0-19 ref range)- 39

tTG IGA (0-3  reference range)- 12

ttg IgG (0-5 reference range)- 12

Endomysial Antibody IgA-  Positive

Then, I get my biopsy done yesterday.  The doctor finds: 

Flattening was found in the first part of the duodenum and scalloped mucosa was found in the first portion of the duodenum consistent with celiac disease.  

Biopsies were taken and I get this: 

- Duodenum, acute and chronic active peptic duodenitis

NO EVIDENCE OF CELIAC DISEASE. 

Will they give me the diagnosis anyway?  I clearly have Celiac disease and am so disappointed the biopsy came back negative because I KNOW I HAVE THIS.  Has anyone been there?   I really don't want to go through all of this and know I have Celiac only to require another biopsy and not be able to go gluten free and repair my health.   I am waiting for my doctors call but I am just so distraught that they may make me do all of this over as I "don't have celiac disease".  I may be blowing this out of proportion and I'm praying that the blood tests and doctors findings are enough, plus the fact that peptic duodenitis can be caused by Celiac.  Does someone know more than me who can help me understand??


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RMJ Mentor

That is frustrating! Are you sure that those are the results from the biopsy and not the results from the doctor’s visual observations?  I only ask because next day service is technically quite possible, but also quite unusual for biopsy results.

Biopsies can miss celiac disease, the damage can be unevenly distributed.

You can always go gluten free and see if the antibody levels go down - that can be further evidence of celiac disease. Luckily the gluten free diet doesn’t need a doctor’s prescription.

T burd Enthusiast
5 hours ago, samden said:

Hello- 

 I am so frustrated with the diagnosis process!  Here's what I've been going through: 

Symptoms- Joint pain and swelling, Vitamin D deficiency, Diarrhea, brain fog, headaches, etc

Blood test- 

Deamidated Gliadin (0-19 ref range)- 39

tTG IGA (0-3  reference range)- 12

ttg IgG (0-5 reference range)- 12

Endomysial Antibody IgA-  Positive

Then, I get my biopsy done yesterday.  The doctor finds: 

Flattening was found in the first part of the duodenum and scalloped mucosa was found in the first portion of the duodenum consistent with celiac disease.  

Biopsies were taken and I get this: 

- Duodenum, acute and chronic active peptic duodenitis

NO EVIDENCE OF CELIAC DISEASE. 

Will they give me the diagnosis anyway?  I clearly have Celiac disease and am so disappointed the biopsy came back negative because I KNOW I HAVE THIS.  Has anyone been there?   I really don't want to go through all of this and know I have Celiac only to require another biopsy and not be able to go gluten free and repair my health.   I am waiting for my doctors call but I am just so distraught that they may make me do all of this over as I "don't have celiac disease".  I may be blowing this out of proportion and I'm praying that the blood tests and doctors findings are enough, plus the fact that peptic duodenitis can be caused by Celiac.  Does someone know more than me who can help me understand??

It sounds like they only did one sample. My duodenal biopsy was negative. My duodenal bulb biopsy was positive. I would call them and tell them to do another biopsy in a different location and to make sure they do a separate sample of the duodenal bulb. 
it is not standard to have a duodenal bulb biopsy. you have to demand it for some. Mayo clinic had a study and it showed only 1% have the duodenal bulb be positive when the duodenum is negative. But I’m in that one percent. Many other people say that different sections of the gut can be positive when the top section isn’t. 
 

 

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