Biopsy question

[jeffindc]

Hello everyone,

I was able to get a hold of my 2010 biopsy and for the duodenal biopsy it says - duodenal mucosa with mild villous atrophy and increased intraepithelial lymphocytes (confirmed by cd3 stain) consistent with celiac disease.

I had another biposy in 2011 but now that I think about it the doctor never told me to start eating wheat again... i was always off and on low carb diets to try and control my weight.  I am 120 pounds overweight and eat like a normal sized guy.

Recently I have had blood tests which show negative for celiac.

Does this sound like I am positive for celiac?  Should I get a 3rd endoscopy? Has anyone ran into this before?

Thanks for reading my lengthy post.

[trents]

Welcome to the forum, Jeff!

Yes, we do sometimes get negative antibody blood tests but positive biopsies. There is a celiac antibody panel that can be run to give a more complete picture of how the immune system is responding. Many physicians will only order the tTG-IGA test which is considered to be the centerpiece of the panel but there are some people whose immune system will respond atypically to the inflammation being caused by gluten. This may help: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ A complete celiac panel would include the "Other" tests.

Another issue that is common is that people start cutting out gluten before they get tested. This allows healing to take place in the mucosa of the small bowel and may sabotage either an antibody blood test or an endoscopy/biopsy. I mention this because you say you have been on and off of low carb diets. The Mayo Clinic recommendation for the pretest gluten challenge for antibody testing is the daily consumption of an amount of gluten equivalent to two slices of wheat bread for 6-8 weeks and at least two weeks before the endoscopy/biopsy. Many physicians fail to inform their patients that they need to be on regular amounts of gluten for a significant amount of time before testing.

[jeffindc]

Thanks trents I appreciate this information.  I was just diagnosed with severe exocrine pancreatic insufficiency out of nowhere and there is a potential celiac link.  That got me thinking about the tests from long ago.  The good news is epi may go away if you are celiac and stop eating gluten. 

I will  also see about the full blood panel and/or endoscopy too thats a great idea.

[trents]

I wish you well and that you get some things figured out.

[Scott Adams]

Since your original biopsy results indicate celiac disease your doctor should have made that diagnosis back then, and you should have gone gluten-free at that time. It's a total mystery why they would not diagnose you based on your biopsy results, which, especially at that time, was the gold standard of diagnosis.

PS - To do any further testing for celiac disease you need to eat 2 slices of wheat bread daily for at least 6-8 weeks for blood tests, and 2 weeks for a biopsy.

[Sabaarya]

22 hours ago, Scott Adams said:

Since your original biopsy results indicate celiac disease your doctor should have made that diagnosis back then, and you should have gone gluten-free at that time. It's a total mystery why they would not diagnose you based on your biopsy results, which, especially at that time, was the gold standard of diagnosis.

PS - To do any further testing for celiac disease you need to eat 2 slices of wheat bread daily for at least 6-8 weeks for blood tests, and 2 weeks for a biopsy.

On 12/13/2021 at 10:45 AM, jeffindc said:

Hello everyone,

I was able to get a hold of my 2010 biopsy and for the duodenal biopsy it says - duodenal mucosa with mild villous atrophy and increased intraepithelial lymphocytes (confirmed by cd3 stain) consistent with celiac disease.

I had another biposy in 2011 but now that I think about it the doctor never told me to start eating wheat again... i was always off and on low carb diets to try and control my weight.  I am 120 pounds overweight and eat like a normal sized guy.

Recently I have had blood tests which show negative for celiac.

Does this sound like I am positive for celiac?  Should I get a 3rd endoscopy? Has anyone ran into this before?

Thanks for reading my lengthy post.

Hi Jeff I was just diagnosed with celiac disease (3 months ago) base on positive biopsy and genetic panel. My antibodies were negative though. Doctor said genetic panel with positive biopsy consistent with celiac. I was told that it’s Marsh 3a which is mild or partial atrophy…