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Biopsy question

jeffindc
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jeffindc Newbie
jeffindc
Posted

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.

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trents Grand Master
trents
Posted

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 Newbie
jeffindc
Posted
  • Author

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 Grand Master
trents
Posted

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

Scott Adams Grand Master
Scott Adams
Posted

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 Community Regular
Sabaarya
Posted
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… 

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      Accuracy of testing concerns

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    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

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