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Eduardo

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Eduardo Newbie

Hello , I did an endoscopy 2 weeks ago and I’m having a hard time understanding Dr language.  I did a celiac blood test 3 month ago came out negative but now Dr thinks I could have celiac after my endoscopy. 

SIGNIFICANT ATROPHY OR SIGNIFICANT INCREASE IN INTRAEPITHELIAL LYMPHOCYTES.


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trents Grand Master

Welcome to the forum, Eduardo!

Celiac disease is an autoimmune disorder, meaning the body's immune system causes damage to the body's own tissues. With celiac disease, eating gluten triggers an autoimmune response in the lining of the small bowel, the part of the intestines that is just below the stomach. This autoimmune response damages the villi (millions of tiny finger like projections) that line the small bowel. This area is where all the nutrition in our food is absorbed. This inflammation gives off what's called antibodies that can be detected in the blood. These antibodies are more or less specific to celiac disease so if the blood testing shows positives for them then it indicates to the doctor that you have celiac disease. In your case, the antibody test or tests were negative but apparently you have symptoms that still point to celiac disease. The antibody testing can give false negatives for a number of reasons, one of which is that a person's immune system is not responding in a typical way. There are several different antibody tests that can be run to detect celiac disease and it is a good idea to run all of them in case one or the other test misses something. Another reason antibody testing can be negative is because people have already been on a gluten free diet for weeks or months and the inflammation has died down.

Do you know what antibody test or tests your physician ran on you? If so, can you post it on this forum, both your scores and the range used by the lab for what is normal or negative?

Another way to diagnose celiac disease is to do an endoscopy with a biopsy of the small bowel lining. It is then sent to a lab for microscopic analysis to look for damage to the villi that would indicate celiac disease. Sometimes the damage is bad enough that it can be seen during the scoping before the biopsy is sent to the lab. The endoscopy with biopsy is the gold standard of celiac diagnosis.

"Atrophy" means something is worn down or has shrunk. Probably it's referring to damaged villi.

"INCREASE IN INTRAEPITHELIAL LYMPHOCYTES": lymphocytes are cells in the immune system that attack invaders. With celiac disease, gluten is interpreted by the immune system as an invader. However, this can also be caused by other things besides celiac.

I hope this helps you understand the doc speak. Do you have a follow-up appointment with the doctor?

Eduardo Newbie
4 hours ago, trents said:

Welcome to the forum, Eduardo!

Celiac disease is an autoimmune disorder, meaning the body's immune system causes damage to the body's own tissues. With celiac disease, eating gluten triggers an autoimmune response in the lining of the small bowel, the part of the intestines that is just below the stomach. This autoimmune response damages the villi (millions of tiny finger like projections) that line the small bowel. This area is where all the nutrition in our food is absorbed. This inflammation gives off what's called antibodies that can be detected in the blood. These antibodies are more or less specific to celiac disease so if the blood testing shows positives for them then it indicates to the doctor that you have celiac disease. In your case, the antibody test or tests were negative but apparently you have symptoms that still point to celiac disease. The antibody testing can give false negatives for a number of reasons, one of which is that a person's immune system is not responding in a typical way. There are several different antibody tests that can be run to detect celiac disease and it is a good idea to run all of them in case one or the other test misses something. Another reason antibody testing can be negative is because people have already been on a gluten free diet for weeks or months and the inflammation has died down.

Do you know what antibody test or tests your physician ran on you? If so, can you post it on this forum, both your scores and the range used by the lab for what is normal or negative?

Another way to diagnose celiac disease is to do an endoscopy with a biopsy of the small bowel lining. It is then sent to a lab for microscopic analysis to look for damage to the villi that would indicate celiac disease. Sometimes the damage is bad enough that it can be seen during the scoping before the biopsy is sent to the lab. The endoscopy with biopsy is the gold standard of celiac diagnosis.

"Atrophy" means something is worn down or has shrunk. Probably it's referring to damaged villi.

"INCREASE IN INTRAEPITHELIAL LYMPHOCYTES": lymphocytes are cells in the immune system that attack invaders. With celiac disease, gluten is interpreted by the immune system as an invader. However, this can also be caused by other things besides celiac.

I hope this helps you understand the doc speak. Do you have a follow-up appointment with the doctor?

Hi thanks for the very informative message. This is the anti test I was tested on . TTG, IGAYour Value<1.9 [IU]Standard Range<20.0 [IU]  at the this time I was eating out a lot , drinking alcohol two peanut butter sandwiches daily for lunch and my anti test still came out negative. 

Yes fallow up with Dr in two weeks. 

trents Grand Master
(edited)

As I said in my first post, there are a number of celiac antibody tests that can be run. The tTG-IGA is the most popular with doctors as it combines good specificity with good sensitivity. But for whatever reason, it misses some people who actually do have celiac disease. That is the value of running multiple blood antibody tests or a "full celiac panel" as we like to call it. Here is a primer:

Nonetheless, your doctor did well to also order the endoscopy/biopsy which seems to have been positive for celiac disease. You might ask him how you scored on the "Marsh Scale" for villous atrophy. the Marsh scale is a rating system to describe the degree of damage to the villi. Please keep us posted as to what you learn from the follow-up visit.

Edited by trents

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