Possible Celiac Disease

[Sherm11]

Good morning. 

After five years of terrible bathroom trips, I finally saw a GI on Thursday and in our discussion she threw out the possibility of Celiac Disease. I had heard the term, but was not familiar with what it entailed.

Since Thursday morning I have been reading all I can on it to educate myself. Then the last two days I tried to cut our Gluten and my bathroom trips are already starting to feel better! That said, I have read this morning not to change my diet until AFTER I get tested. My procedure (Colonoscopy and Endoscopy) is not scheduled until end of September! Must I really make myself suffer for almost 2 more months? I have a message into the Dr to confirm that I should not change my diet, but what has been your experience with this?

Thank you and if I indeed have Celiac, I look forward to this community.  

 

[trents]

Welcome to the forum, @Sherm11!

Yes, it is true. If you embark on a gluten free diet or even significantly reduce gluten intake previous to either of the two types of testing used to diagnose celiac disease you will compromise or even invalidate the test results. Normally, there are two stages of testing. The first involves a blood draw to test for specific antibodies produced by celiac disease. If any of these antibody tests are positive, most physicians will refer to a GI doc for an endoscopy with biopsy of the villous lining of the small bowel which checks for the damage caused by celiac disease. This second stage of testing is considered the gold standard of diagnosis. Removing gluten from the diet eliminates the inflammation celiac disease causes to the lining of the small bowel which allows the lining to heal. So, logically, you can see how going gluten free for a period of weeks or months before testing will undermine the results. It's important to realize that celiac disease is not a food allergy. It is an autoimmune disease triggered by gluten. Consumption of gluten triggers an autoimmune response in that causes damage to he villous lining of the small bowel that produces antibodies that can be detected in the blood. It takes weeks for these antibodies to build up to detectable levels. What I find interesting is that your physician seems to have skipped the first stage of testing (antibodies) and is going straight for the second stage (endoscopy/biopsy). By the way, a colonoscopy cannot be used to diagnose celiac disease. They can't get a scope up far enough from the bottom end. So, your physician must also be checking for other intestinal diseases that affect the GI track lower down.

Edited August 3, 2024 by trents

[RMJ]

Can you get on a list to be called for an earlier procedure if someone else cancels theirs?
In the meantime, you could enjoy eating all of your favorite gluten-containing foods, in case the diagnosis is celiac disease and you have to give them up after the endoscopy.