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moey

Would Celiac always be noticable in a small intestine pathology

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Would Celiac disease be visible in a small intestine pathology if you were not eating gluten for some time. At this level of dissection would it always be known even for a recovered patient? I had a 5 inches of my small intestine taken out during a right hemicolectomy procedure nothing was reported but the pathologist was looking for a tumor not Celiac disease.

 

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I think not. Biopsies to check for celiac disease are not considered valid unless the patient has been currently consuming gluten on a regular basis.

So for clarification's sake, I assume you have not been officially diagnosed with celiac disease but at some point before the hemicolectomy you put yourself on a gluten-free diet. 

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I put myself on a diet which consisted of food that didn't anger my tumor :) which was very limited.

I guess theres not much I can do except wait until my digestion improves from the surgery and try gluten again.

Thanks for the input..

 

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Celiac Disease creates a greater risk for small bowel cancer. I would hesitate to start reintroducing gluten into your diet if I were you since you already had a tumor and recent surgery. Instead, I would double down on eliminating gluten from your diet. Educate yourself as to how gluten is hidden in our food supply, supplements and medications. If after you heal from the surgery and your body has adjusted to having a shorter digestive track you start feeling better by eliminating gluten from your diet, I would assume you have celiac disease and would need to diligently practice gluten-free eating the rest of your life.

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Thank you for the information.

I had a neoroendocrine tumor in my appendix not very common. It was advanced enough to remove part of my colon to prevent it from spreading if some was missed in the initial appendectomy.

 

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Moey,

You could have a genetic test done to check for the genes related to Celiac Disease.  

Imho, it's ridiculous to harm yourself with gluten for a diagnosis.  

Check into the Autoimmune Paleo diet which promotes intestinal healing.  It's basically meat and fresh veggies.  No dairy, no nightshades (tomatoes, potatoes, eggplants, and peppers), no grains, no legumes.

And ask your doctor about supplementing with a multivitamin or  B-Complex vitamin until you're feeling better.

Hope this helps!

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The gene test is far from being definitive since only a small portion of those with the genes actually develop celiac disease whereas a relatively large proportion of the population have the genes. It takes some kind of triggering event for the genes to be expressed. But if turns out you don't have the genes then you could look elsewhere for what is causing your issues.

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I do carry one of the genes. I think it put my percent chance at 8% if I recall correctly.

I did have a stool test done at one point because of absorption issues and suspicion of a parasite (high eosinophil levels) . It did show high levels of anti glaiden. But Im aware this really is not a good diagnostic test for that. Specially in my case the oncologist felt it was possible the tumor was secreting hormones causing digestive issues.

I think at this point I just have to wait and let my digestive system normalize before I consider anything more about Celiac investigation. I have not had any gluten in probably 4 months.

 

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