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Negative For Celiac, What Else Could It Be?

kaseydylan

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kaseydylan Newbie
kaseydylan
Posted

I had a colonoscopy a few months ago, they noticed swelling in the small intestine. Today I had an endoscopy and he said no evidence of celiac. He officially diagnosed me with GERD and did a biopsy of my stomach (swollen) and my esophagus (swollen). He gave me paperwork on gastritis and esophogitis. Big whop. This still doesn't explain my diarrhea. It explains some of my symptoms: nausea, vomiting after meals, etc but not my chronic diarrhea! I'm beginning to get frustrated. I trust my doc, and he seems genuinely confused as well. I've already cut out soda, but according to this paperwork I should be cutting out caffeine and juice! That cuts out everything but water!!

 

I'm going to wait until the biopsy comes back before I go glutten free. At this point, I'm not sure if it's gluten or lactose intolerant. If I have to go either, most of my diet will be cut out. And I did not go gluten free before my procedure, knowing he would have to see damage if it was there.  

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cyclinglady Grand Master
cyclinglady
Posted

I had a Marsh Stage IIIB intestinal damage based on biopsy. Visually my GI doctor thought I looked okay. He told me to wait for the biopies to come back. He took about six or so biopsy samples as the small intestines is about the size of a tennis court and patches of damged villi are easy to miss.

Here is a link from the University of Chicago's Celiac Website which explains the diagnostic process:

Open Original Shared Link

Did you not get a celiac blood panel test before your endoscopy? It sounds like your GI doctor is not celiac savvy. A second opinion might be wise. I would also recommend getting copies of files (notes and lab results) for your record and to share with other doctors.

kaseydylan Newbie
kaseydylan
Posted
  • Author

Thanks for your quick response. My doctor took 4 samples; I don't know if 4 each or 2 each. He said he is checking for any diseases. 

cyclinglady Grand Master
cyclinglady
Posted

Here is another link about celiac disease and a celiac blood panel:

Open Original Shared Link

It sounds like he skipped the blood panel completely. I would not go gluten free until you get this blood panel. Many things can cause intestinal villi damage besides celiac disease. Be sure to get the complete panel because personally, I tested positive to only one of the blood tests and yet I had severe damage.

Here is the complete panel:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

Welcome to the forum and let us know how it goes!

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