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Cannot Seem to Get Answers About My Diagnosis

Zerosan

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Zerosan Newbie
Zerosan
Posted

Hey all, long time lurker but first time poster. Last year, around August, I had a Biopsy after years of Symptoms. I was told after the test that nothing was wrong, the day after my doctor called and said that it was Celiac. Looking at my medical records show that one of their documents says negative but some of the biopsy paperwork shows positive. So I went gluten-free but my symptoms continued. Constant Nausea, abdominal pain and weight loss. This continued and I was prescribed with a Nausea medication to assist with handling that, it was suggested I get a second look at what is going on. So I go to Mayo Clinic, there I get a second endoscopy and it comes up negative. One of my doctors believes it could be due to my gluten-free diet, the other does not believe I have Celiac. I have done a CT Scan with Dye, eating the radioactive food test and now they want me to do a pill biopsy due to some swelling in my small intestine.  I have kind of been at my wits end and tired of feeling this way everyday even though I have changed my diet and such. Any suggestions? They still are unsure why I am feeling this way or how to properly treat me. My story has a tad more to it but those are the big plot points in my life at the moment. Any thoughts on the matter? I appreciate anyone taking the time to read this even, I don't know who else to talk to about this or how I can control these symptoms. 

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cyclinglady Grand Master
cyclinglady
Posted

Were any of the celiac blood tests given at any point in time?  

Zerosan Newbie
Zerosan
Posted
  • Author

I did receive multiple blood tests, all showed as negative. They did some months before the original biopsy, right before / after first biopsy and before the second one as well.

cyclinglady Grand Master
cyclinglady
Posted

So, negative blood tests, yet the first endoscopy/biopsies revealed damage (wonder how much?).  Were other things that cause villi damage ruled out?  Here is a list:

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cyclinglady Grand Master
cyclinglady
Posted

Oh, has your gallbladder been checked for funtionality?  This can cause severe pain, nausea, etc.  An ultrasound or CT scan will not catch gallbladder functionality.  I should know, my BG worked on and off for years until it start to rot.  No stones - just would not empty (randomly).  

cyclinglady Grand Master
cyclinglady
Posted

Okay, the forum edit function is not working today in my iPad.  I meant, GB (gallbladder) not BG!  ?

Zerosan Newbie
Zerosan
Posted
  • Author

My Gallbladder was tested and appeared to be operating normally, that was their first though on the pain. As for the damage, it was described as not that much, I do have a slight intolerance to Milk. Could that have caused the damage? They thought it might be Crohns which is causing the swelling but they said its minimal but still noticeable.  If I had Celiacs do you think when they tested again with a biopsy it would show?

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Zerosan Newbie
Zerosan
Posted
  • Author

They did some kind of blood test or something for Crohns early on and it tested negative i believe, I see what you mean. Edit function didnt work too well on Galaxy tab either =).

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