Discussions By Condition: I cannot get a diagnosis.

2 1/2 years sick, countless tests...need help

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: BriBrown527
  • January 23, 2012
  • 06:35 PM

I have been sick for over 2 ½ years and I am no farther along in a diagnosis than when I started. I started getting sick in the summer of 2009. I was under a lot of pressure at this time, I worked 3 jobs and still could barely make rent. I was not eating properly so I started to get sick. Over the course of the next year I was eating better, but attributed my sickness too lactose intolerant. Every time I would eat of would have very bad stomach cramps normally within 30 minutes of eating. Mostly this would result on terrible diarrhea. I stopped eating dairy and my symptoms lessoned for a couple months, but would then come on in full swing at random times. It started getting much worse in the spring of 2010.
I moved back home the summer of 2010 and when my stress level and eating went back to normal I thought I would feel better. Unfortunately I started getting more sick. I would always have very harsh stomach cramps and would always have diarrhea, no matter what I ate. It was inevitable. I finally went to a doctor. I just went to a normal physician and he ran some blood and stool tests. The tests came back positive with H. Pylori. I was but on antibiotics for 2 weeks and told I would be perfectly fine afterwards. My symptoms lessoned while on the medication and for about a month I didn’t get sick too much, then in the fall of 2010 I started to get sick again. I was getting sick no matter what I did, whether I ate or didn’t eat (no matter what I ate).
In the spring of 2011 I decided to try a Gluten Free diet, because I heard many stomach problems are attributed to a gluten intolerance. I went G-Free and seemed to be doing alright. I wasn’t taking it to the extreme though and wasn’t worried about cross contamination etc. I still kept getting sick though, even with being dairy and gluten free.
In the summer of 2011 I started going to see specialist. I started with a regular physician who ran more blood and stool tests, which came up normal. She recommended me to a Gastroenterologist in my local area. I saw the Gastroenterologist and he recommended that I have a colonoscopy performed. He also ran more blood and stool tests, which came pack normal.
After my colonoscopy in July 2012, the results came back normal and the Gastroenterologist told me I probably had IBS. He put my on Bently (Dyclomicine) and said I should be fine. I was not fine however, being on the medication heightened my symptoms and I was getting sick more often. I desperately called and was trying to find some answers, he told me my body was fine and that I needed to go see a psychiatrist because I was depressed. I haven’t talked to him since and refuse to.
In August 2012 I went to my husband’s physician, I explained all of my problems to him and he recommended I take my gluten free diet to the extreme and also see an Allergen. As I started going to the extreme g-free I felt great and thought for sure this was the answer. I went and saw an allergen, had a test done and there was about 5-6 more foods he recommended I take out of my diet for a little while, but said I wasn’t allergic to them.
It wasn’t until early November 2011 that I started to feel very sick again. This time there were more symptoms. Not only did I have the usual stomach cramps, upper stomach pains, diarrhea but I was feeling very nauseous and the normal symptom pains were increasing. I went back to my husband’s physician and he didn’t know what more to do. He ran some more blood tests and an ultrasound test of my gall bladder, which both turned up normal. He them recommended me to another gastroenterologist in a nearby city.
December 2011 I went to the gastroenterologist in Charlottesville and initially met with a physician’s assistant. By this time I have had a notebook of all of my medical records to show them, she took a copy of each one, spoke to the doctor and recommended and Endoscopy. She also recommended I start adding Gluten back into my diet so that when they test for It in the endoscopy it would show positive or negative. Logically I still shouldn’t have been getting sick.
On December 20th I had my endoscopy. There was a very small ulcer detected in the results, but the doctor said they weren’t even large enough to cause pain normally. They put me on Prilosec and told me to take it for 2 months. The biopsies taken were all normal, which means gluten wasn’t the problem. The doctor them recommended I have a CT Enterography and a Gastric Emptying Study performed.
January 2012 I had both the CT Enterography and a Gastric Emptying Study performed. Each have come back normal, showing no abnormalities. I am still very sick, I have stomach cramps all of the time, when I eat and don’t eat, I go to the bathroom countless times a day and also very sharp shooting pains in my upper stomach. I have asked the Gastroenterologist what my next steps are, he upped my dosage of Prilosec to two a day and said to call back in a couple weeks. Then he decided to put me on Bentyl. I said that I was already put on that and had to be taken off because it heightened my symptoms so badly. The nurse said, ‘Well if it hurt’s your stomach, don’t take it”. I’m very frustrated, am going to change doctors again, but don’t even know where to begin. Any thoughts?

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