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Am I getting closer to diagnosis?

Hello, I am new here and new to this disease. For the last four months I have had severe abdominal pain (made worse when eating). After every meal, I would have constant diarrhea. I was initially diagnosed with an ulcer by my PCP and was put on omeprazole for 3-4 weeks along with the BRAT diet. Neither did anything to improve my symptoms and the bland diet of white bread, crackers, white rice aggravated my stomach even more and increased the abdominal pain. I have been to my PCP who ordered some blood work, CBC with diff, full metabolic panel, and CRP, all normal. They ordered an ultrasound and that came back normal. I was sent to a GI who ordered a HIDA scan to check my gallbladder, and while I did come up borderline low-function (ejection fraction rate of 36%) 35% is normal. A CT was ordered and denied by insurance. Pain and diarrhea persisted, followed by light headedness, vomiting, lost of appetite. I went to a surgeon for a second opinion after the HIDA scan and she ordered (and successfully received insurance approval) for a CT scan with barium. The CT scan showed an abnormal thickening of the small bowel loop into my duodenum. My surgeon called the GI and instructed a more in depth endoscopy to ensure they got low enough to biopsy the Damage. I decided to try the AIP (autoimmune protocol diet) at recommendation of my aunt who has been living with crohn's for well over 40 years. This helped so much and it seemed like I was finally getting better, at least getting more food and nutrients and less abdominal pain. Diarrhea decreased and became loose stool, but less frequently, maybe 10-15x per day or less. it wasn't bad enough that the GI refused to call the insurance to do the peer to peer to get approval for the CT, he also didn't scope and biopsy low enough to show anything and my biopsy results were shocking, normal. Like all other tests except my CT scan, which I had to find a new doctor and get a second opinion to obtain. Since the upper and lower GI my symptoms have been awful again have abdominal pain regardless of the types of foods I am eating. I went to another GI doctor who ordered some more blood work, a fecal test for calprotein and giardia. We just finished a gastric emptying study and I am waiting on results. We are also now going to do a pill capsule endoscopy to try and get some answers. I bloat when I eat and my stomach blows up. I have lost over 15 pounds (most of which has been in the last month or so alone). I was an active, relatively healthy 28 year old prior to September. I always suffered digestion issues but this has been constant. I have a family history or crohn's, diverticulitis, and both paternal grandparents died of colon cancer. Does this sound like crohn's and is it normal to have normal blood work but crohn's like symptoms? I have also had blood and protein in my urine, joint pain, constant fatigue. My life has done a total 180 health wise and I am just looking for some answers. Even though my blood work and other tests have come back normal, I am so concerned this is crohn's. Celiac, lupus, thyroid have all been ruled out. Small bowel lymphoma was a possibility but that has since been ruled out as well based on the biopsy results.

  1. Hi ,

    I'm so sorry you are going through it. Like you, a lot of us had to go through many obstacles before being properly diagnosed. I was diagnosed with a few different diseases before being diagnosed with ulcerative colitis. And even after, there were a lot of questions about other disease possibilities. I hope you get some answers soon! Please keep us updated on the progress.

    ( Team Member)

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