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Josie_ky added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsNot Sure What To ThinkA little backstory: I've had some GI problems ever since I had my youngest seven years ago. At first it wasn't too bad. I would eat something and get diarrhea or just feel generally sick or kinda fuzzy. I'd call it "food coma" because I just felt really fatigued a lot after I ate, esp lunch when I'd eat sandwiches or whatnot. So about 3 years ago it started getting really bad. I started losing weight. I lost about 30 lbs in a month and a half. I felt like I was wasting away and I was pretty concerned. I ended up in the ER one night vomiting uncontrollably for hours and hours with bad stomach pains after eating several oatmeal raisin cookies. They did a catscan and found nothing. I was kept overnight for observation and then sent home in the morning with a diagnosis of abdominal pain. I started missing a lot more work due to general stomach upset and pain, feeling nauseated, etc. I was starting to feel like maybe I was just crazy.
So I finally got fed up and went back to the my GP several times complaining about stomach problems (ie: diarrhea). She put me on an antispasmatic which didn't help me at all. She told me she thought it was IBS, and that the next step would be colonoscopy. I thought ugh I don't want to have that done unless I have to. So I kinda suffered with my problems for a bit more. About a year ago my bathroom visits started getting really frequent, especially in the morning. I was having a lot of gas during the day. I went back to my Dr. Office, but this time I saw someone else. She ordered a celiac blood test along with other blood tests. It came back negative. So I thought ok I don't have Celiac Disease and crossed that off my list. It was looking more and more just like IBS, I guess. Or at least that's what I kept trying to get convinced of.
So about four months ago I just was so beyond sick I could barely come to work some days or I'd end up going home because I was in severe pain. I started losing weight again (this time 15lbs in a month) and I began cutting foods out of my diet. No dairy, no carbonation (ie: no soft drinks), anything really sugary, raw vegetables (only eat steamed), fried foods ,etc. Anything that could possibly give me extra gas I just stopped with. I basically was and am living off simple things with little to no added spice, granola, crackers, etc. It's not healthy, I know.
I ended up getting sent to a GI dr. It took a good 2-3 months to get in there. He asked me a lot of questions about symptoms. I told him mostly my pain was on the left side and that I had to go in the morning several times along with gas problems all day. He asked me really personal stuff like color and whatnot which was kinda gross, but I was there to figure this all out so I told him my bowel movements were fairly light in color (sorry if that's tmi). He was concerned about my weight loss and something I thought weird at the time he touched my legs and felt my ankles. I figured he was checking for swelling which I do have some. I've also had terrible dental issues with enamel for years now despite taking care of my teeth. So he told me lets do an endoscopy to check for celiac. I told him about my neg test, but he said I could still have it. He is also ordering a colonoscopy too to rule out everything else, but he didn't seem to think that was my real problem.
I am a little worried while I wait for a month and a half to have my endoscopy done. I am afraid of how much whatever he finds will change my life. I want to get better, but I don't know if it could really be celiac since the bloodtest said no. All my friends and family are so worried about me and I just want to get better. Does this sound like possible celiac? I don't want to be worried for nothing.
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