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I lost it…took my life in my own hands and kept that appointment. Since then all the pains – guts, joints plus fatigue etc. I first visited the Doctor when I collapsed at work in extreme acute pain (think appendix) when I was about 19 (approx 1996). Dude is always right and me…not so much.) After speaking with me for only a few minutes and viewing my food diary, the doc asked me if I had ever heard of celiac. You know what the average time is for a celiac diagnosis? If you’ve got a Doctor Horror Story to share, write yours in the comments section below. After my doctor couldn’t figure out why I was having so many issues with my digestive system (stabbing pain, nausea 24/7, cramping and a belly so bloated I looked pregnant) she sent me to a GI specialist. She asked me to describe the pain and what I did to manage it (slept, heating pads, ate LOTS of crystallized ginger for the nausea). It took me another three years to find a doctor who would take me seriously. I had had stomach issues my whole life but they were either diagnosed as lactose intolerant or stress due to issues with my mother. The doctor told me, maybe I was diabetic, maybe I was just depressed. Test after test for lupus she said it was inconclusive but had nothing to do with my stomach issues…wtf?? He told me to try to get in with a G…thanks for the help bud! Was kept in for a week whilst the gynecologist and gastro doctors both pointed at each other (that was weird). I didn’t realize it at the time, but I was extremely lucky to have been diagnosed so quickly. And even after we finally get the diagnosis, we are simply told to not eat gluten and are shown the door. These stories need to be heard…and I’m just the guy to do it Let’s raise awareness and at the same time, push the medical community to try and get their sh*t together. Her response, “As long as you take laxatives you’ll be fine.” At that point, I was desperate for anything so I tried the laxatives. In a couple of days, I was sicker than I had ever been. A year and a half ago I began to be concerned over my significant memory loss, severe exhaustion and increase in gastro symptoms. The pain was so bad not even the morphine could stop it – but I didn’t care so much as I was high as a kite.I felt better for a month then spiraled downwards fast. Begged to go to Boston, he only ran more blood tests. So over 16 years after me presenting with the very scary symptoms, and making plans to gradually leave work due to sickness (at the age of 34), I finally got diagnosed. My entire GI tract BURNED from mouth to rectum and even water burned doing down.Homeopath tests came back positive for 30/40 different food allergies. From late 2007-late 2010, I tried to find out why I was in so much debilitating pain and dropping weight so quickly. One doctor told me “congratulations on your weight loss”.I dragged myself around and researched endlessly to figure out what the hell was going on. Everybody always seemed healthier, energetic, happier than me. Depression, anxiety…they threw pills at me for that. Up at 3 am, going to the bathroom every 20 minutes. I lost a lot of weight in a very short time period. Countless tests later, and he set up an appointment to talk about the results. He also prescribed me heavy meds which I didn’t take.I was told “it could not be celiac” because my blood panel was negative and “no one in my family has it”. My skin sometimes hurts in a weird tingly ice cold pins and needles way, and I get weird rashes on my scalp that make me look like I’m scratching at lice bugs. They did some tests but nothing came of it (terrified me half to death when they scanned for brain tumors). Then, about 3 months ago, it was as if my body just gave up. I was anxious all the time, and I was hospitalized for severe inflammation in my chest that had me on bed rest for 2 weeks. I did have warts on my hands and feet off and on growing up and into my early twenties.
I was offered more drugs than you can imagine: pain meds, anti-depressants, anti-anxiety meds, sleep meds, antacids, thyroid meds I did not need —and even sent to a psychiatrist– to get me to shut up and leave the office.(well, someone has to be diagnosed first for that statement to be relevant and blood panels are negative often enough to keep people undiagnosed! When nothing conclusive was discovered I was just…forgotten. It’s just inflammation, take it easy, take some more pills, and it will go away. I suffered on and off with depression and heart palpitations.) The GI doctor I saw for years did an endoscopy yes, but failed to biopsy me while down there, yet t I did not know this until a year later when I finally saw the report. never trust the word of a “nurse practitioner”–ask for the report and read it yourself! Now when I get glutened, I go into IMMEDIATE depression mode. I know I’m getting better when my mind clears and I am happy again.What 24 year old girl should be living on a diet of baby food and applesauce because she can’t keep anything else down?After being tested for celiac about 5 different times and it being negative for some unknown reason it finally came back positive!!