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clairelouise added a post in a topic Blood Test Negative For Gene Terrified Of Endoscopy
clairelouise added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsBlood Test Negative For Gene Terrified Of EndoscopySince I was little I would break out in severe eczema and for years we went to doctors and specialists who said the eczema would pass when I was a teenager. Unfortunately I'm 20 and I still break out severely. About three years ago I was rushed to emergency at lunchtime because I was crippled with pain, the emergency room doctor asked what I had for lunch and when I replied "All I've had is a roll" he suggested that I may be allergic to gluten.
This isn't the first time I've felt these pain, mostly at home or they haven't been as severe but it's been happening for years and most doctors thought I was faking it to get out of school. We went to a doctor who assured my mother and I she would get to the bottom of this problem, that she would make sure she found out what was causing me so much pain. She had me go for a genetic blood test but when it came back negative she said "You know Claire, you can't fake these kind of things. You have to go to school.", and I wanted to cry on the ground. I couldn't believe how easily she gave up and thought I was faking this pain. My mother who was furious dragged me to several doctors who practically said the same thing. I confided in my history teacher how distressed I was, he was a celiac, who told me that the genetic test can come up negative.
Mum dragged me to a specialist who said that the only way I can truly be sure is if I get an endoscopy which I was all for until he told me I had to eat gluten for 6 weeks. I'll note here that between being told I was probably allergic to gluten and finally going to the specialist I had cut all gluten from my diet for around 4 months and I was no longer breaking out in eczema or having such bad pains all the time. The thought of eating gluten for 6 weeks makes me cry, it's absolutely terrifying and a lot of my friends don't understand the pain I feel after eating even a regular cracker or taking a bite from bread. I was in my last year of High School and I couldn't be suffering so badly when I needed to study. The second I left I got a job in the city and I've been working my butt off for a year and a half.
've finally left the job due to a downfall in management and I'm feeling like maybe I should get the endoscopy as my intolerance is worse. I break out from using makeup or dishwashing liquid with gluten in it. Because it doesn't say I'm a celiac in my files, a lot of doctors don't take me seriously and prescribe me medication which I've been glutened from even after I told them I'm allergic. I also have no clue if my insides are healthy. I really need advice here, I'm so scared about what I should do. Plus I need to look for a new job but I'm currently a giant ball of eczema because mum made scones and I accidentally inhaled some regular flour.
I'm sorry this was so long but I'm terrified and would really appreciate some advice.
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