Category: Celiac

Getting diagnosed with Celiac Disease – My Story

Getting diagnosed with Celiac Disease – My Story

This is my story of getting diagnosed with Celiac Disease. I thought I’d share this because I realized there aren’t many videos about people with celiac disease, and I felt like it might help people if they knew they weren’t alone. ***UPDATE (this is gonna be long, its a crazy story)***
on october 23, i got a colonoscopy to check for lower stomach problems, and doctors found nothing. after that, my parents and i kind of got discouraged. i still ate completely gluten free, but continued to poop total water every day. i was getting migraines, intense dizziness, full body fatigue, full body aches, confusion, rashes, intense stomach pains 24/7, and absolutely no appetite. i weighed 83 pounds. on january 8th, my parents took me to CHOP (childrens hospital of pennsylvania) to see what the doctors there thought. all the previous doctors we saw gave up. basically, CHOP said my weight was at feeding tube level and they were gonna give me 2 weeks to get my weight up, or they were going to admit me and put me on feeding tubes. that being said, i decided to drink 3 boost plus drinks a day. two days later, january 10th 2016, i woke up with the worst, most intense stomach pain i have EVER had. i didn’t have a fever, so my mom wasn’t super concerned. I walked around the house pacing and panicking all day. i couldnt eat, sleep, or do anything but pace and panic; the pain took over. it got to the point where i was telling my mom i wanted to kill myself because i’d rather be dead than live the life i was living. i was honestly contemplating suicide. i felt like doctors were never gonna figure out what was wrong with me, and id never get better. i was scared to be put in the hospital on feeding tubes. i felt completely alone and honestly, i thought i was going to die. i was in that much pain. later that night, my mom couldnt take me crying anymore, so she drove me over an hour to dupont childrens hospital.
we got to the hospital, AND we waited in the er waiting room for over 2 hours. finally i got taken back and given pain meds, but it didnt stop the stomach pain. doctors ordered a lot of tests, and they figured out i had appendicitis. of course. they scheduled me for surgery the next morning. they gave me a higher dose of pain meds, and put me in a nice room with two extra beds for both my parents to sleep in. the next morning, i got my appendix taken out, but of course, theres a plot twist. the surgeon told us i had what they call a veil. its tissue that was wrapped around my intestines, colon, and appendix, knotting them together and pulling them to the right. it was causing me intense pain, bowel movement problems, and digestion problems. the surgeon said hes only seen a veil a few times, and that it is insanely rare. they removed it along with my appendix, and the surgeon was pretty sure that i would feel a lot better.
i went home that night and was really sore from surgery, but i didnt have any stabbing stomach pains. a little headache, just from everything that happened, but no migraine or dizziness. the weirdest part? i had an appetite. i felt completely normal. i forgot what it felt like not to have stomach pains. i was honestly scared to believe that i was “fixed”. but here i am, two months later, still completely pain free. my hair is growing back, my eyelashes are too, i dont have migraines or dizziness and im always hungry. and get this- IM 96 POUNDS. i was 84 the day i went to dupont.

when people ask me how ive been feeling, i tell them “i feel like a new person.” and that is the complete honest truth. i have never lived such a pain free, beautiful life. i am so glad i didnt give up, and i sure as hell am glad my appendix gave out on me. because without that happening, i most likely would have lived my whole life with pain 24/7.
thank you to everyone who read this and helped me through the hardest time of my life, but its over now. time to turn the page and start a new, pain free chapter. :))

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