10 years post diagnosis and this is what I’ve learned.
My entire life I have complained of tummy aches after eating. As I got older and entered my late teens, I complained about fatigue, nausea, bloating, and weight gain that seemed to happen overnight. There were a lot of days I couldn’t even get up because I just plain felt like shit. Id go to my primary care and they would prescribe anti-depressants… this happened every time from ages 16 to 26. I’d try to be polite about it and explain I’m just tired, not depressed.
so I became a therapist, got my masters degree and confidently would tell my PCP, depression aint it friend. they didn’t care, it was all in my head anyways.
from 18 to 22, every other year id have a really serious bout of illness that would land me in the emergency room. never any answers or course of action but it was always GI problems. one time all my lymphnodes were swollen so they told me they thought I had cancer and sent me to an oncologist. that was a wild ride..
from 22-25 I went hard on “eating clean”, no carbs, minimal gluten, and a lot of my issues improved. I fell off that wagon at 26 when I was wrapping up grad school and moved home. At 26 I gained weight and it felt fluffy, inflamed and different. I thought I had MS and was going to die before anyone figured it out.
Then came 27, the year of diagnosis. it was bad. I was really sick, I ended up in the hospital twice that year. the first time I was so backed up, I had been vomiting all night. I thought my abdomen was going to explode. I was on a regimen of MiraLAX and antispasmodics that were not helping. Switched up the antispasmodics told me I had IBS and sent me home.
Kept following up with my GI and pushing for answers other than IBS. He kept shrugging me off then came the second hospital visit. I am pretty sure I picked up the flu from my niece and was violently ill. The attending was concerned for me and pushed my gastro to do a colonoscopy and endoscopy. a few months later I did it and I got a call from my GI a week or so later saying I have celiac. mind you the call came on a Friday evening, I was driving home from work.
There was zero follow up after that. my gastro made it clear, just eat a gluten free diet. so like many others on this thread, life post diagnosis was messy for a while.
I’ve learned a lot about celiac from Reddit, instagram, and a bit of my own research. It took almost a decade to feel somewhat confident about my knowledge and to educate providers when they question my diagnosis. I could write an entire post on the stuff providers have said to me. or this personal trainer who confidently said “you might have something like celiac but not celiac”. so you’re standing there like oh wow you cured me I’m going to eat all the bread around the world now. ANYWAYS, here’s to a decade post diagnosis! happy Celiac awareness month. May we live long healthy lives outside of the gaslit hellhole that is our medical care.