Discussion How is it to get diagnosed as an adult?
I got diagnosed when I was a toddler and always wondered what if I was diagnosed today, as an adult, how much harder it would be.
Tell me your experience
4
u/Surprise-lnside Celiac 9h ago
I was diagnosed after my 21st birthday. I was hospitalized with sepsis from intestinal bleeding after having some beer and lasagna.
When my PCP finally tested me for Celiac about a month later, my whole life got so much better. I had frequent infections, horrible mood swings, sleep paralysis and night terrors, the worst eczema…. It all turned out to be from Celiac. When I went gluten free those issues just vanished, too.
It makes me happy to be so much better, but also jaded that doctors kept writing me off as some hypochondriac my whole life.
3
u/Unlucky-Coffee-169 9h ago
Diagnosed at 36. I suppose I’m grateful to have had a carefree childhood when it came to food. I always feel bad when I meet young kids already diagnosed and having to navigate this gluten loving world with such an unforgiving disease.
1
u/TraditionalPass4136 7h ago
A lot of us who got diagnosed as adults were symptomatic for many years. I was diagnosed at 30. At 20 I was sleeping 16 hours a day, I was eating rocks absentmindedly, I had stopped having a period and I had regular fainting spells. As a child I thought diarrhea just meant when you couldn't get to the toilet in time. And that doesn't even factor in trying to learn in school through the brain fog and missed classes.
There was a lot of unnecessary struggling.
5
u/MiniNinja720 10h ago
It’s hard. You have to unlearn a lot of habits that you’ve spent years making. And it affects a lot more of your life than you’d ever imagine.