Late Diagnosis of Celiac Disease: Coping with Dietary Changes

I was diagnosed right before going to college and up until there months before I was diagnosed I had never had a symptom. You have to take time to grieve the food you will never eat but the right foods that actually taste good are out there. Don’t get discouraged by having gf food that’s awful (cause there’s a lot of it haha) but I promise you there are good substitutions out there it’s just takes time to experiment and find out what’s good.

I was never diagnosed. Am 87. Migraines started at 17. Fatigue prominent after first baby. Stomach issues appeared in my 50s. Continued to worsen until a year and a half ago when eating a piece of bread would put me to bed for days. Then any gluten product would do the same. Had neurological and balance problems since 70s. I have osteoporosis and compression fractures which has reduced my height from 5' 11'' to 4' 7". All my various doctors attributed my symptoms and conditions to bring a hormonal female until I reached 65 and then I was just old. My brother died of colon CA at age 30. He had stomach issues from birth on and the was dx with schizophrenia at 20 so his stomach problems were attributed to "nerves". An Aunt on my mother's side died of "stomach" CA, 2 male infants died of unknown disorders. One of my sons appears to be schizophrenic. He is short in stature and has Celiac symptoms as an infant. Frequent large foul smelling diarrhea which I treated with raw honey and water. Then a formula of banana flakes and cottage cheese until he was about months old and could tolerate soy milk. My younger daughter had problems with pastas. None of my 4 children understand or accept Celiac. They think I am just old and odd. 😭

I got diagnosed at 28, right before I found out I was pregnant and I craved fried chicken the whole time 🙃 Now, 3 years later I’ve found it’s getting somewhat easier to manage. I live in a rural town with limited options, so I stick with those options

I was diagnosed at 63. My sister was diagnosed 2 years earlier. I've always had "digestive issues", so she suggested that I get tested. And now I'm on a gluten free diet and still figuring it all out. 😏

I was diagnosed at 48 after experiencing severe reactions out of the blue. I’ve been gf for 3 years and though it gets easier to refuse foods that make me sick, I still miss them and still feel excluded by everyone in my world even though they mean well. I’m frequently on my own for meals. But I’m getting healthier every day and my symptoms are slowly getting better.

my grandpa got diagnosed at 75 😭😭😭

I’ve just been diagnosed recently and I’m 21 too. It’s been hard and I’m sorry you’re going through this too. There’s a lot of options as to gluten free foods now a days. I usually stick to foods that are naturally gluten free. Making food at home is a great thing to do also if you’re worried about cross contamination.

I am 49 and diagnosed in 2019 after suffering horribly with stomach pain . It took them 2 yrs to diagnose me .

I was diagnosed a few months ago at 19. It's so hard, especially because people don't realize that it has to be triggered so you don't necessarily experience symptoms from a young age. I run into "you've dealt with it forever, it can't be that bad" all the time and its infuriating because no, it really is that bad

I find focusing on the foods that are naturally gf is helpful rather than immediately trying to recreate gluten food. Like I know if I tried to have pizza I’d just be upset that it’s not as good. But if I eat risotto or a stir fry or stew then I’m just focusing on things that are good on their own. But yeah, it fuckin sucks. Got my dx at 24 and it was a major bummer.

I am 34 and diagnosed 2 years ago. I know gluten free options are very different now than in the past, but changing the way you eat is never easy. Especially wanting food you know you can’t have. It’s still hard when going out to eat, family gatherings, hanging out with friends etc. Biggest thing is learning how to re-create some of those foods/dishes you wish you could have. I have such a reaction that the “miss” quickly goes away. Finding the things that will fill the desire for something you may not be able to completely replicate (such as a particular donut…frozen gf donuts don’t match up to a hot fresh one). I learned I have to take it day by day and learn from each life journey.

I have not been diagnosed celiac but have found im intolerant to gluten by process of elimination. This was this year and I’m 39. It’s very difficult

I was diagnosed 9 years ago when I was 18, but I’ve heard of people that got diagnosed at age 27 and 28. And at the time I was diagnosed there was NOTHING for celiac people to eat. That’s not how things are today luckily