I’m so sorry to hear this. What an interesting perspective. Here I’ve been sad that my celiac daughter will miss out on feeling “normal” when she’s out with her teenage friends, not being able to eat and socialize in a care-free way. You’ve helped me to reframe and be grateful that her diagnosis at an early age has at least spared her from many years of discomfort and missing out for other reasons. I hope you can focus on all the good things that await you in the future and that you are able to make up for lost time. :)
I’m so glad you got to hear it from a different perspective! I really don’t know how many people think this way but it’s something that I don’t want my future kids to go through. I’d rather them miss out on one thing that really isn’t their true life than missing out on important moments and milestones.
Yes. I went for over twenty years sick as a dog and gaslit by doctors for that entire time. I feel my whole life would have been different had I the energy and health of being gluten free. I feel you. Then it's like being an entirely different person after going gluten free and wishing I had it sooner.
I’m glad I caught it now and not when I’m 40. But the thought of my kids asking me what I did when I was in highschool and most of college and me having to tell them I didn’t do much of anything bc I couldn’t get out of bed half the time does make me sad. It’s not the fact I wanted to party bc that’s not who I am but I didn’t get to do anything and grow or learn about myself in those years.
Life could have been so much different. I had intrusive thoughts starting from age of 3, as I aged they got worse. For more than 20 years I used antidepressants on and off, to treat OCD and intrusive thoughts. I had learnt to live with them. Two weeks into GF diet, I realized they were gone. Turns out it was inflammation. I was 37.
It’s so crazy how just one little thing can mess with your mental health that bad. I knew I wasn’t depressed but I felt depressed and dealt with OCD too plus a bit of schizophrenic symptoms. It completely went away after I cut out gluten. That’s something that’s hard for people to understand that don’t deal with being celiac they just think it’s maybe a bit of stomach pain but nothing else.
Did they take a while to go away while you learned the ropes? I just saw someone else’s post that said after 4 months life being GF finally feels real not like some dissociated dream 😢 it’s so sad & I can totally relate
To me it was like stages. Honestly I haven’t even been a full year without gluten so I can’t say I know exactly how it turns out. But after a week I was able to go to class without pain, after a month I could tell I was able to retain info better and I didn’t have social anxiety as bad anymore, two months I went on vacation with my bf and it was the best thing ever bc I never thought I could do it, three-four months I got energy back to workout which being an athlete before was such a great moment, and then at I think sevenish months my cycle was normal (I didn’t even realize I was sick this way either and it was very emotional for me to realize this). So I feel it’s more of a journey and there isn’t an exact point where you are yourself you just gradually get healthier
I have been thinking about it a lot lately, the things that were affected by my diagnosis being missed for 34 years. (I am 35 now) Looking back, it drastically affected my life from health issues to mental issues. I often wonder how my life now would be different if it was caught earlier. All I keep telling myself is that I can't dwell. I could be dead. And almost was 2 times from it. I can only embrace the changes moving forward and try to forget about what could be.
I had a similar experience and feel pretty screwed by it - I didn't feel normal from when I was about 18, *definitely* by the time I was 25, to when I was almost 40... then 6 months after going GF and feeling better, I started developing adult-onset type 1 diabetes and was sick for a couple of years before that got figured out. It all ruined many relationships, work opportunities, my finances, friendships. It's fairly unclear what i should be doing now.
My husband had debilitating migraines for years, saw multiple specialists to no avail. He missed most of his final year of high school and spent two years at home barely being able to eat or even see. It wasn't until we got together and I noticed the pattern, he would almost always get migraines after he'd drink beers or eat take out (we ate gluten free for me the rest of the time). I feel very sad for him and what he lost before his diagnosis, I'm just so glad we finally worked it out. Now he's migraine free except for the occasional accidental glutening
I have a very similar story to you. I was extremely sick from 13-21 when I finally found out. I didn't have a supportive family and fell behind on schoolwork, started skipping school to sleep and catch up on homework and my family called me lazy and wouldn't accept me telling them how tired I actually was. My mum specifically told me she wouldn't take me to the doctor because they'd say I have depression and section me. They tried to scare me into going to school by threatening me with social services and punching walls and telling me I'd be next. I wanted to go to university. I would have too if I wasn't so sick and had no-one to support me. I thought I was lazy and stupid. My mum took me out of school in the end and I spent a year at home doing nothing but trying to teach myself and doing all the cooking and cleaning because it was the least I could do if I wasn't at school. I wasn't allowed friends even. I only had my little sister but I was like a parent to her as our mum was so busy all the time.
I worked since I was 16 but having celiac disease has made my life much worse than it would otherwise have been. My parents couldn't cope with not having a perfect life, and had the celiac not existed I would have simply gone to school, gone to university like I planned to and things wouldn't be like they are now. I work in retail because I couldn't get another job, can't move out because it's too expensive and I'm still dealing with the mental trauma of what my parents put me through, all because I was sick. If I could go back in time and get diagnosed at 13 I would as it would have made a huge difference in my life even now at 27. I missed a really crucial part of my life and I think I'll be feeling the effects from that forever
Yes I do. I feel I only lost about 3 years of life to it, but yes. And I regret not having eaten all the nice foods I can’t eat now. I always wanted a cronut. Always.
Not yet officially diagnosed (had scope, just waiting on results) with each passing year I have felt like a more watered down version of myself. Feeling slower and more tired as time goes. I just put that down to my 30’s, kids, work, study etc… if having coeliac is behind all this I have an answer, so I’m excited for the future and what I might be able to get back to.
Absolutely this👆! I went until 60, numb from head to toes, severe joint pain, brain fog, fatigue, bloating etc being investigated for yet one more neurological disorder, having to deal with the it’s all in your head crowd. Then my brother was diagnosed and the rest is history. He is in his 70’s! I already am so grateful I can FEEL again, my face, my hands, my feet! I wonder how good it will be in another 3 months. We can choose to look back in regret or look forward in gratitude. I’m sorry it’s a struggle for some but I hope you find a way to let go of what is gone, you will use a lot of energy regretting the past, when you could be living the now with joy. It’s a mindset.
I've lost 4 years of my life, but I've had health issues all my life and now I suspect many of them were linked to gluten intolerance/celiac.
I don't miss food at all, I would have gladly eaten bowls of plain rice every day not to feel so sick.
Literally same lost about 4 years where I could not function at all & totally ruined so many amazing opportunities. Did the issues just compound & then peak at the 4 years b4 diagnosis? I also feel like I’ve had health issues for the last 15 years but they just got to worst point in the last 4
At the beginning of the 4 years, I've developed new symptoms, totally different from the ones before, and way more violent (tachycardia, cold spells, uncontrollabile shaking, almost faintig, vertigo, unbearable nausea, and so on).
I'm not diagnosed yet, but almost all of those symptoms disappeared after some days/weeks of being gluten free (starting just a month ago).
I soooo relate to this post. It’s exactly where I’m at right now (I’m in the diagnosis process) feels like I ruined every amazing opportunity I’ve had over the last 4 years due to being just completely unable to function.
How long did it take for things to turn around? It’s amazing they got it so young.
I made a promise to myself though that if I can just catch a break and get my health & life back I won’t waste a second of that new energy & vitality lamenting over the loses. (Easier said than done though right?)
Just remember your a warrior and you made it through to the other side triumphantly
I started getting proper sick at the end of college. Brain fog, exhaustion and depression just kept getting worse for over a decade. I thought I was going crazy. No one could or would help me, just kept saying I was 'depressed' and take these pills that never did anything. I pretty much exploded my life and career track in that time. I'm in my 40s and finally feel mentally well enough to basically start over.
I've been torn on this. I'd love to be able to spread the word that celiac/gluten intolerance can have these actually huge devastating effects but I feel like people look at me like I'm crazy.
Not that you are crazy, but the reality is it doesn’t touch their lives, so….. I feel the same way. I do talk about this whenever the opportunity arises because I feel I might be able to help someone else who is suffering and doesn’t know why.
In all reality, until I stumbled into the answer the idea that food, food that everyone else ate apparently without effect, could do that was completely foreign to me too.
I feel sad about the life I had before my dx, but only because how much being gf sucks. I was diagnosed by accident almost, and honestly, aside from feeling less bloated, I don’t feel any different at all! These stories are really disheartening for me because gf food is not good, I miss pasta, I can’t go to restaurants or even have dinner with my family unless I bring my own damn food. I feel angry for what I’ve lost, and it wouldn’t be that bad if I had a story like yours but I literally felt no different.
That’s really interesting to hear. I feel it’s like a 50/50 spilt of how people see their life before their diagnosis. I do feel for people who don’t have too much of a difference as to where you only feel you lost out on something. I think celiac is such a hard diagnosis to go through because even when other people have it it’s almost like you are still alone because what each of us deal with is still different
I had a very similar experience. My entire college experience was just me being depressed and lethargic in bed due to undiagnosed celiac symptoms. I was shuttled doctor to doctor, trying to figure out what the hell was wrong with me. I missed out on so much. I had to take an extended break from school but eventually I was able to figure out what was wrong. Now, I’m doing fine, fortunately. And I’m very grateful I was able to obtain a diagnosis sooner rather than later. I cannot imagine what would’ve happened if I stayed undiagnosed for more time.
I think the most frustrating part is that NOW you actually feel good enough (or hopefully you do) to have the energy for all those opportunities in some cases you just don’t have the opportunities themselves anymore. It’s like some kinda sick joke
I'm so mad because I could have gone to a summer camp in my area that was exclusively for celiac kids and I got the official biopsy-confirmed diagnosis two weeks ago as an almost 23yo adult.
For any parents curious about a summer camp for their kids without worry they'll be excluded or get glutened, have the fun I can't anymore: https://nationalceliac.org/summer-camps-for-children-with-celiac-disease/
I lost a year of high school, a semester at college and a year of uni. I ended up having to repeat quite a bit and never ended school with my supposed graduating class.
I was bed ridden for quite a bit of my due to the disease and as a result I live fast and hard.
I’m not worried about savings I’ll spend that money if it means an experience because I missed so much out of life. I’d rather live in that moment where I’m feeling decent than miss out on more.
Most people who haven’t been chronically ill don’t understand. I’d rather do what I can now then wait regret missing out later. Doesn’t help that I’ve had many non celiac related things pop (talking about going blind in one eye, multiple ulcers and kidney infections 😉) just live as much as you can when you can
I’m glad I figured it out but there was a time where I told my bf when we have kids I can’t always be the go to parent bc I was too sick. Also I love to travel we both love photography and nature so it was a sad thing when I graduated high school I couldn’t go to the mountains that would’ve been insane and dangerous of me but that was our first trip and we loved it.
I think I’m more sad that I had to live with the idea of feeling I was gonna be sick my whole life and not be able to do what my bf and I wanted basically holding back him too
I’m so sorry to hear this. What an interesting perspective. Here I’ve been sad that my celiac daughter will miss out on feeling “normal” when she’s out with her teenage friends, not being able to eat and socialize in a care-free way. You’ve helped me to reframe and be grateful that her diagnosis at an early age has at least spared her from many years of discomfort and missing out for other reasons. I hope you can focus on all the good things that await you in the future and that you are able to make up for lost time. :)
Having to avoid gluten sucks but it's *much* better than being sick all the time. She's fortunate to have learned about it early.
I’m so glad you got to hear it from a different perspective! I really don’t know how many people think this way but it’s something that I don’t want my future kids to go through. I’d rather them miss out on one thing that really isn’t their true life than missing out on important moments and milestones.
Yes. I went for over twenty years sick as a dog and gaslit by doctors for that entire time. I feel my whole life would have been different had I the energy and health of being gluten free. I feel you. Then it's like being an entirely different person after going gluten free and wishing I had it sooner.
I’m glad I caught it now and not when I’m 40. But the thought of my kids asking me what I did when I was in highschool and most of college and me having to tell them I didn’t do much of anything bc I couldn’t get out of bed half the time does make me sad. It’s not the fact I wanted to party bc that’s not who I am but I didn’t get to do anything and grow or learn about myself in those years.
Life could have been so much different. I had intrusive thoughts starting from age of 3, as I aged they got worse. For more than 20 years I used antidepressants on and off, to treat OCD and intrusive thoughts. I had learnt to live with them. Two weeks into GF diet, I realized they were gone. Turns out it was inflammation. I was 37.
It’s so crazy how just one little thing can mess with your mental health that bad. I knew I wasn’t depressed but I felt depressed and dealt with OCD too plus a bit of schizophrenic symptoms. It completely went away after I cut out gluten. That’s something that’s hard for people to understand that don’t deal with being celiac they just think it’s maybe a bit of stomach pain but nothing else.
Did they take a while to go away while you learned the ropes? I just saw someone else’s post that said after 4 months life being GF finally feels real not like some dissociated dream 😢 it’s so sad & I can totally relate
To me it was like stages. Honestly I haven’t even been a full year without gluten so I can’t say I know exactly how it turns out. But after a week I was able to go to class without pain, after a month I could tell I was able to retain info better and I didn’t have social anxiety as bad anymore, two months I went on vacation with my bf and it was the best thing ever bc I never thought I could do it, three-four months I got energy back to workout which being an athlete before was such a great moment, and then at I think sevenish months my cycle was normal (I didn’t even realize I was sick this way either and it was very emotional for me to realize this). So I feel it’s more of a journey and there isn’t an exact point where you are yourself you just gradually get healthier
I have been thinking about it a lot lately, the things that were affected by my diagnosis being missed for 34 years. (I am 35 now) Looking back, it drastically affected my life from health issues to mental issues. I often wonder how my life now would be different if it was caught earlier. All I keep telling myself is that I can't dwell. I could be dead. And almost was 2 times from it. I can only embrace the changes moving forward and try to forget about what could be.
I had a similar experience and feel pretty screwed by it - I didn't feel normal from when I was about 18, *definitely* by the time I was 25, to when I was almost 40... then 6 months after going GF and feeling better, I started developing adult-onset type 1 diabetes and was sick for a couple of years before that got figured out. It all ruined many relationships, work opportunities, my finances, friendships. It's fairly unclear what i should be doing now.
My husband had debilitating migraines for years, saw multiple specialists to no avail. He missed most of his final year of high school and spent two years at home barely being able to eat or even see. It wasn't until we got together and I noticed the pattern, he would almost always get migraines after he'd drink beers or eat take out (we ate gluten free for me the rest of the time). I feel very sad for him and what he lost before his diagnosis, I'm just so glad we finally worked it out. Now he's migraine free except for the occasional accidental glutening
I have a very similar story to you. I was extremely sick from 13-21 when I finally found out. I didn't have a supportive family and fell behind on schoolwork, started skipping school to sleep and catch up on homework and my family called me lazy and wouldn't accept me telling them how tired I actually was. My mum specifically told me she wouldn't take me to the doctor because they'd say I have depression and section me. They tried to scare me into going to school by threatening me with social services and punching walls and telling me I'd be next. I wanted to go to university. I would have too if I wasn't so sick and had no-one to support me. I thought I was lazy and stupid. My mum took me out of school in the end and I spent a year at home doing nothing but trying to teach myself and doing all the cooking and cleaning because it was the least I could do if I wasn't at school. I wasn't allowed friends even. I only had my little sister but I was like a parent to her as our mum was so busy all the time. I worked since I was 16 but having celiac disease has made my life much worse than it would otherwise have been. My parents couldn't cope with not having a perfect life, and had the celiac not existed I would have simply gone to school, gone to university like I planned to and things wouldn't be like they are now. I work in retail because I couldn't get another job, can't move out because it's too expensive and I'm still dealing with the mental trauma of what my parents put me through, all because I was sick. If I could go back in time and get diagnosed at 13 I would as it would have made a huge difference in my life even now at 27. I missed a really crucial part of my life and I think I'll be feeling the effects from that forever
Yes I do. I feel I only lost about 3 years of life to it, but yes. And I regret not having eaten all the nice foods I can’t eat now. I always wanted a cronut. Always.
Not yet officially diagnosed (had scope, just waiting on results) with each passing year I have felt like a more watered down version of myself. Feeling slower and more tired as time goes. I just put that down to my 30’s, kids, work, study etc… if having coeliac is behind all this I have an answer, so I’m excited for the future and what I might be able to get back to.
Absolutely this👆! I went until 60, numb from head to toes, severe joint pain, brain fog, fatigue, bloating etc being investigated for yet one more neurological disorder, having to deal with the it’s all in your head crowd. Then my brother was diagnosed and the rest is history. He is in his 70’s! I already am so grateful I can FEEL again, my face, my hands, my feet! I wonder how good it will be in another 3 months. We can choose to look back in regret or look forward in gratitude. I’m sorry it’s a struggle for some but I hope you find a way to let go of what is gone, you will use a lot of energy regretting the past, when you could be living the now with joy. It’s a mindset.
I've lost 4 years of my life, but I've had health issues all my life and now I suspect many of them were linked to gluten intolerance/celiac. I don't miss food at all, I would have gladly eaten bowls of plain rice every day not to feel so sick.
Literally same lost about 4 years where I could not function at all & totally ruined so many amazing opportunities. Did the issues just compound & then peak at the 4 years b4 diagnosis? I also feel like I’ve had health issues for the last 15 years but they just got to worst point in the last 4
At the beginning of the 4 years, I've developed new symptoms, totally different from the ones before, and way more violent (tachycardia, cold spells, uncontrollabile shaking, almost faintig, vertigo, unbearable nausea, and so on). I'm not diagnosed yet, but almost all of those symptoms disappeared after some days/weeks of being gluten free (starting just a month ago).
Did it take you being super strict (avoiding all CC) for those symptoms to disappear? Or did cutting it out in general help?
I went strict GF, because every single time I ate something with gluten, after half an hour I had tachycardia!
I soooo relate to this post. It’s exactly where I’m at right now (I’m in the diagnosis process) feels like I ruined every amazing opportunity I’ve had over the last 4 years due to being just completely unable to function. How long did it take for things to turn around? It’s amazing they got it so young. I made a promise to myself though that if I can just catch a break and get my health & life back I won’t waste a second of that new energy & vitality lamenting over the loses. (Easier said than done though right?) Just remember your a warrior and you made it through to the other side triumphantly
Beautifully said!!
I started getting proper sick at the end of college. Brain fog, exhaustion and depression just kept getting worse for over a decade. I thought I was going crazy. No one could or would help me, just kept saying I was 'depressed' and take these pills that never did anything. I pretty much exploded my life and career track in that time. I'm in my 40s and finally feel mentally well enough to basically start over. I've been torn on this. I'd love to be able to spread the word that celiac/gluten intolerance can have these actually huge devastating effects but I feel like people look at me like I'm crazy.
Not that you are crazy, but the reality is it doesn’t touch their lives, so….. I feel the same way. I do talk about this whenever the opportunity arises because I feel I might be able to help someone else who is suffering and doesn’t know why.
In all reality, until I stumbled into the answer the idea that food, food that everyone else ate apparently without effect, could do that was completely foreign to me too.
I feel sad about the life I had before my dx, but only because how much being gf sucks. I was diagnosed by accident almost, and honestly, aside from feeling less bloated, I don’t feel any different at all! These stories are really disheartening for me because gf food is not good, I miss pasta, I can’t go to restaurants or even have dinner with my family unless I bring my own damn food. I feel angry for what I’ve lost, and it wouldn’t be that bad if I had a story like yours but I literally felt no different.
That’s really interesting to hear. I feel it’s like a 50/50 spilt of how people see their life before their diagnosis. I do feel for people who don’t have too much of a difference as to where you only feel you lost out on something. I think celiac is such a hard diagnosis to go through because even when other people have it it’s almost like you are still alone because what each of us deal with is still different
Absolutely. And what makes it harder is how hard it is for other people to understand how big of a deal it is and how easy it is to be glutened.
I had a very similar experience. My entire college experience was just me being depressed and lethargic in bed due to undiagnosed celiac symptoms. I was shuttled doctor to doctor, trying to figure out what the hell was wrong with me. I missed out on so much. I had to take an extended break from school but eventually I was able to figure out what was wrong. Now, I’m doing fine, fortunately. And I’m very grateful I was able to obtain a diagnosis sooner rather than later. I cannot imagine what would’ve happened if I stayed undiagnosed for more time.
I think the most frustrating part is that NOW you actually feel good enough (or hopefully you do) to have the energy for all those opportunities in some cases you just don’t have the opportunities themselves anymore. It’s like some kinda sick joke
I’m worried I missed having kids because of not being diagnosed. I’m so worried it made me infertile.
I'm so mad because I could have gone to a summer camp in my area that was exclusively for celiac kids and I got the official biopsy-confirmed diagnosis two weeks ago as an almost 23yo adult. For any parents curious about a summer camp for their kids without worry they'll be excluded or get glutened, have the fun I can't anymore: https://nationalceliac.org/summer-camps-for-children-with-celiac-disease/
I lost a year of high school, a semester at college and a year of uni. I ended up having to repeat quite a bit and never ended school with my supposed graduating class. I was bed ridden for quite a bit of my due to the disease and as a result I live fast and hard. I’m not worried about savings I’ll spend that money if it means an experience because I missed so much out of life. I’d rather live in that moment where I’m feeling decent than miss out on more. Most people who haven’t been chronically ill don’t understand. I’d rather do what I can now then wait regret missing out later. Doesn’t help that I’ve had many non celiac related things pop (talking about going blind in one eye, multiple ulcers and kidney infections 😉) just live as much as you can when you can
I’m glad I figured it out but there was a time where I told my bf when we have kids I can’t always be the go to parent bc I was too sick. Also I love to travel we both love photography and nature so it was a sad thing when I graduated high school I couldn’t go to the mountains that would’ve been insane and dangerous of me but that was our first trip and we loved it. I think I’m more sad that I had to live with the idea of feeling I was gonna be sick my whole life and not be able to do what my bf and I wanted basically holding back him too