Anyone Else Lose Their Childhood?...

[HelpinOhio]

Im very frustrated and sad right now. Almost my entire childhood was ruined and lost because of Celiac Disease. Its like none of it ever happened. I had a mystery illness this whole time, and nobody could ever figure out what it was until I did it now. Im a guy 18 years old, and although thats young, I cant believe Im this old already. The last clear memory I have was when I was around 11 years old. For the last 7 years, if not more, I havent really been here. See, Celiac Disease has effected me badly physically and mentally. For the past 1 1/2 years Ive barely been able to leave the house. I had to leave high school and do it at home on the computer. My class is graduating in 2 months, and I wont be there with them.

Around my 12th birthday I became very sick feeling, I stopped eating for some reason. I went through a lot of tests and nothing physical came up. Supposedly I was healthy, but just thin. They couldnt find out what it was, so they put it off as depression. For the next 3 years I was in and out of counselors offices and seeing psychiatrists. I was tried on about 6 different anti-depressant/anti-anxiety medications. Everybody who knew about it assumed I was crazy and has never looked at me the same since. I was backstabbed by every member of my family. Nobody ever listened to me. This whole time I told them it wasnt depression, and I didnt need to take medication or go to counselors/psychiatrists. Through all of this I still had to go to school and do all the daily tasks. The amount of stress I experienced was ridiculous. I went to mental hospitals twice. Everyone agreed that the medication and counselors werent helping me so I stopped going. I started going to high school. Still felt very sick. Things continued to get worse. About 1 1/2 years ago I went through a series of frightening panic attacks, and all new symptoms. My whole body started hurting badly. I couldnt concentrate anymore. It was so bad I had to leave high school. 1 year ago I went through a whole new series of tests, and still nothing came up other than constipation and low vitamin D. Finally after all this time, it was finally mentioned that my mom had celiac disease. I stopped eating most gluten and started to feel better. I took the blood tests, but they came back negative. Most likely because I wasnt eating gluten. I have been researching different diseases extensively, taking it in my own hands to figure out whats wrong with me since then.

I finally came to the conclusion that it is Celiac Disease. I have an appointment in a few days. Hopefully within 2 months I should have all the tests done and started on a gluten free diet. While most people will talk about their childhood and teenage years with stories of boy/girlfriends, parties, school events, accomplishments, all I have to talk about is how horrible it was, how I dont remember much, and how sick I was. I am happy that all this bad stuff is about to be over with, but I can never get those precious years back. I lost my childhood because of something that wasnt even my fault. Now Im 18, supposedly an adult, and about to be thrown into an adult world that Im not prepared for.

Anyone with a similar story?

Anyways thanks for reading/listening. Please reply if you have the chance.

[OptimisticMom42]

Anyone with a similar story?

Anyways thanks for reading/listening. Please reply if you have the chance.

[MNBeth]

I am so sorry for what you've suffered for all those years. My own son, now 17, went through some similar things, though not for as many years. But he definitely had the very scary panic attacks and mysterious stomach and more generalized pain. He was sick for almost two years, and while he did manage to keep going with school, it was a very difficult time for all of us. We also have celiac in the family, and when my son's blood tests were negative, we weren't convinced. We ended up ordering our own tests through Enterolab, and between those results and positive dietary response, it became very evident that he needed to be off gluten.

Will you mind if I encourage you to try not to focus your attention on the years you've "lost?" It is true that your teenage experience has not been typical, but in many ways we learn and grow more through difficulties than through ease and comfort. I suspect that in many ways you will be more ready, not less, for the challenges of adulthood than will those who have not been forced to learn to persevere through hardship.

When you think of all you've suffered, try to think - "and I MADE IT THROUGH!" Then try to look forward to all that you will now be able to do with your life. Celebrate, if you can, your release from the chains of your illness. I know it is not always easy, and do not mean to imply that it is. But I hate to see you miss out on the happiness that is more available to you now by dwelling on a past you cannot change.

Set your face forward and hope!

[ang1e0251]

I'm so sorry you've suffered so much and missed a lot of childhood milestones. All I have to say is that this eighteen years is finally over and now you can spend the next 80 years feeling healthy and in control. It's going to be great!! Maybe you can think of your start on the gluten-free diet your "new" birthday!!

[loxleynew]

I cannot say I lost my teenage years however I can say I lost my college years. I was lucky in a sense that throughout high school my only symptom was fatigue. I could manage that and just slept a lot. However during college I started getting all kinda of symptoms the longer college went on. Eventually I got what you described as severe panic attacks. Anytime someone invited me somewhere I had to say no unless it involved just sitting around. Luckily throughout this my parents have been supportive and i'm sorry if yours have not. Especially since your mom has celiac!

Don't focus on the past, but the future. If your friends really didn't believe you and left you then go find real friends. Most people don't understand true pain or feeling sick all the time so they cannot understand people like us. Focus on the future and hopefully college or your next job will be more fulfilling.

[Bucsfan11]

Hey!! I understand exactly what you are going through! I am currently 22 years old but had stomach problems all through high school and most of college. I was diagnossed when I was 18 so I can see where you are comming from, oh and I am also a guy. I felt that I missed out on a lot of fun experiences, but you need to look into the future. I mean you are 18 so you will have plenty of time to enjoy life. Just hang in there man!!!!

[HelpinOhio]

Thank you all for the replys. I feel a little bit better now after hearing these.

They say the average time for having Celiac Disease before being diagnosed is 11 years, so Im actually less than that. Im glad I found it this early in my life instead of having to deal with all of this until Im a lot older. Im still a little frustrated that I didnt know about this 6 years ago, but theres nothing that I can do about that and I just have to move on.

Another thing that Ill say is Im glad that how I felt is not how your supposed to feel, and Im glad that all of this bad stuff is about to be over. Ive been living in pain for over 6 years, Im curious to see how normal feels. Anyways thanks for the replys and keem them coming. Thank you.

[mushroom]

Hi to you. I too am sorry to hear that you suffered so much through your childhood and do not have any happy memories of it. It does not seem fair when you see how others around you are enjoying themselves.

It may help a little bit to know that even when you are comparatively healthy, childhood can still be something to be suffered through. We do not all have the idyllic childhood of friends, happy families and happy memories. I, too, had a "rebirth" at about 18, and threw off the shackles of a miserable childhood. Up to that point I had often thought of suicide as the way out of what seemed unbearable. I was lucky to have someone to show me that there could be a different path, and after I left home things improved immeasurably. It wasn't until I was about 24 that I felt whole again (had not felt this way since I was a small child).

So while you can never recapture the years you have lost, you can make the most of the healthy ones that lie ahead of you. In fact it is all the more important that you do. While you may suffer still from the things you have lost, it won't be long before you can put them behind you and move on to being the NEW you!

Good luck and God speed.

[OptimisticMom42]

Good Morning HelpinOhio,

I'm glad to hear that you are feeling better. I have to agree with Mushroom and the others who have posted. A lot of people have had sucky childhoods. I think the whole bright and shiny, full of giggles childhood is a bit of a myth. Childhood is a time of powerlessness. Adulthood is much better. You are in control. You can choose to leave or stay. You can choose to fight or walk away. The folks like yourself who come to these websites have choosen to fight. We want things to be as good as we can make them. It's Spring! Smile, take deep breath and let it goooooo.

Take care,

OptimisticMom42

[HelpinOhio]

I have to remind everyone that Im still going through the bad part right now. Ive been eating +4 pieces of bread daily along with whatever gluten I normally eat for over the past month, and I feel horrible. Ive also been eating gluten regularly for the past maybe 8 months. Im still going through this, but it should be over soon enough. Ive had bad symptoms from Celiac Disease nearly 7 years, I can wait 2 months to get the diagnosis. I will say that there have been many times in the last month that I considered just doing the diet and forgetting the diagnosis because of how sick I felt mentally and physically, but Im proud of myself that Ive gotten this far.

I know that most peoples childhoods arent perfect. I also know that even if I didnt have Celiac Disease my childhood still wouldnt have been perfect. But at least I would have had a childhood, and been there to experience all of it. Thats the part Im talking about. There is nothing I can do about that though, after Im better Ill try my best to make up for all of that lost time. There have been some positives from my experience though. I know what true pain and misery is, so I have more empathy for other people who are going through it. I will also never take being healthy for granted again in my life. Healthy people dont know how good they have it. Hopefully I will be one of those healthy people soon. A few other things also, Im trying to identify all the positives from the experience.

Anyways again thanks for the replys.

[Generic]

I was a kid who suffered from illnessess too. However, I was sick my whole life until I was diagnosed at the age of 13 and a half. And even still it took me about 3 years to start feeling and looking healthy. The short of it... I was expelled from school for missing too many days. The school finally gave me a home tutor when it was too late into the school year to do any good.

I litterally went down to the children's hospital once a week to have different tests ran. On more than one occassion the test being ran included a once an hour blood draw, for 6 hours straight. During the year long testing, they had me seeing a shrink. I was diagnosed with schoolaphobia. (My mom didn't believe it).

My mom suggested Celiac before they started the testing, but she was brushed off because it was so "rare". When they had ran through all the other tests and still didn't have a diagnosis they decided that testing for celiac would be the last test they would do before they gave up. At this point my body was shutting down.

They didn't have a blood test back then. So they did an endo with a camera first. Next they did an endo w/ the camera and took a sample. Supposedly the results came back "inconclusive". But my mom had me start the gluten-free diet anyway. Thank gawd for my mom. Last year I requested a copy of those medical records. My villi was completely gone in patches. But because it wasn't gone every where, it was considered inconclusive.

That was 21 years ago. I was angry for years because I suffered for so long. I finally let go of the anger, because I decided one day that it was a waste of time holding onto it. One day you will get to that point. But it won't happen until you are ready. Good or bad, it made me who I am today. Hang in there, it will get better.

[DingoGirl]

I feel your pain.

I was diagnosed at 44, and it seems like it was.......beyond repair. I have been depressed, and even suicidally so, since earliest memory.....the brain fog and depression nearly consumed my life and...the anxiety? My God...I don't even know how I made it through. I was severely bipolar, lost jobs, relationships, hope, everything. I spend much of my life now lamenting the past and wishing I'd known sooner. It does suck

I am sooo happy and hopeful for you that you have found your diagnosis at your young age. You have a FULL LIFE ahead of you. Hang in there, do your tests, and then stick to a strict gluten-free and healthy diet for the rest of your life.

This way, you can change your future.

[HelpinOhio]

Although the noticeably bad symptoms started at age 12, and the worst at 16, Im considering that Ive had symptoms of Celiac Disease my entire life. Now that I think about it, I was never really normal or all the way healthy. There was always something just a little off about me my whole life and others noticed it. It was bearable until I was 12, but from then on my life has been completely ruined. For the last year or two Ive barely been able to leave the house.

Anyways to everybody, I have my first appointment with a GI Specialist later today. Wish me luck. If everything goes like I hope, Ill have the tests done within 2 weeks, and Ill have the results back within 1 month or so. Then within 2 months I should be on a gluten free diet. I should continuously get better until Im at near 100% in 8 months or so. Ooh this all so exciting. Im a little anxious, I havent been healthy, there, or really normal for as long as I can remember. Hopefully everything goes as I hope it will. Good luck to all of you, and again thanks for the replys. This could be a life changing point in my life and this website and people on here have really helped, thanks.

[cmom]

I sincerely hope you get the answers you need. A bit of advice - after diagnosis, be TOTALLY gluten free. Don't be like I was and cheat here and there. It took me a couple additional years to feel as good as I do now because of it.

[mushroom]

This could be a life changing point in my life and this website and people on here have really helped, thanks.

A whole new world could be opening up for you. Good luck on finding the "new" you!

[ianm]

Your's is a familiar story. I went through all of that but was twice your age when I found out what was wrong. The first 36 years of my life are like a big black hole of nothiness. Now that you know what is wrong I can assure you that things will get better, much better. My life now is like nothing I could have ever imagined and it just keeps getting better.

[FarmCat]

If everything goes like I hope, Ill have the tests done within 2 weeks, and Ill have the results back within 1 month or so. Then within 2 months I should be on a gluten free diet.

Discuss this with your doctor, but once the testing is done I don't see any reason to wait for the results before going gluten-free. Maybe you can feel better a little sooner

[Tabbiekatz]

Happy Birthday! Now you can start looking forward to a future that is in your hands and not a disease like Celiac. You now have a new start in life. Yes, your childhood has a lot to do with what you will be like in the near future, but only you have the RIGHT to change it now.

I actually have been diagnosed with adjustment disorder with borderline personality tendencies. It wasn't a choice. I also wound up in a mental hospital because of being suicidal, and I didn't know what I was doing. Amazing how your diet messes with everything that is you. I was self diagnosed 5 months ago, and I am still learning who I am. Not to mention the physical changes in my body, I've also noticed that the mental changes I am going through are amazing. I can concentrate more, reason much more than I used to, I'm not forgetting things like I did (I used to take stock in sticky notes..lol), bills are paid on time and I'm not spending as much on junk as I used to. I'm also off of all medication that I was on (zoloft and lisinopril-high blood pressure). I've been sick since I was born and went to many doctors and everyone told me I had IBS. The skin rashes I had I was told that "all large people get them because of heat...here's a cream to treat it." Not happy at all. It took 20 years of doctors and I found this on my own. They go to school for 8 years plus and spend hundreds of thousands of dollars on an education that does nothing for their patients.

Look to the future. I know it is hard now, but just take it one day at a time. Things will change, and we will always be here for you.

[revenant]

This forum really hits the nail on the head

I'm sure there are many who feel like they have lost their childhood to this disease... I feel for all of you and can relate!

My parents claim that I had my happy times as a kid but the thing is that I was so quiet and secretive as a child that I simply did not tell them of the pain I was in

I also thought it was normal and learned to hide it all

I had my good moments in childhood, the only problem with that is that these good moments were gluten highs where I felt like I was on heroin and thus everything felt "comfy" and bright.

I suffered depression from 11 years old and severe and debilitating fatigue that left me crying every day and night, along with an irrepressible rage after the age of 13

But the thing that swept away my childhood the most was the foggy mindedness, and a state of having no feelings, no opinions, and no realization that I existed.

I had autistic personality traits that I swear would have been classified as autism if I were tested... I would stare at a wall with my bright red swollen lips open and chant things, tapping my food and rocking back and forth, keeping lollipops that were pretty colours and staring into them blankly... Avoiding all social situations and spending my childhood hiding in technology and games.

I spent my childhood frightened of the visual and auditory distortion I would have, and would often hide in my pillow at night...

I felt like a doll that just stared blankly and uncomfortably thorugh my childhood, with no personality and no being. I felt dead.

Also, I can't remember most of my childhood. The memory problems caused by gluten have left me with a forgotten past mainly

But I would say the most important factor that makes me feel like my childhood was stolen is that I can't ever remember FEELING as a child. I never FELT anything, except for bursts of random, foggy, and meaningless despair. I was inhuman, dead inside, I was detached, and never realized that I was a person. And even that was through a mist. It is important to grieve the loss of our childhood, but also remember that we can still live the certain aspects of our childhood that we missed, the careless attitude, the happiness we can finally reach...

[mushroom]

Ah, the loss of a childhood. It is so real, that childhood, so tangible, and yet it just exists out there in the fog somewhere. Sometimes the fog clears and we are able to glimpse the good times, the bad times, and the times where we just existed... Now not all of this is related to gluten in most families; a lot of it has to do with how our families reacted to us and how we reacted to our families. It has to do with our degree of knowledge, self-knowledge, medical knowledge and our intelligence, and our family's awareness of these things and their level of understanding and intelligence. We learn that our reactions are abnormal but that we ourselves should be normal. because there is 'nothing wrong with us', or, if we are feeling abnormal, then there is 'really something wrong with us'. and that is not acceptable. So we adapt to try to fit in. We be who we are not, because that is what we 'should' be and we end up with no idea who we are.

We go back and try to find our childhood, and it is hidden behind illness, anger, distrust, misunderstanding - nowhere is there acceptance of what is and who we are, because what we are is not acceptable.. Your gluten symptoms were and are much more severe than mine, but I sense that your family problems were quite similar to mine.

The feeling problems have warped my entire life until I realized what they were, the repression and the inability and impertinence of expressing feelings and emotions,. I have a feeling, revenant, that our lives growing up were very similar. I have receovered a lot of my memories and retrieved and relived the emotions as part of the healing process, and can look back now and pick out the happy times and block out the despair and hopelessness, the agonies of the cramping and diarrhea in high school, the rejection by family and classmates, the rituals I used to perform to keep me safe through the day, but most of all I have forgiven all those who treated me badly because they did not know any better. And I remember with tender fondness those who looked at me as I looked at myself, and not how someone else characterized me. I remember the kindnesses and the hope that they gave me, and I hope you will reach this too - it sounds like you are most of the way there already. The despair and the lack of feeling is a way of coping with something that cannot be coped with, the deadness, the detachment because you could not afford to care, to hope or dream.

But now you understand it all. It is important to go back and relive it, as painful as it may be, to recapture what was good about your childhood, to understand where it went wrong and why it went wrong, to go back and replace it with the way it should have been if everyone knew what they should have known, and then to let yourself experience the feeling of how that would have been, to fully accept yourself, your feelings, your validation as a human being. Yes, you can grieve the loss of the actual experience, but you can recreate it in your imagination. I am still doing this in my ripe old age, mainly in my very vivid dreams now, where I combine experiences, people and locations in a random mix, a strange experience, and often the dreams are full of drama, but I am not afraid any more and I feel in control of the situation and I rearrange my life in very interesting ways in my dreams.

I can look back on my childhood now and remember my long walks with my cat through the hills, jumping over the icy, raging creek without a care in the world, actually sitting on my dad's knee while he read us Jack and the Beanstalk, stepping on bumblebees and being stung on the lawn, kissing my lamb 'Pouncer' whom I adored, and forgetting the miseries of crying oneself to sleep, of contemplating suicide, or rejection and anger and hopelessness. I have regained all these good memories by rejecting the bad ones and I hope that as you cast out the negatives some of the positives of your childhood can return for you too.

[txplowgirl]

I can definetly relate. From the age of 7 I was constantly miserable. I also can't remember a lot of my childhood. I have had a lot of cousins come up to me and ask if I remember certain things and I just can't no matter how hard remmeber them. School was really bad for me because I had social anxiety disorder with depression. It wasn't until after I went gluten free at the age of 44 that I started getting better.

There is hope and remember even eating as much gluten as you are, you still could come back negative on the tests. If you do, go gluten free anyway. You can still have an intolerance to gluten and it can cause just as bad a reaction as if you were Celiac.

Hang in there.

[quincy]

I can definetly relate. From the age of 7 I was constantly miserable. I also can't remember a lot of my childhood. I have had a lot of cousins come up to me and ask if I remember certain things and I just can't no matter how hard remmeber them. School was really bad for me because I had social anxiety disorder with depression. It wasn't until after I went gluten free at the age of 44 that I started getting better.

There is hope and remember even eating as much gluten as you are, you still could come back negative on the tests. If you do, go gluten free anyway. You can still have an intolerance to gluten and it can cause just as bad a reaction as if you were Celiac.

Hang in there.

Yeah, I found out last year at age 48. talk about mourning a loss. After the initial shock of hearing Celiac for the first time and learning what it does to you, it all kind of came rushing at me at once. Everything suddenly made sense but it was too late to go back and live my life again without gluten...

I spent all of my childhood sick and skinny and the doctors just kept telling my mother that I was a hypochondriac. Night terrors, irrational fears, canker sores, awful cramps, tingling in my legs and arms just to name a few. To go all the way back into infancy, meningitis from chronic ear infections which should have ended me then.

The best thing is to get better, that is the only choice, either that or cry in my gluten free chicken broth... oh well. Hang in there everyone...and heal well.

[revenant]

Wow, Neroli.. That is your name right? That is a beautiful name...

Reading that post was simply beautiful.

"We learn that our reactions are abnormal but that we ourselves should be normal. because there is 'nothing wrong with us', or, if we are feeling abnormal, then there is 'really something wrong with us'. and that is not acceptable. So we adapt to try to fit in. We be who we are not, because that is what we 'should' be and we end up with no idea who we are."

That paragraph in particular gave me a whole new set of revelations.. Thank you!

You have shown me a new approach to this, and yes it does in fact sound as if our childhoods were very similar... Your description, it is worth looking back on that post in the future.

I'm so glad you have reached this point, of being able to look back and clearly feel the beautiful moments of your childhood... Thank you for sharing your experiences and supplying such a beautiful and so deeply understanding read!... You have brought me so much reassurance, I feel I too am beginning to be able to see some of the lovely moments in my past... They are foggy now, but I believe, like you, they can clear up. I didn't know anybody else felt so similarly through childhood. The peace you have within you has brought a smile to my face!

[revenant]

I can definetly relate. From the age of 7 I was constantly miserable. I also can't remember a lot of my childhood. I have had a lot of cousins come up to me and ask if I remember certain things and I just can't no matter how hard remmeber them. School was really bad for me because I had social anxiety disorder with depression. It wasn't until after I went gluten free at the age of 44 that I started getting better.

There is hope and remember even eating as much gluten as you are, you still could come back negative on the tests. If you do, go gluten free anyway. You can still have an intolerance to gluten and it can cause just as bad a reaction as if you were Celiac.

Hang in there.

Hey, this also sounds very similar.

I'm so, so glad to hear that things have gotten better for you with your depression/social anxiety!

A year ago I had intense social anxiety/depression (It was when the anxiety in particular was at it's worst) and I dropped out of school.. The memory is a big issue for me also.

Over this past month, my social anxiety has been dramatically diminished, it has been about 2-3 months off of gluten. The gluten brought it out physically, the mental insecurities that were apart of the anxiety are still there, but I now have the ability to choose whether or not I want to respond to them.

[mushroom]

Revenant, I am glad that my post, from my heart, struck some responsive chords in you. It took me such a long time to realize that we must let go of the past, forgive those who caused our pain because mostly they did not intend to do so, and find the joy and happiness that was there in small measure but overwhelmed by all the negatives. For me, necessarily, these mostly involved things I did on my own, but I also now have crazy memories of things like gathering mushrooms in a field where my dad had unknown to us put our bull, and being chased across the field with my brother in a pushchair, mushrooms flying in all directions as we dashed madly for the fence (that one's pretty indelible!) and a little one of crawling across a field in a howling headwind gale when I was about 5, pulling myself from tussock to tussock because I could not stand up, to get to the henhouse to feed them and lock them in for the night. I have been talking to my sisters and recapturing things from my past and putting together for myself a life history, and my dreams seem to recreate the feelings that go with those experiences, or the things I should have felt if I did not perceive them correctly.

Keep that smile on your face; you are young, you are very bright, you are compassionate and thoughtful, and the future is rosy Peace and blessings.