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AVR1962

Reflecting Now, Do You Wonder If You Were Ever Healthy?

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Since my diagnosis, the more I read the more I connect to my childhood and feel I probably was born with this and it the reason for alot of problems I endured. I can see why it is considered a silent killer.

I am fair skinned and have been told all my life that fair skinned people just seem to have more issues. Even back as a first grader I had cold sores, mono twice, awful acne issues, peeling nails. I would get achy in my bones and I was told it was from growing. When it came to athletics I would get sick (usually flu) and I could not progress like the others, lots of bloody nose issues, continual strep throat issues, started having kidney issues in my 20's. Lifelong anemia which was never investigated partly due to the fact I had no health insurance until 20 years ago. Problems with depression and thought I had a speach impediment because at times my speach would get all messed up which is something I have dealt with since childhood but there was never a connection. Everything compounded itself by the time I was in my mid 40's and at 48 realized I was sitting on a landmind.

Now I realize I don't know what it is like to be "healthy." I look forward to seeing what that feels like!

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Yes, I know what you are saying. I wish so much that I'd known sooner and spared myself so much physical and mental problems. I had a lot of spatial issues and dizziness--it was a nightmare learning to drive and learning to read. Just things like that.... I try not to think "what if I'd known about gluten as a child..." I try. It's no good thinking that way.

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I wonder if I was ever healthy. Milk allergy and excema as a baby, asthma diagnosed at age two, mouth ulcers for as long as I can remember, coordination issues, anxiety. I remember always wishing I was a sporty kid, I had the inclination mentally, but could never follow through because I was so uncoordinated and got tired easily. I thought I was just unfit.

I also had recurrent nightmares and growing pains which left me sobbing.

I've had severe anaemia since I was 15. And it goes on...

I wonder now whether all the times I felt healthy (and I felt healthy most of the time) whether I was. Maybe how I feel everyday is just my 'normal' and I don't know any different. It's a sad thought. I had a good childhood. It was happy. Maybe it could have been amazing.

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I think mine was triggered by my pregnancy at 35 so I really did have a history of being pretty healthy. My 8 year old daughter however, would have had your childhood had I not realized what was going on with her. She was chronically sick. Strep all the time (I've never had strep once, nor has her dad), high fevers that would spike to 105 degrees and not come down with advil or tylenol, colds all the time, canker sores, cold sores, poor concentration. At the beginning of second grade right before we diagnosed her, her class had to draw a picture of their favorite place in the world. My daughter drew a picture of our brown couch that she liked to doze on and watch t.v. I was mortified.

So, happy to have a new kid and immensely thankful that that did not end up being her entire childhood and adolescence.

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Wow! We have all been thru so much. It feels good to be a with a group that knows what we each have had to deal with and I think it is so great that we are learning and getting the support from one another than is so needed.

Srall, I think it is grat that you were able to identify with your child's needs and get her the help she needed, that is just awesome!

Tinklestars, you mentioned that you had always had a an issue with balance and I am curious if it has finally improved?

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I think about this a lot, actually. I'm sure 99% of my health problems were gluten-related. By 6 months old I was having asthma attacks. My childhood pictured make me look like I had rickets but no one thought a fat baby who drank formula mixed with full fat milk could have nutritional deficiencies. It worsened from there. I made it through school, made it on my own, but life was always a constant struggle. I was always sick and weak and unwell.

I'm in my 30s now, and I feel like a new person. I've only been gluten-free for 3 months and I have a whole new outlook on life. I'm aware of how lucky I am to be were I'm at now, and I'm hopefull I'll improve plenty more, but I've got a lot of feelings when it comes to how the medical system has failed me (us!), and how our wheat-centric culture is making SO MANY people so very sick.

It really IS nice to see improvements I've never known could exist. Some things will never improve (I blame the severity of my back condition on malnourishment from celiac), but plenty more things have improved and continue to improve. I really got lucky I have something so easily treated (no dangerous drugs, no painful treatments), but it'd sure be a lot easier if the trigger weren't such an integral part of our society. ;)

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Tinklestars, you mentioned that you had always had a an issue with balance and I am curious if it has finally improved?

I've learned to get by, lol! I've only been gluten free for a couple of weeks so I'll let you know if I see an improvement.

I wear flat shoes now because I was notorious for falling off my shoes when I wear heels or anything with a wedge. I've rolled my ankle so many times doing that.

I used to cut myself often with knives when I was cooking. I still do it occasionally so am really careful in the kitchen. My hubby watches me like a hawk :lol:

But oddly enough sometimes I'm okay and my balance and coordination is quite good. Then I get a reality check and realise it was a temporary reprieve, lol!

It's kinda embarrassing to play catch with my kids and have trouble catching the ball though :unsure:

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So glad to hear that you all found out what was wrong with your little one! We caught my son's at about that age, but his sister was already 11 by that point. I think she's had it her entire life, too.

It's such a balance, at this point. I'm grateful we caught it when we did, but so, so wish we'd caught it earlier.

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I think I must have had low level celiac my whole life. I remember stories my mom has told me about watching me learn to walk, and even thereafter. She'd say I'd fall down 10 times in the space of 5 minutes! Methinks early gluten ataxia?

I had terrible migraines from the time I was ten. The very first one I remember was so bad I had to lay down in the back seat of the car, and I refused to get out when we got to dinner because it hurt so bad.

I got what I believe to be DH right about 11 or 12 years of age. I always thought it was just acne...it waxes and wanes in severity, but the distinctive purple scarring is there. Doctors always blamed me for having poor hygiene even though I washed every day, sometimes twice.

I've had awful depression and anxiety since always. It felt like everything hurt, down to the marrow. Much of this was back in the 80's and early 90's. There isn't the conventional awareness of celiac there is now.

On one hand, yeah,I feel a little failed by the medical community. On the other...this would have been a tricky puzzle indeed. Maybe a Dr. House could have solved it, but not your average G.P.

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I think about this a lot, actually. I'm sure 99% of my health problems were gluten-related. By 6 months old I was having asthma attacks. My childhood pictured make me look like I had rickets but no one thought a fat baby who drank formula mixed with full fat milk could have nutritional deficiencies. It worsened from there. I made it through school, made it on my own, but life was always a constant struggle. I was always sick and weak and unwell.

I'm in my 30s now, and I feel like a new person. I've only been gluten-free for 3 months and I have a whole new outlook on life. I'm aware of how lucky I am to be were I'm at now, and I'm hopefull I'll improve plenty more, but I've got a lot of feelings when it comes to how the medical system has failed me (us!), and how our wheat-centric culture is making SO MANY people so very sick.

It really IS nice to see improvements I've never known could exist. Some things will never improve (I blame the severity of my back condition on malnourishment from celiac), but plenty more things have improved and continue to improve. I really got lucky I have something so easily treated (no dangerous drugs, no painful treatments), but it'd sure be a lot easier if the trigger weren't such an integral part of our society. ;)

I was reading an article by Dr Oz that said that something like 80% of people are gluten intolerant and a majority do not even realize it. I see people now eating a burger on a bun and my thoughts are that they could very easily being killing themselves and are totally unaware. So yes, in that sense, we are the lucky ones!

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I've learned to get by, lol! I've only been gluten free for a couple of weeks so I'll let you know if I see an improvement.

I wear flat shoes now because I was notorious for falling off my shoes when I wear heels or anything with a wedge. I've rolled my ankle so many times doing that.

I used to cut myself often with knives when I was cooking. I still do it occasionally so am really careful in the kitchen. My hubby watches me like a hawk :lol:

But oddly enough sometimes I'm okay and my balance and coordination is quite good. Then I get a reality check and realise it was a temporary reprieve, lol!

It's kinda embarrassing to play catch with my kids and have trouble catching the ball though :unsure:

It is a bit crazy isn't it. I sometimes feel that if I were pulled over for sobriety testing (the part that they make you walk) I would probably fail without drinking!

I am 4 months into a gluten-free diet. Have made alot of mistakes and have had to do alot of reading. My balance is getting better but not all the way yet. I can actually wash my hair in the sink now without feeling off balance but crouching the other day working in the yard I fell over. When I walk is probably where I notice it the most as it feels kind of like I am on an elevator with every step if I look in the distance, almost like my eys can't adjust to the up and down movement so I have to keep my eyes closer in rather than looking out too far.

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I think I must have had low level celiac my whole life. I remember stories my mom has told me about watching me learn to walk, and even thereafter. She'd say I'd fall down 10 times in the space of 5 minutes! Methinks early gluten ataxia?

I had terrible migraines from the time I was ten. The very first one I remember was so bad I had to lay down in the back seat of the car, and I refused to get out when we got to dinner because it hurt so bad.

I got what I believe to be DH right about 11 or 12 years of age. I always thought it was just acne...it waxes and wanes in severity, but the distinctive purple scarring is there. Doctors always blamed me for having poor hygiene even though I washed every day, sometimes twice.

I've had awful depression and anxiety since always. It felt like everything hurt, down to the marrow. Much of this was back in the 80's and early 90's. There isn't the conventional awareness of celiac there is now.

On one hand, yeah,I feel a little failed by the medical community. On the other...this would have been a tricky puzzle indeed. Maybe a Dr. House could have solved it, but not your average G.P.

Wow! Migraines at 10, goodness I can't imagine. They are so awful. They are hard enough for adults. Glad you got the help!

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My issues were mainly mental health issues. I can remember not liking to go into shops from being so young (maybe 3/4) and noisy places have always upset me. Apparently I was a difficult child who used to have tantrums in public places often, and my parents didn't know how to deal with me. They considered getting me psychological help, but didn't want to 'label' me, if you like.

I guess I was this bright kid who always felt on the outside of everything - something that has continued through my adult life, but worsening to suicidal depression, mania, agoraphobia, eating disorders.

The only physical symptoms I had were constipation issues and psoriasis/eczema.

As an adult I can put into words the feelings I had as a child. Noise overwhelmed me. Everything felt unreal. I found it hard to keep my emotions in check. I felt antsy and on edge the majority of the time.

All of this improved when I removed gluten.

I have spent time in and out of mental units for depression/mania etc during the past ten years, and all I can think is 'what a waste'. It does no good to think like that.

It's only the last three or four years that it hit me physically with a sense of real fatigue and apathy hitting me. Consequently my fitness levels have really dropped and my exercise tolerance is still low.

It only really hit home how much of a problem gluten is when I did a challenge after a year of gluten free. My mood hit the floor, physically I was a mess and I am still not fully back on track although I am improving slowly. All of the problems I had previously came back tenfold during that challenge (and new ones added)

The only thing that really bothers me is that not one medical person suggested that it could be a food issue, in all of that time. I had to find that out myself. It bothers me that countless others are going through the same thing and worse.

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I've learned to get by, lol! I've only been gluten free for a couple of weeks so I'll let you know if I see an improvement.

I wear flat shoes now because I was notorious for falling off my shoes when I wear heels or anything with a wedge. I've rolled my ankle so many times doing that.

I used to cut myself often with knives when I was cooking. I still do it occasionally so am really careful in the kitchen. My hubby watches me like a hawk :lol:

But oddly enough sometimes I'm okay and my balance and coordination is quite good. Then I get a reality check and realise it was a temporary reprieve, lol!

It's kinda embarrassing to play catch with my kids and have trouble catching the ball though :unsure:

omgosh - i could have written this post! i have a closet full of shoes w/heels and i have only been wearing flats. had to wear heels to my daughter's wedding and it was outdoors and i could. not. walk. lucky i brought flats to change into. all the photos look like i'm falling :( because i was :( chin up, though, there is hope! actually wore heels to church sunday and ran in them because i was late!! didn't even think about it all of a sudden i was running!!

husband does all the knife wielding in the kitchen - also, when i accidently cut myself, it took for ever to heal because of malabsorbtion i guess? my skin was so terrible. i'm hoping for more improvement...

still can't throw the damb ball, though :D but it's been a minute... wacked the grandson in the head my last attempt. he won't play with me now ;) LOL

i *heart* you guys. 'regular' people just think i'm an unimaginable spaz. i know there is a graceful person under here somewhere.

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I dont think my son has ever been healthy. He is 3 1/2 and has been suffering from migraines, asthma, restricted growth, borderline anemia, sleep disordered breathing, chronic infections, nose bleeds, behavioral issues, diarrhea and vomiting his entire life. It has been a nightmare. We are two weeks and 2 days into the gluten free diet and he is a totally new kid. I remember looking at him when he was younger and knowing that this was not my child. I could almost see him stuck inside himself, if that makes sense. It was like his life was clouded by all of the illness that he could not be seen. He is so happy and sleeping well and has not had a migraine since we started this after having two per week. It is so hard, though, for me to do food things with him and he just doesnt understand it yet, so hopefully he will soon! I am so thankful we caught it early and I am sorry for those of you who have dealt with ill health your entire lives.

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    • Thank you - I had my endoscopy today and the doctor said he didn't see the telltale signs of celiac but he did biopsy. There were a number of other things he noted, like a polyp found in the fundus, and my stomach was very inflamed.       He said to start a gluten free diet right away anyway.  It is hard not to get ahead of myself and wonder about the results and if they come back negative.   
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      The researchers further observed that Psa produced gluten sequences that initiated inflammation in celiac patients. Lactobacillus was used to detoxify the gluten.

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