My 17 year old son has just been diagnosed with having celiac disease (possibly, doing blood work again). Probably the biggest problem is school. He hurts alot of the time, back, stomach, feels nauseous, etc. I don't think it's good for him to be in school when he feels like this and he really resists going when he's feeling bad. His grades will suffer and be on his transcript. This year the school finally wrote up a 504 (?) plan, which basically means he has special needs and will attend when possible is still responsible for the work. All classes not needed for graduation credits were dropped. By next semester he should only have American Government--horray and this teacher understands. He's been gluten free for a week. I think-I found a list of no-no ingredients and have been following it. We have an appointment with the nutritionist at the hospital next week. Hope we find out we've been doing the right thing.
Like I said before, school is the biggest issue, work would be second. Last school year he was sick at least weekly, had a recurring pilonidal cyst andfinally had it surgically removed. Had his gall bladder out in April. I've read that you can have Celiac with no symptoms and then some event will bring on the symptoms, one of those events being surgery. After his gall bladder was removed he felt the best he'd felt in a long time. So he had at least a few weeks to recover some of his grades. He's always been a pretty good student but his grades from last year were BAD. I'd never seen him get a D.
A few weeks after his surgery he started getting sick again but he said this time it felt different. I think that is when he started having signs of Celiac. He'd already had many tests run because I have Crohn's and a lot of his symptoms were like mine. At first I really liked the dr. we were going to with the cyst and gall bladder problems but when he started feeling sick again the dr. just decided he was depressed. He did run some more lab work at my request and one of the things I had asked him about was gluten intolerance. I'd read an article about it and it sounded like Justin. He did test for it but only after teling me all the reasons he couldn't have it. I got a report that said his lab work was fine. We were still seeing this dr. when the school was going to do a 504 and they need medical input for that. I went and talked to the dr. again and once again he told me Justin was just depressed. I told him only when he's sick. So anyway he recomended that Justin have a mental health evaluation. I wasn't oppossed to it because then we could rule it out, not that I thought it was a problem but to prove to others. I also decided to switch drs then. I figured a dr. that didn't believe me or my son wouldn't help us get to the bottom of his problems.
I took all his medical records to the new dr. and he came up with Celiac FROM THE OLD RECORDS! I don't exactly know what they were testing but he told me 11 and below is normal and 17 and above is abnormal. Justin fell at 13. I tend to agree with new dr. if you're not normal you must be abnormal. They are running another blood test and when they drew blood yesterday he happened to be feeling really bad so maybe the bloodwork will be "off" more. The school really wants a firm diagnosis. I know the school counselor is just doing his job but I've come to dread his calls. I can't make him understand that I have no idea when his symptoms will get better. But now that there is a possible diagnosis he seems to think it will be real soon. I thought so too for the first couple of days! Silly me. Actually they're already talking about taking away the 504 for next semester---not a good idea. I'm so tired of dealing with the school. If I (and He) didn't care about what's on his transcript or about being labeled a dropout (we live in a very small town) I'd let him drop out and finish up at The Learning Center.
It's just so hard to see him sick. I will admit when all his problems first started over a year ago there were times I wasn't sure I believed him but he looked so sick I really couldn't argue with it. I even suspected drugs and or alcohol for awhile and kept a real close eye on him. I didn't really believe it but couldn't help wondering. It was also hard because my husband, Justin's father, didn't really ever seem to think he was sick either. So I just ignored that and went with my gut. He finally came around a couple of weeks ago. But is still very uninvolved. And is likely to stay that way, but my daughter (13) has really gotten into reading labels with us.
I really feel like very few people understand what I'm going through and have no idea what it is like to call the school so often and tell them Justin is sick again. Some mornings I really dread waking him up fearing it will be a "bad" day. From how he acts the night beore (quiet and keeps to himself) i can almost gage if he will be feeling good or bad the next morning although sometimes there's no warning and then it really depresses me.
Sorry this is so long, but I'm thinking you guys might understand. Some days I feel like I will go crazy for him and I too. Oh we got the results of his mental health evaluation and no surprise he's perfectly normal except in the health concerns department. Some days I just want to scream and cry but don't want him to feel guilty and he would. So I try to stay cheerful and then go take a walk but can't come back with red eyes. Some days I really wish he and I could just hibernate until he gets to feeling better. But life doesn't work like that and he really wants to graduate with his own class. Thankfully I have an understanding boss because I have missed a LOT of work gong to drs.
Again I'm sorry this is so long.