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judycolby

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About judycolby

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  1. Are you saying that m&ms are okay? I haven't read the label yet. My son was only diagnosed (actually possibly has this) last week and am trying to find a few "treats" that will make it easier.
  2. Thank you I feel better hearing that, because it may come to that. I sometimes tell him half joking half serious that if he has to be sick like this he's lucky to have me for a mother. With my Crohn's I understand being sick without all the outward signs that othrs have when they have the flu or something. I've believed him from the start and only occassionally had doubts that I kept to myself. I think maybe other people might not of believed him then he'd have anothr set of problems to think about. I just wish I could fix him I feel so bad watching him. This week he seems to be getting worse every day. Thanks, Judy
  3. I've heard of schools doing that but I'm not sure if right now he is mantally able to do the school work without his grades suffering really bad. At the moment my plan is that if it gets close to the end of the semester and he is still in bad shape I'll see if he can get incolpletes and carry the classes over to next semester. IF he was to ever start feeling good he could finish all his classes in a matter of weeks if he had to.On his functional days he is a good student. So I'm going to try not to worry too much about his graduating until we get into the spring. I just think it would be good for his emotional health if he can graduate with his class like he wants too. But I guess we'll see. There may come a day when it no longer seems an option. Judy
  4. We're in USD 315 in Kansas. I had a visit with the dr. yesterday and when I signed the permission slip for him to talk to the school he sounded like he wouldn't be recommending Justin go back to attending full time any time soon. So I think we may be okay. Now if he just felt good enough to do some of his school work. In fact the doctor told me that if gluten free doesn't have him some better in a month to bring him back in. He'd still keep him gluten free but continue to check out other things in case this isn't the problem or if there is another underlying problem. I've also started thinking of taking him off dairy. That actually sounds harder than gluten and he doesn't seem too enthused but did agree he could try it. Judy
  5. Seems like you've done a lot of research already and have a good idea what you're up against. When I was diagnosed the internet wasn't as full of info as it is today, or I just didn't know how to use it then. I was diagnosed with Crohn's about 10 years ago, thankfully! The previous years were not fun. I had no idea a body could be so sick. I had surgery about 9 years ago, at that time a portion of my colon was so enlarged I felt there was something on my lap when I sat down, but they said the opening through it was only the size of a pin head, no wonder nothing went through right. After surgery the nurse told me the portion they took cut out was the size of my husband's forearm. Unfortunately mine came back in a couple of years. It's still a struggle but have finally found a good GI. I had to beg the first one for surgery. I was the walking dead, literally sick all the time, had a full time job, 2 young kids and it was awful. I stayed with him after surgery for several years and his drug of choice was always prednisone. I had a love/hate relationship with that. But even it didn't always help. Am now on something called immuran (I believe it is an anti-rejection drug so have to have lab work all the time) and am also taking entocort. It is usually my wonder drug. It is a steroid but unlike prednisone it goes to the source of the problem. It also doesn't make me fat, hairy and sleepless. Let me know if you want to talkand I hope yours is more contollable. For an alternative check out NUCCA. I've been trying this for a few weeks, my meds weren't getting their job done and I stumbled over this and thought why not. My meds are now working still have to eat very small portions. Judy
  6. I'm fairly new to this as my son was just recently diagnosed. But before we found this out I had been taking him to a Upper Cervical Chiropractor. I would call them a chiropractic specialist. They say that the upper cervial area is where three trillion (yes that is a t) come together. Now they don't help him 100% but after most adjustments he has several VERY GOOD days. He becomes the kid I forgot I had and I love it. Of course the downside is that after he feels that good for a while I think it's almost harder when he gets to feeling crappy again. We live in Pretty unpopulated area and this dr. is 5 hrs away. Tice a month we see him at satelite clinics. If we lived closer we'd see him every week. Do a search for NUCCA if you're interested. I've also been getting treatments and my meds for Crohn's are finally able to work again. Also helping my daughter's gall bladder attacks. Yes, we also have alot of fun family medical problems. Just thought maybe this would help somebody.
  7. 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.
  8. I've never posted before, so hope I do this right. You could go to http://www.gicare.com/pated/edtgs06.htm There is a list and it tells you what ingredients to watch for on labels. They aren't all obvious. Judy
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