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LadyCyclist87

Recovering Celiacs With Demanding Lives

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Curious question...are there any individuals working a very demanding work environment (or going to school to work) that are at the same time trying to recover from celiac disease (as well as other intolerances)? I would really just like to sound off some thoughts and meet other nurses with this condition.

I'm a nursing student myself (graduating in May 2010), and some days I feel like I have such a hard time trying to stay focused with the brain fog, or dealing with the constant fatigued feeling, headaches, etc. And no, I am not eating gluten...I feel like I'm still recovering, but of course most of us know that the days of recovering (shall we call it a "gluten detox" on our bodies?) are some of the hardest. I know that I'm physically present in class and clinicals, but at the same time it feels like I'm delusional. While I'm sitting there looking "fine" to other classmates, I'm a train wreck on the inside trying to fight against my body so that I can just learn the material that I need to. It takes me forever to study (which I hate, but I do what I have to), and on top of that I have other personal family issues that I'm trying to work out. On the "bad" days, on top of feeling crappy I put up with feeling like a complete ditz when my closest friends keep asking me, "are you okay?" or seem to have trouble following my train of thought. I'm soooo scared about graduating and "going out into the real world" in just 8 months from now. It's not that I'm nervous about not knowing the material...I'm more nervous about how long my body is going to play games with me! Some days I'm fine, and many others I'm not; hopefully that's just part of the recovery process. Just praying that I'll be "fully recovered" by the time I graduate!! It's only been a full week ago since I seriously started evaluating EVERY SINGLE thing I've been eating or drinking, and knowing that it's gluten, caesin, yeast, and egg free.

So that's my story. I'm not looking for advice or suggestions; I just wanted to be open and honest about how things are going with me. I want to hear about your situation and how you're coping with being in recovery on top of working in the profession, going to school, etc. Vent any frustrations (if you have any). For those of us in the field of healthcare, we can mutually agree that we decided to work/go to school at least for the partial degree of interacting and helping others with their own ailments. For some of us, maybe our diagnosis and own battle with our bodies has encouraged us to hold a greater appreciation for others who are sick or suffering (it has for me, anyway).

Anyway, if you're interested in sharing anything or just talking about things that you KNOW others wouldn't understand (unless they've been where we've been), I invite you to just sound off. It would be so interesting for me to hear anything you say...and comforting to know that I'm not alone in this (which I feel like I sometimes am).

~ LadyC

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I hear you. I'm a doctoral student, and I was diagnosed in May. Last semester was the hardest semester I've had since starting college. I couldn't focus, I couldn't stay calm when the work piled up, I couldn't stay awake in class or at night when I needed to be working. This semester has just started, but so far I feel better about it, like I'll be able to stay on top of the work more and not freak out. I hope that by thinking positively about it, at least, and thanks to feeling better, this won't be such a panicky time.

Best of luck to you!

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I am an RN in a Long term care facility. I know how you are feeling. I was diagnosed in Jan. I have learned to take my own lunch to work so I don't have to deal with the cafeteria. Some days it takes a lot of effort to stay focused and I know I have too. Just take it one day at a time. I know that you are scared about going out in to the world a working but it gets easier as time goes by. I would love to keep in touch with you. I know how hard the classes and clincals can be. I am here for you. Good luck.

DakotaRN

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Hello all! I am nursing student as well, currently am a PCT but am taking some time off of school for my RN. My mom has celiac, whereas I am just having a sensitivity to gluten. I eat gluten free though, in hopes of avoiding getting celiac. My mom was sick while I was in school, and it was really bad. My job wouldn't let me take a leave of absence so I switched to working overnight and taking nightclasses so I could be with her during the day when no one else was home. So I can relate somewhat, if not fully. It is incredibly difficult to juggle work, school and being ill or having an ill family member. And this was before she was diagnosed.

It is very hard to stick to the diet, especially when you are on the go constantly. It is so convenient to just grab some fast food while driving here and there, and now I fully understand why people often eat so unhealthy...it's convenient. When I went gluten free I noticed a complete difference within a couple days. I have always been very moody with a horrible temper and just over all very impulsive...eating gluten free has really stabilized my emotions.

Anyways, I know no one is asking for advice, but as far as the fog goes, I take b12 vitamins. It really helps me focus. I was taking them before my mom was diagnosed and did not realize until I joined this forum that it is not uncommon to have vitamin b12 deficiency. The only thing is, I would get checked for it before you start taking the vitamins, in case no one has already. It can be dangerous to take if you have no real need for it. It helped me alot.

I finally got my leave of absence from work because my mom was glutened 6 weeks ago. I am starting school again in January and of course I am now having second thoughts about what i want to do with my life. I love the nursing field, but I really would like to work with special needs children. I think that falls more under social work though. So on top of everything, I need to figure this out soon because I don't want to wait until next fall to start school. I thought it was bad enough having to wait until January. I wasted the past 5 years of my life and am quite keen to make up for it.

I don't mean to complain, I love taking care of my mother and would seriously kill for her, but even with time off work I am finding it hard to manage my time and do the things I have to do. My brother is no help, he lives in his own little world, or possibly on another planet, and my dad is the sole breadwinner for the family. I have been sick for the past 3 weeks, first bronchitis and now it turned into a URI. I cannot seem to keep myself healthy in my fight to keep my mom healthy...but honestly, since she has celiac, I care more about her health right now. I have witnessed celiac...I cannot imagine what it would be like to experience it.

My heart goes out to all of you.

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I can not compare my insides to someone else's outsides. Who knows what others are dealing with. I had to make my life a little less demanding, made a few things less stressful and less taxing. I have lived many years without knowing what gluten does to me. Trust me life is better knowing and dealing with it then wondering for years and years what the heck is going on. I would rather spend time figuring out what to eat then spend time trying to figure out why I was so sick. I am so glad I am on this side of it.

The only real change is that I keep food in my car and have a suitcase that I call my traveling kitchen. I do look for gluten free places to eat or just take my food with me. It has been a year and a half now and I a more comfortable with strange meal at times in public and asking people for what I need. Pluse I have found it is a great way to justify buying a meal of salmon rather then being cheep and eating a drive though burger, ah there are perks!

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Maybe you could call a friend and ask for help. Meal prep is really time consuming and can get stressful if you're busy. Maybe someone could help you out with grocery shopping or cutting veggies.

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Curious question...are there any individuals working a very demanding work environment (or going to school to work) that are at the same time trying to recover from celiac disease (as well as other intolerances)? I would really just like to sound off some thoughts and meet other nurses with this condition.

I'm a nursing student myself (graduating in May 2010), and some days I feel like I have such a hard time trying to stay focused with the brain fog, or dealing with the constant fatigued feeling, headaches, etc. And no, I am not eating gluten...I feel like I'm still recovering, but of course most of us know that the days of recovering (shall we call it a "gluten detox" on our bodies?) are some of the hardest. I know that I'm physically present in class and clinicals, but at the same time it feels like I'm delusional. While I'm sitting there looking "fine" to other classmates, I'm a train wreck on the inside trying to fight against my body so that I can just learn the material that I need to. It takes me forever to study (which I hate, but I do what I have to), and on top of that I have other personal family issues that I'm trying to work out. On the "bad" days, on top of feeling crappy I put up with feeling like a complete ditz when my closest friends keep asking me, "are you okay?" or seem to have trouble following my train of thought. I'm soooo scared about graduating and "going out into the real world" in just 8 months from now. It's not that I'm nervous about not knowing the material...I'm more nervous about how long my body is going to play games with me! Some days I'm fine, and many others I'm not; hopefully that's just part of the recovery process. Just praying that I'll be "fully recovered" by the time I graduate!! It's only been a full week ago since I seriously started evaluating EVERY SINGLE thing I've been eating or drinking, and knowing that it's gluten, caesin, yeast, and egg free.

So that's my story. I'm not looking for advice or suggestions; I just wanted to be open and honest about how things are going with me. I want to hear about your situation and how you're coping with being in recovery on top of working in the profession, going to school, etc. Vent any frustrations (if you have any). For those of us in the field of healthcare, we can mutually agree that we decided to work/go to school at least for the partial degree of interacting and helping others with their own ailments. For some of us, maybe our diagnosis and own battle with our bodies has encouraged us to hold a greater appreciation for others who are sick or suffering (it has for me, anyway).

Anyway, if you're interested in sharing anything or just talking about things that you KNOW others wouldn't understand (unless they've been where we've been), I invite you to just sound off. It would be so interesting for me to hear anything you say...and comforting to know that I'm not alone in this (which I feel like I sometimes am).

~ LadyC

Hello Ladycyclist

I constantly had brain fog,unable to focus,in my case,I rapidly got better

(hence a 50 pd. weight gain in 6 months) Everyone is different. Be patient your good health will come back. Unless there is something else. If I remember your the person from York,Pa.?And your in nursing school, wow,the eating part must be very difficult !

But, I have to make my own meals (barely have time) and the cycling keeps my mental-state sharp,along with physical

You keep at it,keep gluten-free,and try to find time to CYCLE!

Chuck

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I am not sure if im posting in the right place here. Im not in the health care profession, im going to school for Fine Arts. I find it very difficult for me to concentrate as well, drawing is an obssession of mine and so is painting. The semester has just started I was doing "ok" for the first couple of weeks, bringing snacks and having my protien drink every 2hours but this is the forth week of school and I had to skip out on 4 days of calsses and one day of work. I was not functioning properly. even as i write this response I can't seem to get my thoughts in order. I guess i really pushed myself to keep up with everything (eating, school work, energy levels, babysitting, cooking, grocery shopping) i dont think that my body was ready for something like that.

I have been gluten free for 4 weeks tomorrow I will start my 5th week. Last thursday I had accidently consumed soy sauce so i dont know if that affects how I am doing now. I am lucky i work for my mom and 1 day a week.

I had a project due on thursday that I didnt complete, I am freaking out about school because of how my energy level is, I set my standards high when I paint or draw and now I cant even think of the most basic things to put something together. My lines are off, my shading is rediculous, my perception is just not there. I hate hate not being able to think properly to do anything, i feel extremely useless right now. My attention span is very short, I feel so lazy but i know Im healing. I hate not drawing but when i try to draw i get frustrated because it just doesnt come out right. I cant put the peices together in my head.

The morning are hard because I don't eat through the night when i'm sleeping so I have a hard time waking up, sometimes I am really emotional when i wake up, I am very difficult in the morning. I know that I should eat something but I cant get myself up and I am not hungry. Iv remedied that a little by keeing some apple juice next to my bed so when i wake up i can at least get some sugars into my system to get going and cook breakfast for myself.

I missed out on my nephews first birthday yesterday. Being couped up at home for the past 6 days pretty much sucks, i dont trust myself to drive anywhere or go out. I would like to try to go to school tomorrow, but I am having uneasy feelings about that.

Does anyone else get really shaky or feel weak @ times when they need to eat something? Does anyone eat like every 2 hours? is that normal to be weak/eating every couple of hours to keep the energy up?

How long does this crappy part last?! Does anyone have depression with their celiac?

~cherie

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Hey, Cherie - have you had your blood sugar tested? It sounds like you might want to get that checked out. Depression and celiac can certainly go together, but it's worth having the physical side of things looked at, too, and from what you've described here, I'd get that looked at. Good luck!

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Curious question...are there any individuals working a very demanding work environment (or going to school to work) that are at the same time trying to recover from celiac disease (as well as other intolerances)? I would really just like to sound off some thoughts and meet other nurses with this condition.

I'm a nursing student myself (graduating in May 2010), and some days I feel like I have such a hard time trying to stay focused with the brain fog, or dealing with the constant fatigued feeling, headaches, etc. And no, I am not eating gluten...I feel like I'm still recovering, but of course most of us know that the days of recovering (shall we call it a "gluten detox" on our bodies?) are some of the hardest. I know that I'm physically present in class and clinicals, but at the same time it feels like I'm delusional. While I'm sitting there looking "fine" to other classmates, I'm a train wreck on the inside trying to fight against my body so that I can just learn the material that I need to. It takes me forever to study (which I hate, but I do what I have to), and on top of that I have other personal family issues that I'm trying to work out. On the "bad" days, on top of feeling crappy I put up with feeling like a complete ditz when my closest friends keep asking me, "are you okay?" or seem to have trouble following my train of thought. I'm soooo scared about graduating and "going out into the real world" in just 8 months from now. It's not that I'm nervous about not knowing the material...I'm more nervous about how long my body is going to play games with me! Some days I'm fine, and many others I'm not; hopefully that's just part of the recovery process. Just praying that I'll be "fully recovered" by the time I graduate!! It's only been a full week ago since I seriously started evaluating EVERY SINGLE thing I've been eating or drinking, and knowing that it's gluten, caesin, yeast, and egg free.

So that's my story. I'm not looking for advice or suggestions; I just wanted to be open and honest about how things are going with me. I want to hear about your situation and how you're coping with being in recovery on top of working in the profession, going to school, etc. Vent any frustrations (if you have any). For those of us in the field of healthcare, we can mutually agree that we decided to work/go to school at least for the partial degree of interacting and helping others with their own ailments. For some of us, maybe our diagnosis and own battle with our bodies has encouraged us to hold a greater appreciation for others who are sick or suffering (it has for me, anyway).

Anyway, if you're interested in sharing anything or just talking about things that you KNOW others wouldn't understand (unless they've been where we've been), I invite you to just sound off. It would be so interesting for me to hear anything you say...and comforting to know that I'm not alone in this (which I feel like I sometimes am).

~ LadyC

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It may not be fair of me to post this here, just because I have SO many other things wrong with me besides celiac! But then again, I blame celiac for all of the other autoimmune diseases (see http://www.umm.edu/news/releases/zonulin.htm), so why the heck not?? :angry:

It's so disappointing because I was really beginning to feel better on the gluten free (now grain free) diet, until this recent flare of whatever else I have (some new AI disease which started flaring a couple of months ago).

I work 2 very demanding jobs: I'm a scientist supporting a NASA mission by day. I also teach math part-time at our local community college.

It's becoming harder and harder to go to the office and work a normal day. Vertigo, nausea, extreme fatigue, blurry vision, headaches, and (I don't remember what it's called but its when you can't stay awake and just fall asleep in the middel of doing somthing). Edit: I remembered!! Narcolepsy!!

My rheumy now believes I may have lupus (started me on Plaquenil). I'm just too sick to continue with this....I don't know how much longer I can hang on. Teaching is now incredibly tough as well. My eye sight goes in and out...sometimes I can't even make out faces, other times my vision is perfect. My hearing seems to fluctuate too.

Brain fog has really caused problems at times. While teaching (my part-time job), I've forgotten what I was trying to say in the middle of a sentence. Or forgotten which algebra problem I was doing while I was doing it!! At my full-time day job, I've forgotten familiar words and/or names of people I've known for a decade!! Makes it difficult to carry on a conversation.....people look at you funny when you can't rememeber something so simple.

I made a mistake on a document requesting a service recently. The person who implemented the request caught it, but what if he hadn't? I'm starting to worry that I will make a mistake that won't be caught. What it it affected the spacecraft??

Or, if it is caught, it could reflect badly on our team, and that would cause embarrassment. I don't want that.

I'm starting to think I need to be on disability, but if I'm going to end up on disability, do I wait until the last possible moment or do I leave with dignity intact? I think waiting until the bitter end will be humiliating, because it will become obvious by that time that I can no longer do my job.

I also worry because I have to drive to work and it's becoming increasingly difficult to drive when I'm having a bad day. The blurry vision and vertigo can make it really scary, also I fight sleep at times, and struggle to stay awake by slapping or pinching myself. I definitely feel that I'm as dangerous as a drunk driver when I'm like that. It's just not responsible of me to continue....I don't want to die in a car wreck and possibly take innocent people with me.

I do work from home some days, but have to take frequent breaks to lie down and rest. Sometimes my fibro pain is very hard to deal with....sometimes I can't even sit long because my behind hurts too much.

There's my vent....well, I guess I've depressed myself and everyone else enough now. :(

JoAnn

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hey there:

I get where you are coming from completely. I also have serveral AI issues and a demanding career. When things got really rough I decided to prioritize my health. I took some time off....rebuilt my strength and energy. Took some control back. After a few months I started to feel healthier and I made some changes, permanent ones. I scaled back. Historically I always prioritized my career over everything else: relationships, health, etc. No more.

I've become more multi-faceted and re-defined my idea of success. And there are some in my profession who surely think "oh, she just can't play with the 'big boys' anymore -- she doesn't have what it takes." That's fine. At the end of the day I will have less money in my wallet and more pictures in my photo album. And really, I can perform with more excellence because I take care of myself.

So I wonder if you can scale back. In addition to your day career, must you also teach evenings? You could take that time to engage in restorative activities...or to rest if that is what you need. Rest = awesome. Is it possible to take some time off...several months? Can you go on some sort of secondment?

KDAWG

It may not be fair of me to post this here, just because I have SO many other things wrong with me besides celiac! But then again, I blame celiac for all of the other autoimmune diseases (see http://www.umm.edu/news/releases/zonulin.htm), so why the heck not?? :angry:

It's so disappointing because I was really beginning to feel better on the gluten free (now grain free) diet, until this recent flare of whatever else I have (some new AI disease which started flaring a couple of months ago).

I work 2 very demanding jobs: I'm a scientist supporting a NASA mission by day. I also teach math part-time at our local community college.

It's becoming harder and harder to go to the office and work a normal day. Vertigo, nausea, extreme fatigue, blurry vision, headaches, and (I don't remember what it's called but its when you can't stay awake and just fall asleep in the middel of doing somthing). Edit: I remembered!! Narcolepsy!!

My rheumy now believes I may have lupus (started me on Plaquenil). I'm just too sick to continue with this....I don't know how much longer I can hang on. Teaching is now incredibly tough as well. My eye sight goes in and out...sometimes I can't even make out faces, other times my vision is perfect. My hearing seems to fluctuate too.

Brain fog has really caused problems at times. While teaching (my part-time job), I've forgotten what I was trying to say in the middle of a sentence. Or forgotten which algebra problem I was doing while I was doing it!! At my full-time day job, I've forgotten familiar words and/or names of people I've known for a decade!! Makes it difficult to carry on a conversation.....people look at you funny when you can't rememeber something so simple.

I made a mistake on a document requesting a service recently. The person who implemented the request caught it, but what if he hadn't? I'm starting to worry that I will make a mistake that won't be caught. What it it affected the spacecraft??

Or, if it is caught, it could reflect badly on our team, and that would cause embarrassment. I don't want that.

I'm starting to think I need to be on disability, but if I'm going to end up on disability, do I wait until the last possible moment or do I leave with dignity intact? I think waiting until the bitter end will be humiliating, because it will become obvious by that time that I can no longer do my job.

I also worry because I have to drive to work and it's becoming increasingly difficult to drive when I'm having a bad day. The blurry vision and vertigo can make it really scary, also I fight sleep at times, and struggle to stay awake by slapping or pinching myself. I definitely feel that I'm as dangerous as a drunk driver when I'm like that. It's just not responsible of me to continue....I don't want to die in a car wreck and possibly take innocent people with me.

I do work from home some days, but have to take frequent breaks to lie down and rest. Sometimes my fibro pain is very hard to deal with....sometimes I can't even sit long because my behind hurts too much.

There's my vent....well, I guess I've depressed myself and everyone else enough now. :(

JoAnn

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hey there:

I get where you are coming from completely. I also have serveral AI issues and a demanding career. When things got really rough I decided to prioritize my health. I took some time off....rebuilt my strength and energy. Took some control back. After a few months I started to feel healthier and I made some changes, permanent ones. I scaled back. Historically I always prioritized my career over everything else: relationships, health, etc. No more.

I've become more multi-faceted and re-defined my idea of success. And there are some in my profession who surely think "oh, she just can't play with the 'big boys' anymore -- she doesn't have what it takes." That's fine. At the end of the day I will have less money in my wallet and more pictures in my photo album. And really, I can perform with more excellence because I take care of myself.

So I wonder if you can scale back. In addition to your day career, must you also teach evenings? You could take that time to engage in restorative activities...or to rest if that is what you need. Rest = awesome. Is it possible to take some time off...several months? Can you go on some sort of secondment?

KDAWG

Thanks KDawg,

Those are good suggestions....I've been thinking along those lines myself. Not to go on permanent disability at this point, but perhaps to take some time off to figure things out and just REST. Clearly I need to do something like that.

And even if I do continue to work, I should cut back. I'm just doing too much for the current state of my health. It worked for me when I was healthy but no longer. No doubt the stress levels alone exacerbate my conditions!

Thank you for sharing your own story....it's wonderful that you've discovered such balance in your life!

Take care,

JoAnn

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hey JoAnn:

Well, I'm still a work in progress...every so often I want to slip back in to old habits (e.g. taking on too much). But I don't. And I never will. I remind myself that I feel good because I have scaled back and that my health is precarious (I mean, I still have bad days). I'll never take my health for granted again.

Like you, I was a powerhouse when I was healthy. I did a 4 year degree in 3 years while working 2 p/t jobs and maintaining an A+ average. I thrived on that sort of stress...and in the end it was SO WRONG for me. Sometimes I do mourn the loss of that person, but I have such a more fulfiling life and I"m happier.

So I hope you are able to take time off to rest. For me, taking the time off was the best decision I made. I backed away from most volunteer work as well. I needed to do that for me. I would wake up, watch the sun come up with a cup of coffee...go to the market and come back with great and fresh organic food. The only demands on my time were my two dogs and some dr's appointments. After a few months I felt more in control of my life... my health... and I had faced the reality that I could NOT continue to live the way I had been.

I realize that I was lucky - not everyone is able to take time off like I did. But if you can, it is worth it to do so.

Thanks KDawg,

Those are good suggestions....I've been thinking along those lines myself. Not to go on permanent disability at this point, but perhaps to take some time off to figure things out and just REST. Clearly I need to do something like that.

And even if I do continue to work, I should cut back. I'm just doing too much for the current state of my health. It worked for me when I was healthy but no longer. No doubt the stress levels alone exacerbate my conditions!

Thank you for sharing your own story....it's wonderful that you've discovered such balance in your life!

Take care,

JoAnn

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I saw this and it was perfect. I have a hectic schedule with two children under five and one that's 26. I have to make myself lay down while my son naps so that I can get my extra rest. It works because our bedroom is through his. So, if he is sleeping, I have to stay back there. I don't like it, but it does help.

Brooklyn

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