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Jen H

Celiac Disease And The Workplace

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Hi everyone,

I recently found out I have celiac disease and I had to leave my job because my symptoms prevented me from getting through the workday. I was constantly sick, and as a teacher, I didn't think it was fair to myself or the students to not be there regularly.

I decided not to work this coming school year until I am feeling better. Now that I have an answer for my illness, I can begin the healing process. However, I feel extremely guilty for not being able to work. I feel like I am not pulling my weight in my marriage, but I can't control being sick. I'm a bit down about the situation. Have any of you been out of work for an extended period of time due to celiac disease? How do you cope with your symptoms?

Thanks, Jen

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Oh boy...have you got a week? I have just recently had to close my law practice due to celiac disease-related complications. After so many years of functioning under one set of expectations, it is a tough job trying to adjust. Well, I guess that's why we're all here - to listen and to help if we can.

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Yes, I'm in a similar situation. I've been unable to work for several years and want to work desperately. I am extremely driven and desire to work hard, so this is very difficult for me. I am the so-called "achiever" type. It has especially affected my self esteem. I'm not sure of the best way to cope, but it helps to acknowledge that you are sick and would work if you could and will work as soon as it is possible. I try to look at my accomplishments from the past and my nature (of working myself to the bone) to reassure myself. It also helps to have a supportive spouse. Good luck getting through this, and try not to be too hard on yourself.


emeraldskies

Diagnosed through EnteroLab in 2004 - malabsorption, antigliadin and antitissue transglutaminase IgA antibodies to gluten, and anti-casein IgA antibodies

HLA-DQ 2,1 (Subtype 2,6)

Gluten and casein free since diagnosis

Autoimmune thyroiditis

Hypocortisolism

Deficient levels of estradiol, estrone, pregnenolone, and testosterone

Low cholesterol (current levels: HDL-39, LDL-58, total-109, triglycerides-59)

Osteoporosis

Atrophic glossitis

Osteomalacia

Ataxia (gait and limb)

"All truth passes through three stages: first it is ridiculed, second it is violently opposed, and third it is accepted as self-evident."

- Arthur Schopenhauer

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Higgins and Emerald Skies,

Thank you both for responding. I feel relieved that I am not the only one in this situation. I kept working through my symptoms and not acknowledging them. I think my body was trying to alert me in different ways, but I ignored it. I think that's part of the reason I am where I am now.

Jen

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Jen- (I'm Jen too : )

I feel for you girl... I really have to push to get thru the week and take days when I can to recoup... but I guess I am a lucky one, being able to make it work most of the time. I feel guilt in my marriage at times as well. I feel like I read a disappointment from my husband :( But please don't feel guilty... you health has to be the main priority, and you are not trying to be difficult or needy, you have an illness that is taking it out of you right now. I hope you are able to lean on your husband right now...b/c there will probably come a time when he will need to lean on you. I also hope you do receive some real healing this year. Remind yourself this is b/c of nothing you did...anyone could be in your situation. And be encouraged by the many here who have gotten better and have gone on to live active lives!

There are a few things that help me cope... #1 is simplifying my life. Which is hard... I'm a Type A--and that means I want to make a homemade dinner for my husband and I each night, making everything from stratch, in a clean house, with a great garden, all the while having worked out, pursued my friends, parents and husband, and taken a little time to pet our cat too. ! Simplifying forces me to prioritize what I can "let go." If I am not disciplined I will continually run myself into the ground. If there is anything you can eliminate--please do. I also try to suround myself with friends who encourage me (mine are good), music that uplifts me and tv shows that make me laugh alot. I feel like I'm starting to sound like a cheesy greeting card (!), but these basic things in combination help me out. I also like to use my heating pad and foot spa each week and they renew me for a little while.

I also encourage you to give your husbands specific ways he can help you out. It seems like you have just recently started the diet. It can take several months to see marked improvement for some. Do you feel confident you aren't getting gluten from sneaky sources?

higgins- I am really sorry to hear of you having to close your practice. I can't imagine what that must feel like... Good luck in your transition and next stage...whatever you do.

emeraldskies- I understand the esteem issues--b/c unfortunately many of us base our esteem on our productivity and output--rather than WHO we are, HOW we affect and impact those around us... I encourage you to think about your role in other people's lives and how important you can be in that manner--size yourself up by that, not by what you are able to do right now. It also comforts me to remind myself--this is a hiatus I hopefully will move out of--and that everyone needs breaks from time to time. I get disappointed with the goals I so wish I could reach--going back to school, doing a triathalon...but I can say, 'I cared for a friend well today who is hurting, and that is an accomplishment too." We can have a lot to overcome. Good luck to you :)


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Jen,

I'm glad you posted about this. I've been on disibility a total of 21 months now. I was only diagnosed this week. It's been very frusterating for me not to work and I tried to go back three times...I would end up calling in sick at least once a week which wasnt fair to my job. Luckily my boss and everyone else is very understanding. I've worked for the same company 15 years and rarely called in sick before so they know its legitimite and just want me to get better. They have held my position for me this whole time waiting for me to get better. My mom on the other hand thinks I should be able to work...she thinks if it were HER that was sick she'd be able to deal with it and go to work everyday. I feel she is not understanding all I've gone through and the pain I've dealt with. I'm not someone who cries over every ache and pain...no amount of pain has ever stopped me from doing what I want until this gluten thing happened.


Rachel

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[i decided not to work this coming school year until I am feeling better. Now that I have an answer for my illness, I can begin the healing process. However, I feel extremely guilty for not being able to work. I feel like I am not pulling my weight in my marriage, but I can't control being sick. I'm a bit down about the situation. Have any of you been out of work for an extended period of time due to celiac disease? How do you cope with your symptoms?

Thanks, Jen

<{POST_SNAPBACK}>


gluten-free since Oct 1996

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emeraldskies- I understand the esteem issues--b/c unfortunately many of us base our esteem on our productivity and output--rather than WHO we are, HOW we affect and impact those around us...  I encourage you to think about your role in other people's lives and how important you can be in that manner--size yourself up by that, not by what you are able to do right now.  It also comforts me to remind myself--this is a hiatus I hopefully will move out of--and that everyone needs breaks from time to time.  I get disappointed with the goals I so wish I could reach--going back to school, doing a triathalon...but I can say, 'I cared for a friend well today who is hurting, and that is an accomplishment too."  We can have a lot to overcome.  Good luck to you :)

<{POST_SNAPBACK}>

Thanks for the kind words and suggestions. A person's worth shouldn't be based on his or her job. If more based their self esteem on their actions toward others, things would be much better. I also think I have more worth to others than I do to myself, so maybe I need to change my outlook.


emeraldskies

Diagnosed through EnteroLab in 2004 - malabsorption, antigliadin and antitissue transglutaminase IgA antibodies to gluten, and anti-casein IgA antibodies

HLA-DQ 2,1 (Subtype 2,6)

Gluten and casein free since diagnosis

Autoimmune thyroiditis

Hypocortisolism

Deficient levels of estradiol, estrone, pregnenolone, and testosterone

Low cholesterol (current levels: HDL-39, LDL-58, total-109, triglycerides-59)

Osteoporosis

Atrophic glossitis

Osteomalacia

Ataxia (gait and limb)

"All truth passes through three stages: first it is ridiculed, second it is violently opposed, and third it is accepted as self-evident."

- Arthur Schopenhauer

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Hi everyone,

I wish I could give you guys all a big hug. Thanks so much for your kind words. You're all so wise. :) I just started seeing a therapist today and brought this topic up with her. She mentioned that in general, many people tend to identify themselves with their profession and that many of us work so hard that we don't take time for ourselves. She said that when someone is ill, the best thing to do is take some time away from major stressors, such as a job, if at all possible. Only then can we truly heal. I think deep down I knew this was the right thing for me to do, I just needed to hear it from other people.

Jenvan, I think you're absolutely right about trying to simplify life. I too have an A-type personality and have always tried to do everything. Over the past 2 weeks I have started to learned to take time for me, although it feels very strange. When I am able to go back to work, I've considered substitute teaching and tutoring (thanks nettiebeads for the suggestions). I've also been trying to exercise more and have considered taking yoga to help occupy my mind and heal my body.

As for the gluten-free diet, it is still fairly new to me. I think I have eliminated all gluten from my diet, but am unsure because I'm a newbie. I did get a set of pots and pans for myself. How about silverware? How about using the same dishwasher? Is there a chance of cross contamination there?

thank you guys again!

:) Jen H

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  I just started seeing a therapist today and brought this topic up with her.  She mentioned that in general, many people tend to identify themselves with their profession and that many of us work so hard that we don't take time for ourselves.  She said that when someone is ill, the best thing to do is take some time away from major stressors, such as a job, if at all possible.  Only then can we truly heal.  I think deep down I knew this was the right thing for me to do, I just needed to hear it from other people.

<{POST_SNAPBACK}>

Jen,

You have a good therapist...she is sooo right. The first time I went back to work I was still very sick but everyone kept telling me it would be better to go back and do normal things...like I would magically get better from normal activity. I worked for about 8 months calling in sick constantly....I'm also type A so whatever I do its gotta be 100%. I was pushing myself too hard...I'm sure thats how I ended up sick to begin with. I was also in a relationship that I didn't really want to be in...so there was some stress from that also. I realized I had no time in my day to actually try to figure out why I was so sick...I got off work...ended my relationship and focused on getting a diagnosis. It took almost 1 year to the day but I finally have my answer and now I can move forward. I'm glad I took the time and got away from all the stresses in my life...I also learned more about myself and think now I'm a better...less selfish person cuz of it.


Rachel

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I can say with absolute certainty that it will get better. Take care of yourself and follow the gluten-free diet and things will work out.

About 18 months ago my then undiagnosed celiac was raging out of control and I was days away from losing my job because of poor performance. My marriage was falling apart also. I actually discovered my problem when I tried the Atkins diet which lead me to the realisation that I had Celiac. I followed the gluten-free diet to the letter and my health improved dramatically. I have lost over 80 lbs and am healthier at 37 than I was at 17. My marriage ended in divorce but that turned out to be a good thing.

I had my performance review last week and my boss said, "I don't know what the hell you did but keep doing it." He started there about two years ago and said he wanted to can me on his first day because I was the sorriest loser he had ever known. Now all of my coworkers are complaining because they can't keep up with me. I said they had better speed up because I am just getting started. My life has never been better and yours will be too.

Celiac is the best thing that ever happened to me because it forced me to change everything about my life.


If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.

Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?

Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.

Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

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He started there about two years ago and said he wanted to can me on his first day because I was the sorriest loser he had ever known. Now all of my coworkers are complaining because they can't keep up with me. I said they had better speed up because I am just getting started. My life has never been better and yours will be too.

<{POST_SNAPBACK}>

LOL...That made me laugh.. :lol:

I wonder what some of the newer employees must have thought about me? Probably the same thing...that girl is some kinda loser showing up 1 or 2 hours late everyday and then leaving early...IF she even shows up at all! LOL...Good thing I had a good reputation before this happened or I mighta got canned since I bacame the most unreliable employee ever.


Rachel

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Hi Jen,

I left my job too about 9 mos after diagnosis and being absolutely burnt out - not at work specifically, just very run down. I got sick every month with a cold or flu - and this was in the summer! Others things were going wrong too, of course. The whole thing was very stressful - would I make it to work, did I need to find a sub, would I last for the whole class/performance (I'm a dancer).

I've been "on hiatus" for health reasons for about a year now. It has it's plusses and minuses, but I think was necessary. Dh supported me, but was concerned. He also got majorly stressed over being the "primary sole male breadwinner" as that is NOT his identity or personality type. It has worked so far though. We also have a 3 yr old, and that complicates things too.

I'm 32 and look to "everyone" perfectly healthy - not if you look really close, but most people don't. I think there are folks out there who just think I'm a lazy housewife (not to slam housewives, just that *stereotype* of *lazy*). They don't know what it's like. Be careful not to judge yourself similarly on your down days :)

Merika

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Hi folks. The re-adjustment has been very difficult, as I had been expecting an appointment to the Bench, and having just turned 54 this month, expecting to work another 10 to 15 years.

To complicate matters, my wife had worked with me as my Legal Assistant. Fortunately, we sort of saw it coming, and she was able to get a much less stressful job (with a nicer boss, too) working at a local Holistic Retreat.

My area of practice had been in Litigation, which is a pretty heated and stressful environment, and frankly we're both glad to be out if it.

We are fortunate that we live away from the temptations of the city (all those neat restaurants, etc. that were driving me crazy).

I intend to go back into music, as I was a professional woodwind player and film composer before going into the legal profession. Specifically, I intend to write music for classical guitar. Anybody got a gig?? :D

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I think you're right, Higgins. It is hard to adjust to a new lifestyle when part of your identity is wrapped up in your profession. I'm dealing with that now too. Sounds like you did some interesting work. But, your new adventure will be good for your body and mind. Good luck!

:) Jen

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Hi Jen, I also had to give up my job. What I did was to use the good taste everyone told me I had to find 'bargins' at second hand shops and sold them on ebay. When I started I was 5 years prediagnosis and used my precious immodiated and Libraxed hour in the afternoon to do a quick sweep of the shops. I didn't make a fortune but it kept the wolves at bay so to speak. I still suffer from agoraphobia and actually get out less now :( , but I try not to be too hard on myself and do a little at a time. And you shouldn't be too hard on yourself while you recover your health, got a hobby you never had time for, like painting or is there a homestudy course you might like? Try to take time to heal and enjoy this new phase of your life as hard as that may be at times. The hardest part is over - getting a correct diagnosis.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Guest BellyTimber

Ian, thanks for that inspirational posting.

Higgins, a life filled with music must be a wonderful one! Best of success!

I have had such bad attendance for 5 years and seven major traumatic events in eight years, my employers have tried every trick in their book to keep me off the "under consideration for dismissal" list.

I was fortunate to be able to enrol at a learning to succeed and coping course. The tutor tells us we will review our thinking processes and how we approach the various issues in our lives. His main instruction is, "slow down!"

I cannot have great swathes of what is in the average supermarket and, in most restaurants, no dishes or drinks at all (am also caffeine sensitive etc).

Instead of resenting the way the economy is almost totally founded on things I mustn't have, I've got to view the glass as more than half full. I died and came to life again with parts missing - and it has potential to become a better life. Because I've always been a bit out of the ordinary, I need to blink and really look at the world for what it is and not what I thought I was seeing (trying to copy what others see?)

My employers' medical adviser told them he "knew of no reason" to adjust my absence monitoring triggers being both dyspraxic and gluten & wheat sensitive, hence I have been in and out of the monitoring procedures like a yoyo. An occupational therapist is coming in two days and will start to help me organise my food space and food related activities. Then I will not get tired out because practicalities aren't working, any more. I'll also be able to plan ahead when to take drinks and food with me, that I prepared in advance. Life will run in grooves, on rails!!!

Some of these things come easy enough to some others but it's a lot of changes to make, for any of us.

:rolleyes:;)

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higgins-

glad to see you have the music and another ability to pursue for a career. good luck!

to all who have had to quit your jobs... i feel for you, what a hard choice to make... and hope for all of us more and great healing and improvement !


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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ps-- Ian, a great and encouraging story...glad how things have turned out for you!


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Interesting idea, ravenwoodglass. I've thought about working out of the house too, as it is definitely an area of comfort for me. I'm glad that's working well for you. I would like to contribute financially at some point, but I think that healing is of most importance right now. My husband has been very supportive of this decision, so I am blessed. Once I finally learn to cope with my symptoms I'll look into some part time work.

:) Jen

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I lost my job after being out of the office for 2 months. That was probably the most devastating part of this all. It took me about 6 months to find a new position, what a blow to your ego!! I have been back to work now for 5 months and let me tell you people still do not understand why or how I can get sick, it is very frustrating! especially when I feel bad.

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Hi Kmroper,

It is a blow to the ego, isn't it! It's too bad that more people don't understand celiac disease. I just found out I have it 2 weeks ago and most people don't seem to have a clue about it. They tend to think, "oh, so you just can't eat wheat". I wish it were that simple. It sounds like you're trying to educate your coworkers. That's a great start. Hopefully they'll begin to understand what you're going through.

:) Jen

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If I had the time I could ride a bike 10-15 miles a day no problem. Canoeing and fishing, do you really need anything more than that?


If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.

Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?

Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.

Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

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Guest DanceswithWolves

God, I felt such nausea at work today. This is not doing me any good. I have been eating good all week except for the hamburgers that I had two nights ago that were made with bread crumbs, but I think it's this medicine my doctor prescribed me...this Clidinium. I'm suppossed to take one with each meal...but I don't think my stomach can handle it. Nausea is one of the many side-effects...but after I eat...I'm fine...for awhile.

These meds are for IBS and anxiety, but I wonder if they're actually doing more harm than good. Right now I have such fatigue from work. Plus, I came home and weighed myslef and now I'm 119lbs. Last night I was 123. I do alot of running around for customers at work, so I'm probably burning up every bit of food I take in.

I'm still having several bowel movements (mostly in the morning) but they're all pale in color. I have off tomorrow from work so I am definitely going to the hospital. I can't take this anymore! :angry::angry::angry::angry::angry::angry:

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