Cd And Working, How Do You Cope?

[davo76]

Hi,

This is my first post so bear with me please. I've recently been diagnosed with celiac disease by means of blood tests and an gastroscopy / biopsies and am still waiting to see a dietician but have already taken steps to remove wheat from my diet. I've had my symptoms for nearly 2 years before diagnosis and have missed a lot of time from work because of this (i'm not entirely convinced all of my symptoms are caused by celiac disease). My main symptoms are:

Abdominal cramping/bloating

Reflux acid

Appetite (Increased to the point of craving)

Back pain

Fatigue / Tiredness / Breathlessness / Severe Headaches (this is what gets me the most, I dont seem to have any energy to do things and my head is pounding)

Low thyroid (the doctors are under the impression its connected?)

Vitamin B12 deficiency

Disinterested in normal activities

Unable to concentrate

I'm quite worried because 90% of the time I feel dreadful, just turned 29 and feel 4000

Are these symptoms all to do with celiac disease, how long does it take to start feeling better and how do people cope with their jobs? I work in IT repair so theres a fair amount of physical activity and for the past two years i've just not been up to it.

Thanks,

David

Ps. Sorry for the whinging but i'm getting tired of feeling rough

[Rachel--24]

David,

I know how you feel. I was sick for 3 years and had thyroid problems as well. I didn't know I had gluten sensitivity until only 2 months ago. I had alot of the symptoms you mentioned plus many more. At first I thought it was only my overactive thyroid causing the symptoms...I eneded up having my thyroid destroyed with radioactive iodine. This was suppossed to correct the problem but it didnt help at all. I got worse because I now had to rely on thyroid meds which were not being absorbed correctly due to damage to my intestinal lining which I was unaware of.

I couldnt function at all at work....couldnt finish an 8 hour day or go even 1 week w/out calling in sick. I felt like less of a person since I couldnt complete simple tasks and I had no idea what was causing the symptoms. I ended up on disability for a total of 21 months out of the last 3 years.

Yes, Celiac can be causing you that many problems. I was bed-ridden and suicidal from it.

Now that I know whats going on I'm doing much better. Back at work 2 weeks now and didn't even think of calling in sick or leaving early. I'm working up to my full potential instead of just "being there".

Don't worry...it *will* get better. Stick to the diet and you will get your life back.

[davo76]

Hi Rachel,

Thanks for replying, its reassurring knowing that its all connected. I'm very sorry to hear about the troubles you've had with it. I suppose one of the main problems with celiac disease is people thinking its nothing too serious especially where employment is concerned. You should see some of the letters I've received off them because of absence .

Good luck with the recovery

Thanks,

David.

[debmidge]

Dave

it's not much consolation but my husband got celiac disease at age 27 too, but was misdiagnosed for about 26 years. He had to stop working when he was 29 and hasn't been well enough to work since then. Thankfully you obviously got diagnosed early on. My husband too believes that he has more than celiac disease but haven't got a proper diagnosis on that. He has all of the symptoms you describe, but include diarrhea and a 40 lb weight loss (to the point of looking anorexic). He lost this weight within three months of coming down with celiac disease in 1977.

I hate when employers are insensitive to their employees. Would you doctor agree to you going on SSA/SSI for a while so you can get better without stress? Or, can you free lance a while?

Best wishes,

D.

[Rachel--24]

I guess I've been pretty fortunate about my workplace being supportive and understanding (for the most part). Even with all the sick days (too many to count), coming in late, leaving early and going off and on disability....they never gave up on me. Now I'm back to myself and I think everyone can see the difference.

[ianm]

You sound just like me at the beginning of 2004. I was days away from losing my job when I finally discovered what was wrong with me. I was 36 then. You probably won't get much, if any help from a dietician. Most of them are pretty clueless about this disease. I started feeling better right away but "better" for me would still be pretty crappy for anyone else. It was about 3 months before I started to feel alive but it was a good year to become really healthy. Study this website carefully and scrutinize everything you eat. Keep at it, if I can do it then anyone can.

[bmorrow]

The most difficult thing for me the last three years has been coping with missing work. I posted last week about some things that I was going through at work, and that I was going to resign. I have decided to keep trying, even though, I am not receiving support from my boss or some of my co-workers. You just have to do the best you can, and don't give up. Stay on the diet and keep reading posts from this forum. There is much more information on here then you will ever get from a dietician or a doctor.

I have all of your symptons, except for the low thyroid.

Good Luck!

[amydstar]

Hi,

This is my first post so bear with me please. I've recently been diagnosed with celiac disease by means of blood tests and an gastroscopy / biopsies and am still waiting to see a dietician but have already taken steps to remove wheat from my diet. I've had my symptoms for nearly 2 years before diagnosis and have missed a lot of time from work because of this (i'm not entirely convinced all of my symptoms are caused by celiac disease). My main symptoms are:

Abdominal cramping/bloating

Reflux acid

Appetite (Increased to the point of craving)

Back pain

Fatigue / Tiredness / Breathlessness / Severe Headaches (this is what gets me the most, I dont seem to have any energy to do things and my head is pounding)

Low thyroid (the doctors are under the impression its connected?)

Vitamin B12 deficiency

Disinterested in normal activities

Unable to concentrate

I'm quite worried because 90% of the time I feel dreadful, just turned 29 and feel 4000 

Are these symptoms all to do with celiac disease, how long does it take to start feeling better and how do people cope with their jobs? I work in IT repair so theres a fair amount of physical activity and for the past two years i've just not been up to it.

Thanks,

David

Ps. Sorry for the whinging but i'm getting tired of feeling rough

<{POST_SNAPBACK}>

[davo76]

Thanks for the support and advice everyone. . I'm already on ssp / disability due to being off work as long term ill. My company sick pay only lasts for three months then they stop paying and that ran out a long time ago. Another so called benefit of my employer is my wages are insured for 90% of their value per year as part of a long time disability plan provided by a third party insurance company. The only problem with this is they wont pay out because they said my illness is stress related and not physical, then they anounced in their opinion (without ever seeing me) I was perfectly fit for work and told my employer such, despite me going to two seperate medicals by request of my employer which both said i'm unfit for work, no prizes for guessing who my employer sided with, yep thats right, an insurance company. Now i've got a firm diagnosis I might get somewhere with it (I wont hold my breath ). I've been very close on numerous occasions to resigning like other people here have mentioned. I'm at the point where I just dont care but then I get to thinking why should I lose out on something i've paid into and am entitled to. Once again thanks to everyone who replied, the advice helps a lot

[jenvan]

hang in there...like rachel said, stick with the diet and you'll see change. you may want to ck into an area support group. sometimes it can be an encouragement and great resource to have other celiacs in your area.

[Janelson]

I know how you all feel I work full time and go to school full time. I was suppose to graduate this spring but ended up failing classes because I was sick for most of the semester before I was diagnoised. This semester I left a class easier and thought it would help if I explained myself to my professor and she just said "Dont make this a habbit". As if getting sick is just a really bad habit of mine. Not to mention the nasty comments I recieve from my job when I call in. However ever since I have been taking vitamins by the truck load and really watching what I eat.....lets just say I can smile again. I do have my days where I just want to lay in bed....like today. Those are the days I slack at work and make up for it tomorrow when I feel a bit better. I have learned not to fear this disease anymore becasue there is not much more it can take away from me....now comes the fun part...winning it all back

[Guest BellyTimber]

Thank you Janelle I must remember what you'r saying, I have a lot in common with those posting in this topic.

[dfish]

I can so much understand what everyone is saying here. I have not gone a year and a half without calling in sick at least one time per week. I went from having over 300 hours of sick leave when all this started to 4 currently. I am lucky in a lot of respects because I have a job that allows me to "flex" time, so when I am feeling good I work weekends and then can "flex" the time out later in the week. But this doesn't account for how I personally feel like a failure because I want to be a good employee. I also have several bosses who don't understand this disease at all and who have "talked" to me about my absenteeism. My retort has always been for them to look at my work product, look at how I always meet my deadlines, to talk to others that I work with who praise my work very highly, and then they can talk to me about how my absenteeism is affecting my job. Since they can't say that my absenteeism is affecting my job, they back off. I am also union represented and know from others' experiences that it would be like pulling teeth to get me fired for something like an illness because of my union representation. I know others don't have that luxury and that makes me sad.

I would suggest for persons who are getting denied disability or long term insurance or are getting harrangued by managers that you go to speak with an employment attorney. Celiac disease is a true disease that is, in my understanding, covered under the ADA and Family Medical Leave Act. The FMLA allows a person up to 12 weeks per year leave, generally above and beyond any sick leave you may have (it's generally unpaid leave, but it's still twelve weeks). In my experience, employers bank on the notion that their employees don't know their rights and are so desperate to keep their jobs that they will tolerate anything. However, a good employment attorney should be able to speak to you about your options and these federal acts that are designed to protect people from just such employer problems. It may seem extreme and expensive to go speak to an attorney, but for the amount of suffering and stress you are already enduring because of this condition, it may be worth the money to get a little peace of mind about what your rights are. AND, it may be worth the financial and emotional recourse to "teach" your unsympathetic and inappropriate employer via legal action just how serious celiac disease is.

[debmidge]

when an insurance company turns you down for something, they have rules set up by the local state governments which apply to appeals and arbritation, etc. If the insurance co. is denying you coverage, you have a right to make a written appeal and maybe even go put a complaint in against them with the State Dept. of Insurance (state that you live/work in). the Dept. of ins regulates the insurance company's rules/appeals/coverages, etc.

[TheLibertarian]

What is really bad is because I "toughed it out" and kept working and put on a brave face, my original doctor did not believe I was really sick.