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I Need Help

MightbeCeliac's

By MightbeCeliac's
in Coping with Celiac Disease

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MightbeCeliac's Newbie
MightbeCeliac's
Posted

The stress from trying to manage my condition and my life is going to drive me crazy. I can't take it anymore. I'm struggling with depression and every time something bad happens I just want to kill myself. My job is not being understanding of my situation if I accidentally eat wheat I am disabled for about two days and find it difficult or impossible to work. I'm already getting attendance warnings, my doctor gave me a hard time about filling out my FMLA paperwork and then filled it wrong and my claim is being denied for insuffiecent information and my supervisior is gonna give me some other step along the disciplanary road and my family just is no help at all.

This has all gone on for so long...I've had absolutely enough and I don't know what to do.

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GottaSki Mentor
GottaSki
Posted

How long have you been gluten-free? It can take a while to heal...

I've been gluten-free for nearly 6 months and except for some minor improvement with my stomach early on, my symptoms have become much more severe, joint issues, heat intolerance, fatigue and depression. I've been in bed more than out when not at work. Thankfully my husband and teen aged kids have been a big help. Still I don't know what to do sometimes...very frustrating to be sick for so long.

Here are a few ideas of what you could do next....

Is there a celiac support group where you live?

Is there a Human Resource Department where you work that may be able to help?

Call your doctor's office and talk to either the doctor or their nurse with the words that you just posted.

You said your family is not helpful - if possible try to talk with someone - family or friend to let them know how bad it is getting.

Speak to clergy - do you or any of your friends have a religious affiliation?

kaki-clam Enthusiast
kaki-clam
Posted

you just described my life!! I am sorry about what you are going through, and although this might not comfort you, please know that it comforts me to know that i am not alone in the struggles I am having with my job and my life. I can only hope that it gets better, everyone keeps saying it will.

heatherjane Contributor
heatherjane
Posted
The stress from trying to manage my condition and my life is going to drive me crazy. I can't take it anymore. I'm struggling with depression and every time something bad happens I just want to kill myself. My job is not being understanding of my situation if I accidentally eat wheat I am disabled for about two days and find it difficult or impossible to work. I'm already getting attendance warnings, my doctor gave me a hard time about filling out my FMLA paperwork and then filled it wrong and my claim is being denied for insuffiecent information and my supervisior is gonna give me some other step along the disciplanary road and my family just is no help at all.

This has all gone on for so long...I've had absolutely enough and I don't know what to do.

Please do not turn to self destructution and/or suicide. It is NOT worth all of that...this disease is tough to get the hang of at first, but there is SO much more to life. You CAN and WILL get through this rough patch. Remember that you are not alone and there are many people out there who can help you. I agree with GottaSki - find a local support group if you can. There's something about seeing "real" people who are in my same situation that gives me the strength to fight another day. (I met a lady once who was in her 80s, happy as a clam, and has been gluten-free and managing this disease for 40+ years. What an inspiration!) And, as GottaSki stated earlier, if you have a spiritual/religious affiliation, please do go to a member of the clergy for help in coping with this stress. I'm not sure if I'm allowed to be this open in this forum, but in my personal experience, I don't know what I would have done without Jesus and a bunch of great people to walk me through the saddness and frustration I've felt over this life change. Reach out for support from good people (which I think you're already doing). Do NOT give up!

Ahorsesoul Enthusiast
Ahorsesoul
Posted

Please know that we are right there with you. It will get better once you have gone completely gluten free. We are here to help you. You can do this!!!

sylviaann Apprentice
sylviaann
Posted
The stress from trying to manage my condition and my life is going to drive me crazy. I can't take it anymore. I'm struggling with depression and every time something bad happens I just want to kill myself. My job is not being understanding of my situation if I accidentally eat wheat I am disabled for about two days and find it difficult or impossible to work. I'm already getting attendance warnings, my doctor gave me a hard time about filling out my FMLA paperwork and then filled it wrong and my claim is being denied for insuffiecent information and my supervisior is gonna give me some other step along the disciplanary road and my family just is no help at all.

This has all gone on for so long...I've had absolutely enough and I don't know what to do.

I am so sorry you are going through this. It is so frustrating and emotionally painful when family members and your employer have no understanding or empathy for this condition/illness. I wonder if the Gluten Intolerance Group of North America has any advocate programs? If you are really concerned about your job, you could consult with a good employment attorney, who could possibly represent your case. Hang in there and fight back..or get an advocate who can represent you so you don't have to deal with all this on your own!

Hope you feel better soon!

Sylvia Ann

Lexi Enthusiast
Lexi
Posted

I feel SAD for you because I totally know how you feel! I have felt like not wanting to go on Many times, and it's a terrible feeling. My diagnosis of Celiac Disease came with LOTS of other problems to go along with it. It has been a Daily struggle - that's for sure!! And, most people just don't understand our lifestyle. This is a great place to get support - post your feelings as often as you need to. Hang in there - Don't give up! Things will get easier over time.

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The Fluffy Assassin Enthusiast
The Fluffy Assassin
Posted

To start with, call a suicide help line. Google produces 1-800-273-TALK; call, talk, jump up and down and throw things. Anything but the ultimate bad decision.

Then just cook gluten free. Go simple: meats, vegetables, rice or potatoes, salt and pepper. Take a multi-vitamin. Get sublingual B-12 and take it every day.

Just breathe. This isn't as hard as you think it is. It sucks that work and family aren't as supportive as you'd like, but you don't need the support. You can do it yourself. You're stronger than you think you are, and the boulder you're trying to roll up the hill is really a pebble. Just think of it that way and you'll pretty quickly find it to be true.

Otherwise, the advice you've already received is very valuable. If the doctor isn't competent, change doctors. If your company isn't giving enough leeway to what clearly is a disability, talk to a lawyer.

Good luck to you; here's hoping everything comes together for you much faster than you expect.

The stress from trying to manage my condition and my life is going to drive me crazy. I can't take it anymore. I'm struggling with depression and every time something bad happens I just want to kill myself. My job is not being understanding of my situation if I accidentally eat wheat I am disabled for about two days and find it difficult or impossible to work. I'm already getting attendance warnings, my doctor gave me a hard time about filling out my FMLA paperwork and then filled it wrong and my claim is being denied for insuffiecent information and my supervisior is gonna give me some other step along the disciplanary road and my family just is no help at all.

This has all gone on for so long...I've had absolutely enough and I don't know what to do.

MightbeCeliac's Newbie
MightbeCeliac's
Posted
  • Author

Hey Guys,

I'm feeling much better today. And you guys have given me some good info. Its so hard some days. The most frustrating things is when I feel great, I feel great and I think to myself I'm not sick I can do this, this is nothing; like the one poster said this is a pebble. But when that pendulum swings my life seems like a never ending nightmare and the worst thing is that the world seems so cold, so indifferent to it all.

But I am definitely going to see about a lawyer or advocate.

I do have a few questions about some of the advice offered:

Where do I find and advocate?

I don't have a lot of money. Can I find a lawyer inexpensive or pro-bono?

Where do I buy sub-lingual B12?

mysecretcurse Contributor
mysecretcurse
Posted

I feel you! It's hard. I'm almost 2 years in now... and it's still hard. It's sorta a 3 steps forward, two steps back kinda thing sometimes. Big, big learning curve. I'm having a flare up of my symptoms right now (not sure why, I think it's because I tried eating dairy again, and even though it was only goat cheese Im still having a flare).

ravenwoodglass Mentor
ravenwoodglass
Posted
Hey Guys,

I'm feeling much better today. And you guys have given me some good info. Its so hard some days. The most frustrating things is when I feel great, I feel great and I think to myself I'm not sick I can do this, this is nothing; like the one poster said this is a pebble. But when that pendulum swings my life seems like a never ending nightmare and the worst thing is that the world seems so cold, so indifferent to it all.

But I am definitely going to see about a lawyer or advocate.

I do have a few questions about some of the advice offered:

Where do I find and advocate?

I don't have a lot of money. Can I find a lawyer inexpensive or pro-bono?

Where do I buy sub-lingual B12?

You can buy sublingual B12 at a drug or food store or at a health food store. Make sure it says it is gluten free. If you have a Wegmans near you I know they carry it.

As for the depression issue, there could be a couple of things going on. One is withdrawl from the gluten. Another is that for some of us gluten is a neurotoxin and can actually cause depression and anxiety. For me a good glutening will cause a short lived very dark depressive episode that now fortunately lifts quickly. Before I was gluten free my depression was a constant that I thought I would always have to struggle with. Hopefully since you do say you are feeling a bit better the depression will soon be a thing of the past.

Ahorsesoul Enthusiast
Ahorsesoul
Posted
I'm feeling much better today.

So glad you are feeling better. I was worried about you. Now you know that those dark days will pass.

If you can't afford the price of the B-12, take down the phone number on the bottle/box. Call the company to see if they have a program that can help with the price. A lot of drug companies do this because the person they help will talk positively about their product. So they end up with the best advertising program they can get at very low cost to them.

Lawyers, at our court house, once a month they have lawyers who will give advice for free. Call the court houses in your area to see if any of them offer a program like this.

MightbeCeliac's Newbie
MightbeCeliac's
Posted
  • Author

Thank you everyone. Today did something I should have done months ago and made an appointment with a Celiac specialist hopefully they will help. I don't like to think of myself as disabled or not in control of the situation. *sigh*

I'm worried about the celiac specialist though because my diagnosis is based on a combination of me feeling better while gluten-free,my health history and my mother's health history. If they want me to do a gluten challenge or something I don't think I could, though I have to admit I do miss deep dish pizza.

I'll definitely call some of these supplement and drug manufacturers and see if they will give me some kind of assistance because the money thing makes this that much more difficult.

Desperate and pathetic though that first post sounds I'm glad I made it. I need help with this...

MightbeCeliac's Newbie
MightbeCeliac's
Posted
  • Author
So glad you are feeling better. I was worried about you. Now you know that those dark days will pass.

Thank you. Its nice to know that someone whose never seen or met me before would be thinking about me. And yeah those horrible feelings do pass. My sitiuation hasn't changed at all and I'm definitely still worried, but right now its not so overwhelming- I don't want to jump off a building or anything...

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