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Disability
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I'm just curious if anyone has problems w/ being able to work full time or not work at all anymore b/c Celiac? And if so, if anyone has been on disability and how that works, if it works, etc?

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Hi. My husband has been on disability since July 1, 2005. He has disability insurance thru work though not the social security disability. He works for Comcast Cable and they provide a short term disability program that last for 6 months and after that the insurance company evaluates if you qualify for long term disability if you have opted to purchase it (I thank God every pay day that we did). I don't know how Celiacs are able to go to work in the begining - I guess you just have to do what you have to do. But my heart goes out to those who don't have a program like this to fall back on and have to suffer thru work or loose their jobs and get behind in bills - like they don't already have enough to worry about. If you have any specific questions about this type of disability I'd be glad to try and answer them and you are questioning SS disability they have several pages w/ info on applying for it on the web site. Good Luck.

Jennifer

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Hi. I don't know if this will help, but I am in the process of waiting for an appeal hearing with social security as we speak. I have celiac disease, along with MS and major depression. So I got kind of a triple whammy going here. It is very hard to get SSD, and chances are at first you will get denied, but SS lawyers will take your case if they think they will win. (they only get paid if you win) So, needless to say, I had the first lawyer I contacted take my case. That was in November, and they told me it may be a whole year before I even have a hearing. I have been off of work since October of 2004.

Also, I think everyone is different. People have different symptoms, and it affects them differently. Some people are able to go on with their lives as it were, some take years to get back to normal. I also think it depends on what job you have always done. I was always a Nursing Assistant, so this all had a BIG impact on my ability to do what I have always done.

My best advice to you is, go to your social security office, talk to a case worker there, and they will tell you what you need to do. No harm in trying. It is not something you have to be on for the rest of your life, but you have to be disabled and unable to work for at least a year.

Denise

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Thanks! Very helpful!!

Jenn2005: I will e-mail you later as I'd like to talk to you more about this...gotta run for now.

Thank you again everyone!

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Hi. I don't know if this will help, but I am in the process of waiting for an appeal hearing with social security as we speak. I have celiac disease, along with MS and major depression. So I got kind of a triple whammy going here. It is very hard to get SSD, and chances are at first you will get denied, but SS lawyers will take your case if they think they will win. (they only get paid if you win) So, needless to say, I had the first lawyer I contacted take my case. That was in November, and they told me it may be a whole year before I even have a hearing. I have been off of work since October of 2004.

Also, I think everyone is different. People have different symptoms, and it affects them differently. Some people are able to go on with their lives as it were, some take years to get back to normal. I also think it depends on what job you have always done. I was always a Nursing Assistant, so this all had a BIG impact on my ability to do what I have always done.

My best advice to you is, go to your social security office, talk to a case worker there, and they will tell you what you need to do. No harm in trying. It is not something you have to be on for the rest of your life, but you have to be disabled and unable to work for at least a year.

Denise

DENISE~

This was great advise here, & I am glad you Posted. I am disabled, and also on SSD, and have been for a long time. But, I am not on it for celiac disease. I have Bipolar II disorder, but even so, ... if I would have been diagnosed with celiac disease earlier, & had gotten so bad like I am now, I would have filed for SSD for it. Yep. Consequently, most folks I have been reading about on the Forums here, have a multitude of serious illnesses, along with Celiac. This is most unfortunate, and I feel real bad for everyone.

I would encourage anybody who is down-right SICK and having a rough "go" of their every day "exsitence" to apply for SSD. Sure, it takes time, and sure, it's a pain-in-the-azzzz, but if your health is bad, what do you have to loose? I must have been one of the more lucky ones, because I didn't have alot of problems getting my SSD. My claim went right through, and I did NOT have a fight with it either. But. There is the factor of the "time thing" and the "waiting game" & all. My problems with my illness were severe enough, that my Doctors & Medical records pushed my Case through.

There is nothing to be embarassed of, or anything to be intimidated by, with trying to file for SSD for Celiac. Most of it boils down to how severe ones Medical Case is, the amount of "paper-pushing" to get through, & also alot of perserverance! Sound Medical Records do NOT lie.... Take heart all you folks out here, & push forward for what you believe to be right. When you're sick, you're SICK, and no one is going to take care of you, but YOU~

I'm wishing good health to each & every one~

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DENISE~

This was great advise here, & I am glad you Posted. I am disabled, and also on SSD, and have been for a long time. But, I am not on it for celiac disease. I have Bipolar II disorder, but even so, ... if I would have been diagnosed with celiac disease earlier, & had gotten so bad like I am now, I would have filed for SSD for it. Yep. Consequently, most folks I have been reading about on the Forums here, have a multitude of serious illnesses, along with Celiac. This is most unfortunate, and I feel real bad for everyone.

I would encourage anybody who is down-right SICK and having a rough "go" of their every day "exsitence" to apply for SSD. Sure, it takes time, and sure, it's a pain-in-the-azzzz, but if your health is bad, what do you have to loose? I must have been one of the more lucky ones, because I didn't have alot of problems getting my SSD. My claim went right through, and I did NOT have a fight with it either. But. There is the factor of the "time thing" and the "waiting game" & all. My problems with my illness were severe enough, that my Doctors & Medical records pushed my Case through.

There is nothing to be embarassed of, or anything to be intimidated by, with trying to file for SSD for Celiac. Most of it boils down to how severe ones Medical Case is, the amount of "paper-pushing" to get through, & also alot of perserverance! Sound Medical Records do NOT lie.... Take heart all you folks out here, & push forward for what you believe to be right. When you're sick, you're SICK, and no one is going to take care of you, but YOU~

I'm wishing good health to each & every one~

I too have SSD. I had no problem getting it either. It is the matter of time and waiting for the paper work to go through. I didnt get it because of my celiacs directly either. I am also bi-polar, suffering from major depression with an anxiety and panic disorder. I have these things to the point that they are dibilitating. I find out now after my DX of celiacs in October 2005 that all these emotional disorders could be directly related to my celiacs. grrr... makes me mad that no one found this disease in me earlier. I suffered so much thru my mental illnesses. But now all I can do is be happy I know now and continue to take care of myself and take my medications. I am on quite a bit, but am not allowed to come off of any until I have a stable 6 months. I keep working towards this. I also think that SSD goes by case severity. I never had to use a lawyer or anything. I also think I was lucky. I know it cant hurt to get in touch with your local office and put in an application for SSD. I wish you the best of luck.

Tinker

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I AM ALSO ON SOCIAL SECURITY DISABILTY. I HAVE SEVERAL HEALTH PROBLEMS BUT ONE OF THE ONES THAT REALLY KEPT ME FROM WORKING WAS IBS. I SHOULD SAY THAT IS WHAT I HAD BEEN TOLD FOR YEARS WAS WRONG. NOW I KNOW THAT IT WAS CELIAC. SO I WOULD SAY THAT YOU MAY HAVE A GOOD CHANCE OF GETTING IT FOR CELIAC IF IT IS KEEPING YOU RUNNING ALL THE TIME AND CAN NOT STAY OUT OF THE BATHROOM. I THINK IF IT IS REALLY BAD ALL THE CAN DO IT SAY NO. NEVER HURTS TO TRY FOR IT. I WAS TURNED DOWN THE FIRST TIME AND THEN DID AN APPEAL MYSELF WITHOUT A LAWYER. GOT IT THAT TIME. THE WAY I LOOKED AT IT I COULD NOT GO BACK TO WORK ANYWAY SO WHY NOT KEEP TRYING FOR IT.

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Im on SSI for my celiac disease, I have got a little better since going gluten-free but I have developed panick attacks because of the constant need for a bathroom. I just started getting SSI this month, It took a long time! I live in Wisconsin. I would say if you really are not able to work apply until you get it and just be honest!

Jennifer

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YES YOU MUST ALWAYS BE HONEST WHEN TRYING FOR SSI OR SSDI. THEY DO CHECK EVERYTHING VERY CLOSE ON THOSE THINGS. BESIDES IT IS BEST TO BE HONEST TO START WITH. WHO NEEDS THAT KIND OF PROBLEMS ON TOP OF HEALTH PROBLEMS.

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hi i was wondering ? do u have to have been working and paying into ss before u can get disability or can anyone claim . the reason i ask is because am british have only worked for 2 yeas in this country got too sick to work and have been out of work since, if i was in my country i know i wouldnt have a problem getting it but am not sure on how it works here, plus i have been diagnosed with celiac and i also i seizures which am sure after having them as often as i do its now epilepsy brought on from lack of vitimins for over 2 years of been undiagnosed. i want to go back to work but worry about a seizure . and i sit at home wondering if i should except the fact i wont be able to work but i need the extra cash also . does anyone know thanks liz

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I applied for SSI which is supplemental security income, I had to apply for SSI instead of Social Security Disability because I had not worked long enough to get any work credits, so I think you would be able to do the same, that is what SSI is for, its for people who cant get SSD because of lack of work or whatever other reason.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
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    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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