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Anyone Receiving Social Security Disability?


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#1 GregC

 
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Posted 11 September 2008 - 12:54 PM

Is anyone receiving social security disability benefits for their celiac disease? If so how hard was it to get and how long did you have to wait. I have been our of work since February 2008 and thought it might be possible to get this coverage as I cannot work right now and need some income. Can anyone with any knowledge of this share their story.
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#2 sickchick

 
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Posted 11 September 2008 - 03:53 PM

I have been on SSI since May 2003. I was accepted right away. (it took a total of 3 months for them to get situated)
I hadn't been able to work since 1996? due to my body being out of control! B)
good luck Sweetie
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Collette

Positive Bloodwork Oct 1st 2007. Gluten-free 3 YEARS Oct 1st!
Dairy & Soy free since Dec 1st 2007.
Potato free since January 3rd 2008.
Remaining Nightshades since April 1st 2008. Back on September 2010. :)
Developed Rice & Tapioca & Corn Intolerances...
NO Carageenan.

In a constant state of evolution... sending love! :)

#3 ravenwoodglass

 
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Posted 11 September 2008 - 03:55 PM

Hi Greg and welcome to the board.
I don't think that celiac in itself is going to be something that will qualify you for social security. However many of us have conditions that are related that may be. The best folks to talk to would really be social security themselves and your doctor.
What sort of problems are you still having? If you have been gluten free since Feb and are still having what seem to be gluten related issues you may want to reaccess how gluten free you are and/or the possiblity that you may also have another intolerance. The most common being soy and dairy. Many doctors don't tell us how careful we need to be. They don't always mention checking things like shampoos and toiletries, or that sometimes stuff like art and craft supplies or home remodeling materials can be sources of cross contamination. There are some of us that don't tolerate gluten grain vinegars and alcohols. There is no way to tell about that unless you stop consuming for a while and then try them when your not eating anything risky.
Do you live with folks that consume gluten? Do you have a significant other that wears lipstick? How much processed food do you consume?
You have found a good place for information and support. Please look over the board threads and feel free to ask any question you need to. Most of us can and will heal enough to be able to live a normal life.
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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#4 Juliebove

 
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Posted 11 September 2008 - 06:48 PM

I am on disablity but for other medical reasons. Gluten is not a problem for me. Except that daughter can't have it! :)

I can tell you a bit about the process though. You will have to fill out a LOT of paperwork. You can print the papers off online and I think perhaps some of the process can be done online, but you will still need to do some stuff by hand. They will need the names, addresses and phone numbers of any and all Drs. you have seen for your condition(s). They will contact the Drs. for you and they are paid to submit your records to them. I do remember that being the worst part of it. After I gathered all the needed information it was still about 8 hours of filling out paperwork. Tough for me because it is difficult for me to sit like that for any length of time. My muscles tend to lock up if I stay in one place for too long.

They will want to know about your daily life. How long it takes you to do things. Like walking. Your pain level. How much you can lift. Stuff like that. They will want to know about your work background and why you can not now do the job(s) you were trained to do.

Once you have sumitted your paperwork to them and they have heard back from all your Drs., they will set up an interview with you. If you can not come into the office, simply tell them this and they will do the interview over the phone. I have heard in some cases they will want you to see one of their Drs. I didn't need to do this.

You will need to send in some things to them. I believe it was my birth certificate and perhaps social security card. They were sent back to me rapidly. If you have a child, you will also need to send his or her stuff in as well and fill out some paperwork for them.

After that it was a very quick process. I claim was accepted and I believe I got my first check a couple of months after that, including some retroactive. Alas, I didn't get as much as I could have had I filed the claim sooner, but... It also took me that long to get my last diagnosis. I went to Drs. for years and was constantly being misdiagnosed.
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#5 GregC

 
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Posted 11 September 2008 - 11:33 PM

Thanks for all your help ladies and gents. Looks like it is going to be a long process. I was just learning about being "Gluten free,Soy Free,Dairy Free" since January or so, but didn't get the swing of things til a couple months ago. I had a 100% processed food diet before hand. Also just figured out milk and or casein makes me groggy and dizzy as well, so now have to drink cowboy coffee with no milk lol. I have a sleep apnea type condition which impedes my sleep all the time, can't wake up early to go to a job,can't walk more than 1/2 mile then get dizzy and feel faint although eating right,joint and muscle aches when poisoned,etc. My roomates eat tons of gluten stuff all the time and I might still be getting cross contaminated while preparing in the kitchen..who knows..but being a former truck driver and being on the road all day {local route} I can't just eat gluten,soy,and milk free every 4 hours like I need to function right or I get diabetic type symptoms and almost pass out..it all hit me in 2004 and never seemed to have problems til then. I am not looking for a handout by any means but if I am entitled it through the points i've saved up over the years and I am truly involved with a disabling food allergy which limits my daily activities I feel this will help pay my bills til I get better. I have a phone interview with SSI next friday afternoon. Thank you all again! I appreciate it greatly!---Greg
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#6 JJ200

 
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Posted 10 October 2008 - 01:11 PM

I would very highly recommend that you do a good amount of research on the net into how to successfully put in a disability claim and get benefits. There are a number of things that you can do to greatly improve your chances of being approved for benefits.

Do a google search for terms like "disability secrets", "disability tips", and things like this, and you'll find a whole lot of information that you wouldn't otherwise have found. One thing is that you personally can't make more than $940/month during the time that you are applying or you will be considered healthy enough to work and your claim will automatically be denied. Once you are accepted there is a program called the "ticket to work" program which allows you to work for up to 9 months without losing your benefits.

There is a lot to getting disability and it's important to know the lay of the land as you go into getting your first response or going into an appeal trial if you are turned down on the first attempt. It is normal for people who are by definition disabled to still not get approved the first time, sometimes you have to appeal even if you have a totally legitimate claim.

Right now I am soon to either be denied or approved and so I'm studying up quite a bit on the appeals process if I'm denied. One good site for this is disabilityappeal.com, and there are many others. There are a lot of blogs out there that can help you too with stories of other people's journey in seeking benefits.

I wish you good luck in seeking benefits, it probably would take anywhere from 5 months to as much as 2 years for you to be approved, you should know this going in to the process.
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#7 still tiredofdoctors!

 
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Posted 11 October 2008 - 10:35 AM

I was surprised at how quickly I was granted disability benefits. I have "neurological celiac" and because of it, have significant cerebellar damage.

I insisted when talking with my neurologist that I was going to overcome this, despite his suggestion on my second visit (!) that I apply - I was forced to close my Physical Therapy practice due to my limitations. After two years of his questioning at each visit, I finally "buckled" and applied.

I phoned my locial Social Security office in late January of 2007 in order to ask a question and they simply performed a phone interview with me, asking me the application questions. I was fortunate in that I spoke with a very kind woman who, when I described my medical signs and personal symptoms, said that she felt I underestimated my degree of limitation. She re-visited that section with me, asking me unbelievably detailed questions. I was informed by phone in February that they wanted me to undergo a medical evaluation by a Social Security physician and it was scheduled for mid-March. Evidently, there that is very normal, and a LOT of people undergo these. The waiting room was somewhat crowded!

You can imagine my surprise when, in early June, I received a check from Social Security. Two days later, I received a letter stating that I had been allowed benefits and would be receiving my first check "within two weeks".

My best advice would be to keep a binder with all pertinent information regarding your disease inside:

Collect detailed documentation with regard to how this disease has affected your ability to work; speficially, the number of days missed due to illness within the past two years (possibly four).

Document - in very specific terms - the symptoms which limit your ability to concistently perform your job tasks or hinder your ability to maintain a "normal" workday with regard to number of hours, amount of time you are able to perform your job tasks without interruption, and the approximate amount of time you would not be able to perform your job tasks within the course of a 40-hour work-week.

Keep copies of all medical records from each physician seen. Keep a separate section for laboratory and/or diagnostic procedures.

When you have diagnostic procedures performed, ask for a copy of the films. If the hospital or clinic performing the test will not give you copies, check them out "for a physician's visit". The performing entity will tell you that the films are their property, and legally this is true. Most now use computerized archiving, and will easily give you either copies or a celiac disease. Because of lack of storage space, many hospitals in our area are destroying films over a certain number of years: typically, three. (I have even had difficulty accessing previous mammogram films now - one of the types of films in which physicians INSIST they need for comparative assessment.) Once you check them out, do not return them. I have yet to have an indepenent clinic (we have "Open MRI" clinics here that market to physicians like CRAZY) or hospital contact me asking that I return their films.

These are the things that I think worked for me. I also saw this work for my patients, as well. By and large, the ones who did NOT do this had difficulty (as many as four or more rejections) receiving benefits.

I hope this helps.
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Lynne Previously "tiredofdoctors!!!", but I had SO much difficulty retrieving a lost password
Diagnosed with "Sprue-Related Ataxia" January 2005; Gluten-Free Lifestyle since August 2005 (Denial ain't just a river in Egypt)
To see additional diagnoses and what predisposed me to the seroconversin to celiac vs. gluten interolerant, view "About Me" page
"If you have to choose between being right and being kind . . . pick kind. Wayne Dyer, PhD

#8 jerseyangel

 
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Posted 11 October 2008 - 10:37 AM

Great info, Lynne!

.....and welcome back :D
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

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#9 still tiredofdoctors!

 
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Posted 11 October 2008 - 10:48 AM

Great info, Lynne!

.....and welcome back :D


Thanks! Just can't stay away from you guys - I miss you too much!
And, of course, I have heard "through the grapevine" that some of my antics - albeit NOT singular - may be needed . . . :P
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Lynne Previously "tiredofdoctors!!!", but I had SO much difficulty retrieving a lost password
Diagnosed with "Sprue-Related Ataxia" January 2005; Gluten-Free Lifestyle since August 2005 (Denial ain't just a river in Egypt)
To see additional diagnoses and what predisposed me to the seroconversin to celiac vs. gluten interolerant, view "About Me" page
"If you have to choose between being right and being kind . . . pick kind. Wayne Dyer, PhD

#10 jerseyangel

 
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Posted 11 October 2008 - 11:02 AM

Thanks! Just can't stay away from you guys - I miss you too much!
And, of course, I have heard "through the grapevine" that some of my antics - albeit NOT singular - may be needed . . . :P

Hee! Yes :lol:
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#11 Judyin Philly

 
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Posted 12 October 2008 - 07:01 PM

Great Post as usual Lynne......'still tired of doctors'
Hope this great info will be of help to you Greg. I am on SSD and got it the first time but had a documented folder 7" thick.......and it's the truth. I had other medical issues but I'm sure the documentation helped as they didn't want to research it all.

good luck Greg.

Judy
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Judy in Southern CA

#12 Mtndog

 
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Posted 13 October 2008 - 02:58 PM

These things are good to know and I am happy to see lynne back and Judy's pukey pumpkin (does the jack o'lantern have sprue?).

I've been wondering about this topic myself as between celiac and lyme, I'm pretty snockered.
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***************************
Beverly

Gluten free since 2005

In the midst of winter, I found there was within me an invincible summer.
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#13 Judyin Philly

 
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Posted 13 October 2008 - 04:15 PM

These things are good to know and I am happy to see lynne back and Judy's pukey pumpkin (does the jack o'lantern have sprue?).

I've been wondering about this topic myself as between celiac and lyme, I'm pretty snockered.

who knows Bevie........
You are an amazing warrior...........I have to keep telling you that case......your forgetting babe.
We love you and your fight against BOTH THE DANG illness at the same time.
hang tough girlfriend.
Judy
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Judy in Southern CA

#14 mslee

 
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Posted 15 October 2008 - 12:28 PM

I should probably ad they make you wait 18 months after your approval for medicare, you get financial help in the mean time but there is no medical coverage for 18 moths.
(that makes alot of sense right? <_< )

I was also surprised they approved me fist try, my Mom told me not to get my hopes up she (working in hospitals) had heard of so many denied time and time again. She said I would probably have to apply several times. But I was approved right away, I did have a huge medical file of documentation, several disabling conditions, and had worked/paid taxes/ gone to school non stop since I was legally allowed. So I am guess that is why.
One woman I spoke to at SS said "be sure you list EVERYTHING that disables you, all conditions should be listed and how they have changed your life"
Also it's like 50/50 calling there half the people I talk to are so nice intelligent and helpful with info, the other half well I will put it nicely, they are not. Ask to talk to a specialist, that helps.

Good Luck!
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#15 LIS_Guy

 
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Posted 15 October 2008 - 01:57 PM

It's such a wishy-washy process.

A friend of mine who has a rare congenital heart disorder (same as I have) was turned down repeatedly, year after year, while his health continued to decline. He ended up dying last year in a hospice, unable to feed or bathe himself, yet SSI told him right up until the end that he could get a desk job. It was heartbreaking to watch, and his wife and children were left with a mountain of debt.

On the other side of the coin, the man who drives me to my doctors appointments got SSI approved in less than three months, for a 'bad back' that he admits is already healed. He says he can't take a desk job because it hurts to sit for long periods of time, yet he kayaks three times a week and makes money under the table driving for a local service. He brags about beating the system, plays basketball, lifts weights, and says he's loving his 'free time' and 'free money'.

I almost punched him in the mouth when he was telling me all this. All I could think about is my buddy who withered away and died with no financial help, while this joker was out water-skiing and living the high life.

Plan on getting denied your first time. Almost everyone does.

LIS
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