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Anyone Receiving Social Security Disability?
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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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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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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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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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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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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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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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Great info, Lynne!

.....and welcome back :D

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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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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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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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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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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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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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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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Lis so sorry about your friend. That is terrible! Sometimes it seems those who need it most are the ones who are unable to get help. :(

wishy washy is a good way to describe the process

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That's nice of you to say, mslee.

Unfortunately it just is what it is. We all know people who abuse the system and get benefits where they are not needed, and we all know people who desperately need help but can't get any whatsoever. My friend Tommy worked hard his whole life, paid his taxes like the rest of us, and died waiting for a heart transplant while SSI continued to tell him he could 'get a desk job'. I guess it hit me especially hard because I have the same disease and I am heading in the same direction. Being in heart failure at the time, and having to listen to this bozo brag about beating the system kinda pushed me over the edge.

If he wasn't driving the car (and hence had my life in his hands) I may have actually smacked him. LOL.

You take care,

LIS

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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

Hi my name is Ted. I am a 36 year old male from Michigan. I have been feeling horrible since April of 2007. My primary care physician kept telling me it was panic/anxiety. So I went on all of the SSRIs that they prescribed to me. They also prescribed me Xanax. A couple of months later they found out that I had hypothyroidism. So I continued on all of these medications and continued on for 7 months having extreme abdomial pains. Finally

I said that there is no way that this was anxiety and demanded a referral to a Gastroenterologist. I had a Colonoscopy and an Endoscopy done along with a blood test. I was diagnosed with Celiac Disease on July 14 2008. Blood Iga levels were 600 and normal is 90-397. All of those months that it was damaging my body and I still don't feel right. Sore everyday. I applied for disability for the hypothyroidism and panic/anxiety but was denied. I am re applying now because I didn't know that I had Celiac Disease the whole time. I'm sure they will try and fight me on it but I cannot work feeling like this.

My bones are sore, super fatigued, tingling in my arms and legs and head. I was just tested for mineral deficiencies and waiting for the results. I'm glad to see that they found in your favor. I hope that they will for me too. Ted.

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Greg,

I've been on SSI since April, but my case is pretty severe. I am unable to eat at all due to Celiac Disease and many food allergies and intolerances. For the past 17 months, I have been on IV nutrition. I was accepted in less than two months.

I'm not sure if Celiac Disease alone would qualify for SSD or SSI because according to medical opinion, it is curable with the gluten-free diet. Is Celiac Disease the only illness that in keeping you away from work, or do you have other health issues? Either way, it's always worth a shot. I would suggest doing some research online about the best way to file a claim. There's a lot of great tips out there. Just make sure you have plently of documentation from your doctors to make a good case for yourself. It's not your fault that you're unable to work, so make sure your doctors understand the severity of your condition. Good luck, and take care,

-Brian

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Greg,

I've been on SSI since April, but my case is pretty severe. I am unable to eat at all due to Celiac Disease and many food allergies and intolerances. For the past 17 months, I have been on IV nutrition. I was accepted in less than two months.

I'm not sure if Celiac Disease alone would qualify for SSD or SSI because according to medical opinion, it is curable with the gluten-free diet. Is Celiac Disease the only illness that in keeping you away from work, or do you have other health issues? Either way, it's always worth a shot. I would suggest doing some research online about the best way to file a claim. There's a lot of great tips out there. Just make sure you have plently of documentation from your doctors to make a good case for yourself. It's not your fault that you're unable to work, so make sure your doctors understand the severity of your condition. Good luck, and take care,

-Brian

HI Brian,

I'm so glad that you got SSI

I thought you wouldn't have any problems getting on

did you ever figure out if you had SOD or did you get any help on that forum?

hope your doing better

haven't seen you one much.

course, i haven't been either.

much luck buddy

Judy in Philly

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Hi Judy!

Thanks, it's nice to hear from you. I had one doctor who said I may have SOD, but if I do, it's SOD type 3, which he said only has a 10% surgical success rate. But I may see a new doctor to discuss the issue. Anyway I hope all is well with you! Take care,

-Brian

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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.

Hi Greg ,my wife filed disability in Sept 08 .She has been denied 2 times. Her problem is not only she can`t eat gluten, but she can`t breath it either. She can`t breath perfumes ,colognes, make up , we can`t have wheat bread in the house. She has an asthma attack when she gets in contact with any thing with gluten. She has had to change all makeup and shampoos to gluten free. Her family Dr and her Enterologist have written letters of diability. We haven`t been out to eat since her diagnosis . I can`t go through drive through and get a burger if she is in the car with me. Our next step is a lawyer. She had to give up a good paying job with insurance and benefits because her job was in a plant where they produced frozen dinners. jbyrd@cswnet.com

Jmaes Byrd

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Saddly that is how SSI seems to work. Some people are just to sick to go through the work of getting it. I know someone who got it after a few times after getting a lawyer. Cant you get it for uncontrolled diabetes? Good luck

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Hi. An up-front disclosure that I work for this company, but I think the people who do the disability work are really great. And the website has a bunch of good information, so if anyone is interested in applying for Social Security Disability Insurance check out www.sscdisability.com. And if I can offer any personal guidance, I'm happy to do so. Just send me a pm.

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Saddly that is how SSI seems to work. Some people are just to sick to go through the work of getting it. I know someone who got it after a few times after getting a lawyer. Cant you get it for uncontrolled diabetes? Good luck

Yes it is sad how the system works except when it doesn't. I live in Ga. where we have the worst record of any state for filing and receiving in a timely manner. Personally I I saw my ALJ this past Wed. 4/03/2013 so wish me luck I was told that I would be receiving the decision ny mail in 6-8 weeks. I originally applied in Oct. 2009 have been turned down twice applied for an appeal each time. It often looks like they just hope we all get fed up and quit trying, if mine doesn't go through this time I have one appeal left per my attorney. I have Celiacs, COPD, Fibromyalgia, many chemcial sensitivites but that all of us I'm sure, arthritis and suffer from anxiety and depression and I almost forgot that the hypertension has all but killed my eyes use a cpap machine every night, I always reply when asked about my depression that wouldn't you be too but then again I always try to see the bright side of things because there are a lot of people that have it worse. I'm thankful to have found this site. Don't give up, get an atty and keep smiling

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    • Hi Aly and welcome You may want to repost this in a new thread, that way more people will see it and can advise you.  I think you would be much better off getting the celiac test now, if you stay off gluten you will need to go back on it and that can be much harder. That said, loads of your symptoms look like they could be gluten related.  I had a persistent 'trapped nerve' for instance under my eye which would twitch like crazy. Since I went gluten-free doesn't happen any more.  Best of luck! Matt
    • Your scalp sounds like seborrheic dermatitis. I have that and although its better after going gluten-free its very persistent. The dermatologist recommended Nizoral shampoo for it and it does help. I think dairy has a big part to play with skin problems, for me at least. 
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
    • Just found this site today. Did you ever find one? I was diagnosed this year and I live on Oahu.
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
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