How Do They Do It?

[Adelle]

Dunno if this is in the right section... Feel free to move it.

Pre-diagnosis, I went through a lot. There was a period of time where I lived in my car and had $100/month in food stamps. I ate cup O noodles (.79 each) 2-3 times a day. Maybe a can of beans or corn occasionally.

If I HAD known about celiac disease then, what would I have done???? Free food places pretty much gave bread and noodles. I couldn't do it. I have no idea how it's done.

I'm in a much better situation now, but I can't leave these thoughts behind. I really feel like it's hopeless. Like if you don't have the $$ to eat gluten-free then it's okay if you get sick and (eventually) die. I called a local homeless shelter, they "couldn't accomodate something like that". So I couldn't even volunteer there and help someone in that situation..... Any ideas?

And don't say "just get a job" I hate when people say that, as if it were so simple.

[darlindeb25]

Adelle--nothing in life is simple! I'm sorry, yet many people in those positions simply do not want to work, they want the rest of us take care of them. I have 2 sons that live off the system and I am not proud of that fact. They are both perfectly capable of working and making their own living, yet they feel they deserve to be given everything. I do agree, many who are on the streets are the ones that the system has failed. There are way too many people getting help that do not need it, while so many are being denied, when they are so desperate for help. My last landlord abuses the system. He has a good job, his wife works, plus was taking college courses for teaching, they have this huge, beautiful home and he was charging me $750 a month, under the table for 2 rooms--his kids have HealthFirst, state assisted insurance--dental, eye, and medical. Yet, the guy living in his car can't get help. It's a sad world we live in. I work hard for where I am at and I have been dealt some hard blows in life, yet was never given any assistance, because I worked and made $20 too much for help. I understand, I truly do. Like I tell my kids, you put your jeans on, one leg at a time and get about life. People have their priorities all out of line. I read posts in many forums and so many complain about not having enough money for this or that, yet they have cable tv, and internet, and eat out all the time--things I could never have until now and they are part of my rent. Well, because of celiac's I never eat out, never enjoyed it anyways, yet it was not a priority.

Back to the original question, you do what you gotto do when you gotto do it and deal as best you can.

[ravenwoodglass]

You can help, you may not be able to do anything at the free lunch places (many of the poor won't go to those anyway) but there is lots you can do to help celiacs that need it.

I donate to my local food bank. Many are not aware that you don't have to be homeless or on assisstance to get help at one. I donate rice, both instant and regular. I donate canned goods, veggies and fruits. I donate buckwheat cereal, and gluten free broths. I donate Dinty Moore Beef Stew and their Scallped Potatoes. I donate peanut butter and jelly and the occasional gluten-free bread. And I mark the stuff with a black marker as gluten-free, or in a red marker as not gluten-free for the stuff I buy then call on and can't consume. I tell them that I do that so we don't accidently eat the stuff but it is really so those that need gluten-free food can get it without worry.

I was raised in poverty, my Mom certainly did not choose to be an undiagnosed celiac and I can now fully understand why the only jobs she took, even with her intelligence, were housekeeping. Despite what many think most do not choose to be poor. And I know how hard it is to fight for a decent life when you come from a poor family. I also know what it is like to be homeless, it was a very long time ago but I certainly was not in that situation because I didn't want to work. I slept in a burned out trailer for 2 weeks till I finally found a job then slept in that place's office for a month till I could rent half a trailer. I lived in it for a year and never could get heat or lights turned on. Thank goodness I had water, a cold shower is better than none. If I had known then I needed gluten-free I would have gone to a food bank.

[missy'smom]

I'd like to have someone advocate for my mother. She lives in a nursing home and they can't handle gluten-free. If I lived in town, I'd bring her gluten-free meals and sit and eat with her everyday. I live out of state and have alot on my plate already so there's not alot I can do. It breaks my heart. She will die from this and a very long painful death it has been. Because of divorce and illness, she found herself nearly homeless many years ago. She was just one very very small step above it. She lived in a shack the size of a storage shed. She couldn't hold a job, had a nervous breakdown and ended up being a ward of the court. She had no family to help her. She is an inteligent woman. She was a teacher. She's lived in various institutional settings ever since. There was a homeless woman that always hung around the grocery store where we used to live and everyone made fun of her but I always thought that could have been my mom and could be someone else's mom. Fortunately my mom lived in a small town, if she had been in the city she would have ended up on the streets.

[ravenwoodglass]

I'd like to have someone advocate for my mother. She lives in a nursing home and they can't handle gluten-free. If I lived in town, I'd bring her gluten-free meals and sit and eat with her everyday. I live out of state and have alot on my plate already so there's not alot I can do. It breaks my heart. She will die from this and a very long painful death it has been. Because of divorce and illness, she found herself nearly homeless many years ago. She was just one very very small step above it. She lived in a shack the size of a storage shed. She couldn't hold a job, had a nervous breakdown and ended up being a ward of the court. She had no family to help her. She is an inteligent woman. She was a teacher. She's lived in various institutional settings ever since. There was a homeless woman that always hung around the grocery store where we used to live and everyone made fun of her but I always thought that could have been my mom and could be someone else's mom. Fortunately my mom lived in a small town, if she had been in the city she would have ended up on the streets.

Is there a Celiac Support group near her? Or perhaps a religious charity that might be able to help with this? Perhaps they could oversee as many of her meals as possible or people in the support group could volunteer to cook a little extra at dinner and bring it in to be reheated.

I wonder if places like nursing homes might be open to knowledgeable celiacs coming in and either teaching the cooks or volunteering themselves to set up a secure prep area and prepare a meal. I know there must be so many others in that same situation and I myself have a mortal fear of hospitalization or a nursing home.

I was a chef for years, even worked in a hopital kitchen and then worked in education, I should have thought of this myself a long time ago. I've felt very useless lately and you opened my eyes to something I may be able to do.

[TinkerbellSwt]

I understand what you went through. I tried to get foodstamps for me and my son. We are on permanent disability and are on a fixed social security income. I know this is better than some, but it isnt much when you take in rent and doctors visits, the "system" doesnt seem to realize that a $20.00 copay can make or break me some weeks. I finally got PAAD for my scripts, b/c some months it was eat or get medicine.. I cant live without my medicine, I would be institutionalized and lose my son..

I got turned down for foodstamps.. I made too much on social security! It is absurd!! We are not a poor family anymore as Colins father lives with us now, but his check is what we live on, and he doesnt make much. He works for a supermarket, full time though, so he brings in just enough to live on.

When I called the state for help, they told me food pantry too. I said to him me and my son are celiacs we cant go get bread for sandwiches, and a lot of the canned foods.. he basically said oh well.

The good news here is my son is covered medically thru his dad, which is decent coverage, but when I have a hospital visit or Colin does.. look out.. the bills come rolling in, we are in collections and such for many of them.. its crazy.

I am sorry I ranted on.. I just feel for people situations... and it isnt fair for celiacs..

[Jestgar]

I've wondered about this too. I work across from the county hospital and often go to the conferences where the case histories are frequently about homeless people. There was one case presented where the guy had been homeless for many many years and all that time had been a strict vegan. That kinda made me think that you could do gluten free on the system, but it would take an incredible amount of dedication to your diet.

[NoGluGirl]

Dear All,

What Deb and Adelle spoke of is all too familiar. In my hometown, we now have 5,149 homeless. There is no reason this should occur. Even worse, many people with real physical disabilities prevented from working due to their ill health (myself, my mother's best friend, and my best friend's mother) are denied assistance. Then, people who are just lazy or do not really need it get it! Take for instance, a former preacher who cheated on his wife and got kicked out of the ministry! I'm sorry, but being a man-whore is NOT a disability! I have been ill for years and just found out I am Celiac, plus I had my gallbladder out, have Yeast Candida, Fibromyalgia, and Thyroid trouble. That is just some of it. There are other conditions that may be causing this stuff. Lyme, Babesia, mercury poisoning, Leaky-Gut, and some other things have yet to be tested for. I cannot afford any testing! I have no insurance. Aunt Chris (my mother's best friend) has gallbladder problems, torn rotary cuffs, has had knee replacement surgery, Sjogren's Syndrome, Asthma, Rheumatoid Arthritis, Osteoarthritis, Polymyalgia, Fibromyalgia, numerous ulcers in her stomach and esophagus, and she was denied. Vicki (Ashley's mother) has corn sensitivity, diabetes, IBS, Cold-Autoimmune Hemolytic Anemia, Osteoarthritis, and Degenerative Bone Disease. She too, was told by her doctor she cannot work, but he refused to even try to get her disability. Yet, his wife is on it! And here I sit in a sucky situation, with sucky people to deal with! (This is family.)

I think it would be great if Adelle started such a program. You know, I bet there are a lot of Celiacs that are homeless and cannot get aid! Some of them may even be able to work once they get well! Wouldn't that be wonderful? I have a proposal for the homelessness problem here. There are a ton of abandoned buildings just lying around. Some are inhabitable. The problem is, no one is using them!

We could build places for people to live until they get back on their feet. That is what I am going to call it! That Back On Your Feet Program will teach job skills, if they do not know how to read, they will be taught, and there will be guidelines. Obviously, we need to do something to avoid the program being taken advantage of by those types of people Deb spoke about. I hate it when I hear people take the attitude all of these people are lazy. Relatives of mine act that way. It is infuriating! I would rather help 7 who deserve it and 3 that do not than none at all.

Dear missy's mom,

Your mother's condition is covered by the Disability Act 504. Colleges have to comply by law to students' needs with the disease. Why shouldn't a nursing home? You may have a legally binding need here. Google Laws That Help Celiacs. It should pop right up.

Sincerely,

NoGluGirl

P.S. Ravenwoodglass and Adelle, you are inspirations! You should be proud of so far you have come!

[Phyllis28]

After reading this post, I will shortly be contacting the local food panty. According to their website special food needs can be requested. I am going to start donating gluten free food that everyone can use.

I am also going to ask if they will contact me if anyone has needs either gluten free or wheat free needs. This food pantry has people make appointments so they should be able to give me enough notice go shopping for specialty gluten free food for people who have made this specific request.

This is one small thing I can do. I am thankful everyday to be blessed with good health, as long as I stick to a gluten free diet.