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Marlene

Just Want My Life Back

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First let me say thank you to everyone for sharing. It does help to be able to express my feelings and frustrations.

Unfortunately, dispite knowing others suffer too, I still have to say that this is no way to live. Being hungry or sick all the time. Left behind as family and friends live their lives. Asking everyone in the household to change (i.e. putting a "stop" to others in the household eating bread - sorry, I don't have the right to demand they change because of me). Fearing eating and then suffering the consequences when you do. I'm miserable and, like it or not, I make those around me miserable too.

Suggestions of foods and gadgets are nice but when I say I can't afford them I really mean it. I'm unemployed because of this disease. I can't commit to a job that requires me to work in a setting outside my home, not to mention the problems driving from home to another location. I've made emergency bathroom stops at some pretty disgusting places just minutes after leaving the house all because of the cramping and diarrhea.

Vitamins, supplements, wholistic medicine, tests, procedures, etc.? Forget it. Being unemployed and uninsured, I also can't afford doctors, medicines, medical tests or any other such thing. I have four broken teeth, most likely because the years of suffering undiagnosed celiac disease interferred my ability to absorb nutrients, -- but, of course I am not able to afford dental care. My glasses are scratched so bad I only wear them to drive so I see the world with unfocused eyes all the time.

I'm not stupid! I am 54, have master's degree and have worked as a nurse for over 22 years. But thanks to this disease, I am a leech living off my family. I'm not sure how I will survive when the unemployment benefits end in two months. I filed for Social Security Disability but they turned me down saying they acknowledge I "think I'm disabled". In my appeal, I've asked them to remember their worst days sickened by an intestinal virus and recognize that is MY EVERYDAY. You know those days when you hold your gut groaning and wishing you could die to get relief from the misery. The difference is that the sufferer of a virus knows they will eventually feel better while I know that my tomorrow will bring no relief.

I read all the product labels to avoid eating hidden gluten. All those words that I can't pronounce and don't understand mean nothing to me. I truly get tired of this routine. I get frustrated when I crave a bowl of tomato soup and know I can't just open a can of Campbell's soup because it contains gluten. I can't even grab a McDonald's milkshake. Why on earth would that contain gluten??? I've wasted enough money trying "gluten-free products". Tasteless cookies, "crackers" so hard that I fear breaking another tooth, bread that tastes and feels like cardboard, etc., etc.

I went to doctors, suffered the indescribable pain caused by the "cleansing prep" and humiliation of allowing someone to stick a pipe up my tush and down my throat. What did I get? A two second announcement "You have Celiac Disease" and prescription to consult with a dietician. I saw the dietician and the only thing I learned was there is no hope. Any food I consider tasty is out of the question and the choices I'm left with is stuff I've hated all my life. The list of gluten-free foods is short and unappetizing. Hence, I search the frig, freezer and cupboard day in and day out looking for something - ANYTHING -- that will satisfy me. Eventually, I give up and choke down something nasty and unsatisfying like cooked carrots just to make the hunger go away.

No, in my previous life, I didn't eat healthy but the food I ate was satisfying. The day I was diagnosed was the day I received a life sentence to a prison of pain, unmet needs and misery. The only thing my doctor gave me was a name to my tormentor. I can't live this way. I'm tired of living this way. I don't want to live this way.

Dear legg1999,

Everything you wrote is what goes through my mind (and likely everyone else) on this board on a daily basis. My family is not supportive much of the time. My mother has been a complete you-know-what the whole time. It makes me hate her. She eats things in front of me, and does not give it a second thought. I am furious. I am hurt. I am a hypochondriac because a speck of the crap called gluten can make me violently ill. I am tired of being disrespected. Worse, I am stuck here with them. I am too ill to work, as are you. I do not have insurance either. I too, went through those hellatious tests that nearly kill you. It was really for nothing. Disability is impossible to get for those of us who actually need it. People who do not deserve it get it more. I am only 24 years old, but feel we are kindred spirits. We know mental anguish, sadness, and pain. We know deprevation. We know discrimination. The boredom you have experienced culinary-wise is something many relate to. Eating becomes a chore. Even when you are hungry, you hold off as long as possible knowing what you eat is not going to satisfy you or taste good. The specialty foods are too expensive for people like us. Things feel so hopeless. Perhaps 2007 will be a better year for us all. I am ready to be prosperous, happy, healthy and independent! My business I spent all of my Christmas and birthday money on is not happening. I have not received one lousy order yet! I will owe $50 a month until it is paid off now.

How will I get the money? Robbing a bank seems to be the only answer, but knowing my luck, I will get caught. The one wrong thing I do in my life, I would get caught. Jerks get away with it all of time, taking the Lord's name in vain, and manage never to suffer as we do. Why? Why can't God let us have something? Sometimes I ask Him "Do you hate me? I know you are up there! Do you hear me?"

Every day feels like a big screw you from the universe! I cannot remember the last time I was happy.

I hate everyone and everything. At least I know that someone else knows how I feel. That is one thing we can both be grateful for.

Sincerely,

NoGluGirl

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Well it seems that my well intentioned wording was not well received. Re the no toast, it is the most common way to get cross contaminated, if you do not keep a gluten-free kitchen you are going to be constantly sick. Your husband could also have celiac and not have any symptoms. If he wants a healthy happy wife I am sure that he would be willing to have a gluten-free house. The gluten-free diet is the healthiest way to eat. I am sure that for the lunches that he eats out, or a quick trip to the fast food, or bakery while out running errands would keep him happy with those wheaty treats.

It is a decision that each person has to come to themselves, but when you get tired of being sick & think that you are worth the effort of the whole family to keep you well, you will know what you need to do.

I am sorry that there are several of you on here that are depressed. I do not have any insurance, I work contract, and my only nephew, a young doctor recently died in an accident. My baby sister and her husband's only child. So we shed a good amount of tears. But my sister chooses to put her energy towards building a big scholarship fund for the clinic where her son worked.

To compensate for my lack of funds and resources, I exercise everyday, take a B12 (get them at Walgreens' when on sale - Nature Made brand) everyday, and eat a wonderful diet of healthy foods. I also keep a good attitude - most of the time.

Your life is a series of choices. I choose to educate myself about celiac and I choose to learn a new way to cook, & I choose to keep a gluten-free house so that I can cook for others & not make them sick, & I choose to have a good attitude.

Anyone that cannot afford gluten-free pastas and things will be healthier for that. If you can eat rice or potatoes that is really all you need. I saute onions, celery, bell peppers, add any leftover meat I have (I cannot eat beef), pour in a jar of classico pasta sauce, add some fresh herbs & serve over rice, if you can eat dairy some parmesan cheese is nice.

I am 60 years old (who wants to hire anyone that old!), I am blind in one eye & I limp from a broken knee that I had 1 1/2 years ago, I have 5 screws & a metal plate in that leg now. Besides gluten I have a ton of other food allergies. Then I have a whole bag full of personal problems. So if I wanted to I could spend a lot of time in self pity, but it just seems like such a waste.

To the person that is trying to get disability, there is a book on disability & applying for it. Did you read up on it? Any disability claim is automatically turned down, even if the prognosis is death. You have to know your rights & appeal etc. You also have to keep a daily log of your problems and your life. I know that most people think that you paid for disability & you are due it, but that is not true, the government tries to not pay it to you, you can fill in the blank for the reason. remeber this is the same government that has sold the population on how good wheat & dairy are for you... It can take two to three years to get your disability benefits.

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Hi, Marlene,

I'm sorry you're having such a tough time right now. Have you considered other food intolerances in addition to gluten? Many here are also intolerant to casein; lactose intolerance can cause similar symptoms as well and is extremely common even in people without autoimmune disorders.

I have read here that many celiacs continue to have "glutening" symptoms until they stop eating dairy as well, but most seem to be able to add dairy back into their diets after their instestines settle down.

Lectins, nightshades, and legumes also seem to be common problems here.

Good luck, and I just wanted to wish you and everyone else a verry merry Christmas in spite of the discomforts, which, I hope, turn out to be temporary.

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NoGluGirl wrote: "How will I get the money? Robbing a bank seems to be the only answer, but knowing my luck, I will get caught. The one wrong thing I do in my life, I would get caught."

Now you know if you were to try to rob a bank you would have to stop in the middle of the act to use the bathroom so plan ahead and map out businesses where you can make pit stops. Now THAT would be a "COPS" show I wouldn't miss!!

:o

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NoGluGirl wrote: "How will I get the money? Robbing a bank seems to be the only answer, but knowing my luck, I will get caught. The one wrong thing I do in my life, I would get caught."

Now you know if you were to try to rob a bank you would have to stop in the middle of the act to use the bathroom so plan ahead and map out businesses where you can make pit stops. Now THAT would be a "COPS" show I wouldn't miss!!

:o

Dear Legg1999,

Boy ain't it the truth! Duh Duh, duh duh, Bad Boy, Bad Boys, Watcha gonna do? He he! ;) You wanna hear something hilarious about our police? There was a guy about a year or so ago who robbed a bank and made his getaway on a nine-year old's bike! Even more rediculous is they did not catch him! I heard the year I was born or the year after, a woman dressed up as Santa Claus and robbed a bank in the middle of July and was never caught to this day! No I wouldn't sense something was up Santa coming in the bank with a gun in July! He he! I have heard of Christmas in July, but you have to wonder why it did not don on people right away!

Sincerely,

NoGluGirl

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Well it seems that my well intentioned wording was not well received. Re the no toast, it is the most common way to get cross contaminated, if you do not keep a gluten-free kitchen you are going to be constantly sick. Your husband could also have celiac and not have any symptoms. If he wants a healthy happy wife I am sure that he would be willing to have a gluten-free house. The gluten-free diet is the healthiest way to eat. I am sure that for the lunches that he eats out, or a quick trip to the fast food, or bakery while out running errands would keep him happy with those wheaty treats.

It is a decision that each person has to come to themselves, but when you get tired of being sick & think that you are worth the effort of the whole family to keep you well, you will know what you need to do.

I am sorry that there are several of you on here that are depressed. I do not have any insurance, I work contract, and my only nephew, a young doctor recently died in an accident. My baby sister and her husband's only child. So we shed a good amount of tears. But my sister chooses to put her energy towards building a big scholarship fund for the clinic where her son worked.

To compensate for my lack of funds and resources, I exercise everyday, take a B12 (get them at Walgreens' when on sale - Nature Made brand) everyday, and eat a wonderful diet of healthy foods. I also keep a good attitude - most of the time.

Your life is a series of choices. I choose to educate myself about celiac and I choose to learn a new way to cook, & I choose to keep a gluten-free house so that I can cook for others & not make them sick, & I choose to have a good attitude.

Anyone that cannot afford gluten-free pastas and things will be healthier for that. If you can eat rice or potatoes that is really all you need. I saute onions, celery, bell peppers, add any leftover meat I have (I cannot eat beef), pour in a jar of classico pasta sauce, add some fresh herbs & serve over rice, if you can eat dairy some parmesan cheese is nice.

I am 60 years old (who wants to hire anyone that old!), I am blind in one eye & I limp from a broken knee that I had 1 1/2 years ago, I have 5 screws & a metal plate in that leg now. Besides gluten I have a ton of other food allergies. Then I have a whole bag full of personal problems. So if I wanted to I could spend a lot of time in self pity, but it just seems like such a waste.

To the person that is trying to get disability, there is a book on disability & applying for it. Did you read up on it? Any disability claim is automatically turned down, even if the prognosis is death. You have to know your rights & appeal etc. You also have to keep a daily log of your problems and your life. I know that most people think that you paid for disability & you are due it, but that is not true, the government tries to not pay it to you, you can fill in the blank for the reason. remeber this is the same government that has sold the population on how good wheat & dairy are for you... It can take two to three years to get your disability benefits.

Dear gfpaperdoll,

I am so sorry to hear about your nephew. He was probably one of the few good doctors there are. What you said about the age discrimination is true. My father had a hard time getting a job when he was laid off the year before last. When you are in your 50s, it is like no one cares. He is intelligent and had tons of experience, but that did not matter. I think there should be a law that employers are required to hire a certain percentage of worker over the age of 40 and another for workers over the age of 60. Disability is almost impossible to get. As you said, most people who need it cannot get it. In many states, it is not uncommon for people to apply three times or more before even being considered! I thought it was just our state, but it isn't. The government is not looking out for us, it is looking out for itself. Screw the little people! It never occurs to them if we all croak that they won't have anyone to pay for their luxurious lifestyles. Of course, even after death, they get you somehow!

Thanks for the suggestions. I have had Classico pasta sauce, the sweet tomato basil. It is so good! I am finally learning about things that have taste we can eat. I still am paranoid about crumbs, though. My parents eat crackers and crap everywhere! That Nature Made vitamin B-12 is safe? I have been wanting to take some vitamins, but did not know of any that are safe. I cannot have iron, either. It makes me sick. I used to recover from illness quicker when I was a child, though I was sick often. I used to take Flintstones vitamins. Maybe that is why. I am usually an optimist, but here lately I have been so worried and depressed about it all. I am just so tired of waiting for things to get better. You know? You ask God if he hates you, if he can hear you, because you know he is up there! You cannot figure out what you did to deserve this punishment called your daily life. On the other hand, you know maybe he is saving something better for you. Thanks for the kind words and inspiration.

Sincerely,

NoGluGirl

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You know? You ask God if he hates you, if he can hear you, because you know he is up there! You cannot figure out what you did to deserve this punishment called your daily life. On the other hand, you know maybe he is saving something better for you. Thanks for the kind words and inspiration.

Sincerely,

NoGluGirl

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The reason why I started this thread is because I get so discouraged when I am following the diet faithfully but still feeling sick. I think it is good to try and put things into perspective -- there are people who are going through things much worse than gluten intolerance and I remind myself of that. Imagine if we had gone to the doctor and been told we had 6 months to live? However, having said that, it can be so depressing (as many of us know!!) to live day in and day out with pain and sickness. I actually had about 1/2 hour a few weeks ago where I felt completely better. It was the weirdest thing because I have not felt that way in so long. I just hope it's a foreshadowing of better days to come.

The diet can get boring and depressing but then I think we should try to find foods that we can enjoy. Sometimes this is a matter of developing a whole new mind set. For me, the biggest drawback about this diet is that I don't have the time I need to make things from scratch so I end up eating a lot of rice and beans.

As far as God goes, I just have to keep trusting that he knows what he is doing. We can't start letting ourselves think that he is punishing us through our illness. Sometimes he uses the hard times in our lives so that we will get to know him better. (Although we don't usually realize that until the hard times are past.) If I didn't have God to hang onto through the tough times, it would be completely hopeless. He is my rock and I use the Bible to give myself hope and comfort. One of my favourite passages is the one that says "They that wait upon the Lord will renew their strenth, they shall mount up with wings as eagles, they shall run and not be weary, and they shall walk and not faint."

Does this mean that I can handle being sick all the time? No, I can't. I have days where I just want to curl up in a ball and cry until I have no tears left. I still get frustrated, angry, discouraged, and just plain old fed up. That's OK -- it's understandable. And that's what is so great about this board -- we can vent, and cry, and stomp our feet. Everyone understands.

Let's just keep on being here for each other and hopefully, we can give each other the strength and encouragement to hang in there.

Marlene

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You know? You ask God if he hates you, if he can hear you, because you know he is up there! You cannot figure out what you did to deserve this punishment called your daily life. On the other hand, you know maybe he is saving something better for you. Thanks for the kind words and inspiration.

Sincerely,

NoGluGirl

One doesn't have to look very far in history to gain some perspective. Think how the poor folks in the Nazi concentration camps must have felt (if you have not yet read Elie Weisel's Night, I strongly recommend it), or the people of Rwanda, or the victims of the Tsunami in southeast Asia, or the victims of Hurricane Katrina...even the people who got trapped by the snowstorm in the Denver Airport were surely in a far more difficult position than any of us (hopefully, none of them had to deal with celiac as well!).

One of my colleagues recently delivered a full-term, perfectly formed baby--stillborn.

Somehow, not being able to eat wheat doesn't bother me so much.

Dear FiddleFaddle,

It is everything I am dealing with right now. I do not forget about the Holocaust (in fact, I am extremely interested in the topic and have done reports on it in the past.) Believe me, people in my religion had their own situation similar to that. I feel the pain of these other people too. More than anyone knows. The depression and anger is not just about not being able to eat wheat. There is so much more to it. It is about having bad health, no money, unsupportive families, a grandmother with Alzheimer's who was a good woman and did not deserve what happened to her, the man I am in love with marrying someone else, and feeling like there is no way out. All of this has me down. I have been waiting for things to improve so long. I honestly cannot remember the last time I was happy. I understand and feel these other people's pain. I feel their sorrow, their fear, their anger.

Perhaps the most frustrating things is the fact I am unable to help them because I cannot even help myself.

Sincerely,

NoGluGirl

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Hi: This is my first post. I have felt just like you do. I am 57 and used to have a top job in one of the biggest consulting firms in the world--traveled everywhere and loved my job. Unfortunately, I was diagnosed with polymyositis, an autoimmune disease of the muscles about 6 years ago. Now I live off of my husband and disability payments--more on that later and how you should go about getting what is rightfully yours through social security.

I self-diagnosed myself with Celiac about 16 months ago. I know I have Celiac as the diet has helped tremendously and my doctor says that is the best test they have. I couldn't bear to go back on gluten just to be tested, so I remain self-diagnosed. I started on L-Glutamine about 3 months ago (only 5-6 grams per day as I have trouble assimilating anything) and have had good results. The Glutamine has helped my D and also strengthened my muscles (nothing else has in 6 years). I believe I had the Celiac first and my small intestine drained my muscles of the Glutamine and thus the muscle disease.

I just figured out I am sensitive to eggs and possibly diary. When I stay away from those I have normal stools. But I know the heartbreak of wanting to go somewhere (anywhere) and being afraid of having a D attack and also the frustration of eating. One hint: do you have a Trader Joe's in your area? They have terrific prepared organic soups that do not contain gluten (they contain rice and rice flour) and they are fairly inexpensive.

Regarding disability, I just got mine approved after having been turned down twice since 2003. I got smart and got me a big bad attorney. There are law firms who specialize in SS disability cases only. It will not cost you a dime and they usually win 98% of their cases on appeal. The payment to the attorney is regulated by the government--25% of back pay only and it is capped. You can look it up on the internet. Get yourself an attorney right away as it will take at least a year before your case is heard. My attorney sent a paralegal to my house to fill out the papers so I didn't even have to visit his office. I believe that Social Security tells everyone with an unusual disease "no" at least twice. You will have to have a hearing but don't be afraid of it. When you have to excuse yourself to go to the bathroom a couple of times during the half hour of your hearing, they will believe you are disabled. Be sure to get an attorney who specializes in SS disability only--they know how to fill out the paperwork and will coach you for your hearing. Just plug in "social security attorney" in Google and the names will pop up.

Best of luck to you and everyone here.

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Hi: This is my first post. I have felt just like you do. I am 57 and used to have a top job in one of the biggest consulting firms in the world--traveled everywhere and loved my job. Unfortunately, I was diagnosed with polymyositis, an autoimmune disease of the muscles about 6 years ago. Now I live off of my husband and disability payments--more on that later and how you should go about getting what is rightfully yours through social security.

I self-diagnosed myself with Celiac about 16 months ago. I know I have Celiac as the diet has helped tremendously and my doctor says that is the best test they have. I couldn't bear to go back on gluten just to be tested, so I remain self-diagnosed. I started on L-Glutamine about 3 months ago (only 5-6 grams per day as I have trouble assimilating anything) and have had good results. The Glutamine has helped my D and also strengthened my muscles (nothing else has in 6 years). I believe I had the Celiac first and my small intestine drained my muscles of the Glutamine and thus the muscle disease.

I just figured out I am sensitive to eggs and possibly diary. When I stay away from those I have normal stools. But I know the heartbreak of wanting to go somewhere (anywhere) and being afraid of having a D attack and also the frustration of eating. One hint: do you have a Trader Joe's in your area? They have terrific prepared organic soups that do not contain gluten (they contain rice and rice flour) and they are fairly inexpensive.

Regarding disability, I just got mine approved after having been turned down twice since 2003. I got smart and got me a big bad attorney. There are law firms who specialize in SS disability cases only. It will not cost you a dime and they usually win 98% of their cases on appeal. The payment to the attorney is regulated by the government--25% of back pay only and it is capped. You can look it up on the internet. Get yourself an attorney right away as it will take at least a year before your case is heard. My attorney sent a paralegal to my house to fill out the papers so I didn't even have to visit his office. I believe that Social Security tells everyone with an unusual disease "no" at least twice. You will have to have a hearing but don't be afraid of it. When you have to excuse yourself to go to the bathroom a couple of times during the half hour of your hearing, they will believe you are disabled. Be sure to get an attorney who specializes in SS disability only--they know how to fill out the paperwork and will coach you for your hearing. Just plug in "social security attorney" in Google and the names will pop up.

Best of luck to you and everyone here.

Dear cjjolly,

I am amazed at all of this! I had to diagnose myself too! I went gluten free as an experiment, and began feeling a little better. Though I had bloodwork done several years ago in late 2000, it came back negative. The thing is, I tried digestive enzymes, which should have helped if it was just gluten intolerance. So, am I a Celiac? An overgrowth of yeast is what is probably causing the returning misery. I was feeling much better for a few months, and then I began feeling rough again. Yeast adds to a lot of things. I have multiple health issues as do you. I have Fibromyalgia, Thyroid disease, allergies to mold, dust, dustmites, ragweed, cottonwood, dog hair, strawberries, and I have had trouble with cysts on my ovaries, so they put me on Depo-Provera. It is the only thing that has kept them away. The nausea definately gets worse when it gets time for my shot, and I always feel better after I get it. I also have problems with my teeth. The strange thing is, I did not start getting cavities until a few years ago.

The disability info is interesting. I am going to check it out. No one will hire me. Around here, there are no decent positions. According to someone else on this forum, Celiac is covered by Disability Act 504. If that is the case, why is it so hard to get? I really appreciate the help.

Sincerely,

NoGluGirl

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