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.