<<Disclaimer: Verify this information before applying it to your situation.>> Dearest List members: A number of you to whom I've spoken in the past are aware of my history, and the on going difficulties I've had with the Social Security Administration, and the nightmare it's been to get proper diagnosis, treatment and care from various HMOs. In a nutshell I've suffered from malabsorption symptoms since birth. I've come close to dying from diarrhea (now there's an epitaph for you) more times than I care to recall. However, despite my symptoms (and perhaps because of them) I was labeled (at my mother's urging) a neurotic hypochondriac prone to panic attacks. Consequently my symptoms never resolved, got worse, and I eventually developed symptoms of a host of other physical ailments (Fibromyalgia, TMJ, Tourette's, Raynaud's, degenerative bone disease, cardiac arrhythmia, multiple food and medication intolerances and sensitivities) all of which were assumed to be psychosomatic in origin and verification that I suffered from chronic mental illness. My eventual psychiatric diagnoses were Multiple Personality Disorder, Agoraphobia and Panic Disorder. The good news is that during the course of the past three years I've learned that my physical symptoms are real and I'm not as much of a nutcase as everyone assumed I was. (Isn't it amazing that my depression and panic symptoms more or less stopped after I went on a g/f diet?) The bad news is learning how sick I have been and continue to be. I've been served (yet again) with a pile of papers from Social Security, which they said I requested (I didn't). They claim overpayment of benefits; a long story I won't get into on this post. (If you want to know specifics you can e-mail me) The point is, I've gone through two reviews two years in a row, and now this. Unfortunately for me, this couldn't come at a worse time. I'm currently extremely ill, and in the process of attempting to learn the full extent of my various physical illnesses. (The list is too long and keeps getting bigger) Last November, after literally 18 months spent begging for a gastrological consult, (during which I lost in excess of 100 pounds!!!) I was finally granted one when my surgeon intervened and sent a letter to my then primary Kaiser physician stating the need for an exam prior to my gallbladder surgery. Luckily for me, after five years of being gluten free, (also spent begging for a gastro consult) my intestinal tract still showed damage, and a diagnosis of Celiac disease finally confirmed. I can only imagine what my intestinal tract might have looked like had it been examined five years ago (prior to going g/f) when I first requested a gastrological consultation. Thank God I followed my own instincts and remained gluten free during that time. I can't believe my case is an isolated one, there must be others like me who've been forced to endure insults, innuendo, pain and suffering at the hands of well meaning doctors, nurses, therapists and social workers. I know how close to suicide I've been and how painful the process of getting properly diagnosed has been. When I think about that sort of pain multiplied by thousands of others like myself it makes want to cry. Current U.S. statistics state that only 1 in 1000 Americans suffer from Celiac disease. The international medical community, along with various U.S. physicians are going on record to state those numbers are woefully incorrect. If we can assume that the 1 in 250 estimate of Celiac patients used internationally is correct, then you realize in excess of 26 million American currently suffering from Celiac disease are either misdiagnosed or undiagnosed AND untreated. A deplorable situation, which I'm sure you'll agree is untenable and should be resolved. I don't know about you, but I'm sick (both figuratively and literally) of having my life put on hold until the powers that be (HMO's, Social Security, etc.) decide as to what diagnostic treatments they'll allow me and or, if I'm sick enough to retain social security benefits. The fact that I had to endure 18 months of constant and severe bright yellow diarrhea, extreme abdominal pain and other gallbladders symptoms while constantly being told all I had was gas, that I was too hyper and/or I was making myself ill IS NUTS!!!! The simple fact that I could easily have died had my gallbladder disease been allowed to progress to the point of necrosis terrifies me beyond words. That so many of us are forced to beg for diagnosis is absurd and cruel beyond words. I'm currently unable to digest food properly, my malabsorption symptoms are back, and I'm still loosing weight. Additionally, since my surgery I still can't digest fats and I've developed intolerances to a number of foods I used to be able to eat in the past. I more or less live on water and this rich soup I make from scratch as it's all I'm able to eat. I'm now facing the very real possibility that I suffer from pheochromocytoma (a rare adrenal type cancer) and/or Acute Intermittent Porphyria. With the way I react to medications, the idea of more surgery chills me to the bone. Needless to say this is an extremely stressful time for me, and simply getting through a day takes most of my energy. The LAST thing I need is to face yet an other go around with Social Security. My first instinct is to write a letter to every major news service, outlining the horrors I've been forced to endure throughout my life and what it's like to live with Celiac disease ... how it distances you from others socially, etc., and how painful the symptoms can be. Then go to the steps of the main Social Security Administration office in Los Angeles, CA ... cover myself with gasoline, and set myself on fire. But when it comes down to it, I'm not quite that crazy, I don't enjoy pain (death by fire sounds pretty painful) nor do I wish to die. I'm just really REALLY tired of having to go through all this baloney (if you know what I mean). So I've decided the best alternative for me is to fight back in a BIG way. That said, if anyone else would be interested in having their story forwarded (along with my own) to every U.S. news service, senator and president Bush, please contact me by e-mail and I'll give you the specifics along with my mailing address. If you'd rather not mail me your information I highly recommend you write either a senator or congress person on your own. The more of us who reach the government, the more aware they'll be of our situation. I'm putting together a packet of information on Celiac disease and the difficulties Celiacs have in getting proper diagnosis and treatment. If you're like me I'm sure you'd much rather be feeling healthy and working, than sick and miserable trying to survive on Social Security benefits. A point I'd like to get across to the powers that be. NOTE: The Americans with Disability Act guarantees that all disabled be granted equal access. Isn't about time Celiacs achieve parity in treatment? (e.g. the right to go to the bathroom when needed, the right to see a doctor when needed without fearing termination, the right to work from home when too ill to go into work, etc.) Lastly, lest you think me totally insane, prior to becoming too ill to work I actually accomplished a lot in my life. You can look me up in Who's Who of American Women [Macmillan Directory Division] in any issue from 1991 to present. I mention this fact not to brag about what I've done, only to let you know I'm a real person who's always tried to keep going and accomplish good things DESPITE how I've felt. Also, because once a person's been labeled mentally ill (like I have) people tend to discount much of what you say. Thanks for taking the time to read this. Love and Care, Jeanne Barkemeijer de Wit