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Diagnosis & How We Got There

Posted by , 24 July 2005 · 175 views

Length of time for diagnosis
Well, I just had a nice long nap and I will try and finish this. When I went to the doctor's and stated how I was losing weight, they ran the typical blood tests that came back negative. Thereafter I would go in with more of a weight loss and be greeted with the same statement from the nurse - EVERY TIME. "I don't know why you are here - You Look Great". Needless to say my blood pressure would rise. And I would also say the same thing each time. " I am not dieting, I am not bulimic and I am not anorexic. I am losing weight". In between each visit I would search the web for answers and go into the doctors and ask for this test or that test. They would all come back negative. I kept dropping weight and starting in November of 2003, I had become weak enough that I spent more and more of my time in bed. In December we had no Christmas for the first time in my life. It has always been my favorite holiday and all I got done was a wreath on the door so my neighbors would not think I was Bah Humbugging them LOL. Also starting in November, the D started bigtime. They gave me lomotil and by December I was taking 100 a week to no avail. By the last week in January of 2004 I was taking 5 hour naps, washing my hair once a week and getting in the shower twice weekly. Seldom even brushed my teeth and stopped eatting. I had no idea what I weighed as I was too weak to get on the scale. By this time, I would not let my family visit me and see what I had become. I did not know that by that time I had lost over 50 pounds and had become a size 8. The last week I had a colonoscopy, but was so weak that I forgot to take the pills and so the exam was not a good one. My big husband literally bagged the doctor who had done the exam to give us direction on where to go for answers. He said "I don't see anything wrong, she looks Good" At least he did not say "She looks Great". Asked for a diabetes test and it was negative. Then I started getting dehydrated. Could not keep Petialite in me and threw up plain water. By the last Thursday I was in the fetal position. We decided maybe the emergency room could provide answers. The short story for that is a nighmare. The ambulance techs decided I just wanted a ride to the hospital to cut through the waiting time and so they would not cover me with a blanket (I was skinny and cold) and told the triage nurse that I was having an anxiety attack which was causing me to throw up, etc. So, after sitting in a sling type wheelchair for over 3 hours, I asked the waiting room nurse "how much longer". She told me I was at the bottom of the list and EVERYONE came before me. I asked to sign my self out and that I was going to die at home, not sitting there. By this time, I had had no fluids of ANY sort - remember I am have an anxiety attack. And I was sitting on just bone in that sling wheelchair. Silent tears had been rolling down my face for sometime. I really did go home to die. There were no more avenues and my husband and I knew it was just a matter of days. The pain became so intense on the last Saturday that I was begging God to please take me. Dehydration is not a painless way to go. My husband then begged me to fight. Because of him I did not give up. He kept begging me to again try the petialite. By Saturday I could keep a swallow or two in me without throwing it up. I think he bought every flavor they made, hoping that one flavor would work. By Sunday night I had been able to keep about a cup in me for the day. Monday, he called the GP and tried to get me in. They said they would squeeze me in on Tuesday. Monday, I kept about 2 cups in me and tried a piece of dry toast which I threw up. Tuesday he went to the doctors with me - needless to say I was not driving and had not done so in a couple of months. It took hours before this hypochondriac was seen. LOL. While the doctor was trying to think of a polite way to tell me to see a shrink, my husband told him I had never had an anxiety attack in my life. The doctor was also leaning forward and looking at my MANY blood marks over both arms. I then reached behind my back to scratch and the rest is history. Somehow the scratch triggered a memory for him and as he tells all his celiac disease patients "A lightbulb went off". He said "I know what you have, why didn't think of this sooner". He had me go home and start reading up on Ciliac Sprue and the next day I had the blood test. I started going gluten-free free the same day. I found out the test results two weeks later where my GP said he had not thought of celiac disease since his medical exam in the 60's. Even in two weeks I felt so much better and I thought that my improvement would continue at the same pace. Wrong and I will address that later. My GP told me that I was probably two weeks away from no recovery. When I asked how long would my recovery take, he said "If I was at 50% in a year" he would be extremely happy. I did not make that percentage. My skin is still so thin that any bad bump causes it to bleed. I have to say that he has been a great doctor to me since then and is always concerned over me. He REALLY cares as does his staff. He now has diagnosed over 50 people since me. I am tired again and think I should eat something. Night Night to all the East Coast. LOL

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Hi Armetta,
I am amazed and horrified at your experience, mostly about the utter lack of concern for another human being. I am glad your doctor finally figured out what you have, but it seems to me that the medical community failed you utterly for far too long. But I have heard variations on this theme over and over. At least now that you know what you have (what we all have) we can help ourselves...and each other.
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