Jessica-finding Out Diagnosis Of Celiac Sprue

[NpfGCmusicgrl101]

Hello everyone,

My name is Jessica and I was just diagnosed with Celiac Sprue a few days ago, which was a huge relief when I got the diagnosis because I thought I was never going to get diagnosed. I guess it all started when I was born. I was born very small weighing about four pounds. I was adopted by two wonderful parents. My adoptive mom said that there was one time at the orphanage when I had a bald spot on the back of my head and that the orphanage claimed it was from not being turned over in my crib. I had a hunch that that wasn't the reason for the bald spot. As I got older, I developed a series of neurological problems including ADD; a short term memory problem and a learning disability, inablity to concentrate and many more. I remember always having trouble in school with nose bleeds as a kid and never knew why. I was also born with Psoriasis. I would lose sooooo much of my hair as a kid and even to this day I do whenever I comb it or take a shower. I never put any of these symptoms together as a kid and never thought anything of them.

When I reached my high school years, I was going to school and would always come home feeling extremely fatigued. Again, never thought anything of it. Around about my junior year of high school, I started to experience GI symptoms. I would get fissures, bouts of stomach pain, constipation, and bouts of what my GI doctor at the time had diagnosed as IBS. I took the diagnosis of IBS as an accurate one at the time because my symptoms made sense in correspondence to that diagnosis...my GI ones anyway. My GI doctor at the time prescribed me several medications, none of which seemed to completely alleviate my symptoms, they just gave me temporary relief. I eventually felt like everything was moving in slow motion and like nothing was getting accomplished. So I switched to a new GI doctor. It was then when I had a colonoscopy done which came back normal. So my GI doctor concluded there was nothing wrong with me. However, I still was feeling not like myself. He as well put me on several medications for my constipation/IBS and sent me on my way.

Later on, around my first year of college at the four year school I am currently a senior at, I one day felt something I had never experienced before. I went to lay down to go to sleep for the night and all of a sudden, I got a really bad migrane accompanied by dizziness that felt like I was going around in circles. I remember holding on to the edge of my bed because I felt like if I let go, I was going to fall off. I thought maybe this was just a freak occurrance and didn't think much of it. I thought to myself, if it doesn't go away in three days, then I'll go see a doctor. So, three days passed and I still had the headaches and dizziness. During the school semester, I was also experiencing fatigue to the point where I wouldn't have the physical strength to stay awake to be able to read no more than literally three pages of one of my books before I closed it and went to sleep. I would also have days where I would get headaches so bad that I wouldn't be able to sleep because the headaches would only come when I had my eyes closed. So the only way I didn't experience the headaches was when I was awake. Hence, I would wake up the next day feeling exhausted. I finally got up the nerve to see the school doctor. At the time of my examination, she checked my heart rate and said I had a cardiac arythmia and thought I had Mitral Valve Prolapse Syndrome and that I needed to get to the ER right now. After I got out of the hospital, I had an eco cardiogram done which confirmed I did not have this condition. I was then seen by my primary physician who then ran a whole bunch of blood work on me for every condition under the sun. It was confirmed that my vitamin D level was significantly low. It was at a level of 11 and my doctor said he considered a normal level to be at 32. So right away he started to put me on suppluments of 50,000 units a week and my level improved right away. However, I was noticing while I was taking the vitamin d, that about every three weeks or so, I was getting really lose diahrrea and I was also beginning to lose weight. I don't weigh much to begin with and am a very petite person, so when I started to lose weight I got very concerned. I had gone from weighing 115 pounds to weighing 104 pounds in a matter of just a few weeks. I told my GI doctor's nurse about this and my primary care doc. At first my primary doc thought maybe the amount of vitamin d was too high so he lowered it to 1,000 units and said if I was still having diahrrea to go see my GI doc. So I tried going on the lower dose and I was still having diahrrea. So my GI doc's nurse said that if I was still having diahrrea, then it wasn't due to the vitamin d. So another colonoscopy was done on me, along with a biopsy. Both were negative. At school, my doctor there came up with the idea to test me for Celiac disease. So I got the celiac panel done, and that came back negative. However, when my school doc tested me and did the panel, she didn't test me for the complete celiac panel. So my GI doc went back and tested me for the two other tests that completed the panel. It was found that those were negative also. He then decided to do two types of stool tests. One of these stool tests showed that I had moderate white blood cells in my stool. My GI doc said that there are times when a patient can have celiac sprue and have it only show up in their stool and not in the blood. He said he's only encountered one other patient beside myself in this situation. He then said I had two options to confirm the diagnosis: either to see a celiac disease specialist in NY or go on a gluten free diet for 4 weeks and see him back for a follow up. I chose to go on the diet and right away I noticed I felt so much better. I went back for my follow up appointment with my GI doc and he said that based upon the symptoms I was having and the fact that I felt better after having gone on the diet that I had a variation of Celiac Sprue. I was so relieved when I finally got the diagnosis and I've noticed that as long as I don't eat anything with gluten in in, I'm okay.

[ShayFL]

Jessica what a relief for you!! I wish you healing and light.