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nikky's Blog

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Me And My Diagnosis



hey all im Nikky, im 15 and i live in the UK. I have 2 sisters and one brother, they are all older than me which is a bit of a pain. I have long brown hair, blue eyes and im tall and slim. I appear shy to people who dont know me but you'll soon see that im actually really talkative. I like going out with my freinds, listening to music and watching T.V.

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The younger of my sisters has been tested for coeliac several times, all have come back negative and she now has been diagnosed with IBS, i am not convinced that this is correct and she is having more tests (not for coeliac though). My other sister and brother have been advised to get tested along with my pearents but all have no symptoms as yet. All of my family have thrombositipeanea (they're blood doenst clot properly) except for me and my dad.. its the one thing i dont have. My grandmother has hypercalcemia and so do i, my farther has been tested but him, my mother and my siblings all need to be checked.


I was diagnosed with coeliac disease in December 2007. I was only diagnosed because of shoulder pain which after exrays and over a year of calcium checks (one locum checked my calcium about 10 times, it kept coming back high but rather than doing anything about it he kept checking the levels) seeing different GPs (my regular one was off having a baby) one decided to test for iron deficiency anemia, which came back positive so they tested for other things to try and find out the cause of the anemia, the coeliac anti-bodies came back at over 250, the UK norm is between 1 and 10. I had a biopsy last March which came back negative. In November my GI repeated the bloods which came back posistive again and i still had aneamia and had started to get very vauge mild symptoms that could of been anything. This caused my GI to ignore the biopsy results and confirm coeliac... i guess im lucky there my GI is really good and helpful.. he called at 8pm on a Friday night before just to make sure i was ok and he has diagnosed me with hypercalcemia.


In january, i had more bloodwork and my anti body levels had droped down to 40 in just a month and the hypercalcemia doesnt seem to be affecting me, although i have been warned that doctors may frequently tell me that i need an operation because of my hypercalcemia and that when they tell me this i need to make it clear that i do not need an operation, and if they dont listen i can tell them to talk to him.


I am now feeling alot better although some of mysymptoms seem to be returning and i still cant figure out why, i think that either i am still anemic or i have another food intolerance. I will keep you informed.


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