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floslunae

Member Since 26 Dec 2011
Offline Last Active Jan 01 2012 02:07 AM
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Posts I've Made

In Topic: I've Been Tested Negative For Celiac But I Want Opinions Please.

01 January 2012 - 01:29 AM

Thank you guys, for your opinions--

I talked to my mother and it seems a genetic test will not be possible, because insurance will not pay for it. Also, she doesn't want me to have a genetic test in the event that something shows up and it goes on my permanent medical record. My mother is currently on my father's insurance, but she tells me that if she were to go get her own, her premium would be very high because she has diagnosed celiac sprue, and she doesn't want this to happen to me.

My brother has "gluten intolerance" listed on his medical profile. When he was younger, he had dermatitis herpeformis and was only 50% of his height bracket. However after I started eating gluten again, he confided in me that he had been cheating for years. So there is a part of me that doubts if he ever had celiac--one must remember that the conditions he had can always be explained by other things, especially since he hasn't had any side effects, as far as I know.

I'm going to order the original blood test results from my doctor, as these are the most accurate since I had been eating gluten my whole life when I had that test taken. My mother says that the doctor interpreting these results concluded that, from the testing, I did not have celiac. My only symptom was the sudden weight loss my mother told me about--again, there can always be other explanations for these things.

I'm not convinced that Raynaud's is related to celiac. I know they are both autoimmune diseases, but that does not imply genetic relatedness. I'll have to see some hard data before I believe anything.

I very much admire people with celiac, and I identify with their struggles, because I lived that life. It's not an easy one, and I hope it continues to improve as more companies and restaurants start releasing gluten-free products. But I sincerely hope that I do not have it. It's not a condition I wish upon anyone and certainly not my future children. So I can hope, and I'll get the blood test every four years or so in lieu of a genetic test and keep track of symptoms as they may come.