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Member Since 26 Dec 2011
Offline Last Active Jan 01 2012 02:07 AM

Topics I've Started

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

26 December 2011 - 12:28 AM

My mother has severe celiac sprue. When I was six years old, she was dying from malnutrition. Luckily she found a doctor who recognized her symptoms and gave her the blood test for celiac sprue. She tested positive on 3/3 inventories. (I wish I knew the exact name of this test, I'll try to find out because I am sure there is more than one.)

She had my brother and I tested for celiac. I was 8 and he was 6. He tested positive on 2/3 inventories, where I tested positive on 1/3. We had been eating gluten our whole lives. My mother decided to put me on a gluten free diet when she said that I mysteriously lost ten pounds. She said I gained them back after the diet. She also told me that she had said to me, when I was 8, that I may not in fact have celiac. However, given that I spent the next ten years of my life terrified of eating gluten, I doubt her story.

My mother is very good intentioned, but her brush with death from severe celiac sprue made her extremely paranoid about any form of contamination. She interprets many signs of ill health as being related to celiac, even when there is no scientific proof. For her, science isn't needed...she sees celiac everywhere.

I spent the next ten years of my life, from ages 8-18, on a very strict gluten free diet. I was terrified of getting sick and was teased incessantly. For parents of kids on a gluten free diet, it is very hard on your children. I had pretzels thrown at me during lunch. I had to fight with teachers who wanted me to use fruit loops in chemistry class. I had to miss parties, leave early, or bring icky rice bread sandwiches to attend social occasions. I missed out on a lot of things.

My senior year of high school, when I was 18 years old, I was very hungry at a Halloween party and decided, on a whim, to try Qdoba (I was at a college party and I guess a certain degree of brazenness got into me). It was a wheat quesadilla, and it was one of the best things I had eaten during that 10 years. Miraculously, I had zero symptoms. Zero. Very surprising, considering that someone who wasn't allergic to wheat but hadn't eaten it during the formative years of their youth could have very well had an upset stomach. But I was absolutely fine. So I kept on trying. And now, for one whole year, I've been eating non-gluten free food, and I have no symptoms. I took a blood test 2 months after I started eating gluten and I tested completely negative (I filled 0/3 inventories).

Yet my mother keeps insisting that I still have it, reminding me that as Celiac is autoimmune, it can turn "on" or "off" at any time. I also have a condition called Raynaurd's Syndrome. It is an autoimmune disease, very harmless, that makes your fingers swell when they get cold. It has not been linked to celiac in any studies. However because it is an autoimmune disease, my mother automatically assumes they are connected, although I developed Raynaud's BEFORE I went on gluten. (This condition is not to be confused with nerve damage--I know this is related to Celiac, as my mother has it. Also, I have a very mild form of Raynaud's: my fingers swell slightly and turn red in the winter, when I'm holding a cold soda, etc. No whiteness or nerve tingling.)

Also, I have had slight hair-loss this past year, although I believe that this is concurrent with me going on birth control around the same time I went on gluten. The form of birth control I'm on, Depo-Provera, has a 1-10% incidence of associated hair-loss, so it is not surprising.

I hope to get genetic testing soon because I'm really tired of all the superstition surrounding celiac. It seems that at least the people I've met who have it are very willing to disregard medicine and science and proclaim everything as a sign of the disease. I know a lot of doctors are misinformed, but at least genetic testing should be conclusive. The blood test seems to me to be too random, because if what my mother says is true about celiac, then it really could turn on and off at any time.

Please let me know what you think about my story, especially if you have any information that might be good for me to know. I really appreciate it. My mother is very hard to talk to about this because she is hyper-concerned for me, and my doctor knows less about celiac than I do. Thanks and sorry for the long message...

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