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My Celiac Story

Posted by Kerbear, 28 September 2010 · 543 views

Celiac Disease
My story begins nearly 4 years ago.

I had suffered from stomach pain for several years before being diagnosed. Doctors treated me for gallbladder disease, ulcers (though none were found) and I underwent a procedure where they look inside your stomach and small intestines called and endoscope, sounds worse than it is.

I went on a low carb diet to loose weight. I was feeling so good, the stomach pain was almost completely gone, the rash that my Doctor told me was eczema (that seems to be what they classify any rash they don't understand or know) was gone. I was feeling so good that I thought I would have a special treat at Thanksgiving (4 years this coming turkey day). I had a small helping of stuffing (about the size of a half dollar coin), half a dinner roll, and a tiny piece of pie. I got so sick, and broke out in a rash all over my neck. It was painful to the touch yet it itched.

I went to work after they holiday where a co-worker noticed the rash and asked, "Do you have ring worm?" At the same moment, one of the Doctors I work with passed by. He took a quick look at my rash and told us, "No, she has celiac sprue." Since my grandmother had it, I knew what it was. I had my regular family doc do the blood test and sure enough I had it.

I tried to do a split household. I had my gluten-free stuff labeled and kept as separate as I could. Unfortunately my kids were always contaminating my food with gluten and I was always ill and rashy. My husband, bless him, gave up his bread (the man loves his bread, but he loves me more thank God!) and our entire house became gluten free.

My two daughters had been complaining of stomach pain so I had them tested as well. My oldest daughter (then 12yrs old) had both the blood and the biopsy of the small intestine (painless procedure). My youngest daughter (then 7) only had the blood test. Both girls came back with normal (negative) results. However, when we took the household to gluten-free, my youngest; who was failing all her classes, couldn't concentrate on anything yet wasn't ADD or AD/HD, and had to have remedial special ed courses, suddenly she was above normal on the testing scale, could sit and read a book (not that she wanted to, but the point was she could) and retain the information she read, I knew it was because of celiac disease. You can definitely tell when she has had something with gluten in it, she becomes flakey and can't remember things and she breaks out in a rash around her nose of all places.

Our household has been gluten-free for over 3 yrs now. I am super sensitive to gluten. I work with people who eat tons of gluten and I break out regularly from crumbs left on the furniture/tables. I can not be in my mothers house if she is making cookies because I become ill from the flour in the air. The slightest particle seems to set off my disease. I not only have stomach pain but suffer from horrible rashes in the strangest places, and I can actually feel the "breakout" before it is visible. The funny thing is, I don't always have the same reaction. I have had reactions that cause me to sleep, unable to stay awake I will literally pass out. I can be roused from sleep but will not stay awake, those are scary and thankfully rare.

That's my story in a nutshell. I am thinking about blogging my experience to see if it will help others and maybe someone will have some ideas for me when I have breakouts, or how to live in a gluten world; quitting my job it not an option! I love what I do and will fight to the death to keep it :D

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Thanks for sharing your story. I hope you and your family are doing well.
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