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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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    About Kerbear

    • Rank
      New Community Member
    • Birthday 08/24/1973

    Profile Information

    • Gender Female
    • Interests The Bible, reading JD Robb, Dean Koontz, Patricia Cornwell, ect. I love photography, hiking and my work.

    Kerbear's Activity

    1. Kerbear added a blog entry in Kerbear's Blog   

      My Celiac Story
      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
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    2. Kerbear added a comment on a blog entry Diagnose Or Self Diagnose?   

      Hi Missingtortillas,
      I am a big believer in self diagnosis. Not that docs can't do a fine job (I work with many docs, and unfortunately they only know the basics, or not even that). Here is my story, I will try to keep it short.

      I have suffered from abdominal pain for years (we have removed my gallbladder, done endoscopes into my stomach, put me on meds for ulcers you name it). I went on a low carb diet (not atkins) to loose weight. My stomach pain nearly vanished and the rash my doc said was eczema (that seems to be what they call any rash they can't explain) was gone. I felt so good that at Thanksgiving (it will be four years this Turkey day) I had a small helping of stuffing, half a dinner roll and a tiny piece of pie. I was so sick, and suddenly a rash broke out all over my neck. It hurt and it itched, I was miserable.
      I went to work after the holiday and a co-worker asked if I had "ring worm" at the same time one of the docs I work with passed. He stopped, looked me over briefly and said, "No, she has celiac sprue." So my regular family doc did a blood test on me and sure enough huge positive and a major change for me.

      Here is where self diagnosis comes in. I tried to have a separate house hold. I labeled my stuff and had gluten-free items for me while the rest of my family ate normally. OOH I was always so ill and rashy, the kids would contaminate my stuff. My husband, bless that man, decided he loved me more than bread (it was huge, major, for him to give up his bread) and the entire house went gluten-free. I had had both my daughters (they had minor stomach pain) tested (blood test on my youngest daughter then 7, and both blood and endoscopic biopsy on my then 12 yr old daughter) both came back negative. However, when we made the entire household gluten-free, my youngest; who was failing her classes, couldn't concentrate but wasn't ADD or AD/HD, suddenly went from needing remedial special ed courses to way above average. She became a completely different kid. I whole heartedly believe that she also has celiacs disease, despite what the docs say. You can tell when she has something that contains gluten, she is flakey and can't remember things. She breaks out in a rash around her nose of all places.

      So to make this long story short as I can, if you believe you have celiac disease go with it. You will not be harmed by keeping gluten from your diet, there a plenty of other grains to get you nutritional needs from. You don't need a doctor to tell you that you have the problem, and if they come up with a false negative you will do more harm to yourself than is necessary.

      Good Luck!

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