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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com 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 Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How/when Were You First Diagnosed With Celiac?
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I was literally just diagnosed this past Friday. After strong abdominal pains about once a month for the past year started occurring, MY WIFE :) made my stubborn butt go to the emergency room. After several hours there, blood tests, and an ultrasound they said I have peptic ulcer disease and I needed to change my diet up badly. They sent me to a Gastro specialist who confirmed it and asked if I'd like to have the endoscopy procedure done just to have documentation and know 100% it was just that. I agreed just in case something else was wrong. I came out of the procedure and my doctor informed me that I had several tiny ulcers that had healed and that they took a biopsy of something that he thought was just a bacteria that shouldn't be a problem to get rid of. A week later I got the call to come in for more blood work due to the fact that my results of the biopsy looked like possible Celiac disease. It was confirmed on Friday and now we are here.

Probably the hardest thing to ever happen to me considering I've given up soda, caffeine, alcohol, I don't eat my vegetables like I should. I am just thankful I went to the doctor that day for my stomach pains because I believe I've had this for years just never diagnosed. i am always fatigued no matter how much I sleep, and I always thought my chronic back and joint pains were from the brick laying.

Just needed to vent, thanks for listening and I know it will get better.

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I was literally just diagnosed this past Friday. After strong abdominal pains about once a month for the past year started occurring, MY WIFE :) made my stubborn butt go to the emergency room. After several hours there, blood tests, and an ultrasound they said I have peptic ulcer disease and I needed to change my diet up badly. They sent me to a Gastro specialist who confirmed it and asked if I'd like to have the endoscopy procedure done just to have documentation and know 100% it was just that. I agreed just in case something else was wrong. I came out of the procedure and my doctor informed me that I had several tiny ulcers that had healed and that they took a biopsy of something that he thought was just a bacteria that shouldn't be a problem to get rid of. A week later I got the call to come in for more blood work due to the fact that my results of the biopsy looked like possible Celiac disease. It was confirmed on Friday and now we are here.

Probably the hardest thing to ever happen to me considering I've given up soda, caffeine, alcohol, I don't eat my vegetables like I should. I am just thankful I went to the doctor that day for my stomach pains because I believe I've had this for years just never diagnosed. i am always fatigued no matter how much I sleep, and I always thought my chronic back and joint pains were from the brick laying.

Just needed to vent, thanks for listening and I know it will get better.

This is the perfect place to vent -- we all have a time or twelve ;)

Read as much as you can, ask questions or simply vent - we get it.

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That's great you've found the cause... I hope you have a speedy recovery.

Hang in there through the first couple of months. They are the toughest as many of us needed to learn new ways to eat, and those first two weeks can feel lousy if you hit withdrawl. It's worth it in the end if you stick it out. Good luck!

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Much like you I had that BLAM! shocker when it wasn't even hinted at by doctors. I was having issues with my gallbladder and my insurance wouldn't cover what they called an elective surgery to have it removed. This led to repeat trips to the ER when the pain was so bad that narcotics wouldn't even touch it. Eventually blood tests showed that I my liver enzymes were out of control, hinting I had a stone blocking my duct and that I had to have emergency surgery. Within a few hours I was sans gallbladder but sure enough I had a stone that they couldn't get out and needed an ERCP that was scheduled for the following morning. A year later I still want to clock the sadist that decided that no matter the circumstances you MUST be laying on your stomach for that procedure. Anywho, a week later (which was actually a year ago today) I got my call saying gratz!!! you have celiac. <_< I was so unexcited then. Looking back, the string of events it took to get to diagnosis and seeing now that I was undiagnosed for 3 decades I can only be thankful for a GI that got in there and knew that my guts looked wrong.

It is true, getting started is rough but yes, hang in there. It gets easier and a year from now while you may not be all sunshine and rainbows, know that there is life out from under that rainy cloud. The best is that I no longer sleep 16-20 hours a day! I feel like a real human being again, which is quite splendiferous. You'll get there, just have patience.

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    • Hello and welcome I don't have celiac. I do have several symptoms in common with you and I do have a problem with gluten, so NCGS for want of a better term.  A celiac response to gluten involves the immune system so there certainly can be a delay between ingestion and the body producing the antibodies. That would correlate with your tongue aching progressively through the week. Some of the weirder symptoms of celiac occur because those antibodies that have identified gluten proteins as a problem then attack different parts of the body, maybe that's the more delayed reaction in your case. Last time I was glutened definitely I noticed some reaction in a few hours but it was a couple of days before I was certain. After effects can last for weeks or months even.  Wheat allergy is the one with the instant response, it's IGE mediated and so you can have an immediate surge in histamines and in extreme cases anaphylaptic reaction. NCGS is less well understood, some dispute it's existince or question if gluten is the cause. The symptoms however are similar to celiac as far as I know and that includes response time.  You've been through a miserable time but your still young and you need to decide whether you want to pursue a diagnosis or not. If you do, then it will require a gluten challenge of probably 6-12 weeks. See the links below for more details.  If you don't I suggest you go strictly gluten free, keep a food diary and see if the improvements you noted before continue. I think you've probably found your answer. Best of luck!   Further reading https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/
    • This is why many of us stick to our own "Trusted Brands" of things we know are safe, and only buy stuff with the offical certification for gluten free. NOTE also in the US they do not HAVE to tell you their facility also processes wheat on the label, just if the actual product contains it in the ingredients. But many will just to avoid legal mumbo jumbo if they somehow have CC issues. Saying the facility also contains/processes wheat is just them covering themselves if people get sick from it.
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    • I and many others here have been there and sympathise! Keep on keepin' on, it won't be long now before you can start feeling better. In the meantime, if there's a cheesecake, pastry etc that you want to say goodbye to, now's the time...
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