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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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4 posts in this topic

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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    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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