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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Recent Diagnosis/Side Effects

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I was recently diagnosed with Celiacs, which originally surprised me because I haven't always had reactions to gluten. Granted I've ALWAYS had tummy issues, I assumed it was IBS/Acid Reflux/Etc. But in the past, I would eat all kinds of things with gluten, sometimes feeling sick afterward, sometimes just okay.

Since my doctor informed me that I had Celiacs, it started to make sense to me the more I researched it. I stopped eating gluten almost immediately. I noticed after the first week so many things were better, things I didn't even realize were as bad as they had gotten. My mood was lighter, my energy levels higher, my joints felt better, my stomach wasn't constantly giving me troubles and having me run to the restroom, etc. Of course, I had a few days I needed to take Immodium AD (my doctor says part of that is due to my Type A Personality)....

However, I was out of town and due to limited options and resources I ordered a gluten-free pizza because I was REALLY craving it. After the 3rd slice (they were small slices) my stomach started hurting. I didn't think much of it because I was starving and I have conditioned myself to ignore those aches because they have been so constant in the past. Long story short, I fell asleep and woke up 2 hours later sweating with terrible pains. I ran to the bathroom and had several intense bouts of diarrhea. I felt straight up SICK. I immediately took some Immodium hoping to just get back to sleep since I had work in the AM. The diarrhea subsided after about 2 bouts of it. Regardless, the entire next day I just did not feel good, I was tired, out of it, unfocused, unmotivated. ICKY is the best word I can think of. 

Long story short, is this normal? Is this how my body is going to react now that I've eliminated it? Or is it something more than just Celiacs? I feel pretty confident that everything I consumed was within my regular realm of consumption since this gluten-free diet, however, cross-contamination could be possible. I'm concerned I have more going on because these side effects (when had), have become more intense. Does Celiacs get worse as time goes on? I've been going 28 years eating gluten and this is the first I'm hearing of this allergy. I'm just confused. Concerned. Frustrated. EXHAUSTED.

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Celiac disease is like a chameleon.  Symptoms vary from person to person.  They can change after each gluten exposure.  I was just anemic when I was diagnosed.   I was shocked!  But now after being gluten free. I can get all the classic GI symptoms.  it can drive me crazy trying to guess if my symptoms are celiac-related or not.  

There is a steep learning curve to the diet.  Besides eliminating gluten, you might need to determine any food intolerances due to your damaged gut.  It you will need time and patience.  You can heal.  It just will not happen overnight.  So...I would strongly recommend not eating out and avoiding processed foods as much as possible to aid in healing.  Some folks do well on gluten-free junk food and others do not.  Give yourself a chance to heal and then experiment.  

celiac disease  is NOT an allergy!  It is an autoimmune disorder like MS, RA or Lupus except the trigger is known -- gluten (how lucky is that?).  A flare up (from even a tiny amount) can last for days, weeks, or months.  Every celiac is different in terms of symptoms, recovery and other complications (like I have osteoporosis.....).  

The good news is that you can feel better.   Just keep moving forward!  

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It sounds like you ordered your pizza from a restaurant.  There is a very good chance the pizza you ate had gluten in it - cross contamination. Maybe from a shared kitchen, the utensils etc.  It is almost impossible as a celiac to eat food made in a kitchen that cooks with flour. That pretty much eliminates pizza places, bakeries etc.  

There is a steep learning curve with celiac and most people continue to make mistakes for the first 6 months. And, even then, we all get glutened here and there - even the most careful of us. Keep on learning more about what foods are safe and where cross contamination is likely (restaurants, buffets, friends houses, parties, pot lucks, etc).  

Good luck!


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Many of us have a worse reaction to gluten once we have started healing than before we went gluten-free. Sometimes the reactions last a few hours, sometimes much longer. And the reactions can change from time to time as well. It's pretty crazy. So you probably need to stay away from restaurants as much as possible at this juncture. If you go out of town a lot, pack food with you that you can eat/cook while in the hotel environment.

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    • .....damn I thought I had run into stupid doctors on my own, yours flip flop more then a ADHD kid and I should know that one. Yep celiac and gluten-free for life....get copies of all your POSITIVE test and compile them in a folder, write the others off as doctor stupid was tripping on acid. Get copies of all your medical records and personally take them to a new doctor....might want to look through them first and make sure the idiot did not put anything in there wrong. Well if you can anyway......
      Congrats on the diagnosis and sorry you found one of the idiots, you get those a lot in life just sucks when it is someone in charge of your well-being and health like that. I take it you have already been through the newbie 101 thread and gone to a whole foods diet to boost up the healing, cleaned out the kitchen and set for the haul.  
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