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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 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 Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About cindyb1

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  1. Super scary! Its definitely not worth any risk to ever consume gluten if that is going to happen. 
  2. Wow, Ive been reading through the forums for info and stumbled upon this. When I began to have celiac symptoms, I had the weirdest black out in the middle of the night along with passing out, anxiety and other odd symptoms- went the ER and  blood work indicated a clot. Since that particular time, I could no longer consume gluten, it was like a switch had turned on and I was no longer able to eat wheat etc. Each time Ive been accidentally glutened, I have a similar but less severe response.     I wonder if I had a transient ischemic attack due to gluten? This makes me feel like Im not crazy after all! 
  3. The testing to determine if I have celiac is taking forever. I made the mistake of going off gluten last August, so any bloodwork has been negative but I am positive for the H.L.A. DQ2. The dr wants to do an endoscopy because any damage still may show up.    Anyway, I was doing okay avoiding gluten until eating some BBQ from a restaurant. The same day, I ate eggs from another restaurant that tasted powdered, not like a fresh egg. The following day, my stomach was really crampy and I had a headache and felt off.    This week I had dinner at a friends house. There were corn chips and a homemade dip that had no gluten. I ate that plus some BBQ chicken salad. Within an hour of eating, I got all hot and dizzy, felt like I was going to throw up. My stomach hasn't been right since and Im very tired. I never experienced the feeling of I'M GOING TO THROW UP RIGHT NOW.   It seems like my reactions to trace amounts of gluten are getting worse!   I am seriously afraid to eat anything. Im literally so hungry that my stomach is rumbling.   I guess my question is- do people grow more sensitive to gluten and get worse reactions? Does gluten make people throw up? Where in my meal was gluten hiding?   Help!     
  4. Hello!   Its taking me forever to get a real diagnosis on whether I have celiac or non celiac gluten intolerance which is frustrating. I went to a top doctor here in Southern CA but her appointments are very hard to get, no one returns my messages and on my last appointment, she walked in with her keys in her hand, ready to leave quickly. She recommended a biopsy but it could be inconclusive because I have not been consuming gluten.    I did consent to the biopsy however, its been two weeks and no one is returning my call to schedule it.   Because Ive been off gluten since last July, except for cross contamination and accidental gluten consumption in things like sauces, gravies, going out to eat, etc the blood test was inconclusive.    She ran a gene test and I do have the  H.L.A. DQ2 plus a whole host of celiac symptoms. She said this is not a clear diagnosis and Im in a "gray zone" of no official celiac diagnosis. I feel like a fraud saying I have celiac if I dont.   Since the "flip was switched" last March, I have a really odd symptom when I am sleeping, I suddenly feel like Ive been hit in the head and I wake up abruptly like someone has dropped a brick on my head. This feeling only began since I started being unable to tolerate gluten! Its scary. I actually passed out last year and spent a night in the ER after it happened the first time. It happens rarely but perhaps when Ive consumed trace amounts of gluten.   Lately I have also had bad heart palpitations. I had BBQ sauce from a restaurant last night and had bad heart burn, heart palpitations and woke up with a terrible headache along with the brick dropping on my head sensation.    I also ate breakfast out and even though I told the waitress I was gluten free, I believe the eggs were powdered because they had a weird consistency!   Like many of you have felt, I'm very frustrated and unsure of what's wrong with me. My body does have an achy feeling to it which I attributed to exercising but now I dont know. Im frequently fatigued too.   I thought the doctor would've given me literature or sent to me a nutritionist to help cure my gut or recommended some supplements to help with the damage the gluten has done but NOTHING. Not even a single brochure. Since gluten hides in countless foods, I would have also thought she'd thoroughly go thru that with me but NOPE.   I really don't know where to go from here. Advice? thoughts? Anyone else experience that weird feeling or heart palps? (in addition to the digestive distress) Has anyone had great luck with a good doctor?    XO cindy  
  5. Hello,   My doctor ran a genetic blood panel and has been so busy that I can't see her until next week. I received a message today that the results are in and I DO carry the gene for celiac.   Knowing that I carry the gene, coupled with the fact I've had all major (and minor) symptoms of celiac including that pesky rash, am I safe to think I probably have it?    I havent been eating gluten since August, although have been consistently cross contaminating myself and accidentally consuming gluten in things I didnt even realize contained gluten. The blood tests for the IgA etc. were negative, the endoscopy may not show any damage since I havent actively been eating gluten.   What would you do if you were me? Just figure I probably have it and keep living my life gluten-free, or have an endoscopy?    Thanks for any input, advice and thoughts.  Cindy
  6. I can relate! Up until last year I could eat gluten with no problem- although looking back, I always did have some bloating and cramping after eating gluten.    Hurry to get the bloodwork done so you can be gluten free. I was gluten free (because I felt better) and the bloodwork came  back normal. Its a little tricky to diagnose when you have been gluten-free for a while.    Good luck to you!  Cindy
  7. Ooh this is my area! I run a natural beauty blog and will be sure to actively seek out totally gluten free products but I can recommend: Red Apple Lipstick, Josh Rosebrook products, Acure Organics, Lauren Brooke cosmetiques, W3LL People, RMS Beauty, ILIA beauty.    You want to seek out PURE ingredients that are recognizable. Try going to Skin Deep, run by the EWG to see the purity of various  brands.    XO Cindy
  8. Thank you for all of your help! You are a wealth of knowledge and very valuable to this board!!    xo Cindy
  9. Thank you again!   I've been gluten-free since late last summer so the blood work didn't show anything alarming. I was getting stomach pains and eliminated various foods that I thought could be causing the problem. When I felt better from not eating gluten, I decided to stay away from gluten for good.     The Dr thought the endoscopy might not show much since I've been gluten free for so long (I went to the dr to get a confirmed diagnosis, mostly because my husband thought I was being weird and trendy by eating a gluten-free diet).   I am definitely not willing to go back on gluten- that would make me super sick everyday! For the past several months, Ive been having an increasingly worse reaction to the smallest bit of gluten, usually consumed accidentally while out to dinner, or even buying sauces, dressings, gravy mix, taco seasoning..I couldnt  understand my stomach issues since I wasnt eating the obvious things like bagels, bread, crackers, cookies.    What would you do if you were me? Would you be contact thinking its probably celiac, maybe NCGI or would you go for an endoscopy? 
  10. Thank you so much! So...if I have all the symptoms of celiac coupled with those genes, does that mean I am likely to have celiac? You guys are a valuable wealth of information, thank you!  Grateful, Cindy
  11. Thank you! Its all confusing to me! The doctor is actually very difficult to get an appointment with so Im trying to figure it all out. xo Cindy
  12. Not quite sure how to interpret these results? Any help would be very much appreciated. The doctor wants to see me in her office on Monday so I don't know whether to be worried or not!    HLA-DQB1 *02:01   NOT PRESENT   HLA-DQB1 *02:02   PRESENT   HLA-DQA1 *02:01   PRESENT   HLA-DQA1 *05:01   NOT PRESENT   HLA-DQA1 *05:05   NOT PRESENT   HLA-DQB1 *03:02(8)   NOT PRESENT   HLA-DQA1 *03:XX   NOT PRESENT   I've been trying to google the results but I am getting so confused! Thank you in advance! Cindy
  13. thank you so much for your reply! I swear my husband thinks Im crazy. Cant wait to prove that Im not! xo 
  14. Im waiting to get into the Celiac/Gasto specialist but the waiting is giving me anxiety!    Long story short- Ive always had stomach issues. I thought I had IBS because the cramping, bloating and constipation was horrible. Ive also been extremely fatigued  and sometimes cant get through the day without laying down. I have Interstitial Cystitis too which flares up occasionally.   I went through a stressful year and since then, my stomach aches were worse. Id get stomach cramps and pains that were terrible. I stopped eating gluten to see if the pain would go away and it seemed to help.   My question is this - my reaction to gluten has gotten worse and worse. Now the tiniest bit of gluten makes me very sick. If I accidentally have so much as a crumb of it, I get ill.    For example, I ate french fries from Carls Jr and got sick, I only had four! I later learned they fry their breaded items in the same oil as the fries. Or I touched dog food and got sick. I ate soup where my daughter had dipped her bread into her soup and got really sick.    My husband thinks Im crazy and this is all in my head which makes this all so much worse.    So if I had a gluten intolerance, would I be reacting in such a serious way?     
  15.     Oh yes, it says >25 EU/ml positive if that makes a difference!