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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 rorenchan

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    • Birthday 11/13/1982

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    1. rorenchan added a post in a topic Unsupportive Family Keeps Demanding I Attend Rehearsal Dinner.   

      I'm sorry your family is the same.  It's so frustrating.  I'm getting pretty good at saying no, but this one dinner they're just adamant about, and I couldn't find any way to get them to let it go without lying.  It's going to take a while for them to really understand my limits.
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    2. rorenchan added a topic in Celiac Disease - Coping With   

      Unsupportive Family Keeps Demanding I Attend Rehearsal Dinner.
      My only brother is getting married next week.  I really don't want to go because it's the first time I'll have to travel with celiac disease, but also because I dislike every one that will be attending the wedding (and they all dislike each other, it's a jerry springer episode in the making).  I'm very lucky I wasn't roped into being a part of the wedding party, and get to be a regular guest.  
      My survival plan is to drive 3 hours to the hotel, check in, hide in my room with my electric stove and cooler of food, and not leave until the ceremony begins.  Then, after the ceremony and somewhere in the middle of the reception, I'll sneak back to my room and hide, eat dinner, and pass out, before leaving early the next morning to get the heck out of there.  The fewer people I have to socialize with the better.  
      Unfortunately my dad found out I'm arriving early, and is demanding I attend the rehearsal dinner.  I said no.  Then he said I don't have to go to the rehearsal, just the dinner.  I said, no thanks, I'd rather attend the rehearsal but not the dinner.  So he got mad and stopped talking to me.  My brother asked me to go, and I again said no.  At first I thought they were just trying to be nice and make me feel including by asking and giving me a chance to decline, but now I realize they're just being inconsiderate of my disease.  If the dinner was somewhere in or near the hotel, I might have said yes, but they're going to a mexican restaurant a clear hour away on the other side of town!  It's ridiculous to think I would be ok with that!  So I ended up just lying flat out and telling them I won't be arriving until late, like 11pm, and unfortunately won't be there in time.  
      I shouldn't have to lie to get out of a family function with unsupportive family members who think their social needs are more important than my health.  
      • 18 replies
    3. rorenchan added a post in a topic My Only Celiac Friend Started Eating Gluten Again, And I Feel Alone.   

      For those asking, we used to live nearby each other and frequently hung out together, but she moved away right before we both were diagnosed, so I don't get to see her in person anymore.  We just talk on facebook these days, where I see her food posts getting more out of control, and since she is so far away now there literally is nothing I can do except watch.
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    4. rorenchan added a post in a topic My Only Celiac Friend Started Eating Gluten Again, And I Feel Alone.   

      Right? You would think she would know this already since she has Hashimotos and Celiac Disease, not sure which came first since she was diagnosed with both at the same time, and it was her Dr's quick thinking to screen her for both when she went in for the goiter.  I think she has some false hope in her recovery from hashimotos means her celiac disease is also recovered, and yet if she does understand that they are entirely separate diseases and treatments then she's just being downright stupid.  Theres really nothing good that can come from this.  
      I'm sorry your friend is suffering.  It's like watching an alcoholic, and from my experience there's nothing we can do to help except hope they come around on their own.  I guess, that's the only thing I can do for my friend as well.
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    5. rorenchan added a post in a topic My Only Celiac Friend Started Eating Gluten Again, And I Feel Alone.   

      Thanks again GottaSki!  Good to see you are still here.  I'll check out that thread.  
      tasha - Thanks, yeah I think I'll just keep and eye out in case she needs me to be there for her if (when) it starts to get bad.  It's a good thing we have the internet to find people we can talk to.  I don't know what I would do without you guys.
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    6. rorenchan added a topic in Celiac Disease - Coping With   

      My Only Celiac Friend Started Eating Gluten Again, And I Feel Alone.
      I have blood and biopsy diagnosed celiac disease.  The only other celiac I know is my friend who was blood diagnosed the same year as me, but she didn't have an endoscopy because she had a hashimotos goiter complicating the procedure, and the doctors never followed up with it after her surgery.  After she recovered from hashimotos, she started eating gluten again, and is now blatantly ignoring the gluten free diet.  She's not doing it in preparation for testing either, she's just decided to not care.  
      I am afraid to ask her about it, because I know she probably feels like it's nobody's business what she eats, but I can't help but feel upset by her decision.  I'm upset because she's ignoring her health, and I'm worried she'll get sick again.  I'm upset because she tells people she has celiac disease but still eats gluten, which just adds to the public confusion on how to properly handle gluten free dining.  I'm upset, because I feel alone, she is the only person I know with celiac, and now she's pretending like her diagnosis never happened. 
      Is this because she never got an endoscopy, so she isn't taking it seriously? Should I be offended?  I don't want to be offended, but I can't seem to shake this.  6 months ago we were swapping recipes and food finds, and now all she talks about is the food she eats, the pastries, pizzas, wheat beers, etc.  I suddenly feel really alone.  I have other friends who eat partly gluten free as a personal choice, but it's really not the same.  
      • 18 replies
    7. rorenchan added a post in a topic Surprised This Morning With Celiac Diagnosis, Not Sure What To Do   

      It's been almost 3 months!

      I'm starting to feel some small but marked improvements! I'm still very tired, bloated, and the pain of digestion usually knocks me out every meal, so I still can't eat with friends just yet, but my mood is better, and my appetite is strong. My hands feel warmer, and I don't clench my jaw when I sleep as much, which helps a lot with my headaches, ear, and neck pain.

      As everyone said, going to the nutritionist was a joke. He didn't know what celiac disease was, and all he had were old pamphlets supplied by the celiac disease foundation from like 2004. Then he gave me a diabetes workbook, and told me to just eat as if I'm diabetic, but just substitute the wheat products for gluten free products. I was so mad that I wasted my copay money on that hack.

      I've stuck to the gluten free diet without cheating, and I also take the celiact supplements, but I don't know how long I will stay on them because they are kind of expensive for just a 1 month supply. I'm not entirely sure if they're a pyramid scam yet or not, but I do like that it's an all-in-one kind of supplement, but I still need to take more potassium and calcium. I still need to get all my vitamin levels checked, and I hope my pcp can order the tests when I see her on the 10th for the first time since my diagnosis. Hopefully she isn't as clueless as the nutritionist. If she refuses the tests, I'm finding a new doctor.
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    8. rorenchan added a post in a topic Surprised This Morning With Celiac Diagnosis, Not Sure What To Do   

      I got my lab results in the mail yesterday. It reads:

      A. Duodenum, Biopsy, Second Portion:
      - Lymphocytic Enteritis with Intraepithelial Lymphocytes and Subtotal Villous Blunting.

      B. Duodenum, Biopsy, Bulb:
      - Lymphocytic Enteritis with Intraepithelial Lymphocytes and Total Villous Blunting.

      So I guess that means I'm marsh stage 3c in the bulb and 3b in further down.
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    9. rorenchan added a post in a topic Surprised This Morning With Celiac Diagnosis, Not Sure What To Do   

      Thanks guys! I'll make sure to request those vitamin tests. Especially since today my gastroenterologist emailed me back to tell me that I have marsh stage 3. He didn't say a, b, or c though. He's mailing my pathology report today so I can take a better look at it in a few days .
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    10. rorenchan added a post in a topic Surprised This Morning With Celiac Diagnosis, Not Sure What To Do   

      Endoscopy results are in and they are positive as expected. I got my official letter of diagnosis in the mail today. They didn't say what my marsh level is though. Is that something I have to ask for? My gastroenterologist didn't seem interested in seeing me in a followup, but instead has referred me to a nutritionist. I'm not sure who to ask to check my vitamin levels, or if I need to go back to my pcp from now on.
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    11. rorenchan added a post in a topic Has Been A While But Amazing Update........   

      Amazing, congratulations! I hope my recovery goes as well as yours does! I'm just getting started.
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    12. rorenchan added a post in a topic Surprised This Morning With Celiac Diagnosis, Not Sure What To Do   

      I am fully embracing the gluten free diet as we speak! I asked my grocery store manager if they carry gluten free hamburger buns about a week before my endoscopy, and I explained to her that I have celiac disease and can't eat the regular buns, and the day before my endoscopy I went to stock up on food she told me they started carrying udi's! She ordered me the buns, the blueberry muffins, and the cinnamon rolls, and I got them all, they're so tasty!! Now I can eat turkey burgers, and for some reason that makes me really happy.
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    13. rorenchan added a post in a topic Surprised This Morning With Celiac Diagnosis, Not Sure What To Do   

      Oh yeah, I know what you mean. I'm pretty sure I've had celiac disease most of my life, my mom knew something was wrong some time around 6th grade when I started having near constant stomach pain. She took me to get allergy tested, but even after removing all of my food allergies, it didn't help, so I got deflected to psychiatry when I was about 12. I've had a permanent rx for xanax most of my life and every time I see my pcp for anything, she almost always tries to deflect me back to psychiatry instead of running tests. When I got mono two years ago, I had to go to urgent care three times in one week to get a diagnosis, because she didn't think it was mono, just some viral 'thing' going around. I saw her again about 6 months later because I was feeling anemic, and she refused a blood test to check my iron levels. Then I got a call from my psychiatrist who lectured me for 20 minutes on the phone for even thinking I was anemic in the first place, because I hadn't hemorrhaged blood recently, and to go check into group therapy instead. It wasn't until a year later that I saw one of the backup doctors when my pcp was fully booked for my routine check up, that I asked for a referral to gastroenterology for my ibs as it was getting out of control. She got me a referral within a month, and my gastroenterologist had me tested for celiac right away. When I asked him for my blood test results, he mailed them to me, and I scanned the paper and sent copies to both of my parents and my brother. I'm pretty sure if I can't get an official diagnosis from my biopsies at Kaiser, at least i have the blood test results on paper in my files to prove otherwise in case I move insurance companies. Right now I'm in near constant pain with lethargy that I'm unable to work and can barely find the energy to keep up the house chores. I don't care so much about having a diagnosis, as much as I want to get better so I can go back to work!! I miss my job so much.
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    14. rorenchan added a post in a topic Surprised This Morning With Celiac Diagnosis, Not Sure What To Do   

      My doctor only ran the one blood test, we haven't ran any tests for IgG yet. It's all so new to me, I'm still trying to figure out what the different tests represent. My doctor said that depending on the results of my biopsy, I'll be able to get an official diagnosis, and then he'll refer me to a nutritionist who specializes in celiac disease, so perhaps I can ask the nutritionist to run the extra tests before we get started. Thanks for the heads up!
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    15. rorenchan added a post in a topic Surprised This Morning With Celiac Diagnosis, Not Sure What To Do   

      Hi guys, just an update.

      I had my endoscopy yesterday. It was pretty much a non-event. I was scared going in, that I wasn't able to sleep the night before, combined with being so hungry from fasting, I basically fell asleep on the hospital bed before they even gave me the sedative. They thought it was pretty funny. All I can remember was the burning sensation of the sedative when it entered my IV, and feeling it flow up my arm to my heart and lungs and into my brain, and I could taste it on my breath. Then it was lights out, literally, because they turned all the lights off in the room, and like half a second later I was waking up in recovery. I don't remember any of my discharge instructions. My bff took me home, and she said the doctor talked to me, and I just made waving arm motions at him to stop talking, and the only thing I kept saying was that I was tired.

      He didn't say anything to her about what he saw, only that my biopsy results will take 2-3 weeks, and to start eating gluten free. Since I have Kaiser, they updated my past visit section on their website, and under this visit's diagnosis he wrote, 'Abnormal Laboratory Findings' so I'm guessing he must have seen something while he was digging around in there, or maybe he was referencing my blood test. Who knows.

      I wish it didn't take so long to get back biopsy results. .

      I did manage to get my blood test results in detail. According to my allergist/immunologist, my antibody levels are really high.

      Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive
      (tTG) Ab, IgA: >100
      Endomysial Ab IgA: Positive
      Endomysial Ab Titer: 1:160
      IgA, Serum: 286

      If you had an upper endoscopy, how long did it take to get your results?
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