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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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About Calicat

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  1. Eagle, I was diagnosed with Celiac about a year ago. Along with a severe B-12 deficiency, I've also had deficiencies of the other B-vitamins, specifically B-1 (thiamine) and B3, so it is definitely possible. I also have ferritin, iron, and vitamin D deficiencies, all of which I'm currently working on improving. Know that there are other people out there fighting the same fight! You're in good company. I'm sorry that doctors have been so terrible with you. I've had similar experiences with them too. I really hope that you find someone who has some compassion and that you start to feel better. Best wishes, Cali
  2. Dagreen, I feel your pain!! I'm 22 and was diagnosed last March after 8 years of trying to find out what was making me so sick. The gluten-free diet has taken the edge off, but I've discovered that I have a lot of other food intolerances too. For me, one of the hardest parts of this whole thing has been the frustration of trying to figure out which foods are okay for sure. Also the whole college/dating/socializing thing has been, um, tricky. I also can't eat rice, or corn, (or legumes, dairy, soy, potato, eggs... ). I don't know if this will help you at all, but I just talked to a woman who was in the same boat and followed a strict diet of veggies and protein, adding one new non-gluten thing back in every 3 months, and leaving the starches for last. Now she can eat anything (except gluten) without reacting and has been healthy enough to travel around the world. Made me feel more hopeful anyway The other thing is, I really needed to grieve for the foods I can't eat anymore. It probably sounds really corny, but in our culture, food is such a big part of everything. And finding out one day that you can't have it anymore, well, that's a big deal. It's traumatic any way you spin it, and adjusting to the new life style is definitely a process. Anything that you're feeling is justified and you should forgive yourself for it. At the end of the day, here's the truth: you are NOT alone and you WILL feel better. The process of trying to figure it all out is excruciatingly frustrating, but you will figure out what specifically works for you. And in the meantime, if you need to vent, we're all here for you. All the best, Cali
  3. Hi girls, Thanks for responding so quickly! It makes me feel so much more sane to have other people to bounce ideas off of. I don't think it's the Lyme acting up again, because the worsening symptoms are definitely related to what I eat... I can't tolerate a lot of what's on the SCD but I'm thinking that trying a very modified version of it might be worth a shot. Thanks again for all of your input Cali
  4. First, let me apologize if this topic/diet has already been covered on the board. I have the feeling that it was mentioned on here somewhere, but for some reason my search isn't yielding any results. I guess my main question is: has anyone tried this? And if so, did it help or hurt or have no result for you? I have Celiac but have only improved marginally being on the gluten-free diet. I seem to react to ANY starch, even if it is organic, prepared by me and not even related to grains (potato, beans, peas, etc). I'm seriously considering a modified version of the Specific Carbohydrate Diet -- by modified I mean even more restrictive, haha . So I'm leaning toward a strict regimen of fish and non-starchy veggies...along with vitamins and reading the SCD bible "Breaking the Vicious Cycle" for support. I recently talked to a woman in my extended family who was very sick for years but healed herself by doing something similar. Any thoughts or advice? Thanks so much for your input!! -Calicat
  5. Thanks for the input! Sometimes it's just helpful to have confirmation from others who are in the same boat, lol. Makes it easier to stick to some of the strict gluten-free guidelines, so thanks for your responses and support : ) Cali, I have to admit that Cali is my nickname, not my given name. My friends used to call me Cat and then added the Cali after I moved to California and coauthored a book centered on a main character with the name Cali. After that it started to stick! It's a treat to meet an authentic Cali! Thanks again for the support. Can I ask you a question about a gluten-free household? I'm the only one in my family with Celiac, and from your signature I'm guessing you're outnumbered by Celiacs but don't have it yourself? I've been trying to figure out how reasonable it is for me to expect other people to be gluten-free when they come to visit. One house-guest recently brought in grocery bags of gluten-containing foods, which was really hard for me, but I didn't want to make her stay unpleasant by telling her that it wasn't okay. Do you allow that sort of thing in your house or is all gluten strictly taboo? Thanks for the perspective!
  6. More obstacles! I've been gluten-free for about 10 months now, but I just discovered that the Lancome HydraZen under-eye/face cream I've been using for a few months has wheat germ oil in it. I'm a bit perplexed though, because I don't have any of my old gluten symptoms, and no rash although I used to get a rash when I ate any gluten. I would never use anything with gluten in it on my lips, but since I haven't reacted to the face cream...does that mean it's okay since it isn't getting into my mouth? Any thoughts and/or personal experiences would be greatly appreciated, thanks!! Cheers, Cali
  7. Christina and Andrea, Thanks for your feedback and for sharing what your experiences with dairy/casein have been... Today's Day 1 dairy-free for me! I hope eliminating it wil help us a lot! Sometimes it's a lot easier knowing other people who have already given it up or who are doing it at the same time. I would love to try some nut and seed recipes someday. I don't think I can tolerate them at this point, but once I get a bit better, I'm hoping it'll work, and then I'll definitely take you up on your recipe offer, Andrea!! I was vegan for about 3 years and yet since I've expanded my diet I keep thinking, how did i ever give up dairy?! Isn't it funny how you can forget? I can't do soy either, it's the worst offender for me and with the dairy, i'm afraid it's an actual allergy rather than an intolerance because of the throat-lip-face swelling, etc. I guess it's back to vegan for the time being, unless fish starts being okay again. Thanks so much for sharing and for your support Miamia, That helped a lot I haven't felt any better since giving up gluten a few months ago, so I know something else is causing a lot of problems, the main scary thing being the throat/face swelling. I had given up all dairy except for one source: milk in my tea! I was thinking the same thing that you said...if i give it up in every other area, maybe i can sneak this bit by and it'll be okay. Giving up the yogurt and ice cream was really hard, but do-able, it's just the tea thing that I'm so emotionally attached to, so I totally understand your coffee thing (thanks for sharing that!) I'm usually fine once I get used to a diet change, it's just the first step that's so hard, just like you said. Another question about the dairy... I had taken it all out except for in my tea, and i was reducing that amount too, for about 10 days and then I had a 1/2 c. of yogurt and my face and throat got very swollen, which never used to happen before from such a small amount, so do you think it's possible that i'm reacting to it more strongly b/c of nearly eliminating it? It sounds like that's similar to what happened to you. And I'm guessing that's indicative of a true allergy. Hmm. Thanks again for your story. It makes me feel more convinced that this really might be what's causing such trouble for me. Julie, Very interesting about the bananas...I had no idea that there was a smilarity! Glad the book review helped. I've been wondering if the dairy might be an anaphylactic (sp?) reaction too. I do get anaphylaxis (sp?) from soy, but I didn't recall the swelling with that, just the whole rapidly dropping blood pressure, throat closing, need to be rushed to the ER thing. Haha. I guess the symptoms can manifest in different ways though. Well, today is my first day, no fudging on tea or anything. I mean business! I would be sooo happy if I could be de-puffed and feeling a bit better by my birthday(early June), otherwise I'm going to pretend it's in September instead! Thanks for sympathizing with how hard it is to give things up when you're already limited. And for the support. Hearing from all of you is already making this seem easier.
  8. Okay girls, I guess I've just been being stubborn about this whole casein/dairy thing...maybe you can give me some support for the detox? I didn't think it was a problem for me, but more and more that seems to be wishful thinking. I cut way back on dairy and after a few days my face and throat weren't nearlyas swollen and my joint and back pain were much better too. Then, in typical feeling-a-bit-better-so-why-don't-i-try-something-else fashion (haha, curse of the restricted diet ) i had a 1/2 cup of yogurt--w/pectin in it though, so that makes this a bit tricky-- and the next day I was sooo much worse and puffy again. So either I'm reacting more strongly now to dairy or to MSG (pectin). I'm eliminating all sources of MSG anyway, but it seems to me like the face and lip swelling might actually be a dairy allergy. Have any of you had experience with this? Any stories about how giving up dairy helped you, so I can stay dedicated to the detox? Thanks in advance for your help
  9. Floridian, I had a reaction very similar to Miamia in response to banana. Tried 1/2 one day, got sick, thought that couldn't be it, tried the other half the next day and was sick for a couple of days (migraine, etc) yet there was a time when I was okay with banana. Very strange (and frustrating!!) I have really bad reactions to citrus fruits as well, orange being the worst culprit of the bunch. I've had soup problems too but thought it was from one of the individual ingredients. Finally I just gave up on it all together b/c I never did figure out which part was so problematic. Very interesting to hear that so many of you have reactions to it. Makes me feel a bit less crazy! Miamia, It probably sounds really boring but I just have steamed veggies for dinner (zucchini, summer squash, broccoli, spinach--depending on what my stomach is up for). Salads used to work, but they're too hard on my stomach lately, so they'll probably be too hard for you too. The steamed veggies bother me a bit, but they seem to be the lesser evil. Sorry I don't have more to offer.
  10. Hi girls. I hope that you're all having a good-health day or at least a day of good-spirits A few of you were wondering whether or not to order Battling the MSG Myth... My copy arrived yesterday and I finished reading most of it last night. It isn't actually a traditional book, more of a computer print out that was spiral bound (which unfortunately kind of takes away from what's inside b/c it looks somewhat makeshift) There are some stories and explanations, lists, etc but on the whole I was pretty disappointed that there wasn't more to it. More than half of it is a cookbook, but remember, the author doesn't avoid gluten, so there's wheat involved in many of the recipes. Also, I don't know about you, but I get into trouble with reactions any time I try any sort of recipe, so that's just totally off-limits for me. Maybe I'm guilty of always wanting more, but a timeline would have been so nice, or at least knowing how long it took the author and case studies before they started to feel well again. I'm glad that I have it as a reference, but I really feel like I need something more in-depth, so I'm thinking about that Excitotoxin book too. Just wanted to let you know my impression of the book so you can decide.
  11. Julie, I'm so sorry that you're still going through so much! You're always so dear, and your posts have made me feel so much more understood, and well, sane I wish that I could cast a magic spell and make you feel better! I think Rachel said that she can't tolerate Enjoy Life Foods products or Pamela's, and I get bad reactions from them both as well, so maybe that was part of what caused your reactions. I've had trouble in the past with really bad nightmares that always seemed related to what I ate. I did track down one of the culprits that was causing me problems. It probably sounds strange, but often if I eat potato at night (doesn't happen if I eat it earlier in the day, for some reason), I get really vivid nightmares where I kind of wake up with a jolt and it takes a while to realize that it's just a dream. Don't know if that helps at all... Rachel, Thanks for helping me try to figure it out, and for being so kind. I do get some inflammation that stretches across my chest and under my arms, although it isn't as bad there now as it used to be, or as bad as in some other places. I'm pretty sure that's where those glands are though, because it even hurts me to shave when they're swollen, so maybe that's what yuo're feeling. Julie, Rachel, Dlp, Jersey, and Andrea, I totally agree with what you all said about trying to make sense of the conflicting lists, safe/unsafe foods, common allergens, advice from the 'pros'. It gets to a point where you can't figure what in the world you should eat and which lists/theories to follow. I'm like you are too, once I get committed to a structured plan, I'm fine, but when I'm trying to make sense of it all I jump back and forth between theories and end up getting so confused and overwhelmed that it just seems impossible. The great thing to know though is that most of us seem to have some idea of what we were eating when we felt best. I know it was extremely limited, but maybe if we can get back to that base point and then choose one additional thing to address, it'll be easier? That's my plan anyway, the foods that i already know from expereince are "safe" for me + msg/corn considerations. Also, Jersey and Julie, when I just took gluten out of my diet, I was completely bed ridden and got so much sicker than I had been before, to the point where even my mom was scared that I might not make it. I think at least the three of us agree that for us, there's something even more harmful than gluten. Now if we can just figure out what it is?! I think we're getting close.
  12. Wow, there sure is a lot to catch up on! Might have to do it in installments, I'm way behind. I had meant to write something about this when I saw it the first time, but seeing it again in Julie's post...it just really resonates. I've had this experience too, and I'm not religious. Somehow whenever I reach a real breaking point and ask for help, something presents itself. It's pretty amazing, actually. Jersey, Thank you for your kind words It's amazing how much that helps. The OJ-gluten connection was a real shocker for me.I had no idea that there might be gluten involved I was planning to avoid orange juice for the forseeable future after that episode anyway, but now there's even more reason. I have been tested for allergies, but for some reason, the blood work didn't really correlate for me. It said I was allergic to literally almost every food, except soy and about 4 other things. Despite the resluts, I am however, highly allergic to soy. I've been to the ER 4 times for it, and started to go into anaphylactic (sp?) shock on more than one occasion. Thanks for asking though. I've actually been wondering recently whether I shouldn't be retested, but I think first I'm just going to go super-pure and also follow the MSG guidelines and not add anything that I think could pose any sort of problem for a good, long time. Hopefully that'll resolve it. I foget who mentioned this specifically, but I think a few of you mentioned smelling a certain way after a bad reaction, sort of a sweet-ish smell? I just read that MSG "has no distinct flavor, although some describe it as salty/sweet." I don't know if that means anything, but maybe the smell has to do with your body trying to detox from it?
  13. Rachel, Tropicana Pure Premium Original, pasteurized (but not "ultra-pateurized" which is on the MSG list) and "no preservatives added." The thing is, I didn't actually drink it, I used it for baking, b/c it reacts with baking soda to give more body to the batter and also adds great flavor instead of using one of the possibly dangerous extracts. so i didn't use nearly as much, but it's possible that it was a combination of the baking --at this point, I think all grains including rice are out for me for at least 6 months -- and the oj. You said before that you think the cleaner our bodies get, the more intense our reactions will be? I think that's what's happening to me. And I'm kind of hoping you'll have some insight into my reaction...(you're my msg guru ) Last night was insane. I'm not exaggerating when I say that I drank literally over a gallon of water throughout the day and night and I was still so thirsty that I felt like i hadn't had a sip of liquid in weeks. My veins got really puffy and so did my hands and feet (although not my face, yay!!) and I got so hot that I couldn't even feel the cold from an ice pack on my neck. My face was really flushed, my heart was racing and it was really hard to catch my breath. I got so shaky and weak that I could barely walk from one room to another, and just thinking about picking up a drinking glass felt as impossible as climbing Mt. Everest. I was extremely sensitive to light and sound too, and I felt like I was going to pass out. I'm still having a rough time today, but compared to last night, I feel great Do you know if this is consistent with MSG? It was sooo intense, and really very scary, but i think the fact that I had/have such a terrible reaction right now is actually a good sign
  14. Hi girls I've got so much to post in response to all that you've written since i last checked in, but I've been rambling way too much (sorry) and I'm in the midst of a pretty severe reaction, so I probably shouldn't even be on the computer right now, but I just have to respond to some of this... Rachel, I'm so happy for you! It all makes so much sense. Your tenacity is really encouraging, and how gratifying to figure out how to cure yourself! Thank you so much for all of your advice and research...it's got me pretty convinced that the MSG/corn thing is the missing piece for me, too. Everything that you mentioned about the ghee...I had those exact symptoms when I tried it, both times. People were trying to convince me it was candida, but just as you said, how could it come and go? It feels like there's finally a common link between all of this! Congratulations again. It's so wonderful that you're on the road back to health Julie, I'm so sorry that you're still recovering from the glutening If it makes you feel any better, I'm a puffster too Finally it's leaving my face (what a difference that makes!) but my body's still really puffy and I keep messing up this MSG-Corn free diet by trying new things before I hit a base. It always takes me at least a few "bridge days" between recovering from a bad reaction and regaining the willpower to go super-strict again. I really hope you start feeling better soon Jersey, I'm going to shoot for at least 6 months really clean too, before I even consider adding something new. I've definitely been doing the one-two step too I had a major reaction that I'm thinking may be due in part to orange juice too. I wonder if that's anything to do with MSG? I can't imagine that it is, and yet, I almost hope so because it would be so nice to be able to pinpoint the "why." Miamia, I know what you mean. Almost everytime I've been insulted, it takes me a while to react because I'm so stunned that someone could be so mean. And then I get angry at myself for not doing something about it, but it just catches you so off guard that you're totally speechless at the time. I've gotten that sensation before, like my entire mouth is torn up andit actually does have cuts which sometimes have even bled (scary). For me, this is different from the rash with the white spots at the back of the tongue. I haven't gotten the cuts recently. The last time was when I ate Captain Crunch cereal. Brendygirl, I'd be willing to bet that most of us on here feel food-phobic a good deal of the time. I know I do I think it's pretty hard to find a balance when you're on such a restricted diet, but just being on this thread the past few weeks has helped me to learn a lot. The support alone has been so helpful. You're definitely in the right place
  15. Julie, Me too. I'm glad you posted that. I've been stressing about not responding to everything and it's just nice to have that out there. And thank you again for your kind words, they really help me to stay positive. And Dlp, I know what you mean about brain fog. I was at the grocery store and couldn't find my car keys after I checked out. I retraced all of my steps and thought maybe somehow I'd dropped them in with the veggies Right before I started freaking out I realized that I'd given them to my mom to hold (she was out in the car) so that i wouldn't misplace them, since i was feeling so foggy. Haha. Julie, A master list of safe things would be incredible to have on hand. Great idea The sorbet claimed that it was actually sugar rather than corn syrup, and I had contacted the company to make sure, but since they misled me about the MSG, who knows?! I got that weird hyper-salivation thing from it too, so either that's actually from MSG and not corn, or else they lied about the sugar. Or maybe it's from both. Either way, I'll be avoiding them! Thanks, Rachel. I don't know if it's different either, but I'd like to try it and see! We're supposed to be getting a Whole Foods store here some time soon, but I've been thinking about just making a little field trip to one within an hour or so of where I live, once I start feeling a bit better, so I'll definitely check that out. Dlp, The book is called the MSG Myth and there's a website by the same name with all of the info. I think it's just www.msgmyth.com. Btw, has anyone gotten their book yet? I keep checking the mail but no luck yet... Hope you're all having a lovely afternoon or evening or whatever time of day it is where you are