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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 ButterflyChaser

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    Advanced Community Member
  • Birthday January 18

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  • Gender Female
  • Interests Diagnosed in 2011/2012 with Hashimoto's and Grave's.
    Have had GI issues for years. Mostly gone after eliminating gluten. All gone when grain-free.
    Wheat makes my skin swell and itch.
    I was declared dead at birth. But I am was not. I was declared brain-damaged, too. But I am a scholar.
  1. Hi Gemini, I'm in NYC - I didn't even check whether this is legal here?   Apparently there have been controversies. To my ignorant self it seems less dangerous than eyelash extensions, but what do I know.   In what state did you use to get these done? Do you have any tips for finding a trusted professional? And did you notice any thinning/brittling of your lashes when doing that?
  2. Hi everyone, I was wondering of anyone on these boards has had any experiences with eyelash (not eyebrow) tinting, and can tell me about the pros and cons (I am mostly worried about the dangers).   I have very long but very blonde and very thin lashes, and I wish I didn't need to colour them with mascara. Nothing wrong with mascara per se, it makes me look like I have falsies on, but I often wish I could just have them dark, without any smudge. So I have been pondering tinting, but I am very worries about possible reactions. I have very sensitive skin and dry eyes, I react violently to any products containing soy, as well.    Anyone here tried it? If so, how was it?   Thanks
  3. I was negative for celiac, but tried the gluten-free diet anyway since October 2012. My new blood tests show that my aTPO was half as much as it used to be. Stil raised, but not as much.
  4. Why Can't I Lose Weight?

    Thank you everybody for your advice and support. I have lately been focusing on these: getting to bed a bit earlier (though not optimal yet), and eating after 9-10 PM, and shortening my workout times. It would be very difficult for me to have days that are completely off workout because I have a desk job and I am in pain if I don't do something, so I decided to reduce the workout time. Other changes I did was getting a larger share of my calories at breakfast, and that has almost totally eliminated snacking/sugar cravings for the rest of the day. So far so good. I seem to have lost 3 kgs from the day I posted this. Fingers crossed.   I have also got my blood tests back. Hypoalbulinemia gone. Cortisol in range again (top half). TSH always suppressed, but FT3 and FT4 are getting lower, ever if they are still hyper, but I guess this means the therapy is working.   But the AMAZING thing, is that my aTPO was slashed in HALF. I wonder if the gluten-free diet helped on that one. It is still high, and positive, but half as it was about a year ago. Anti-tyreoperoxidase and TRab still the same thing.
  5.   This also depends on the time of day you get tested. From what my endo told me (she also has them antibodies, and never developed the disease, ie. she has always been symptomless for the past 25 years she has been positive), once they are high they tend to remain in the body, but their quantity will not be stable, so that, with the exception of dramatic drops/increases, changes in the range are only relatively indicative.   I will have new results coming in soon, and will see if there's a difference after a few months gluten-free.
  6. Why Can't I Lose Weight?

    GottaSki, THAT actually makes a lot of sense, and it makes me wonder whether something similar might be going on with me, ie. bloating/swelling more than proper fat, because that's what all the people closest to me, and who have seen me through the years, seem to remark when I complain about not figuring out what's wrong with me. There definitely is quite some water on me, judging from the "pressure holes" that you can leave on my legs, if you know what I mean.     THAT is a fantastic post, thank you so much, tarnalberry! So...   1) Not sure if this answers your question well, but I have a desk job (grad student), so except for walking to-fro campus and around the 'hood on errands I pretty much sit a lot. As for variety, I also no idea to what extent my current training is varied. But what I have been doing these past few weeks was: Mon: 45 min treadmill, brisk walk with incline, 60 min sculpt class; Tue-Thur: 30 minutes light cardio, 75 min ballet (beginner, pointe), 45 min strength training; Wed: 60 min zumba, 60 min strength training; Fri: 120 minutes ballet (beginner-intermediate, pointe), 60 minutes light walk to-fro dance studio; Sat: 60 mins bootcamp, 30 minutes light walk OR 45 minutes elliptical and 45 minutes strength training or 60 min sculpt class and 30 mins elliptical; Sundays off/walking in the park etc (though I was thinking of adding a modern dance class on Sunday nights. 2) I most surely do NOT get enough sleep. I often sleep around 6:30 hours per night, but I'd need 8. What happens is that I often get to bed past 2 AM. 3) I do often eat too late at night. Sometimes I come home from work at 9 PM, and therefore I finish dinner at 10 PM. If I eat earlier, then I often get hungry again by the time I get back to bed (see #2). 4) I used to do that, but I have found controversial studies re: muscle loss, which given my current problem with protein, worries me a little. The other practical problem is that I am taking lots of classes this round, simply because I find exercising alone all the time to be a bit alienating, and all the classes are later in the day. Thoughts? 5) I am using MyFitnessPal - used CalorieCount for a few months, but their interface drive me bonkers, so I switched. I am very short, around 5 foot 1, and I often end up eating about 1400-1500 kcals per day, even if theoretically aiming for 1250-1300. 6) Short answer: I am VERY stressed. Worried about not being able to finish my dissertation/getting a fellowship extension, being several thousands miles away from my family that's going through lots of financial and health problems, just recovering from over two years of what I now recognize as an abusive relationship, even just living in a different country, continent, culture where I even rarely speak my own language, making ends meet in NYC while living on a student stipend, etc, and I don't know how well I am coping with all this: outwardly I seem to be doing fine, but I am rarely relaxed without being guilty/in avoidance strategy. That was the long answer.   How this helps, and thank you again!
  7. Have I Lost Chocolate Too? Or Was It Cc?

    Thank you, Zibby, and Peleg. By the way, Peleg, what brands do you get? In my case, soy seems to be a bigger issue than gluten itself (it looks like I have NCGS rather than celiac disease, thankfully), so I have even been doing fine with Michel Cluizel's chocolate, though I am not sure that would be ok for the many (or most sensitive) celiacs. Their bars have never given me a problem so far, but I haven't really had chocolate in the past few days.
  8. Why Can't I Lose Weight?

      GottaSki, yes, I'd be curious to hear more regarding what you meant by remaining "heavy," because I have a feeling it may be something closer to what I am experiencing.   Edited to add: I have one crazy thought in my mind. When my thyreotoxic crises first began, two years ago, I lost a crazy amount of weight. Do you think it is possible that my body is still freaked out by months of unintentional starvation, and therefore when my FT3 and FT4 go up it is somehow preventing weight loss so as not to get near death again? Like a weird defense mechanism, so that I still get some hyper symptoms, but not the one that my body has identified as the most deathly? I don't think that's how the body does/should work, but I swear that sometimes that's what it feels like.
  9. So...   As many of you know, I have been practically primal for over three months now. it does help a lot with my tummy, especially since I have limited my intake to 3 brazil nuts per day.   90% of what I eat is whole foods; the 10% of foods including human intervention are: milk and yogurt, coconut bread, sometimes two tablespoons of organic fruit spread (unsweetened) at breakfast, and, increasingly rarely because I've had reactions to it, very very dark chocolate. I only drink water, coffee, and tea; rarely enjoy a glass of wine if dining out (read: no more than twice per month).   I exercise 6 days a week (sometimes 7, or on the 7th day I walk a lot) for 90-120 minutes: usually half medium-high impact cardio, and half strength training; I rotate activities - dancing, bootcamping, running, etc.   I am hyperthyroid - or so I was in January. I have all antibodies for both Grave's and Hashimoto. My FT3 and FT4 were through the roof. I am getting treatment trying not to suppress my thyroid function because I have seen lots of "suppress and replace cases" around me which did. not. go. well. Many symptoms are disappearing. Insomnia, especially, is mostly gone. My period is back - sorry for TMI - after being in menopause for a year and a half (I am 30) following being underweight due to thyrotoxic crisis in 2011.   Now I am 30 lbs overweight, and no matter how hard I try I do not lose weight, but pounds keep creeping up. I gained 15 in a week in July 2012. I was hypERthyroid then. Then I gained 8 lbs in a month in October, soon after going gluten-free. I was still hypERthyroid. Then I gained 7 lbs in the past few months, while being primal/low-carb/calorie counting. AND *very* hypER.   My joints hurt from excess weight. I cannot move properly and I used to be a ballet bun. Lots of this is water weight - I have hypoalbulinemia. My cortisol levels are below range, so that's not what's making me fat.   What is going on with me? It is not just frustrating that no matter what I do my weight goes up and up, it is also scary, because no one seems to have neither an explanation nor a solution. :( :(   I want to cry
  10. Have I Lost Chocolate Too? Or Was It Cc?

    Lady Eowyn, raw onion does give me a headache. Delicion - I know I do fine with something called "Gnosis chocolate." But I'll look into those as well. GFinDC - I have been back to basics for a couple of days and do feel better. Thank you for the Recipes GottaSki! I also have a French chocolate mouse recipe I should share. I'll probably end up buying cacao butter and a thermometer to try and make my own truffles...
  11. Thank you, Kamma. I was on a roll yesterday night.   I hope you feel better soon, MissyShelle, (((hugs)))   1desperateladysaved: I often think of this when we talk about the 1% of celiac sufferers. We should have a Facebook campaign:   "Do you have 300 friends of FB? At least three of them are celiac. Around 25 of them may have NCGS. What? None of your buddies have problems with gluten? Then they are probably undiagnosed." It would be useful to give a face to celiac disease (or other commonly undiagnosed diseases) using social media.
  12. I don't have a problem with the intention of the piece, ie. to say that gluten-free diets are not weight-loss diets; I have a huge problems with the sloppy rhetoric of the article, which actually ends up reinforcing, rather than counteracting, the idea that gluten-free people are people on a fad diet, rather than people who are sick. SO the problem is really that its faulty rhetoric backfires the author's own intention, thus creating more confusion than anything else.   What this article does is reinforce the perception that the "many Americans" choosing to cut out gluten from their lives are doing it because of a health craze or a fad diet rather than clear up the misinformation. I don't need to explain to anyone on this boards why that is a problem.   "About 1 percent of the population has celiac disease." True-ish, if we want to assume it is OK that someone writing on gluten-free diet then offers this queer definition of NCGS: "people with gluten sensitivity, who may feel better when they eat less gluten, WebMD says." Which is and oversimplification and a misunderstanding of what Dr. Fasano and peers mean by speculating that NCGS people are lucky enough not to get the cascade of additional diseases brought on by autoimmune responses.    But let's see, who's her main source? A dietitian. What did this dietitian write, that's conveniently linked in the article via Amazion? Diet Simple: 195 Mental Tricks, Substitutions, Habits & Inspirations. Lose Weight and Get Healthy Without Dieting. From the Amazon description:   "The secret to losing weight and keeping it off for good is simple. It’s the small, easy changes you make in eating that have the most dramatic and lasting results. Diet Simple is the only program that shows you exactly which changes to make and how much weight you can expect to lose. Learn how to replace fat-laden habits you’ll never miss, make substitutions you’ll relish, and retool your mind to view eating in a whole new way. All in a style that’s fresh, entertaining, and fun." Here’s just a taste of what you’ll discover inside: How singing in the shower can help you lose 26 pounds. How visiting “Old MacDonald” can help your kids lose 10 pounds. How your alarm clock can help you lose 14 pounds. How “Batch” Recipes can help you lose 40 pounds. Thank god a personality show dietitian wrote this book of mindblowing suggestions I would never find elsewhere in the internets, or Cosmo.   Let's take a peek at what's inside. The linked book must have a section in which she breaks down the gluten-drama for celiacs, non-celiacs, and uncertain people in between, which could not make it in the word-count of the article. Search: "gluten."   ONE hit. On a chicken soup that magically becomes gluten-free if you hold the baguette. I double-check with the search and index features to make sure that I haven't missed stuff on the copyrighted pages. I try with wheat - must be related, right? All wheat occurrences are about the old "hearth healthy whole grains." Bravo! Maybe I'm sour because I am an amateur baker and used to love the fragrance of whole wheat. But, hey, maybe that gets me off the hook, too, because I don't technically "hate" wheat (and I mostly had eikorn and emmer varieties back in the day), barley, or rye - it's just that my love isn't reciprocated.    So to recap: Ms. Rettner is a bit confused about what NCGS is, and couldn't be bothered to get a more specific source that WebMD, and uses as a source on gluten a dietitian that barely mentions the problem in the book referenced by the article itself. In my class, that gets a C-   What next? The concern, laudable in itself is that "people who unnecessarily shun gluten may do so at the expense of their health, Tallmadge said. That's because whole grains, which contain gluten, are a good source of fiber, vitamins and minerals, Tallmadge said. Gluten-free products are often made with refined grains, and are low in nutrients. If you embrace such a diet, you'll end up "eating a lot of foods that are stripped of nutrients," Tallmadge said. Studies show gluten-free diets can be deficient in fiber, iron, folate, niacin, thiamine, calcium, vitamin B12, phosphorus and zinc, she said."   There are two problems in the passage above: one is the content, the other is the rhetoric.   1) The content: the source allegedly harps on the old "fiber issue" - as if vegetables, fruits, and seeds had no fiber. Fair enough, I guess people like whole-wheat bread more than they like lettuce and raspberries, in which case why are they looking for diet advice? And you see all those absent micro-nutrients listed above? Well, guess what? Most flours, yes, even whole-wheat flours, have them ADDED back in artificially because they have been stripped of it in the processing.   So yes, junk food is junk food is junk food - but the author is making it seem as if gluten-free=junk and non-gluten-free=whole foods, and we all know that's not the case. There are, as NorthernElf suggested, whole options of gluten-free products. But above all, all those micronutrients can be obtained from whole plants and animals - no need for bread of gluten-free products of any kind. Obviously this seems to be not an option. I wonder who is it that benefits, in terms of money, from that...    2) The rhetoric: did you notice that? All that the article-writer knows about gluten can be summarized in "that's what she said" - she being the dietitian who doesn't write on gluten at all, because she writes on weight loss. Nothing wrong with that, but having a popular weight-loss authority speak about why you don't need/should not cut out gluten implicitly reinforces the popular perception that "gluten-free people are just trying to lose weight by being posh and a pain in the neck, and they don't even know how to lose weight," because in this article the people who need to eat gluten-free are first marked as the smallest minority and then shoved off at the very bottom of the piece/second page, where no real "new information" is given.   Then there's this:   '"You can eat a healthy diet without gluten, but you have to be very knowledgeable, and most people aren't," Tallmadge said. People who go gluten-free may feel better because, to avoid the protein, they end up cutting out desserts and junk foods, thus losing weight. "They mistakenly attribute that to their gluten-free decision," Tallmadge said.'   Thank you for giving all the people who roll their eyes when we have to ask "is this gluten free?" another reason to not to take us seriously, because we'd be "ok" if we just ate less junk.   And, oh, yes, how patronizing is that? "Most people aren't knowledgeable enough to get nutrients on a gluten-free diet? And who should be responsible for getting actual nutrition education across to the unknowledgeable masses? (I can see the dry bushes rolling on the desert sand as the only voice that answer is the wind).   The implication is that people are ignorant about food, and because they are ignorant about food, they need Big Government subsidized enriched whole wheat bread to save them, because they'll do it wrong if they try and get folate - which, as the words itself suggests, is available a-plenty in leafy greens - without whole wheat flour. Michael, advocate of the "eat food" rule, how did THIS escape your otherwise always discerning eye?   Thankfully, someone comes to save us all: "'Heather Mangieri, a nutrition consultant and spokesperson for the Academy of Nutrition and Dietetics, agreed. "There's nothing magical about eliminating gluten that results in weight loss," Mangieri said. Any of us that eliminates or removes cookies and candies from our diets, and replaces them with fruits and vegetables is going to feel better."   This sounds good, doesn't it? Isn't that what I myself have been ranting about in the previous paragraph? Another world-recognized expert who published in "Self" and "Men's Health" saves us from the stupidity of gluten-free people by spitting out truisms about how cookies and candy will make you fat.   Do you see the what is the only connection that matters? gluten-free-weight loss, gluten-free-weight loss, gluten-free-weight loss. Do we really need that?    So while the article intends to say "Stop freaking out people! Not everyone is going to die if they eat gluten! Also, it won't make you any thinner!" - which we all agree upon - the way in which it is written does nothing but reinforce the misinformed audience's perception that when someone says they are gluten-free they are on a "fad diet" - which is unfortunately proved by some comments on his FB page.   Sorry this is more like a long rant! But I did feel for those on here that are very sensitive and have to endure carelessness and mockery precisely because of the supposed faddism that articles like this reinforce rather than counteract. And that. is. just. irresponsible.   I'll shut up now.
  13. ... for Tweeting this:   I teach his works in my food politics/animal rights classes, and I think that a public figure as himself should be held accountable to a modicum of responsibility.
  14. Hi MissyShelle,   Great thread! I am not sure I have an answer, but I can say what I have observed from my own personal experience.   1) They tell you that tests are expensive, and if they run them, they don't run complete panels. If medical health is provided not as a basic human right but as a privilege (and here the issue gets more complex than insurance only, so it's not just an American problem, though here it may be more visible), then you don't want to pay the labs, you want to pay the pharmaceutical industry. They're the ones that, ahem, hold classes in exotic islands for their doctors... so yes, tests are expensive, but also if you make a "diagnosis" that keeps the patient on lifelong medications, which after some years require medication #2 for the side effects of medication #1, then the doctor is feeding Big Pharma, saving Big Insurance's money, and therefore getting their little perks. Most honest doctors *will* tell you that they get incentives to act this way, which is how I learned about this. You make the patient live with the disease rather than trying to shake the disease off them. Chronicizing is monetizing.   2) Misinformation/laziness/sheer ignorance/degrees granted where the students should have been given a plow to till the land. No specification needed here.   3) The spinning out of control of the "psychosomatic disorder" craze, which I summarize as a great insight gone awry. They finally figured out that the mind can affect the body - which is "duh," if you think about it, since my mind exists because I have certain organs - brain above all - which just happen to be parts of my body. But then this became misinterpreted by people at point 2 as an epidemic of  "hypochondria rampans" - which was exploited by people at point 1 to make munny out of, mostly, psychotropic drugs. A quick search in the APA archives will help you figure out how many people in the US use one or more psychotropic drugs. The numbers are high enough that either the whole nation is under the attack of invisible soul-sucking zombies, or simply psychotropic drugs are being prescribed to people who do not necessarily need them. Long story short: if we believe that most people are hypochondriac, why should we test them? Just give them Prozac!   3.1) The latter point is further complicated by how some conditions are simply not or at least badly understood AND may mimic mental health disorders. Autoimmune conditions are a case in point. Many of them cause exhaustion, or altered moods, "brain fog," nervousness, panic attack, weight alterations etc... Obviously, it's easier to assume it's the "mind alone" to cause them, rather than the "mind as part of the diseased body" (which, as you can see, contradicts the principle itself of the psychosomatic hypothesis), as if the patient's "mind" floated around, detached from their bodies. So you don't test for celiac disease because the plaintive patient is just victim of the latest diet's fad; you don't look for lupus / arthritis rheumatoid because the patient is lazy; you don't test for thyroid disorders because the patience is a lazy pig or an annoying anorexic (this is what happened to me). You "choose" to be ill, so why bother? After all, we know that most women are "weird" in the head and blame it on their bodies, like in that times of the month, so how can you trust a woman in pain? Funnily, most autoimmune patients are - you guessed it - female. So you need to multiply the imaginary patient bias by the gender-defined bias.   3.1.1) Which brings us to cultural frameworks. All of the above behaviours are instances of "victim blaming." So long as we live in a world in which we believe no one should receive help because they "brought it upon themselves," we will not receive better healthcare - no, not even those of us which were sc*ewed by our genes.   Sorry, this may be more of a rant than an answer! Hope it is of some use though!
  15. Feeling Cold All The Time

    Also make sure that they are testing you for FREE T3 and FREE T4. The old T3 and T4 are pretty much useless. Demand to see the lab ranges.   I really think all of us thyroid patients should have a tattooed butterfly - or a shield (thyroid apparently means "shield.").   Hugs.