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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 twinkle-toez

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      Community Member
    • Birthday 03/09/1984

    Profile Information

    • Gender Female
    • Interests BALLET!!!!!!!!!!!!!!!!! Running (10km, half-marathons), Swimming, School, Nutrition, Metabolism, Reading (Harry Potter, anything by Christopher Lamb)

    twinkle-toez's Activity

    1. twinkle-toez added a post in a topic Traveling To France & Germany   

      I don't mean to butt into a conversation, but I just wanted to clarify...

      What makes bratwurst potentially unsafe to eat in a restaurant is the spices in it? So the actual inside is completely meat and no gluten filler?

      I too am going to be backpacking through berlin for a couple of days and am a celiac with very limited german skills (introductory german from about 8 years ago).

      So far I've read that currywurst should be okay, and now have your recommendation of German chocolate. I REALY want to try traditional german foods while in Germany... But I don't want to be ill, especially while traveling...

      Any suggestions on 'traditional' dishes (other than currywurst, pork knuckle, chocolate)...

      Thank you!!!! (Danke)
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    2. twinkle-toez added a post in a topic gluten-free In Italy-Venice   

      Ciao Veronica,

      My name is Alyssa and I am going to Italy in 9 days! I've heard that Venice is one of the worst parts of Italy for a celiac to find safe foods to eat... is this true? I don't speak italian (although I have learned the phrase "Io sono celiaca" and 'senza glutine per favore" as well as various other menial phrases (e.g. grazie). I'm a student that will be backpacking through Venice for a couple of days.

      I had read that everyone is super aware of celiac, so I wasn't planning on searching out restaurants/ places where I can eat ahead of time... I was just going to say that phrase and wing it.... I've read that polenta and risoto are staples of Venice and that those are both gluten-free...

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    3. twinkle-toez added a post in a topic gluten-free And Eating Disorders   

      I can understand why you would have used your celiac as an excuse - it can be oh-so-tempting. For me I found the frustration to be the other way around - until people truly believed me that I am a true celiac, they thought I had manufactured the story to make my diet more restrictive. The odd thing is, my diet became much less restrictive after going gluten-free. For me, something never sat truly right with me when I consumed gluten-y foods, and I think I subconsciously avoided them. I think part of that avoidance was mediated by the pain that I felt from eating them, and part of it was mediated from the fact that I didn't feel I could trust myself to eat them in moderation. Usually my 'binges' were on gluten-y type foods (now they're obviously not, and said binges happen FAR less frequently now.)I also found that the few times when I did purge were always associated with gluten-y foods - bread, pizza, etc. I found it very odd that other high-fat high-calorie foods (e.g. ice cream) didn't trigger that same impulse to purge the way that a slice of pizza would... I may be an outlier in this though.
      I have found that being glutened can be a trigger, but it can also act to oppose being a trigger. On one hand, there is that urge to just keep purging the body of food and get 'thin', but on the other hand, feeling empty like that comes at such a cost and it's so damned inconvenient/ painful, that I honestly just find myself longing to have return to functionality and be able to leave the bloody bathroom!

      For me, except for right now, b/c I"m in a tough spot right now, I found I gained a great deal of liberation from my thoughts of food by adopting a whole foods diet - no processed foods and no chemicals. I think there are ALOT of very addictive and potentially dangerous additives and chemicals put into our food. It wasn't until I tried to give up things like my conventional yoghurt cups, chocolate chip rice cakes, jam, etc that I realized just how addicted I was to them. I wonder if you may gain some similar liberation from your mental struggles... It's hard to get over the initial hump of giving those foods up, but I found it to be well worth while.

      Forgive me for being a polly-anna, but today is a new month, and possibly we could all look at this as a fresh start and a fresh chance to start re-conquering our issues and demons and taking back control of our lives. There is nothing more debilitating than feeling like you don't have control. We are all strong, and incredibly strong-willed, evidenced by the fact that we have eating disorders in the first place. Let's take march as the month to try and channel that energy into a positive place, rather than a negative.
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    4. twinkle-toez added a post in a topic gluten-free And Eating Disorders   

      I had (have) an ED - I've struggled with anorexia and the occassional 'binge' (not technically binges, but eating more than feels comfortable) for nearly 15 years now. I can definitely understand the frustration of feeling like you've conquered your battle, or made significant headway with it, only to feel yourself losing grip and sliding back into that all-too-familiar-mental-rabbit-hole. For me, the gluten challenge my doc had me try and do was extremely triggering - I was in pain all the time and my GI tract was chronically inflamed making eating hell for me. When I realized that I was avoiding eating I gave up the challenge - I lasted 6ish day on the challenge I think.
      I've been gluten-free since July 2010. There have been ups and downs with me in terms of my ED. Right now I'm in a down spot, but it's mostly because I'm overwhelmed with school, my PhD, planning a wedding, and just having been diagnosed with SLE. My adrenal and thyroid function is a mess, and I've gained weight since January and feel hideous and ugly and fat and totally not comfortable in my own skin. I'm having a really hard time taking the weight off. However, my weight-gain wasn't rooted in going gluten-free, it was rooted in trying a low-carb (carbs only from vegetables) diet that someone I trusted recommended to me. While that person thrives on such a low-carb diet, the diet just shot me straight into the ground, and I haven't been able to emerge in a successful way. I'm really stressing and freaking about fitting into my wedding dress in July and my ballet recital costumes in June. I think I've really digressed from my original point...

      I did have to think more about food for awhile when I first went gluten-free - always second guessing and what not, but I found it made the ED a bit easier to deal with in some ways. Suddenly it was acceptable for me to be OCD about my food and what was going in my body, whereas it was highly frowned upon before. I felt better physically, and that seemed to make it a bit easier to be good to myself with food and food choices - not to starve and not to binge. And the weirdest thing happened with my self-perception... For the first time in, well, ever, I was actually able to see myself clearly in the mirror!!! I could see the bones where others said there were bones (I have a very thin frame) but I could also see the muscles, tendon, and the female fat. I don't know if this makes any sense...

      I hope my response was semi-helpful... feel free to write back if you'd like. I know the hell of EDs, and no one should have to go through it alone.
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    5. twinkle-toez added a post in a topic Lupus?   

      As an update - I was formally diagnosed with lupus last Friday evening. I meet 6 of the 11 necessary diagnostic criteria, plus a slough of the extra 'non-diagnostic' criteria.
      It seems I've had symptoms of the disease for the past 12 years - so since age 14. I'm really glad that I didn't know back then. Comparatively speaking, my lupus is mild, and for that I"m very thankful. I went through a rough couple of days really coming to terms with this diagnosis, but then realized that in those 12 years I've passed 2 major ballet exams, ran 2 half-marathon races and numerous 10km races, earned an undergrad degree and started a PhD. I'm relieved to finally have an answer tying together my odd slough of symptoms, and even more relieved that my disease is mild and thus it's not such a scary diagnosis for me right now, and I really feel blessed that although I do have an autoimmune disease, it falls on the mild end of the spectrum.

      It was also ascertained that my thyroid function is quite low, and I am now having that addressed by an alternative health practitioner. He also decided to do something called a Myers cocktail, and it came to light just how starved for nutrients my cells are. I did not feel well after it, but plan on doing another next week. Gluten truly is my nemesis it seems. Despite being gluten-free for 7 months I still have issues with malabsorption.

      Gluten = Evil.
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    6. twinkle-toez added a post in a topic Night Sweats?   

      The sort of night sweats you are describing is one of my biggest symptoms of being gluten-ed. Pre-gluten-free I was waking up 3 times a night and literally wringing out my pyjamas (and putting dry ones on) and wringing out my hair. As for the bedding - it woudl just be drenched, so I always had a stack of towels next to the bed that I could put down b/c it got ridiculous to try and change the bedding that often (plus I sleep with my fiance, and disturbing him that often would have been awful). It was so bad our sheets are permanently stained from it. If I'm gluten-ed I"ll have night sweats for about 3 nights afterwards. The gluten-free diet definitely resolved my night sweats though.
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    7. twinkle-toez added a post in a topic Lupus?   

      CassP: I have indeed considered intolerances to foods other than gluten - namely: dairy, soy, eggs, nightshades, nuts. I know that I'm sensitive to diary and soy and have removed those from my diet, and I don't consume corn products so that can't be a contender either. Basically I eat a very 'whole foods' diet.

      Wolicki: I have indeed checked for cc - the only possible source that I've come up with is a glutamine supplement that I was using for awhile. It doesn't state where the Gln is derived from on the label, but online I found that alot of Gln supplements are derived from wheat protein. As such that supplement has been discontinued. Aside from that snafu I"m super vigilant, and my fiance is super vigilant about guarding my diet and keeping me gluten-free as well. He actually has gone gluten free for about six weeks now and says he feels more energetic and healthy, which makes our kitchen a bit easier to deal with. We live with another man whom is not gluten-free, but there isn't sharing of cooking ware between us, and I'm hyper vigiliant about counter wiping.

      Gemini: I know that the symptoms of fibromyalgia and lupus can overlap - but I"ve never read any source stating that the malar rash in response to UV is typical of fibromyalgia. As a test, I wore sunscreen this evening at ballet class to see if the fluorescent (UV emitting) lights still caused a rash, and they did not. I do hope that your conditions continue to improve...

      I think that I"m starting to come to terms with this now and feel a bit more okay about life. There are far worse things than lupus, and I don't need meds at this point. It will flare up and flare down, but it doesn't have to define me or my life - simply means that I need to take extra good care of myself during flares, as well as to prevent flares as much as possible. I'm definitely on a learning curve here!!!

      Thank you to all for the support and replies!
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    8. twinkle-toez added a post in a topic Remedies For The Newly Diagnosed?   

      I heard on a nutrition podcast (a highly credible series actually) that alot of glutamine supplements are derived from wheat protein. Have you heard anything about this or know if there are safe brands?
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    9. twinkle-toez added a post in a topic Lupus?   

      Thanks for the response.
      A rheumatologist is probably the next step I'm assuming. Prior to the malar rash discovery of last night (or rather my cluing in to what it actually was that was happening on my face every time I dance ballet) there was still alot more guessing room. My rashes obviously haven't cleared up in the 7 months I"ve been gluten free. I wish they had. It's odd b/c I don't remember having the rashes last year, but possibly my memory is subjectively biasing here.

      Vit D and B12 are both fine (both checked and I suplement).

      As far as thyroid goes - my TSH always comes back normal, and for the life of me I just can't seem to convince the doctors to test T3, T4, the bindng protein or rT3. And while the neurologist is great, I suspect that when I ask for the extra thyroid tests to do a full panel he will say no, as he thinks I'm obsessing and that it's not mentally healthy for me.
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    10. twinkle-toez added a post in a topic Lupus?   

      I'm currently under the care of an extremely competent neurologist. He is monitoring me, but I don't want to go on the typical meds for lupus - the anti-inflammatories can do horrible things to your intestinal lining from what I've read, and steroid treatment isn't desirable either. I do believe there is a great deal of power in diet. I guess my thoughts are that if my body can heal itself, I want to allow it that chance and give it all the advantages/tools to do so that I can.

      I have not as of yet been formally diagnosed with lupus. The neurologist has shared with me that his suspicions are that that is what I do have. I am in contact with him and keeping tabs on my symptoms and any progress/ regression.

      I'm just not sure where else to go on the diet front, or how long to expect to wait to see improvements. I know I am definitely a celiac (resolution of PCOS, GI issues, mood issues (except those now being rooted in frustration over this whole autoimmunity problem) resolved a couple of months into a gluten free diet).
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    11. twinkle-toez added a topic in Celiac Disease - Related Disorders & Research   


      It's been a long time since my last post, and I'm not entirely sure exactly why I'm posting here; probably just for support and to vent I suppose.

      I have been gluten free for 7ish months, and free of dairy, soy, corn, legume, grain and refined sugar for 5 weeks (although those items have only constituted minor portions of my diet for the past 3 months). As of this past summer and fall I was under suspicion of multiple sclerosis. The results of all my imaging however revelaed no demylelination within my CNS.

      Where the story stands as of now is that I have 3 peripheral neuropathies - a multiplex mono-neuritis as the neurologist called it. This past month I have had joint pain that has awoken me at night. I've had chest pains since age 14 (I'm now nearly 27) which have evaded all diagnosis (echos, EKGs, dopplers etc) which have also flared. For the past year I've had random stabbing pains in my abdomen. I also develop a malar rash at ballet, where we dance under fluorescent lights, which I understand, emit UV radiation. My muscles are knotted and I have pretty serious inflammation through my left hip flexor. My ANA titer ranges between 1:40 to 1:80. I'm RF negative. I've also had pretty extreme fatigue. As a ballet dancer trying to train for a major exam, and a graduate student trying to earn a PhD, I find all this rather debilitating.

      On the recommendation of a close friend, I adopted a strict no nuts, no eggs, no nightshades paleo diet for 6 weeks in January. Four of those six weeks were spent very low carb - with no fruit ingestion either - this low carb deal specifically seemed to just absolutely shoot my system to hell. I now have the symptoms of adrenal fatigue and hypothyroid. I'm wondering if anyone knows of any credible sources connecting low carb diets to development of adrenal insufficiency/ hypothyroid.

      More importantly, I'm looking for advice, dietary or otherwise about the lupus. I'm pretty upset right now as last night was when I finally realized that fluorescent lights emit UV light, thus explaining the butterfly rash on my face at dance. Is there something else I should be doing with my diet to try and heal my gut? I have resisted all anti-inflammatory meds to date, although I do take gabapentin for the neural pain and parasthesias. I also supplement with EPA and DHA, and 4000IU Vit D/ day (as well as B/C vitamin complex).

      I'm so tired of struggling and doing this alone. I feel so incredibly hopeless right now. For the past 15 months I've had continual problems with my health - if it's not one symptom, it's another. I can't progress in dance, and I LOVE dance more than I can possibly express. And progress in my degree at school is frustratingly slow as well, yet my supervisor makes me feel awful and judged about the fact that I can't seem to get my health under control.

      I just want to cry.
      • 13 replies
    12. twinkle-toez added a post in a topic Hate Looking 'pregnant'   

      Is there anyway to make the pregnant appearance/ feeling go away quicker? I'm already doing the probiotics and they're not really having any effect. And I can't do dairy - Gah! I hate this!!! I dance ballet and it's just awful!!! I can't imagine being like this for months... any advice?
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    13. twinkle-toez added a topic in Other Food Intolerance and Leaky Gut Issues   

      Help Understanding The Time Frame Of A Milk Reaction
      Hi Guys,

      I've posted on here before - mostly asking questions about neurological issues and the like. I'm a female 26 year old female, and I discovered that I have a problem with gluten this past summer. Aside from a few accidental ingestions (shudder)I've been gluten free since July 2010. At that point I also eliminated dairy, soy, and corn and added meat back into my diet (was formerly a vegetarian). Basically I adopted more of a 'paleolithic' type diet.

      I have an eating disorder (anorexia), which I had worked very hard to beat into remission. This past fall I had major surgery (not related to the eating disorder), which I had a difficult time recovering from (lost about 10% of my body weight during that period, most of which I was able to regain). I also am a bit of a workaholic, so when I was accused of not working hard enough at work, I ramped up the pace and drove myself into the ground - I lost 10% of my body weight in 2 weeks time, not through restriction per se, but simply b/c I have a high metabolism and I just couldn't feed it enough to compensate for the calories I was expending. To stop the weight loss I got a bit slack with my diet - mostly I started allowing dairy, usually in the form of ice cream or milk chocolate (I made sure both were always gluten free). What I've noticed is that immediately after ingestion of dairy, my stomach hurts, I start feeling bloated (and become visibly distended in the abdominal region - pointed out actually by my fiance, so it's not simply my distorted body image coming into play) and am horribly gassy. I also go quite pale.

      I understand that my GI tract is possibly still damaged, thus affecting my digestion. What I'm confused by is the timeline for the reaction - why immediately after eating? If it's a lactose problem, I would expect a bit of delay until the food can reach the small intestine (where the lactase enzyme is found). I suppose if it's a casein-based reaction it could start sooner, since protein digestion does begin to occur in the stomach, but it is my understanding that the gas-producing bacteria reside within the large intestine... Can anyone clarify the time frame for the reaction?

      One last question - does anyone else who has a problem with dairy find that it's worse if you consume a fatty food with it (I love nut butters, but when I eat them in combination with milk, they just sit in my stomach and seem to refuse to digest - I'm still burping nut butter a good 12 hours (sometimes more) after ingestion, and to me this seems a bit weird. Sorry if that was tmi.

      Sorry for the long-rambly post :S
      • 4 replies
    14. twinkle-toez added a post in a topic Bloating/gas   

      Sorry about that.
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    15. twinkle-toez added a post in a topic Bloating/gas   

      I understand why the bloating occurs - because of inflammation and a GI tract which is still damaged.
      What I'm struggling to understand is the time line for the onset of the gas/ GI discomfort. Specifically, why immedediately after eating? The damaged portion of the GI tract (so far as I know) is the small intestine, with odour-producing bacteria residing in the large intestine... I don't understand why the effects are so immediate, vs. having a lag time of a couple of hours... Can anyone clarify this?
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