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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 upsilamba

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  1. So sorry you've between going through this, sincerely. I experience the same type of symptoms from glutening and it's incredibly difficult - honestly it's a traumatizing experience to realize that all of your emotional stability can spontaneously disappear, in a way that you're powerless to do anything about until it passes. My boyfriend tells me it's like he lives with a different person when it's hit me like that - the best way I can describe it to him is that it's like I've been thrown down a well. Everything goes dark and there's no way I can even start to pull myself out of it : ( It's led to me becoming extremely, extremely cautious in avoiding gluten - after riding this lovely ride about once a month for the first 6 mos after I was diagnosed, I'm either irrationally phobic about gluten, or I've rationally decided no risk is ever worth feeling that way, depending how you want to look at it - but since I got super strict it's only happened once (freak contamination accident). It sucks for what it's done to the rest of my life, but it is no question so much better for me to avoid going through that, as much as I possibly can. In terms of getting through it, here are the best tactics I've found, such as they are: With the small rational piece of my brain that still works, remind myself as often as I can that this will pass, that it's a physical reaction, and that even though I can't conceive of it in that moment, I'll feel happy and sane and positive again in a few days. Eliminate all obligations/activities/stress that I can for those few days. Stay home from work if I can, and try not to expect anything from myself until it passes. The only thing worse than having a completely broken brain is attempting to be a productive person or deal with any kind of difficult situations while I'm stuck with it. It took a while (I'm a bit type A by nature) but I try to accept and not blame myself for respecting my limitations when this happens. Do something mindless, to try to occupy your brain while you wait it out. Seriously, Netflix has been a godsend for me at these times. I find anything I think about while my mind is in that state gets cast in the darkest possible way, and I can end up thinking awful, very upsetting thoughts if I give my brain any rein to wander. So I try to put on a documentary or whatever show I can think of to distract myself, and just keep letting the next episode play and trying to not let myself think about much of anything until I can fall asleep. I wish I could be more help! I guess the best thing I can say is that it does always pass, eventually, and keeping safe from gluten is keeping my brain on track too : ) I'm normally pretty balanced and upbeat and have lots of fun and joy in my life without gluten - and I've been able to keep in that place pretty well for the last 6 months. I hope you get to a safer, happier place soon too : )
  2. I was a beer snob too - although I had mostly stopped drinking it for the free years before I was diagnosed cause it always made me feel sick (mystery solved now, haha) Congrats on the diagnosis and on finding the health food store! Ordering online is also a great way to go for products you come across or hear about and want to try - often prices are better too. Amazon and vitacost both have lots of gluten-free products. I don't drink much at all these days, but mostly wine and cider (the aversion to beer from all the sickness it used to trigget is taking time to get over). Redbridge is terrible IMHO, no offense to those who enjoy it. Celia saison and St Peters sorghum ale are the two that are my favorites - even my non celiac beer snob boyfriend enjoys them. Tweasonale (by dogfish head) is pretty interesting if you come across it, though not something I would just knock back with a burger. Greens is pretty respectable, and I also like New Planet and Bards. I'd caution you against any beers like Omission that are made with barley and claim to be "gluten removed" - I tried Omission and was briefly in heaven thinking I had found a "real beer" again (seriously near tears of joy), but then spent the next day with the most violently ill glutening symptoms I've ever had. There are enough decent options out there made with alternative grains that the risk is just not worth it, for me! And explore ciders - there are a lot of craft cideries springing up over the last few years that make really great, interesting ciders, and getting pushed to explore them more had been a genuine upside of losing gluten : ) For pasta, tinkyada is good, as are quinoa pastas. But my favorite are the bean pastas by explore Asia (mung bean linguini especially). They're a bit different than traditional pastas, but in a way that seems more intentional instead of like it's trying and any failing to be normal, haha : ) Good luck with everything! I hope you feel better, and find some great gluten-free meals soon! You might want to wait on the restaurant until you feel really confident on all the precautions you need them to take for you from your own experience in cooking, so that you know you're giving them good instructions. But we all find our own balances of risk that we're comfortable with : )
  3. Hi all,   Does anyone know a decent primary care doctor in NYC (ideally Brooklyn, but i don't want to get too greedy with my wishlist)?   I was diagnosed w/ celiac almost a year ago and am still struggling to feel healthy again (despite never eating out and following a totally paranoid diet). I know it can take more than a year to feel better, but between the gastro stuff and the fatigue and all the other weird symptoms, it's making it pretty hard to live my life : )   At this point, I'm thinking more and more that I have some other issue going on (autoimmune, or gastro, or other types of foods that are bothering me), but my current primary care doc has been pretty useless in helping me to pursue those, and the nutritionist i started seeing hasn't even heard of FODMAPS... I see a great GI doc at the celiac center, but after diagnosing me w/ a B12 deficiency he pretty much left me on my own to address/monitor it, so that's my most urgent reason for finding a new primary care!   But in general I would LOVE to find a primary care dr who would help me to monitor stuff like that, and to investigate the different possibilities for why I'm still so sick. If anyone has a primary care that they like, I'd be so grateful for suggestions!   Thanks : )
  4. I totally get this. I've been avoiding restaurants completely for several months now, and I doubt I'll eat at a restaurant again for a loooong time, sadly. I learned that I get just outrageously sick from any gluten contamination, for about 3 weeks, so it is just not worth the risk to me at this point. just knowing that even at a generally safe place, there's always some level of risk, is enough to keep me scared away pretty thoroughly for the foreseeable (unless it's a totally dedicated place - sadly only bakeries where i live, but i'm hopeful some real restaurants might come in soon!).   Right after I stopped going to restaurants I found this gif though - so true and it felt so good to laugh at it, at least : )
  5. Oh wow, so glad this topic popped up - and interested that I'm not the only one! I always had horrible periods (a bit irregular but crazy PMS involving mostly gastro symptoms - I generally had to avoid eating the whole first day of a period, or spend the day puking, not fun). So I went on a low dose birth control pill that helped to moderate those symptoms a bit (although they didn't go away entirely).   The gynocologist warned me that the pill i'm on can cause your period to disappear - but over a year on it and it never did, until I went off gluten last June. All of a sudden no more periods, except randomly over the past several months they've come back twice and then disappeared again. I emailed the gyn who told me not to worry about it, but I gotta say while missing out on the terrible PMS is not a bad development, and it's not at the top of my list of concerning health stuff, it sure is weird...   I know "unexplained infertility" is a common symptom of celiac in women so I'm sure gluten must mess with hormones etc in some way or other, but I'd be really interested if there's any good research out there on what the connection/effects actually are!
  6. Still Feeling Awful. All The Time.

    Thanks guys! i'm having another cold and wobbly day, but at least my brain is sort of working so that feels a lot better. Here's hoping it lasts a little while this time : )   I think i definitely need to try the elimination diet and see what it turns up - I'm trying to find a good nutritionist to work with for it, so once I can get an appointment for it that'll be my next thing to take on.   the mcas thing is really really interesting - thanks for sharing that, shellie! i had a moment of total horror when i saw the "no leftovers" thing (i was like AHHH but I cook everything so HOW????), but then i saw that you can freeze stuff at least and I managed to start breathing again, haha. Some of it does seem like it might fit (the cold sensitivity/inability to get warm - and heat's definitely not my friend either, the gastro stuff, the wheezing and the joint issues...and I don't think i need to mention the brain fog and anxiety). But I've never had hives or any of the typical allergic reactions listed (seasonal/dust allergies, but nothing that bothers me too much most years).   I'm supposed to see the new PCP doc in a few weeks, so I'll print out some of those resources and see if she'll test me for it! And maybe some of that quart of blood she took last week will turn out to have some other answers, too...
  7. Personal Care Products

    I agree - even though I'm pretty paranoid, I don't tend to worry about shampoo/conditioner or hand soap, but for anything that goes on my face or is meant to cling to skin (like lotion, hand sanitizer, etc), I won't use anything that has gluten or might be contaminated with it. It's been a pain finding and buying new things, but it's so worth it to not worry about washing my hands after every time I put on moisturizer or hair cream or something like that before I touch my mouth or any food (and then wondering whether the hand-washing actually got all the gluten off of my skin, given lotions are generally supposed to cling to your skin even through getting wet...).   One thing you should definitely watch out for is chapstick/lipbalm/lipstick etc - there's no way to not get that on food or straight into your mouth by licking it! I couldn't figure out if Chapstick was definitively gluten free or not, so i ended up buying an expensive but very safely gluten-free lipbalm by red apple - I've been pretty happy with that this winter!   Now off to googling gluten-free sunscreen before I head down to Florida for the weekend : )
  8. Still Feeling Awful. All The Time.

    Hey, thanks for the replies. I do take a multivitamin (actually the naturemade one with iron), and digestive enzymes and probiotics. and i've also been avoiding dairy almost completely for 3 months (very occasionally i bake or cook w/ a little butter - but it doesn't seem to make a difference for how i feel either way, so i think i just avoid it out of habit at this point). since i only eat what i cook (very very few pre-made foods, although i'm now eating a few more recently since abstaining hasn't seemed to make a difference), i also have very little in the way of gums or soy.    i'm going to try a full-on elminiation diet soon, but i'm worried about if i'll be able to tell whether something bothers me, since I feel sick so often it's really tricky to tell if it's been brought on by anything specific.    at this point i'm just getting so frustrated - i feel like i've turned my life pretty upside down with no eating out (so very little going out) and spending tons of time cooking everything from scratch, which would totally be worth it if i was feeling better. but three months into the whole crazy food regime if anything i feel even worse : ( i've always been totally on board with the whole idea of being able to make myself better through controlling my diet, but the feeling better part is still holding out on me, so i'm feeling like this wasn't supposed to be the deal, haha. 
  9. Hey all,   I've posted here a few times before - I got diagnosed with celiac last June, at first felt much better (briefly), and then kept getting glutened about once a month for the next several months (and made the fun discovery that my symptoms are crazy severe and last for about 3 weeks - paralyzing depression/anxiety/brain fog, then bad pain/gastro stuff/vomiting, then exhaustion and brain fog and continuing gastro stuff that hangs on a long time).    So at the start of November, after getting glutened twice back to back and getting just ridiculously ill, I got super super strict. No restaurants, almost no prepared foods except some gluten-free pasta, peanut butter, canned tomatoes etc. No dairy (just in case), and no alcohol, no anything I thought remotely might bother me. Basically I've cooked every single thing I've eaten for the last 3 months...hoping it would result in feeling at least a bit better.   I had my antibodies checked in December and they were already down to normal levels (under 20), which shocked my doctor. So that's great news, but I still feel like crap, constantly. Even since November, I still  get D pretty much daily (usually a few times a day), plus pain - I've had a few stretches of weeks at a time where I'm in bad pain after every time I eat, or it just comes on suddenly for no reason. And I'm exhausted and struggle to focus a lot of the time (and since around the holidays, I've started getting these bouts of just ridiculous exhaustion where I can't get warm, all my limbs feel heavy, I'm wobbly or walking into walls or dropping stuff, etc, and it'll last 2-3 days at a time). And all kinds of other weird symptoms that come and go too.   I finally got an appt with a PCP this past week who seemed decent since I haven't had a consistent one for a long time, and she drew a ton of blood and said she's testing me for basically everything she can think of (thyroid,deficiencies, and then a long list of increasingly scary stuff...). It's tough starting with a new dr who doesn't know me at all (and vice versa) in the middle of all this, I feel like there are so many issues to go over that I'm probably missing important things or phrasing stuff wrong. But now I'm waiting indefinitely for results to come back (not sure if I'm more terrified they'll find something really awful, or that they won't find anything and I'll go back to thinking I'm just crazy). i'm planning to try an elimination diet soon too in case other intolerances are the issue, but I'm just not quite up to taking on everything all at once.   But what it comes down to is I've been sick almost constantly for 7 months now with no real explanation, and I'm just not sure how to keep dealing with all this. I'm also in a very demanding job which I do like, but I'm thinking I'll have to face up to quitting it soon if things don't get better. And me turning into a constantly melted-down, exhausted, can't go out to eat/drink anywhere, needing to cook all the time person is starting to put strain on my relationship too, which feels even worse. And I'm only 25! I feel like my life's turning into something I can't really understand anymore.  I'm not sure I really have a question, but if anyone's been through stuff like this or managed to deal with dr's successfully and figure out/fix symptoms that just would not go away, I think I could use a pep talk... : )
  10. Best Way To Deal With Servers?

      To quote my favorite sage on food, I want to go to there!!! But seriously, my boyfriend and I have been talking about moving to Portland since we went there on vacation last spring (right before i got dx'd, so I didn't sample any of the apparently glorious gluten free offerings...). I think i need to shift into hard-core lobbying mode now, haha. 
  11. How Long Do Symtoms Last?

    Hey Jennifer,   That's rough! I do get symptoms that last at least that long, I'm finding (I've been gluten free since getting diagnosed this past June, but unfortunately I've had a good number of mishaps since then to learn all about how my body reacts, ugh). The worst part for me is the emotional part like you described - just a horrible sense of anxiety/despair/hopelessness that's severe enough to nearly keep me in bed for 2-3 days, and then gradually continues to lift over about 2 weeks. The gastro stuff (pain, discomfort, and all kinds of grossness) tends to also be worst the first few days/week, but that hangs around for me even longer - I'm currently about 3 weeks post-glutening and though mentally I feel like a human being again, my system's definitely still out of whack. From past experience I'll probably be back at "healthy" in another week or two.   It sounds like you've had a really long time to get practiced at eating safely gluten free, though, so I hope once the symptoms from the bread pass - however long it takes - you'll be better than I am yet at keeping yourself healthy. 
  12. Dealing With Getting Glutened?

    Hey again! Ironically since I've finally felt better enough to go out and do some normal-ish life things instead of just moaning sadly on my couch, I've been away from the thread a little while. But thanks so much to everyone for the advice! This is definitely an ongoing struggle...   Nick, ugh, so sorry you're in the same's a miserable, miserable, one. But since we're both in it I know what you mean, it's definitely nice to have the company! When I first got diagnose, I went and read a lot of books and blogs that talked about how once you learned about reading ingredients and talking to restaurants and generally ate safely, life would be totally manageable, and you'd be in control of your health, and able to eat lots of great things still. Which is definitely not how it's been going for me so far, so I'm glad it's not just me like, doing it wrong, you know? I think some of us just get unluckier than others in terms of symptoms and sensitivities, but I think I have to accept it instead of feeling like things should be easier and less restrictive for me than they really are turning out to be.   I'm realizing I'm honestly a completely unrecognizable person for a while after I get glutened, like, to a Jekyll and Hyde level (except less going out on rampages in the night and more just a shambling wreck of a person with random crying jags and crappy netflix sprees and being totally unable to put a coherent thought together, haha). Even though I've been through it enough times now to know rationally that I will eventually feel like a real human being again, it always puts me in a head space where that just seems impossible, so it's a huge relief to be feeling the haze lifting again.   Basically right now I've decided to go on a super restricted diet for at least a month - not quite as extreme as only eating a very specific set of foods, but I'm only eating things I cook myself from whole/raw/minimally processed ingredients. This past time I was SO SICK that I could really just see my health, job, and my whole life falling apart if that keeps happening to me. So I had a bit of a come to Jesus talk with myself and decided that my approach of trying not to let celiac disrupt my life completely in terms of eating habits, and also of feeling entitled at least to eat out at places with gluten free menus/kitchens, or eat prepared foods labeled as gluten free, was just not working and I needed to let go of that. I haven't let go of wanting to eat food I actually enjoy - so I've been baking some gluten free breakfast bars and cooking nice (but basic) meals for myself, and I'm still striving for as much variety as I can within the restrictions I've decided to stick to.    It's been about a week and so far no mishaps (though I did give myself a bit of a heart attack when I nibbled a crumb without thinking about it, then spat it out like a crazy person in the middle of my office lol - but I'm pretty sure it was from my own food anyway, phew). I've cut out anything I have the remotest doubt about being safe and non-angering for my system, which right now means no alcohol, no dairy, and even no stuff I know is safe like glutino crackers and Udi's bread and all of that. I'm considering phasing back in some gluten free pasta (which has never given me a problem to my knowledge) and maybe some Aidell's sausages, but that's about as far up the food processing chain as I'll be going.   I'll see where I'm at in a month - to my knowledge, I don't have problems with anything but gluten and maybe dairy, but it's hard to really know until I can manage to stop glutening myself for long enough to see if I'm still having any other gastro problems. Really it's the gluten turning me into Hyde-me that's the thing I can't still live my life through, though, so I'm OK with having a slower timeframe to see if I need to figure out other intolerances, too.   Nick, in terms of distilled alcohols, I don't really drink them (and only rarely before I got diagnosed) and I'm not sure on their safety - it's one of those foods where I've seen people (celiacs and "expert" people) being equally vehement on both sides of the issue, so I've filed it away in my "not sure and maybe experiment when I'm in a place where I can do that" folder. Like I said I'm giving myself a break from alchohol for a while to spare my system from anything that might upset it, but I personally mostly drink cider or wine when I drink - I actually realized beer was no good for me a few years before I got diagnosed, so that's nothing new. Angry Orchard is great (and easy to find), but if you live in a place with stores/bars with craft brews, you can likely find a whole lot of interesting ones to try! I will say watch out for "gluten free" beers that are brewed with barley with the "gluten removed" (e.g., Omission) - I tried Omission once and had a ridiculously violent reaction to it, so although they test and certify each may be more complicated than that, and I won't try anymore unless it's a time/place I can afford to risk getting sick.   You might really want to think about taking a break from alcohol for a month - or until you've gotten your system more even-keeled in general. I know it's a totally crappy thing to contemplate especially in college, bu I saw a lot of friends in college go through patterns where they would get sick, just barely start to feel better, and then go out drinking again, thus making themselves sick again. My friends who were just sick from the flu or whatever would gradually bounce back, but I think with a chronic, systemic disease, you may not be able to count on being that resilient. I'm in an over-cautious mood myself these days, so you can take this with a grain of salt, but you may find it's just better for your body (and sanity!) to give yourself a long enough break to really let your body get itself back together, before you start putting it through all the standard abuse that college people/20 somethings like to inflict on ourselves : ) I'm calling it my month of enforced clean living, haha...
  13. Ridiculous Conversations

      So I definitely would LOVE to give up all the health problems and the cross contaminations and the restrictions on my life from celiac, but I have to admit that no longer being tempted by treats all the time is one of the silver linings I treasure...not that I'd ever volunteer for celiac, but I really do enjoy not having to stand there and debate should I/shouldn't I whenever I'm around  cake/cookies/cupcakes or whatever : ) Amazing how much room my brain has for other things once I can just walk by the treats without a second thought and go on with my day! (Let me loose in a gluten-free bakery and it's a whole other situation, but fortunately I have to go pretty far out of my way to get to one!).
  14. Dealing With Getting Glutened?

    Thanks for the encouragement! I'm definitely on board with anything that might help get my body calmed down, at this point, so I'm all in for home cooking everything for a month or so at least, and I'll see how it goes. How far did you go, though, in terms of cutting out any "prepared" foods - would you do basic things that are sort of semi prepared, like gluten-free pasta? peanut butter? yogurt? plain canned beans or canned dice tomatoes etc?    I'm planning out cooking a bunch of food for the week today, and I'm trying to figure out where to draw that line for myself. I'm curious what you and others who have tried the no-outside-foods route have done - right now I feel like I'm just making it up as I go along... : )
  15. My first real experience with a dr (aside from check-ups) was when I broke a finger as a 7 year old and my pediatrician told us it couldn't possibly be broken because I didn't seem to really be in pain, and x-rays "weren't worth it." so I walked around with a broken finger for 6 weeks until we finally went back to see an orthopedist since it still hadn't healed...and I have to say docs have been pretty consistent in disappointing me/meeting my VERY low expectations since then : )   I do give a lot of credit to the PCP i went to see who thought to test me for celiac this past after I told her that I was having lots of stomach pains and trying to eat healthy by "eating lots of whole grans," whoops. But minus 1000 points for when the results came back she called to tell me i "tested positive for gluten" and that I should stay away from it for maybe a year and then "I could probably go back to eating gluten again." Thankfully I'm cynical about drs that I asked her to see the actual results, researched the tests online and emailed her back to ask if the tests meant celiac disease, and if so, doesn't that mean for life? She basically answered me back with an "ummm..." and suggested I go see some random GI who could "answer all my questions." I'm trying to get the nerve up to send her a good medical book on celiac with some passages highlighted, and a note on the inside asking her to please not give her patients advice that could kill them, in future... but I know others have had much worse experiences.   My slightly uplifting stupid dr story was a few years ago - after going in to an ENT to find out why i was getting constant shooting pains through my nose (not to mention sinus infections, migraines, etc), the very lovely, intelligent dr and had me do a CT that found I had a giant, POINTY bone spur stabbing into the inside of my nose. Unfortunately I moved before I could have him do the surgery to remove it, so I then shopped around 3 different surgeons who all told me that the bone spur couldn't be causing any problems for me, that it was most likely allergies or all in my head or take your pick of condesceding things Drs like to say to 22 year old women.   The uplifting part, though, is when I finally did find a doc who was "willing" to humor me and take out the bone spur, and I came back to tell him after how ridiculously better I felt, he looked at me and said, "Huh, maybe I should stop telling all my patients this won't help them." So, progress? Or baby steps, at least? : )