• Announcements

    • admin

      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


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

4 Neutral

About upsilamba

  • Rank
    New Community Member
  1. I've been taking fluoxetine for the past couple of years - I got very lucky that for me, it overall reduced the stomach issues that I was still dealing with due to celiac (now I only get diarrhea sometimes instead of constantly, ha). I also dealt with the sexual side effects, which were really upsetting to me at first (if you're feeling depressed, you definitely don't want to lose a part of life that makes you happy!). But I stuck it out and found that it gradually faded, and I felt totally back to normal within a few months. Everyone is different though, and dealing with side effects sucks. But depression also sucks, and for me celiac and glutenings threw my brain chemistry so far out of whack that starting fluoxetine made a big difference for me, once it settled in. My doctors generally told me to give a new med a month minimum before making a judgement, unless the side effects were truly awful. There's a ton of conflicting advice out there, and everyone's reactions to different drugs vary. So I think the best I can offer is try to be patient if you can - even though spending a month at a time of you life dealing with side effects and a new med is ridiculous : ( - and see what works for you. It really is hard to tell how a med works for you/what side effects will stick around after just a week or two, unfortunately. I was reluctant to give anti-depressants a try, largely because I was so worried about side effects, but I'm so glad that I stuck it out long enough to discover it actually worked really well for me. Good luck, and hope you feel better!
  2. Thanks karen g! I actually did some more searching and found a few places that look like they might be hopeful (and someone really nice in the Topeka celiac association chapter wrote me back with some advice!). There are a few places that show up in Manhattan, Kansas, including one called Tall Grass Tap House. And then a chain that the woman from Topeka recommended called Carlos O'Kelly's has a location in Manhattan and another in Salina, which looks like it might be a good midway location. I also found a place called Essential Foods right over the border in Burlington, so I'm feeling more optimistic : ) Do you know any of those places? Any you'd recommend, or warn me away from? I'll definitely be packing snacks, but I'll be crossing Kansas after several days of driving already, and hopefully a lot of rambling around and hiking/sightseeing. Bringing a cooler is likely to be tricky (and finding a heat source even more so)! I can definitely live off granola bars and cold cuts, or whatever else I can find at grocery stores along the way, but that gets a bit depressing when it's all I eat for whole days (especially since I'll be traveling with my non-celiac friend, who will probably want to make more traditional food stops!). I try to avoid chomping on cold snack food while watching friends eat delicious burgers when I can, haha : )
  3. Thanks! the first time i clicked it seemed like nothing happened, and then I couldn't figure out how to delete the second one : )
  4. Hi all! I'm planning a road trip with my best friend from Durham, NC to Denver, CO this June. I'm plotting out our itinerary now, so of course I'm searching up places to eat along the way! We're going to need to drive across Kansas (probably sticking to I70), and since it's at minimum 9 hours driving from Kansas City to Denver, we'll most likely need to stop for a night in central or western Kansas somewhere. But I just searched the whole state of Kansas on Find Me Gluten Free, and came up with nothing, yikes! Even googling for local celiac associations only turned up groups in Kansas City - where the cross-Kansas leg begins - and Wichita, which is a good several hours out of our way. If it comes down to it, of course, I can live off some kind of snacks for that stretch, but since it's likely to be a day or day and a half between big cities with gluten-free friendly restaurants, I'm really hoping to find at least one spot to get a safe meal somewhere in there! Does anyone happen to know any good places in central/western Kansas, or any people in Kansas who might be able to recommend some? I have celiac and am pretty sensitive, so I'm fairly cautious about where I eat, and uncomfortable rolling the dice with places that don't already have a reputation for knowing how to prepare safe food : ) Other than safety, though, I'm extremely not picky about what I eat, haha. We'll also be meandering through North Carolina, Tennessee, a bit of Western Kentucky, and Missouri on our way out to Denver. I'm a lot less worried about finding places to eat through those stretches, since cities/populations are much more closely spaced, but if anyone has any recommendations for favorite spots (gluten-free dining or just fun things to do/see!) I'd love the advice! I'm super excited for the trip, just hoping to avoid living off granola bars or stale sandwiches through the whole state of Kansas, lol... Thanks : ) Shaina
  5. 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 : )
  6. 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 : )
  7. 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 : )
  8. 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 : ) http://wheniwentglutenfree.tumblr.com/post/64865990498/when-i-go-through-a-phase-of-avoiding-going-to
  9. 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!
  10. 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...
  11. 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 : )
  12. 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.
  13. 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... : )
  14. 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.
  15. 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.