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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Pegleg84

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About Pegleg84

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    hunting for good GF beer and perfecting that GF/DF/SF alfredo recipe
    (Celiac, dairy/soy intolerant, Fibromyalgia)
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  1. First things first: are you sure you aren't getting cross-contaminated somewhere? Gluten creeping into your diet could cause these problems. Another thing to investigate is whether you might be developing an intolerance to other foods? Inflammatory foods like nightshades can screw with your joints and such. Soy is another suspect. After a year gluten-free, it can be easy to think you've got it all figured out, only to find you overlooked something (for example: oh! I do feel better not using that shampoo with wheat germ oil; or, oh shite I've been eating these cross-contaminated nuts for months..!) But, of course, not everything is food related. I was just diagnosed with fibromyalgia (ruled out arthritis, lupus, lyme, etc), which did start out with tingly achy fingers in one hand and spread from there. I started getting symptoms 3-4 years after going gluten-free, with random achy days that slowly became more regular until it was every day. Now I'm on meds that are helping, though still have days where I can barely walk and the brain fog is so thick I feel like Dougie on the new Twin Peaks. Oh, and my vitamin levels are all a-ok and I felt great aside from the bad days, which told me that there was definitely something other than Celiac going on. Jury's still out on whether Fibro is an auto-immune disease or not, but it's not uncommon for someone with Celiac to develop another AI disease. Anyway, depending on how long you've been having these symptoms (did they just start? Has it been a few months) I would take a wait and see approach. If you're worried, it's worth ruling out things that can be easily tested like RA factor and elevated ANA, but probably the best place to start is a good look at your diet. It's amazing how much a little bit of sneaky gluten can do, or how many problems an intolerance can cause. If in a few months you're not feeling better or get worse, then I'd definitely look at other causes. Good luck and feel better!
  2. I suppose having short fingers, or one that's super short, could be a sign of stunted growth which could be a sign of Celiac, but I certainly have never heard of short pinkies as a sign of it. If you have short ones too it makes more sense to me that it's just a genetic trait, but who knows. I do have a pretty tall forehead, but so did my dad and his side of the family. We're all short, thin-haired, and big-foreheaded. Of course, a few of us do have Celiac so maybe they're onto something... Regardless, yes! you should get tested along with the father and any other children. Celiac is inherited even if it skips a generation. It can be asymptomatic, or may not have been triggered yet. The earlier you find out, the better. You can also get genetic testing done to see if you or anyone else has the possibility of developing Celiac, so can watch for symptoms later in life. For your little boy, he's catching it super early so as long as he stays gluten-free he'll grow up healthy without all the complications people with undiagnosed Celiac can develop through their lives. That's a good thing! Get tested, and good luck!
  3. Hi Meg, I was in a somewhat similar situation before I went gluten free: lost a bunch of weight very quickly (I was not overweight, so looking 10+lb in a month was alarming), felt like crud after eating anything, really bad anxiety, low vitamin levels/iron anemia, etc etc. I had blood tests done a couple times (once after my mom was diagnosed with Celiac, and later when my symptoms popped up) which were both negative (not sure if they ran the full panel, though). However, that didn't stop me from being pretty sure I had Celiac. The disease runs on both sides of my family (not sure if my dad had it, but a couple of his siblings do), and my sister also had negative blood tests but an endoscopy showed positive for villi damage. i got sick of being sick all the time and didn't want to wait for however long it would take to get an endoscopy done in a small city (and just before moving) so went gluten-free and never turned back. Given the improvement in my symptoms, I have always considered myself to have Celiac and no one can tell me otherwise. No way would I do a gluten challenge and ruin my health just to have a confirmed diagnosis. All that to say: YES! You should push for an endoscopy. First, talk to your doctor about your symptoms and get the full blood panel redone (lots of posts here with the full rundown of what you should ask for). Tell them that there are AI disorders on both sides of your family (two positives make a negative? Still not sure how that works but probably what happened in me&my sister's case) and want to confirm with an endoscopy regardless of the blood results. Keep enjoying your glutens until then. You should also get your vitamin/mineral levels checked, because low levels + the sudden weight loss, fatigue, etc definitely sounds like a malabsorption issue. Also, it'll let you know how much to supplement (and if you are Celiac, you'll need extra supplementation for quite a while to bring them back to normal) So, go see your doctor armed with all the info you can get, and good luck!
  4. Pretty sure my vitamin levels are fine (have been supplementing daily, everything looked good at my last test), though it might be time to check again. I often wonder if the medication I'm on isn't leeching some nutrients. I have been concerned about Tylenol. I don't take it every day, and always a low dose. (I am taking with methocarbamol to help with muscle pain, which doesn't do much but it's something. I might talk to my doctor about getting some without the acetaminophen). But yeah, when I first noticed this I thought it might be a liver issue. Might get my count checked anyway. I asked the same question in the Fibromyalgia forum I'm on, and the consensus there was that it's probably livedo reticularis, which is another weirdo Fibro thing. I guess it's a common symptom for people with Lupus, and since fibro also causes problems with connective tissue, that makes sense. So, right now I'm not worrying about it (it's not painful, so not a problem) unless it spreads or gets noticeably worse. Thanks!
  5. sorry to keep this very old thread going, but I was about the start a post on the very same subject. Just the other day I was looking at my palms and noticed very mottled red/white/slightly yellow spots, redder around the edges of my palms and my fingers. Don't know if this is a new thing or if I just didn't notice it before. In any case, it's kind of concerning. It doesn't seem to be constant, but shows up more when my hands are lower than my heart. In any case, I don't think there's any gluten involved (if there was, I'd be having all kinds of other problems), but I was recently diagnosed with Fibromyalgia, so am on a SSRNI to help with the pain (which is helping), and since I can't take ibuprophen anymore (useless!) I've been taking more Acetaminophen. I don't know if I'm just developing another symptom, or if it's a drug side effect, or what. From the bit of research I've done it looks like the photo in the post above, so could be this livedo reticularis thing. I normally have quite cold hands, but when the mottled skin is visible they feel warm. Also quite tingly. I know Fibro affects the nerves, so it could be that, or bad circulation? Not sure. I just hope it's not a sign of something worse going. So weird. I see my doctor next week so if it's still bothering me, I'll mention it. Right now I'm putting it down to "new weirdo fibro thing" Anyway, if anyone thinks it would be better to start a new thread on this subject, we can do that instead. Otherwise, any ideas?
  6. Magnesium and nightmares

    Jumping back in on this topic. I've started taking my magnesium earlier in the evening rather than shortly before bed like i had been, and so far so good! Still regular and less muscle spasms, but no crazy sweaty dreaming (or not as vivid at least). I'm taking about half the recommended daily dose though (250 calcium/125 magnesium) but taking it daily seems to be working fine. Maybe on the weekend (when I know I don't have to get up super groggy for work) I'll test the theory out and take it before bed. If the technicolour dreams come back, I'll know it's the magnesium. (seriously, I wake up feeling kinda drugged, but that could be it interacting weird with the medication I'm on) Sweet dreams!
  7. Little C

    Oy, that is not fun. I'd go super uber strict for a month or so. cut out all processed stuff (or as much as humanly possible) and stick to safe "whole foods" That should tell you if you're reacting to a pre-made product that might be in the 20ppm limit but still have trace amounts. (I'd be suspicious of any quaker stuff, personally. Not sure if they use pure oats or not). If that doesn't help things, good to look at other intolerances: dairy, soy, nightshades, etc. Then there's always the possibility that it's something else completely. For the longest time I was sure my achy days were just another celiac thing. NOPE! FIBROMYALGIA! yey. Anyway, hope you can get to the bottom of it. Feel better!!
  8. Magnesium and nightmares

    Really!? Well, that could explain a few things. I started taking magnesium/calcium supplements regularly a few months ago (and it's helping a lot with my twitchy muscles), and have indeed been having very vivid intense dreams. I've been blaming my medication for Fibromyalgia, but maybe the combo of the drugs + magnesium is sending my subconscious into overdrive. They aren't lucid, but they're like stepping into some near-future dystopian sci-fi novel. Seriously, some good writing material. How much magnesium are you taking? I think mine amounts to about 250mg (+500mg calcium).
  9. Weight Gain!

    I always laugh when people say they're going gluten free to lose weight. HA! tell that to the +10lbs I lost in a month before going gluten-free. Of course, last winter I went a little too far the other way, so when I lost 10lb fairly quickly this spring, I was relieved that my vitamin levels were all still good. It's stayed put for the past while, which is good. Anyway, great to hear you have your energy back! (cocoa nibs are highly deceptive little suckers)
  10. I also never had a formal diagnosis, but due to symptoms and family history, I do and will always consider myself having Celiac. As Cyclinglady said, you do want to get some more testing done if possible. If you're unwilling to do a gluten challenge, there may still be traces enough after 7 weeks to come up positive (worth a shot), or other conditions with the same symptoms should also be investigated. Anyway, back to the OP, yeah! It is that easy! When I went gluten-free 8 years ago I was feeling noticeably better by the end of a week! It took a long time to figure out all gluteny traps you can find yourself in if not careful, but man, if I only had to worry about gluten I would be soooooo happy. Of course, first came dairy, then came soy, then came a few other weirdo things that my body just won't tolerate. But even that just means: if it makes you feel like crud, don't eat it. Simple. If only the same thing worked for Fibromyalgia (oh! So it isn't gluten making my body cramp up into horrible aches. Good to know) But yes, it definitely puts things into perspective. It's not cancer. It's not dehabilitating. We don't need to take drugs. We don't even need to eat expensive special food (though a gluten-free baked treat is always needed on occasion). Not so bad. Keep it up and it will only get better!
  11. Montreal!

    I can't image any kind of large scale bakery pulling it off. Probably would be a tough crumbly lump of disappointment. Maybe more gluten-free bakeries will figure out the same magical formula as this place. Too bad its full of butter (I cheated on that aspect. No regrets). Croissant or no, Montreal is a beautiful wonderful city and you should def. go if ever given a chance.
  12. Montreal!

    Hi All, I just got back from my first visit to Montreal in a couple years, and had to report back. STUFF IS HAPPENING THERE! One word: Croissant. CROISSAAAAANT! Yes, the flaky exterior fluffy interior pull it apart in sheets melt in your mouth OMG I didn't think I'd ever eat anything like this again how is this even possible kind of croissant. I think I might have had a religious experience while eating it. In any case, if you happen to be in La Belle Province, in one of my favourite cities as it is, run, don't walk (or better yet, hop on the metro to Jean Talon) to La Boulangerie Marquise Sans Gluten. The most beautiful gluten-free bakery I have even been in. Aside from the aforementioned croissant, they have beautiful cakes and pastries, pizza, quiche, tarts, fresh bread, bagels, etc etc... Only downside is that their products do contain soy (I cheated. It was worth it) and some contain dairy (again, worth it), so if you have serious problems with that, please stay away (cause if you step in there you WILL be tempted. For reals). Aside from that, other places to go: - Creperie du Marche - at Jean Talon market. They only do buckwheat crepes, and they are pretty good. - Arepera du Plateau - not only the best arepas (cornbread sandwiches) I've ever had, but known as one of the best spots in the city. Get there early. - Mais - my favourite spot for tacos. Most everything on the menu is usually gluten-free, but be sure to ask. - Cookie Stephanie - another nice bakery in Old Montreal - Luv - lovely new mostly gluten-free vegetarian spot. (not listed as gluten-free but still amazing and very accomodating): - Le Vin Papillon - hands down one of the most amazing meals ever. They asked me what my restructions were before I even said, and put together 3 amazing plates. Of course, the wine is amazing too. - Lawrence or Larry's - have eaten at both and both very accomodating and lovely. Generally, I find knowledge of gluten-free (sans gluten) at most reputable Montreal restaurants is pretty high, so don't restrict yourself. Just call and ask beforehand. And of course, don't forget to drink some GLUTENBERG! 100% gluten-free and pretty dang good beer. Pick from their blonde, IPA, red ale, very nice belgian white, and if you can find them, their special releases like Myrcene de Glace. (I may have returned with a suitcase full of beers) Closed since I was last there (RIP) - Mi & Stu - I used to get bagels at this bakery up Rue Park, but they have since closed their Montreal location and moved to a commercial space. Bummer. Have you been to or live in Montreal? Leave your suggestions here!
  13. Hi ScarlettsDad, Sorry such a slow reply to this, but I also live in Toronto and definitely have a few safe suggestions. Of course, my tastes and your 5-year-olds are probably quite different, but I've got a few we might all agree on. First of all, as a general rule: don't order the gluten-free pizza/pasta anywhere unless the kitchen can prove they use dedicated equipment to prepare and cook it: fresh water for pasta, separate prep area and oven or other protective measures for pizza. Any place with flour flying around on a regular basis is going to be a real gamble no matter how careful the staff are. Anyway, here are a few Celiac safe and kid-friendly spots: Off the Hook: fish and chips, you say!? that are safe?! YES! It's true! This fantastic fish&chips joint is on Broadview just south of Danforth. They have a gluten-free chickpea batter, and keep everything safe by having a dedicated fryer for gluten free things, and another dedicated fryer just for fries! I have eaten there many many times and never gotten glutened (though it's still fried food, so have to go easy on it). It's a good spot to hang out if it's not busy, or you can get take out. The Dirty Bird: This is more of a takeout spot, but again with the fried food. They use a rice flour batter for the chicken, and the fries are safe too. They do make regular waffles, but can do gluten-free as well. There are 2 locations - one in Kensington market, and one on Bloor near Bathurst. Arepa Cafe - on Queen between spadina and bathurst. One of my favourite places to get a quick meal, but you could easly hang around for a while. Arepas are corn bread stuffed with stuff. Little tricky eating for small hands, so can get a platter instead. Almost everything (except I think for fried stuff) is gluten-free. Magic Oven - I can't do dairy either, so this is my occassional pizza splurge. They are very conscious of gluten free safety, have a dedicated fryer for fries (and wings!), make pretty decent pizza though it is not cheap. Il Fornello - another safe place for pizza, though also not cheap. I believe one of the owners is celiac, so they put gluten-free pizza in a special bag in the oven to keep it safe. If you like Mexican, the Playa Cabana family of restaurants is good option. One of their owners is Celiac, so they actually mark items WITH gluten on their menus. And if very adventurous, Chez Riz at Yonge and Lawrence, and on Mt Pleasant are both asian fusion (think dim sum and sushi) with completely dedicated gluten-free sections of their kitchens. There are lots of good restaurants that will accommodate gluten free, but they do tend to be on the "nicer" side, not likely a chain. Wherever you do want to go, be sure to call in advance and ask what they can do for your little one. And of course, if you want to take the family out but are afraid to feed her anything there, ask if you can bring something for her. Most restaurants are accommodating as long as everyone else is eating. It's also helpful to ask around your neighbourhood. Of course, there's always desert: If you don't know already, there are several excellent 100% gluten free bakeries in town: Bunner's Bakeshop (in Kensington and the Junction) and Almond Butterfly (on Harbord) are my favorites. Anyway, don't be afraid to eat out. Just plan ahead and go prepared. If something doesn't feel right, dig out the "back-up" meal Good luck!
  14. Chiming in here as one of those people without a confirmed diagnosis. I did have blood tests done a couple times which were negative (don't know if they ran a full panel or not), but my Mom has Celiac (confirmed diagnosis by biopsy), my sister also had negative blood tests but her biopsy was positive. I was sick of being sick and didn't want to wait however long it would take to do a biopsy (and right before a move), so I went gluten-free and never looked back. There's Celiac on both sides of my family, so could be a case of a double positive = negative. In any case, I have always concidered myself to have Celiac Disease and won't let anyone tell me otherwise. As for your symptoms, you could have intolerances to other foods, not just gluten. Nightshades (potatoes, tomatoes, peppers, eggplant, etc) are known to be inflamatory. Also, I have trouble with eggs for some weird reason. You could be eating completely gluten-free at home and having problems with something else instead. Sounds like you're taking necessary precautions. I was just diagnosed with Fibromyalgia, so I know what that "i can't move" pain is like. NOT FUN! Other people with Fibro have said going gluten-free helped them a lot. I have a friend with RA who has to eat gluten-free or her joints swell up bad. Even without Celiac, gluten and grains in general are hard to digest and hard on our systems. Probably helpful for many auto-immune conditions. So, might as well join the self-proclaimed Celiac club. I've never had genetic testing done either since I already know the answer to that, but if you want the information go for it. Best is to trust your gut and avoid whatever you have to. The doctors can call is NCGS if they need to, but best to treat it as Celiac.
  15. Missing Beer

    I am such a sucker for this question (and may be that member, or one of them at least ): Answer, if you can find them: Glutenberg (from Montreal, with several styles. My fav is the red ale) Groundbreaker (from Portland, doing really great craft beer style brews and experimental stuff) Ghostfish (from Seattle. I haven't had chance to try any, but they're supposed to be fantastic) Greens (they have a delicious belgian style blonde, and a dark and red ale; they have a few gluten-removed beers, so watch out) Celia saison (super lovely and light, with citra hops) Dogfish Head Tweason’Ale (strawberries!) New Planet (a bit syropy sometimes, but good; also have some gluten-removed types, check the labels) Or if you want things that are lighter, New Grist is pretty good. They have a ginger beer now too that is definitely tasty. Yes, they're a bit more expensive, but always worth having one as a treat. Also, stay away from Bards, unless you like beer-flavoured water. Some advice: give yourself some time before diving into gluten-free beer territory. There's good stuff out there, but it is different. I think our taste buds need a while to "forget" real beer first. In the meantime, cider is good. So is brown liquors. If it's distilled, it's safe. Cheers!