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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 FREE Celiac.com 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.


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Pegleg84 last won the day on December 1 2016

Pegleg84 had the most liked content!

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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. 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.
  2. 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!
  3. Yes, definitely! The sooner they find out if they have it, the sooner they can heal up and, as cyclinglady said, avoid a lot of potential long term health issues. Also be aware that, with bloodtests, false negatives are more common than false positives. I'd recommend they get a full bloodwork panel done to check for vitamin deficiencies, which could in itself be a sign of malabsorption problems. I had iron anemia as a teenager, which looking back was probably my first Celiac symptom. My mom and my sister both have Celiac as well. You could also suggest that your parents or any siblings get tested as well.
  4. Oh man, we all need cheat days! I can't handle dairy either, so finding decent safe gluten-free pizza has been hard. Only one place in the city that does it right, and it's $$$ so a treat 2-3 times a year. Anyway, Daiya (who make vegan cheese substitutes) have started making all kinds of new stuff including a gluten/dairy/soy free vegan frozen pizza! They're not amazing but pretty decent, reasonably priced for the size, and becoming available lots of places near me at least (not sure if Daiya is a big thing in the US or not), so if I see them on sale I pick up 2 or 3 for "I really don't want to cook right now" cheat nights. Of course, if dairy isn't an issue, I'm sure there are others a million times better.
  5. If you have time to prep at home, and to cut back on the inevitable debris of pre-packaged stuff (and know exactly what's in your food), prep/cook 2 or 3 things you want to eat that week, some meat and veg, premade sandwiches or salads, etc, and divide them among containers you can just grab from the fridge on your way out of the house along with ice packs for the cooler. Meat would need to be eaten up in 3-4 days, so might need to cook some a couple times a week (or take leftovers). Also, if you don't want a ton of prepackaged snacks, make cookies or another treat and stick em in a container. Big bags of chips, nuts, whatever, could also be stored in smaller containers or zippie bags if you don't want to have the whole thing in your car. Keep a box of cutlery (at least 2 sets), small jars of any spices you like, maybe a small cutting board and a sharp knife, and napkins/paper towel. All you have to do is remember to take your dirty containers and cutlery in for a wash every (other) day. Whatever you do, don't go anywhere without snacks! You do not want to be starving in a gas station if you can avoid it. Happy eating!
  6. Ditto on Ennis's idea that you could be going to heavy on the rice in 1 sitting, either with or without garlic. I have this problem too. LOVE rice, but find it hard on my system if I eat too much at once. I can't handle much brown rice, and basmati seems to be the easiest to digest. To combat this problem I've been trying to eat at least as much meat/veg/other stuff as I do rice in one sitting (easier said than done). Try (TRY) cutting back on the amount and see if that helps. I also buy Jasmine from Thailand and have never had any gluten issues. I always wash my rice, regardless of what kind it is. It gets dusty and you can cut down on the starch content a bit by rinsing it until the water is clear (the 3-times rule is a bit superstitious but it works).
  7. I thought about that, but honestly the IBS hasn't been a problem for a few months (even with my current constipation), whereas my Fibro symptoms have taken over. Who knows, maybe it was something else that's cleared up or, more likely, I'm just not eating things that aggravate it. Now, instead of pain in my gut I have pain everywhere else. Yay! (that was actually a big sign that something else was going on. What? I'm in pain and it's not my stomach? This is weird...)
  8. Reviving this thread again with another update: I've been diagnosed with Fibromyalgia. I saw the rheumatologist a couple weeks ago and my GP this morning. I started on Cymbalta about a month ago and it appears to be helping somewhat. It's been rough though, pain coming and going, trouble sleeping and tired during the day, crazy muscle twitches and restless leg. Right now I just don't exactly know what I'm supposed to do or not do. It's not as simple as figuring out what not to eat (though there's that too). But, just like Celiac, I'll get a handle on it eventually. I can't get rid of it, but I can get to the point where it doesn't control my life (so I am trying to tell myself right now.) I'm thinking that Celiacs developing Fibro must happen to a good percentage of us. I have two friends with Celiac who were recently diagnosed with Fibro as well. (one of my friends and I swear we're twins or something). I'm not saying that Fibro is caused by Celiac, but it is often triggered by illness or trauma. Looking back I think I started having Fibro/IBS symtoms after a very bad glutening about 4 years ago. Maybe it's been longer. Who knows. In any case, right now I feel ok and that is nice. I haven't had much trouble with IBS symptoms lately (I seriously cut back on nightshades, especially chili pepper, and that seems to have made a big difference) but so far can't pinpoint a food that triggers or helps alleviate my Fibro symptoms, though I have noticed eating less grains may be helping. It's going to be a long slog, but glad I have all of you in my corner.
  9. Yeah, I was pretty surprised. However, lots and lots of fantastic wine and gin. Even the house wine at a pub is going to be a nice French or Spanish something. Also drank a lot of port. And they take their gin super seriously there, some really good stuff. The closest I got to having a beer was trying some gin distilled from geuze (wild-fermented beer). Very nice. Make up for the lack of beer by eating all the fries.
  10. This sounds familiar. Does the pain feel like its actually in your ribs, sore when you press on it? It could be costochondritis, which is inflammation of the cartilage between your ribs. It seems to be one of those weird things that tends to affect celiacs, could be a symptom of glutening or brought on by something else. I had a bad case of it a few months after going gluten free. Started as just a weird ache, and one morning it felt like I was being stabbed. Spent all day in emergency while they ruled out heart issues. Anti-inflamatories helped and it went away after a few days. Never came back that bad again. It could also just be heartburn-type symptoms triggered by gluten. I would see a doctor though, because you want to rule out whether its your heart or something. You're still early in your healing process, so not only are you probably not an expert at the gluten-free diet yet, but your body is readjusting to the new reality and doing all kinds of weird stuff. Hopefully this will resolve soon and not be a regular occurrence. It would only have a connection to your bowel issues in that it could be yet another fun affect of Celiac disease. Good luck and feel better soon!
  11. Belgium trip report! I just got back and had a great time. As far as I can tell, 0 glutenings. I did get into some dairy a couple times, but the effects were minor and short lived. The worst trouble I had was after a very delicious and entirely gluten-free bowl of brown rice and curried chickpeas. My body has decided it does not like that much fibre and got my IBS going. I had no problems asking at restaurants since everyone speaks English, and everyone seemed to know what gluten-free meant. Labeled menus are also common in bigger cities. Anyway, some observations and recommendations: Fries: they take their frites seriously here, and it seems to fry anything other than fries in the fry fryer would be sacrilege, so they are most likely to be gluten-free. Always double-check though. Do note that they're usually fried in beef/animal fat, so not good for vegetarians. Sauces: to be safe, always ask for meat/fish/etc without sauce. I do think a lot of them are cream based, so you can ask about the ingredients, but easier and safer to go without. A steak or grilled fish, frites and salad is a good option just about anywhere. If you can eat dairy, there is cheese aplenty. Portions tend to be on the larger side, so don't got for the large of anything unless you're starving or sharing with someone. If there's somewhere you want to go, make reservations, even for lunch (especially in Bruges). Many restaurants are only open for a few hours at lunch and dinner, and stop serving before their posted closing time (we went to one place twice only to be turned away twice. ugh). Also, this way you'll have time to ask questions before you get there. No, I could not find gluten-free waffles. I think we're out of luck there. Exki: a chain of premade food cafes (like Pret-a-Manger) all over the place. Ingredients and allergens are labelled on everything. Beer: unless you can handle gluten-removed, we're also out of luck. Gluten-removed beers like Brunehaut and a few french brands were common in bars, but I didn't find a single one that was actually gluten free (Annoying since Greens is actually made outside Gent). Cider is also not very common. However, lots of good wine, and some of the best gin anywhere. Some specific restaurants we went to: Gent - Multituli Eetenkafe - great spot out just outside downtown. Labeled menu, big portions, great food. - Le Botaniste - we had lunch here twice. Organic vegetarian spot. Everything is premade but their containers are well separated so didn't worry about CC. Great food both times, a ton of it for cheap and fast. Sit in the sunroom in the back. Bruges - Reliva: lovely fine dining spot (very highly rated so reservations are a must) with vegetarian options. Almost everything is gluten free. If you can eat soy, you'll have no problem. A little pricey, but well worth it. - Soup: for a cheap quick meal, stop at this little soup place just off the main square. Just ask for no croutons or bread. - Cambrinus - we ended up going to both the smaller bistro/bar (excellent grilled shrimp and charcuterie), and their larger pub restaurant (excellent smoked duck salad). Both were open most of the day, reasonable, comfy, and knew their stuff. Brussels - Tan: this was my birthday dinner, at a surprisingly classy restaurant upstairs in the back of a health food store. All organic and locally sourced, mostly gluten free with vegetarian and vegan options. - Ricotta et Parmesan: this Italian spot was right across from our hotel. I was a little suspicious when their sign said "Free Gluten", but without prompting the staff explained they used separate pots and water for the gluten-free pasta. It's a busy popular place. Not cheap, but big portions. We ended up eating there twice. Good corn pasta both times. Lots of options for sauce, all of which are gluten-free. If you're staying in a smaller town, do your research and make reservations. Restaurants tend to close early, and may not be open on mon/tues, so you don't want to find yourself out of luck. We learned our lesson when rolling into a small town only to find the one decent restaurant open was no longer serving. We ended up at a family joint, which wasn't bad but definitely not what we were looking for. Anyway, general consensus: Belgium is fairly gluten-free friendly, but do your research first. Salut! Peg
  12. Feeling relatively better today because I had a moment yesterday where I just told myself: Stop freaking out!! I was getting super stressed and amplifying the (currently relatively minor) pain I have. Stop worrying. Stop focusing on it. Ta daaah! Sometimes that meditation and CBT training does come in handy. I know the pain is still there, but I'm not giving it a megaphone. Anyway, going to focus on mental clarity and keeping my diet decent for now. Am seriously cutting back on grains (weaning myself off, I guess). As I've said, my vitamin levels are great right now. Trying to be more diligent in taking my enzymes and probiotics. Spending more time stretching and meditating (if not actually on the cushion) and doing the stuff I need to do. In any case, I think I've got myself leveled out for the moment. You guys always make me remember that the best remedy is often diet and attitude. Doesn't mean I won't end up on drugs at some point, but I have to be able to do as much as I can on my own instead of just giving up. Will report back after I see the specialist. This isn't over yet.
  13. I live off of ginger. Grated, capsulated, juiced, pickled. It's the one thing guaranteed to help my nausea. Not so sure if it helps other pains though. I got some tumeric capsules (curcumin), but haven't been diligent in taking them, so who knows if that will make a difference or not. I've also been truing to do stretches at least twice a day. that seems to help with the stiffness, at least. Problem is that fibro has more to do with processing pain rather than inflamation, though I have plenty of that too. I've probably been more stressed than I thought lately (work is busy, pain is stressful), cause I've developed a massive canker sore under my tongue! Hard to talk and eat and yawn. So painful! Currently dealing with that, and tightness/pain in the side of my neck which is giving me a headache, along with the usual tingling/burning arms. Had a bad knot in the back of my leg on the weekend. Oy, it's been rough. I managed to get out of the house for a few hours on Saturday, at least. I'm currently debating whether to rush back to my dr. and get on the medication she recommended (Cymbalta or Savella, can't remember which). I'm hesitant because it's an SNRI antidepressant, and I'm worried about side effects. We leave on vacation in less than a month, and as much as I would like to not be in pain, I also don't want to be dealing with a bunch of weird side effects. It's hard enough traveling with Celiac. I see the rheumatologist right after I get back. Opinions? Should I get started now and see if it makes a difference? I wish I could just change my diet and magically solve my problem, but I don't think that's going to work in this case. I have cut back on grains lately, though still eating some rice and corn (for me, the more processed. I can handle rice noodles but not the grains, for example). I should cut out all the nightshades again (have been eating potatoes). Anything I can do to help, but I don't expect it to be a silver bullet. Thanks again for all your support in this. I've been worrying about it a lot. The pain sucks now, but the thought of spending my future in pain is even worse.
  14. Just looked it up..... oy. Really not looking to put myself on an even more restrictive diet right now, but might try it out at some point (I'm already going pretty easy on most things on the "no" list). At least it's a temporary diet, and I have heard good things about it. I have started taking tumeric (curcumin) supplements. Will probably be a while before I might notice any difference. Maybe it'll help inflammation (in my gut, other inflammatory pain) but not the fibro pain since it's not actually inflammation. I figured it was worth a shot. Current status: leg pain, but not too stiff. Will see how I do over the weekend (last weekend was not so bad). I'm on my way to hitting the "3 weeks of pain" needed to diagnose. Also, have never had this pain every day for this long. Trying to take it in stride (freaking out makes it a million times worse) Thanks again, guys!
  15. Thanks, guys Current status: not too bad. Legs are working. Arms a bit achy. Weird mild headache. I'm trying not to over analyze/fixate on the pains, since that tends to make it worse. I've been supplementing Magnesium, calcium, vitamin D & B12 every day for the past couple months. Iron every other day or so. I've seen a huge difference in my health this winter (other than this stupid pain) No colds/flu, my mood is good despite stupid things happening, energy is good despite the pain. I could maybe increase my D&B12, see if it makes a difference. Certainly hope they aren't causing problems instead. I get my thyroid checked at least once a year. so far it's fine, but that's a good point. I might be able to look back at my records and see what the thyroid counts are. I have also been kinda gassy lately. Eating a lot of root veggies. Don't know if that would be causing/adding to my problems or not. (I also pulled a muscle in the side of my tongue or something stupid like that, so I have legit pain on the side of my face! UUG! Hard to rest that muscle unless you never want to eat or talk or anything) Oh, and I've also been avoiding nightshades. Still eat some potatoes, but have cut waaaaaaaaay back on the chili pepper. Seems to have helped my IBS symptoms a lot at least. What is this AIP diet I keep hearing about anyway?