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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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    About alwaysafter8

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    1. alwaysafter8 added a post in a topic Ttg Levels Almost Triple After Eliminating Gluten?   

      Of course, I find out my ridiculously-high-TTG-results on the anniversary of 6 weeks into my elimination diet. Man, if I knew this super restrictive diet stuff wasn't helping AT ALL I would have just continued to eat my gluten-free grains/bread/muffins & been a whole lot happier!
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    2. alwaysafter8 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      Ttg Levels Almost Triple After Eliminating Gluten?
      I was diagnosed with celiac April 27th, 2012.
      Prior to this I had pretty much eliminated gluten (since Aug 2011), except for the "made in a facility" things & the occasional cheat (maybe once a month). When I got my TTG test results back, it was at 60.

      I got home & immediately eliminated all the "made in a facility" items, only getting glutened a couple times (once in the first week after diagnosis & once about 6 weeks ago). Then 6 weeks ago, since I was still having symptoms, I cut everything & did an elimination diet, to see if there was another intolerance I had. I cut: corn, potato, nightshades, fruit, ALL grains, dairy, sugar, soy, pork, chicken, turkey, onion, garlic, anything packaged/processed.. and I've been VERY diligent. Everything I make is from scratch, anything that I eat that is packaged (spices, nuts/seeds) are stamped gluten-free. My diet is: vegetables (the ones I don't react to), coconut, beef, bison & fish. Fish & eggs make my DH flare up so I limit those. Nuts I seem to do okay with (thankfully!)

      I have been neurotically avoiding gluten. Safe makeup, safe shampoo/condish/soap, safe medication/supplements... there's NO way I am having gluten (aside from the couple cc's I mentioned earlier). But there is NO WAY I am eating MORE gluten now, than I was prior to my diagnosis. Absolutely NO WAY. All I've done is cut things since being diagnosed. So, going in for my followup test, I wasn't expecting my numbers to go down a lot, but I was prepared for them to stay the same at the very least. I know healing takes time.

      What I DID NOT expect, was to learn my TTG has jumped to 155!!!! My useless doctor says she's "not worried" about my huge levels & that "we'll retest in November". Oh, that's nice, but what about me in the meantime? Clearly what I am doing isn't working, either that or I might have some other autoimmune disease?

      Or am I getting glutened because I stare a little too longingly at the cupcakes in the window when I walk past the bakery??? (kidding.... I think?)

      Does grainfed beef have gluten in it? What about grainfed eggs? I'm SO confused.

      I've had my thyroid TSH checked, it's fine. Sodium/potassium is fine. B12/D2 is fine. Calcium/magnesium okay. I have anemia, but I've been diligently taking my iron supps & my level has been slowly inching up. I have lower-than-expected bone density, but I've been taking calcium for it too. I'm taking a litany of supplements (all gluten free) to make sure I'm getting my nutrients even with this malabsorption thing.

      What else can raise the TTG other than gluten? I haven't had a biopsy or any other celiac related tests done (AGA-IgA, etc)... because apparently my doctor is completely incompetent & I guess I am supposed to diagnose myself & ask for specific tests (like I did with the celiac thing). But, sadly, I'm not a medical doctor, I'm just a sick woman who is desperate & slowly (okay, quickly) losing all hope that I'll ever recover from any of this.

      Frustrating! Where do I go from here?
      • 4 replies
    3. alwaysafter8 added a topic in Gluten-Free Foods, Products, Shopping & Medications   

      Red Apple Lip Products?
      Been eying Red Apple lipsticks for a while now & am preparing to make my first order, only problem is I'm having trouble deciding! I like almost every color; this could get dangerous for my wallet, damn celiac

      Anyone tried these lipsticks? Any favorites?

      Does anyone have either "Berry Blast" or "Love My Kiss"? Wondering about the level of shimmer/glitter in these two. Is it very noticeable as glitter or does it just give it a sheen? I'm more of a matte/gloss kind of girl myself, but these two look pretty enough I might be able to pull them off as long as they're not too glitzy. Hard to tell from the pictures, with the camera flash.

      Also wondering about their lip balm; does it really help when worn under their lipstick? Or is it just another balm? I'd like to go for their trio deal but don't want to buy just another lip balm since I have two other gluten-free ones.

      The lip glosses look nice too, especially for layering. Tell me your favorite combinations / colors, whatever! Are the reviews too good to be true?
      • 1 reply
    4. alwaysafter8 added a post in a topic 15+ Years Suffering W/ Mis Info.   

      Fellow Vancouver celiac here

      I can relate so much to your post -- I had all those gross symptoms too. In the beginning cutting gluten I've found it's hard to differentiate between possible cross contamination, other food intolerances (dairy, soy, corn, nightshades, coffee, etc) & just general healing. It wasn't until I cut gluten completely that I realized I had other food intolerances, which I was mistaking for gluten reactions. Lactose intolerance is common for celiacs, for instance. If you still eat dairy you could try cut it for 2 weeks then add it back in & see if you react. If you react to it, there's the chance you could tolerate dairy later on, once you're healed from being gluten-free.

      For the first 8 months of me being "gluten free", I was still eating a lot of packaged "gluten free" foods, but I've since found instead of switching to all gluten-free versions of foods (some of which are made in a wheat-processing-facility), it's best to stick to whole foods. After being sick with gluten for so long it's important we're eating as much good food as we can -- usually means avoiding packaged stuff, even the 'gluten free packages'. Luckily, meat, eggs, fish, fruit & veg are all naturally gluten free & safe

      Making your own sauces is the way to go. I've been infusing bottles of olive oil with herbs &/or garlic cloves for extra flavour. Stock up on safe spices: McCormick brand (glass bottle with the green label) is gluten-free.

      Cooking in batches is a good idea too; freeze individual meals in ziplocks.

      Choices sells a lot of gluten-free (safe) things & they have a rice bakery that does only gluten-free baking. They have ridiculously good "sourdough" rolls! Enjoy Life & Glutino are safe brands for snacks too. Silverhills makes two great gluten-free bread (the best I've tried), "Chia Chia" & "Mack's Flax". They are usually in the frozen section of SaveOnFoods or at Planet Organic. Make sure you get the gluten-free version though, as they also make regular bread with identical names.

      If you're going to buy packaged, look for the gluten-free in a circle label; that means it's certified safe. Some products say 'gluten free' (as in no gluten ingredients added), but if they're made in a wheat facility, they're not safe for the super-sensitive.

      A great source for certified gluten-free nuts/dried fruit/choc/candy/treats/baking goods is: nuts .com; they sell bulk & ship to Canada. Nuts & trailmix (you can buy bulk ingredients & mix your own are easy grab&go snacks. Did I mention they're CERTIFIED gluten-free?! (Just make sure you're shopping in the gluten-free section only; they also sell reg stuff).

      If you do any baking (or are willing to try), google Elana's Pantry; she has lots of really simple easy recipes (bread/muffins/desserts inc. meal ideas). I am not the baking type but her recipes are great & pretty much foolproof. Best of all, most recipes use the same base ingredients so you don't have to buy lots of different items!

      I found going "paleo" at first helped immensely. I've been eating this way for a month now & my symptoms are finally fading. My gluten-free diet was not enough. Elimination diets or restricted diets (like paleo) are an option to look into if a gluten-free isn't helping. Also, a full-spectrum multivitamin, digestive enzymes & probiotics are helpful to take in the beginning to support your digestion.

      Otherwise, for cross contamination, make sure you have your own toaster, set of wooden spoons, teflon dishes, scratched cutting boards, colander.. all of those items can 'hide' gluten.

      Hope some of this helps
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    5. alwaysafter8 added a post in a topic New Celiac, Healing But Still Having Symptoms.   

      Good visual.... it does feel like my gut is on fire sometimes!

      Thanks for all the support, I guess my gut took decades to get to this point so I shouldn't expect it to heal within a month or two. I knew this, but sometimes it's hard to know if I'm getting better or not, with symptoms flaring randomly (or so it feels like it!)

      I've started a food journal again to try map this out & am on my third day of no-grains... so far my bloating seems to be reducing a bit. I'm craving baked goods all over again though! Going to try cutting them all for 3 months on an elimination diet & eat low FODMAP foods for now as I seem to have difficulty with foods that all fall under that category.

      I'll definitely stick around & see what else I can learn here. The recipe forum, too
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    6. alwaysafter8 added a post in a topic New Celiac, Healing But Still Having Symptoms.   

      Interesting; I hadn't heard about the iodine connection! I do eat a lot of seafood for the Omega 3s & because it's my favorite kind of meat. Guess I'll cut that down & see if it helps my DH. Thanks!

      As for my cats, well, they've been grain free even before me! My one cat doesn't tolerate grains at all.. I guess that should have been a hint that her mom wouldn't, either
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    7. alwaysafter8 added a post in a topic Are Sympoms Worse After Not Ingesting Gluten And Then Ingesting It?   

      I'm not ravenwood, but I get internal bleeding from gluten too.. basically when you go to the bathroom there's blood. For me, a pretty significant amount (sorry TMI). Or you can have blood showing up in your stool, it makes your stool look black & 'tarry'.

      Before I was diagnosed I lived exclusively on gluten, not even kidding. I couldn't get enough. I had lots of symptoms, but none immediately after eating. Now, since I have been gluten free I have the same symptoms when I eat gluten, but much more intense & symptoms I haven't had before, too. I can tell halfway through the meal if there is any gluten in it. In a way I've come to look at it as a good thing; at least I know right away.
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    8. alwaysafter8 added a post in a topic Anyone Recover From Chronic Insomnia After Going gluten-free?   

      I had insomnia my whole life until going gluten-free. I had accepted it for the most part & lived on a 'night owl' schedule, sleeping in until 3pm. Before I cut gluten I was taking 5HTP, & that helped a lot get my sleep back on schedule. Cutting gluten helped the rest of the way; now I have a normal sleep schedule! Now, if I have gluten on accident I can always tell because it messed up my sleep; I sleep forever (okay, 12+hours) & still wake up tired.
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    9. alwaysafter8 added a post in a topic It's Official . . .   

      Funny how a diagnosis of such a 'bad' condition can be so relieving, if even just to know we're not 'crazy'! You're lucky to be diagnosed so quickly & good on your detective skills for demanding the tests! Sometimes it really feels like we know more than the doctors do, doesn't it!
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    10. alwaysafter8 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      New Celiac, Healing But Still Having Symptoms.
      Hi, I am new to this gluten-free world. I wasn't sure if this post should go here or in the intolerance forum, so forgive me if I chose wrong!

      Anyway, I was diagnosed with bipolar last August & while I was researching natural ways to treat it, I came across research that showed gluten triggers mood swings. I cut gluten then (all main sources, not worrying about cross-contamination), went through a brutal withdrawal & then felt better. My foggy head lifted more than it has in years! That was enough to tell me I needed to be gluten-free.

      Eventually it seemed like my progress plateaued, & yet I still had many symptoms (foggy head, difficulty getting out of bed, pregnancy-esque bloating, cramps, DH, the perpetual runny nose.. etc). I would cheat on my diet on occasion, & I'd get instant cramps & massive bloating, then spend the next 4-5 days in a really bad, low, depressed mood. So I didn't cheat very often, maybe once a month.

      I finally got my doctor to order a blood test for celiac this April, even though she said since I wasn't eating gluten regularly it might be a false negative. I wasn't willing to challenge gluten but I got the test anyway & I have celiac disease! My TTG was 60. Since then, I've cut out all the trace gluten from my diet (including the 'made in a facility' items), got a new toaster, new teflon pans, threw out all old wooden spoons, etc. I think I've gotten the hang of it, for the most part.

      My issue now is I still have symptoms, most namely bloating & DH that flares up every now & then. The bloating is the main issue, only because it's the only symptom I can actually see (since I'm 'bipolar', it's hard to know if the joint aches, low mood, anxiety, etc are all 'in my head' or symptoms). But still, almost everything I eat makes me bloated. Fruit, vegetables, meat, grains.. I can even have a glass of water & get bloated! I am taking probiotics, l-glutamine, fish oil, slippery elm powder... not seeing much improvement with them yet.

      Now I'm not sure if my symptoms are just part of the healing process, or if I'm having intolerances to other types of food. I already know I can't tolerate dairy (casein, not lactose) or coffee & I seem to have issues with corn, potato, soy, rice. I had an allergy test for soy & corn, but neither was positive. I've been eating these grains because I thought they were safe, but then I started reading about cross-reactive foods! Now I'm paranoid that I am prolonging my healing OR doing more damage by eating them because I'm getting bloated. I cut all grains about a week ago to attempt an elimination diet, but as I am severely underweight as it is, cutting starches/grains is a little distressing.

      I guess what I'm wondering, is how long did you have symptoms for once going gluten free? Is it common to bloat up like crazy after almost everything you eat when you're still healing, or does this mean I might be intolerant to other things, too? Do sensitivity tests even help? Would cross-reactive foods show up as intolerances if they're irritating my intestine? My doctor is useless when it comes to this sort of stuff & I'm basically just looking for someone to tell me I'm not crazy. Or that I am. Either way, tell me something, please! I feel so lost
      • 6 replies
    11. alwaysafter8 added a post in a topic New Study On Maize And Celiacs   

      It wasn't until I went glutenfree that I noticed I had an issue with corn too. Of course, it's in pretty much all of the prepackaged glutenfree goods! Guess it kinda forces us to eat healthy, whole foods.

      Makes me wonder, though, how many other foods cross-react with gluten (& cause damage) that we don't know about yet, because there haven't been enough studies? I react to dairy, coffee, corn, potato, rice.. the more I read the more it seems it is common among celiacs, to be intolerant to more than just gluten. Food shouldn't be this difficult
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    12. alwaysafter8 added a post in a topic Could It Be Fructose Malabsorption?   

      I get this too. I'm hoping it'll clear up once we heal from celiac damage, but I'm always an optimist

      From what I've read, it's best to just have small servings of low-fructose fruits (like 10 grapes, lemon/lime/grapefruit, berries, ripe bananas) on an empty stomach. Then wait 30 minutes before eating anything else

      High fructose vegetables should be limited too as well, generally 1/2 cup max. I found limiting my diet to lowfructose veg + cutting out all fruit has helped. In a couple weeks I'm going to challenge some lowfructose fruits & see how it goes.

      I believe there's also a breath test that you can take that will show if you're not digesting it properly.
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    13. alwaysafter8 added a post in a topic Corn Sensitivity   

      Does anyone know, if we have intolerances to certain foods (like corn), would it show up on an allergy test or is it a different type of test we need to get for sensitivities? I had a corn allergy test, that showed up negative (no 'allergy'). But now that I'm reading about cross-reactive foods & intolerances in general I'm not sure.

      My doctor didn't have any advice for me (she didn't even know how to order an allergy test!) & just told me to visit here, so here I am.
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    14. alwaysafter8 added a post in a topic Question For Those Who Are Grain Free   

      I am thinking about trying this out. I'm not sure if I'm being overly paranoid, but it seems like any grain I eat I react to (pregnant-esque bloat, gurgly stomach..). I believe I have a leaky gut & I'd rather go grain-free now than develop more food intolerances.. hard though, because I am such a carb/baked goods kinda girl. Well, I was, I guess.

      Glad to hear we can use coconut & nut flours! Guess I'm going to have to get back into baking.
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    15. alwaysafter8 added a post in a topic Oh Nuts!   

      I was wondering about the "made in a facility" label, too. I'm new at being gluten-free & I wasn't sure if I was being too paranoid not eating things with that label, especially nuts (walnuts, in my case!). As if just avoiding wheat as an ingredient was hard enough.

      I had dried beans with that label, too.. wasn't sure if soaking them would save them, so I haven't used them yet. I just get so sick on tiny amounts of gluten, so it's not even worth it to risk it.

      I feel like santa.. always giving away my inedible food!
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