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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 LeanneMarie

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    1. LeanneMarie added a post in a topic Whey Protein Gluten Problem   

      Yes Kareng---however the rest of the posts on this thread are about how some whey is bound with certain peptides and may not be gluten-free after all. So I'm wondering about this as I definitely have glutening symptoms..
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    2. LeanneMarie added a post in a topic Whey Protein Gluten Problem   

      Bumping this thread up because I believe a recent glutening may have happened as a result of a new protein powder I was trying, but trying to piece together knowledge from this thread to see if that would be something possible.
      The brand is Whole Foods "100% Grass Fed Whey Protein Chocolate Flavor". These are the ingredients:
      "Whey protien concentrate, cocoa powder**, natural chocolate flavor, natural vanilla flavor, xanthan gum, stevia extract, lo han guo fruit extract, whey protein isolate.
      **Fair trade certified.
      Contains milk ingredients. Produced in a facility that processes tree nuts, eggs,and soy."
      So, because it's not the top quality of protein (it wasn't that expensive) there's no breakdown of what the proteins are made up of. I was naiive and assumed that whey would be gluten free...then read this thread. I checked Whole Foods' gluten free product list and it's NOT on there. Obviously I should have checked BEFORE but I thought I was safe.
      I had this stuff 3 days in a row and definitely felt "glutened" but I'm not sure if it's possibly from this or something else (went grocery shopping and decided to get gluten-free oats as well, not sure if it was the powder or the oats). Still figuring out how sensitive I am, a year and a half after dx... any chance they could have whey peptides or anything like that in there without having to label it?
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    3. LeanneMarie added a topic in Celiac Disease - Coping With   

      Celiac And Birth Control - Stopping Birth Control Made Symptoms Return?
      Hi everyone,
      I was diagnosed in November of 2013 with celiac and have been EXTREMELY strict (never ever cheat, possibly sensitive to trace gluten, etc.). I started hormonal birth control about 3 months after my dx and never really considered how the BC may be impacting my gut flora. For the last year and a half I've had my ups and downs of recovery; slowly figuring out what types of things are easier and harder for me to deal with or what creates symptoms. I decided recently to stop the BC, because I wanted to see how I felt physically without it. I didn't really notice much change except my face broke out from the drop in hormones.
      So, in the beginning I used to eat gluten free oats all the time for breakfast, but haven't in probably 6+ months. Tuesday I ate them for the first time (around 8am), and woke up the next day with an awful headache (the type I used to get from gluten). Wednesday morning was the first day of my first period off of BC. My period was EXTREMELY heavy, and around 11:30am I started to feel kind of weak, faint, shaky, etc. I did not feel well. My cramps were really bad and I was losing what felt like a LOT of blood compared to how my period used to be when I was on BC. The rest of that day I was miserable, and chocked it up to an extra heavy first "natural" period off of BC.
      However, Here I am 6 days later, still bleeding(!) and feeling light headed/brain foggy.The headaches aren't as bad, and I think are getting better. But every time I eat even a TINY bit, or drink water, I start feeling light headed again which makes me think this is more Celiac related and less menstrual or low-iron symptoms. Could it have been the oats? Is this just a side effect of a super heavy period in a sensitive body? I feel confused!
      Has anyone else experienced this? Has anyone else gone off BC and had a celiac-ish reaction? Any help is appreciated, please let me know what you think.
      THANK YOU!
      • 2 replies
    4. LeanneMarie added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      Symptoms Returning?
      Hi everyone,
      So I was officially diagnosed with Celiac in late November of last year. So, it's been about 6 months of very strict gluten-free eating (which started the day after I got my endoscopy and was told to start immediately). My symptoms before being diagnosed were constant throbbing headaches (esp. bad when waking up), night sweats, feeling "out of it" a lot of the time, getting SUPER sleepy about 15-20 mins after eating meals (which usually included gluten), muscle/joint pain in my back, nausea, and I really knew something was very very wrong when I started having all the digestive problems (although this was the last of symptoms to pop up, and the last to go, too).
      So, through February and March I was doing really well, I felt almost totally back to normal. Then late April and May, when things feel bad again. Same symptoms, ramping up over time to now, beginning of June, where I'm feeling similar to how I did before going gluten free.
      Things were especially bad on May 18th, after I ran the Brooklyn Half Marathon -- extreme nausea, etc. (and this was not over exertion, I have run this race many times) in a way that I could only recognize as similar to what it felt like when I was still eating gluten.
      As far as I know, I'm not getting cross contaminated. Nothing has changed, and if anything, I've learned more and become MORE strict. My boyfriend and I are EXTREMELY careful with any foods containing gluten (he cooks his pasta in a separate colander, is the only one to use the toaster, uses a different cutting board, etc etc.) at home, and I usually bring my lunch to work from home. For dinner we sometimes go to dinner but only at the few places I've identified as gluten-free friendly, because I hate grilling the waitstaff about every sauce and ingredient (which sucks, because this used to be a big part of my social life).
      What else could be going on? Does it just take this long to heal? Could I now be more sensitive than when I started eating gluten free? I am so frustrated and feeling sick again...and I thought I was out of the woods Any help is appreciated. Thanks.
      • 2 replies
    5. LeanneMarie added a post in a topic Confused And Annoyed!   

      Thank you everyone! Just wanted to come back and say thank you to everyone who replied
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    6. LeanneMarie added a post in a topic Confused And Annoyed!   

      Thanks for the responses, everyone!
      I definitely had all kinds of tests done and confirmed as positive before starting eating gluten free (I was not about to give up gluten if I didn't have to! but turns out I have to...), and so far is seems to be helping all of the mysterious symptoms I was experiencing, except I feel like the digestion actually felt worse after quitting gluten. It's a tradeoff, I guess! I said I would do anything to not wake up with a pounding headache, aching body, and have energy / be able to feel rested again....and I got what I asked for, so far. 
      I'm glad to know that hopefully patience and dedication will resolve the digestive issues...It all just feels strange because I feel almost more digestive-symptomatic than before I quit eating gluten. So I guess that I really am just able to feel what is happening now, more clearly than before, now that the other body drama has taken a backseat.
      -I will definitely try the ACV water (I like the taste of it, too! kind of like kombucha).
      -I checked the supplement for fiber I was going to take and there is nothing in it but ground flax seed and some probiotics, it seems safe and was recommended on this board by a few people in other threads as being helpful...I'll try it.
      -I will also try and avoid most dairy since I'm pretty sure that the damage I had going on when I got my endoscopy is not healed up yet, and that would explain not being able to tolerate the dairy/feeling really messed up after eating a large amount of it on Saturday last week. I know yogurt is dairy and has probiotics in it, do you think it's worth it to keep eating yogurt for the nutritional benefit of it? I have access to goat milk yogurt too, which is way lower lactose, if that might be a better option.
      -I got my vitamins tested and I'm on a raw iron supplement and vitamin D supplement now.
      -I already cook most of my meals at home but since I live in New York City the not-eating-out is SO hard. Already tired of grilling waitstaff in even the sushi restaurants about their food preparation techniques and seeming like a psycho :-/ I am also sharing a kitchen with my boyfriend (we are both vegetarian for the most part, and sometimes eat seafood) who does eat gluten (although, not that much) and he is being very careful....we have tried to separate all the things in the cabinets in fridge, he makes extra sure to wash down the countertops and stove after cooking, we are going to get some separate cutting boards and wooden spoons soon so I don't have to keep using random plates to cut things on...I think I'm getting closer to having him try eating gluten-free with me, too.
      All and all I've been very dedicated and have not caved once to the temptation of eating gluten! At least, not to my knowledge. I'm hoping there will be a point where I start to feel everything turning around...sounds like most people have that happen after a while (different for everyone). THANK YOU ALL for all the help so far! This board has been really helpful for learning about my symptoms and seeing that I have been feeling things that are "normal" for this diagnosis....and helped me to worry less Thanks again everyone! I'm sure I'll have more questions. 
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    7. LeanneMarie added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      Confused And Annoyed!
      Hi everyone,
      This is my first post. I was recently diagnosed with celiac in early December 2013. I finally saw an awesome  gastroenterologist in November after an entire year of mis-diagnoses from SO MANY specialists/doctors and ridiculous other ailments...chronic headaches and flu-like symptoms, foggy headedness, sinus congestion, the list goes on and on and on... but I never had digestive symptoms until this past fall. Then out of nowhere I was really "backed up", which I thought was just a fluke for a little while, but got really bad while on a vacation across the country. I came home, saw the gastro doctor, and she added a blood test for celiac onto a larger lists of blood test, which came back (shockingly, to me) glaringly positive. After a gene test (also positive) and a positive endoscopy as well (moderate damage), I was fully diagnosed with celiac, no doubt about it. 
      So obviously right after my endoscopy I started eating gluten free, and have been finding much relief from the headaches and foggy headedness even a month into eating gluten free (I'm frustrated right now with all the changes, but that's a different story). I also feel a LOT less fatigued, and have been feeling more well-rested. 
      MY QUESTION has to do with digestion...My issues with the "c" have not cleared up. At all. For a moment I thought it was getting better/easier, but no, it hasn't. I also had a temporary bout of "d" on Sunday of this week after having a very dairy heavy meal the night before...I'm assuming that's what it's from. But then right away the "c" is back, and worse than ever. Gurgling, belatedness, and...nothing. Ugh. 
      Can anything help? I bought ReNew Life "Fibersmart" supplements that have flax and probiotics....but I haven't tried them yet (just got them tonight). What else can I do? I'm just worried and frustrated, and could use any help you all have to offer. Thank you!
      • 14 replies

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