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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


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About kitkatkid

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    ~mommy of three gorgeous kiddos <3
    ~student/Research Assistant (behavioral neuroendocrinology)
    ~Dx syringomyelia 3/8/11
    ~Jesus Freak that loves ALL <3 this is a hate free zone! :D
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  1. :D no prob, support should always be free hugs for mom and dad too! haha I am such a creature of habit so thankfully it's not the end of the world!
  2. background in case it's helpful to the vets or any with info: I always had an "irritable bowel" since a teen or as long as I can remember I was quite embarrassed by it too because of the degree of gas and bloating ...always a ton of gas and bloating I was always trying to go off to relieve it privately which really seemed all the time it was very hard as i had bad self esteem and felt quite helpless with such bad stomach problems, and a lot of D all the time but too long ago to remember the frequency. However I was eating disordered from age 12 to 26 in different varying ways. I am a low panic person so to me between my mother having an obviously messed up stomach gas and bloating/pain, my first daughter seeming to follow in our foot steps I chalked my issues up to what runs in the family, and my eating issues for so many years. I would go through such severe periods of restriction of calories and sugar that when i caved once and ate a huge bowl of pasta, my poor body couldn't handle so much food after such a long period of restriction and i had a lower GI bleed for 5 days off and on. Of course the last thing an ED person does is seek help lol. I was incredibly delivered from my ED in later 2006 and I love the freedom and love my natural weight when exercising and eating what i want when i want (5'7" 135-140..no matter how much i exercised my body loves this weight and I call it my natural healthy weight regardless of others etc usually this is a size 4-6 for me) in 2009 when bowel problems, bloating pain were getting to be a bit much and escalating and I was also starting to feel drained and malnourished, a feeling I knew WELL as an ED person. the memory, feeling groggy and hung over next day etc. I made a GI appointment In the meantime my cousin told me that some people can't tolerate wheat (not gluten) she's a healthy eater and advised me to try cutting wheat so i did at that point i was worried only 3 years from recovery I didn't want to find out the hard way if I could be triggered to go back to ED. I was 1-2 months wheat free when i had blood work done. the GI told me i had some levels of some antibody but not over a threshold to be celiac??? i had no knowledge and no idea if cutting wheat could affect it He said well you're just stuck with IBShe never advised more tests or cutting gluten. In his defense I'm not sure if I told him I had been wheat free..so considering my normal food I'm pretty sure i was consuming fairly low amounts of gluten I went back to eating whatever after his saying it wasn't a problem and it's just gotten progressively worse...as i said in another post the last year has been REALLY bad, and the last 6 months UNBEARABLE..D alternating with constipation every day, bloating to a preggo sized belly, the gas and the pain, so bad I have to breathe through it like labor and I am used to pain from my spinal cord A friend pointed out their other friend had EXACT issues also 32 yrs old, weight loss and everything i did and she found out it was celiac and finally gained weight and felt normal...i never even considered it as i typically blow off sickness. I have so many issues from my spine (neurogenic bladder atrophy and spasticity) that I try not to get hung up on recording symptoms as I want to hold onto an identity that's not all about being sock, i have enough sickness and try to find other parts of life to enjoy .I was told it would take months to get seen and tests done, and i was also told if I go gluten-free for those 2 months the tests will come back negative. So without a second thought i could not bear another 2 months if going gluten-free would help i didn't care i was desperate for relief (oh and I have been 10-15 poundds underweight for 2 years now despite 3000 calories a day) I also irrefutably am malnourished because i know that feeling. I tried probiotics, digestive enzymes, 3000 cals of healthy foods, supplements milkshakes and still i feel like i did on a 400 cal diet years ago. My question is is there any point in tests??? will they just come out negative at this point since going gluten-free maybe 1.5 months ago? i can't remember lol i am stunned!! i have not been doubled over (which was every day) I haven't had D since, no cramps, no bloating, very little gas copmaratively. I feel slightly clearer brain wise but not perfect I'm hoping the malnourished brain faog improves with more time but being a rookie I have no idea about whats normal time frame for symptoms resolvign I have goofed a couple-few times since gluten-free and WOW the reaction is violent and I only realize it after the fact as I have D all day the next day violent cramps a few hours after eating it, and pain lasts a day the gas bloating and D slowly setlled down and I would wake after gettign dosed, feeling like a train hit me after getting drunk the night before. It's so night and day Gluten vs gluten-free that there is no doubt in my mind lol. after recovering from ED I hate being restricted and never have will power to avoid foods but i think i was so so ill i never want to go near gluten So is it worth seeing a doc? are there tests that would even show anything? by the time I see one it'll have been 4 months gluten-free and I have issues with many docs after going through hell and back again with my DX for my spine I spent 8 months being treated like crap, muscles wasting and twitching and they'd say stupid things like it was my achilles heel (serious) and ADHD amplified into my body (huh?) finally someone did and MRI and thankfully the syrinx was there clear as day but it took almost a year of watching my body waste away from the neck down and unreal pain and muscles cramping and spastic before the atrophy, a year of begging for help to get taken seriously. I don't want to go through that all over again if I don't need to. So i was curious if it truly matters? if it is enough that the gluten-free trial is irrefutably the first thing in as long as I can remember that has helped the bloating/gas and D, and I gained weight!!! haha I've been trying for years so it was exciting to think I might even get my booty back ;p if anyone has thoughts i'd love to hear I don't even know all of the tests they can do etc. This is all very new to me and I didn't want to read too much on the web while trying gluten-free because i didn't want to taint my observations of the effects, ie see things that weren't there from reading about it. How long does it take to really feel good, sometimes i get worried I still have some groggy head, malnourished feelings after a month and a half but i wondered if maybe it takes more time...on a diff thread about coffee I know many said it takes time for the gut to heal so i was curious how long it normal for what symptoms? Thanks a lot everyone. Now that I feel safe to let myself read up on it I am swimming in all this learning lol..it's worth it to me because of knowing how sick i can get now I think i have a handle on a lot of things, but some are still a little confusing to me so anything you have is likely helpful
  3. I thought this might be a good place to ask instead of starting a new thread. I figured my choices were following everyone around the kitchen with a bottle of bleach spray lol...or replacing some items that would be more likely to CC, also my 14 year old's chore is dishes so I just assume it's not perfect. I was assuming glass plates/cups were least likely to hold gluten and we don't go through a lot of pots and pans so I asked my daughter to use hot water and ample soap and scrubbing time on pots because we are on a tight budget and replacing pots and pans seems like a lot the things I did replace and bought in bright green and red colors to make it easy for the kids, toaster, cutting board, plastic or wooden tools, rolling pin, spatulas, pasta drainer as stuff always seems to get missed when she washes a starchy drainer lol, mixing bowls, the tuperware in a bright color(cheap so it gets funky after a while with much texture and ridges), a set of three bright colored knives for food prep, even bag clips used for crackers and chips and never get washed in between bags so I got my own set in a different color for my gluten-free chips or snacks. I found flexible cutting mats to put down on the counter when prepping a gluten-free meal because we have horrible counter tops i don't even trust when we clean them. I got a bright colored butter dish for only gluten-free use, and red handled cheap silver ware. I thought this was a good plan to reduce CC but I was wondering if anyone had thoughts on the pots and pans??? My daughter is a sweetie and takes the gluten-free thing seriously and doesn't want to get me sick. She's seen me the last 2 years first hand, in the bathroom all day, pulling over the car to wait out extreme stomach cramping so while I know she will do her best and I need help because of my physical spine disability, I guess my thinking is she isn't perfect she's young and crap happens and I wasn't sure if pots and pans, esp when oils are used, are likely to hang onto gluten in between uses. I rarely use dishes and opt for plastic cups and paper plates so the dishes seem silly but I am worried about the pans? I couldn't afford to replace everything in one pop so i started with the plastic and wooden things and a toaster and also some bread baking pans. But in a week or so I will have the $$ if I need to replace the pots and pans and I found a nice set for 50$ with everything I would need... any thoughts on anything I might have missed???
  4. regarding labeling, I too was confused with modified food starch. My gluten free scanner told me it was bad because of this but then upon closer inspection I found it was FDA regulated labeling and wheat must be before or after "modified food starch" or in parenthesis. http://bidmc.org/CentersandDepartments/Departments/DigestiveDiseaseCenter/CeliacCenter/CeliacNow/NUTRAGFD/LBLRDNG/FDAUSDALBLLWS.aspx http://www.glutenfreedietitian.com/newsletter/starch-in-usda-regulated-foods/ http://www.glutenfreedietitian.com/newsletter/labeling-of-usda-regulated-foods/ HTH
  5. I used to always drink arbor mist strawberry wine. After cutting out gluten I found I felt like I was hit by a truck the morning following arbor mist, my stomach hurt and I was in the bathroom often. I switched to "real" wine at the advice of the owner of the liquor store and I have felt much better. That being said some of the white wines still made me feel really foggy the next day, others don't. I don't know if this lend credence to the how they are stored theory? but i would stick with pure wines (beware "wine drinks" coolers etc), and keep track of any brand that caused you to feel glutened. I'm not an expert on liquor I barely know what half the things are in the store but the owner seemed to have a lot of gluten-free customers and said many report getting sick with certain wines or "wine like drinks" (he said anything made in a day and not aged isn't wine haha referring to my arbor mist question) and he saw some consistency in the complaints of real wines making him wonder if some have contamination issues.
  6. Just wanted offer HUGS! that can't be an easy situation. I grew up with preoccupied parents for different reasons, but either way it's difficult and a lot of burden. I think that's incredible they still try to offer support with all they have going on, and kudos to you for recognizing all they are handling even though I'm sure it's tough for you. I'm not a huge fan of cooking for the sake of cooking so the idea of spending half my day in the kitchen is not my idea of a good time. I have found some fairly simple things I enjoy that don't take forever. I love rice and potatoes and once ehy are boiling on stove there is little intervention needed. Sometimes I take a big pacakge of hamburger and just mix it with the big pot of rice and spinach and I have so many leftovers it's ridiculous I do all natural lunch meat (gluten-free) they have some prepackaged ones that keep for a long time so i stock up once a month and do turkey/roastbeef and a slice of tomato, roll it up and enjoy. not glamorous but gluten-free bread is rather a pain and I prefer simple to spending so much per loaf. chiicken tenderloins can be thrown in the oven and pretty much ignored till they are done. rolled oats gluten-free are sold at walmart. Chex cereal is awesome just to munch on for a snack (cinnamon flavor). nuts are awesome to snack on, gluten-free, brown rice pasta I got from walmart was good and a gluten-free pasta sauce, or I mix the brown rice pasta with a veggie(walmart has some cheap frozen veggies I microwave and they are ready). Alot of the above is no more difficult that doing a boxed meal and it's so much easy to do gluten-free with pure ingredients as opposed to the label reading and searching involved required for some of these boxed things. I know for me I hate the label reading and laborous searching and have settle for fresh ingredients I know are naturally gluten-free. If you have a smart phone there is a decent gluten-free scanner. It doesn't have everything but it has a lot and when I'm shopping it tells me if something is gluten-free or not, also GFoverflow.com have a good list of things. Progresso also has some gluten-free soups that are quick to make obviously. Good luck to you and to your family!
  7. See I've read about this from multiple people who try different coffees and find they only get sick with certain brands. I guess CC makes sense but I can see how the other poster said it gets overused (CC). I guess having spent have of my life enjoying my coffee I'm doing a *hopeful dance* that my discomfort is brand specific lol and not the coffee as others have suggested. Problem is they could be right haha. It's very probable that with eliminating something that gave me stomach pain and issues daily has allowed me to differentiate the discomfort that is due to good old plain caffeine and an abundance of it. glad you hubby found a brand that works. I never thought of this but makes a lot of sense. I'm guessing that in many places CC can occur in the grinding phase. Curious what type of grinder? mine is fairly small (magic bullet type of grinder) So I have to do two rounds for a pot and it so finely ground it clumps together and is a little bit of a productions to get off the edges and mash the clumps. I haven't noticed an issue with milk, thank you god lol. I LOVE a huge glass of milk to wash down every meal haha. I think gluten-free would be traumatizing if it included eliminating dairy From what I read the lactose intolerance is more due to the damaged gut as after sufficient gluten-free time to heal a person can better handle the dairy. Is this true? You know I hate to admit it but you are probably so right on the mark @ 2cups. Often I think the benefits of my coffee are psychosomatic and associative after a certain point more so than it really is helping me perk up. After all the discussion I am definitely going to try cutting it way back even 2 cups in the am and one in afternoon would be an improvement, sad eh? . While I don't think it's outlandish to think some may be sensitive to CC as I konw a person who gets really ill from CC. But I think many are right that it could be merely an abrasive thing that has nothing to do with gluten. I don't doubt there is a great deal of damage in my stomach as I've struggled unsuccessfully until gluten-free, for 2.5 years to put on weight (a problem I never ever had my body always finding it's set point in the 135-140 range) and every time I ate I was doubled over. We sadly bought the whole wheat everything is the best and literally had a wheat version of everything that was available lol...Even for non celiacs that's probably not the healthiest so if nothing else I have learned to not fall in line and blindly follow the extremist nutritional hype
  8. here are two of the links that raised my concern level: http://glutenaway.blogspot.com/2012/09/coffee-containing-gluten.html?showComment=1372293783734#c1944422561389440204 http://www.glutenfreegigi.com/are-you-waking-up-to-gluten-in-your-cup/ http://celiac-disease.com/gluten-warning-gevalia-coffee/ HTH
  9. Thanks everyone. Well I found a copy of a response from gevalia customer service and starbucks. Gevalia said there are trace amounts of gluten. And starbucks says who knows some do lol. I haven't found any company responses about gluten making it's way into maxwell house. I realize it's naturally gluten free but it would seem some have cross contamination issues, and supposedly starbucks adds "solid"? gluten to some...the starbucks repoorts were wacky because one person received two different responses on two seperate occassions of calling starbucks and her report of her conversations was as close as I could get to investigating starbucks. One indivual called 8 o'clock coffee and they were adament that it's gluten-free so I figured I would try that Thank you for the other ideas, I guess I've been drinking coffee so long and people joke about my stomach of steel that i didn't think twice that coffee alone, regardless of gluten could be irritating it. If the brand swap doesn't work maybe I can try tea, but oh boy that will be tough Regarding testing etc. In 2009 i was told I should some elevated levels but not enough to be celiac...being i try to avoid web searching my issues too soon i had no idea that my cutting out wheat on suggestion from a friend before the test likely affected my results. I was probably still consuming some gluten but absolutely no breads pastas and wheat to see if helped....when he said "ahh it's just sensitivity and IBS youre fine" I went back to my wheat rules the world diet, like a zombie i fell in line believe white anything was trash haha. So ironically enough uninformed about my testing prob being off with the month of no wheat before, i went back to my ways, the last 2 years I lost 10 pounds and My body always always loves 5'77"135, period...i can even gain to 140 easily...being stuck at 125, cramming in extra mil;kshakes at every meal and fighting to gain weight to no avail...the last year my stomach has been worse, the last 6 months i could bear it, doubled over in pain and tied to a bathroom...i let it go on a while because i have a rare spinal cord thing and it can cause bowel stuff with too hyperactive or the opposite, sluggish so in order to keep myself from assuming the identity of a sick person sometimes im too dismissive of sickness or new symtpoms not wanting to worry i attribute them to my cavity in my spinal cord, etc...so finally a freidn interveined and reminded me their femal friend at my age, 32, had the same problem, weight loss, doubled over, in the bathroom, feeling wasted and brain fog, I felt like I did 8 years ago when I have a severe eating disorder which is crazy because I was eating 3000 calories to try and gain weight and still felt malnourished physically and mentally I couldn't get into the GI for a while so I said forget the testing i don't care if I can feel better and not like a train hit me every day I want to feeel better now..and oh my goodness, aside from the one time i cheated and paid dearly I haven't been doubled over in over a month and I can't remember the last time. I have had a little discomfort sporadically and while a huge amount of fog has lifted and i feel better, i still feel half in the bag and undernourished so looking at my diet all i could think of was cross contamination in my house or coffee because i've been very careful after my one cheat night doubled me over and left me in the bathroom for a day I can't believe i didn't realize this was going on 6 months ago haha but so far I've gained 5 pounds in 1.5 months and feel 75% better than the last 6 months or year ...gosh even to be able to use the bathroom like a normal person, i feel like I have never known what that's like lol. Recoverying from a ED, and so many years of restriction i HATE being restricted now, i love my freedom in my food and weight etc. So I was expecting me to have a difficult time with will power but to be honest i was in so much pain and so sick that i don't ever feel like i want to eat any of it because all i can feel and imagine is that gripping stomoach pain and cramps and the train hit me feelign the next day, like i got drunk the night before. And I'm eating better just because I am forced to prepare more and plan more for meals. I'm pretty laid back usually and eat a lot but whatever i want so on top of everything else I am even feeling a little proud of myself for eating more veggies and fruits, rice..instead of huge bowls of just pasta haha (a kathi typical meal) don't know if that's to long lol, but that's my non tested how I got here story. I really really appreciate so many of you taking time to answer my questions, and my friends friend who sent me a gluten-free fact sheet, bewares, do's and don't lol. I always love seeing communities of people supporting each other. I have a small group who have my spinal cord condition (syringomyelia) and it's a blessing to have support in both areas now. Have a good night everyone. I I am may try to call the aboive companies and if I get anything I would post it and tag it for others wondering the same Kat
  10. Can anyone help me sort through the mass of opinions on coffees. From what I am reading starbuck, gevallia and maxwell house may have trace amount despite their being 100% coffee. But I read other posts where folks say some of the above are garanteed gluten-free I feel like something is dosing me and I drink up so a 8-10 cup pot a day some days so even trace amoutns would be my best guess for whats making me feel sick despite being gluten-free now. I haven't toasted bread yet, or shared cuttign boards. The only thing I have shared was pots after being cleaned in soap and hot water, so coffee seems to be the most viable culprit of my continued issues I would appreciate any thoguhts or information on how to find a brand that is a safe gluten-free brand. I really really prefer dark roasts but of course I prefer not having fog on the brain and feeling weak and dragging all day or being glued to the bathroom Thanks in advance. I must say it has been such a relief to find so many resources such as this on the web these last couple months. I can't imagine how hard it must have been for some of you veterans before technology.