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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 kari

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  1. okay, long story short... a few years back, when i was away at college, i came down with a 'cold' that lasted for months. when i finally went to my university health office, i was exhausted and miserable all the time and was constantly dizzy and depressed. i wasn't going to class, or leaving my room. i slept all day. they tested me for mono more times than i could count and it was always ngative. they took blood, and apparently my white blood cell count was out of control. they referred me to a gi specialist, since i have had stomach issues my whole life, and when the wait for an appointment was too long, the nurse even said to them 'my patient isn't going to make it that long, she needs to be seen immediately." so i went to the gi, where they told me i might have celiac disease, which they said was 'a mild wheat allergy' (real geniuses, i know...). they did blood work, and told me that i tested positive for celiac disease, but that i may or may not have it. i went on to have the endoscopy, colonoscopy, barium something or other, etc., all of it is very hazy in my mind because i was soo ill at the time. then i never heard back from them. when i called to follow up, I was told that I did have some damage to my intestines, but not enough to diagnose celiac disease. they offered no other solutions, and i never heard from them again. so for a few months, i did nothing, then one day out of curiosity i came on this site, and stopped eating gluten the next day. I felt like my personality changed immediately. i went from being tired, lazy, easily frustrated, to motivated, friendly, and happy. when i finished college and went back to my regular doctor at home, when asked if i had any allergies, I just said "i can not have gluten.' I mentioned that i went through testing at another doctor and that results were inconclusive. my doctor said something about if the diet worked, sounded like i had it, and ever since it is not something that comes up on my visits (i go there once a month for an add prescription), other than they mention it when they ask if there are any new allergies, medications, etc. Now, a few years later, i'm feeling crappy sometimes, sometimes not. I don't know or remember what normal stomachs are like, but there are so many days when i feel like there is not enough sleep in the world for me. so many days when i have nasty cramps, or when i'm running in a panic for the nearest bathroom. still, some days i feel great, which at one point in my life, never happened. i try my best with the diet, but i do admit that while i haven't eaten bread or bread products in years, i am not always 100% vigilant. i scan every label, but if i don't see anything that screams gluten, i'll usually try it. i am careful about cross contamination. i am careful to eat enough but not too much, excersise, and sleep. i have a greater respect for my body since going gluten free. wow, i was going to make this short, wasn't i?? at this point, i'm not sure what to do next. sometimes i wonder, what if i never had celiac disease? what if i gave up all these foods and didn't have to? why am i not a total picture of health at all times? why did my gi doctor originally say i probably had celiac disease, then tell me i didn't? what if i hadn't made my own decision and decided I did? so my question is, where do i go from here? i remember the name of the office of one of the specialists i went to. would they still have my records? can i get those records from them? does my current doctor automatically have those records, even if i never specified that i went there? if i do obtain my old records, what do i look for? what can i ask my current doctor to follow up on? what questions do i ask, and to who? i know that i am responsible for taking charge and responsibility for my own health, just not sure where that starts?
  2. I noticed the change too, and stopped buying them just because the price had gone up so much. But the 123 calories before was definitely not 'per crust', but 'per serving', which no doubt is smaller than one of those crusts. also, I haven't tried the new crusts (again, because they're just so damn expensive, and I usually just use one then the rest get all moldy and crumbly in my fridge), but they definitely appear to be bigger than the original round ones. maybe just eat half? 600 calories is absolutely a reflection of it being more than one serving of bread. Or make your own. I use namaste mix, divide it into portions and stretch it super thin so I can taste the toppings rather than the dry bready gluten free crust action going on.
  3. High School Dropout

    wow - if I hadn't known better, I would have thought that I had written that myself!! You're probably... 17 or 18? and you probably don't realize it but you are very fortunate to have figured this out at this time. You have your whole life ahead of you, though you may not realize it. And believe me, there is life beyond high school. I also dropped down to a D student somewhere around my sophomore year, and stopped waking up and getting out of bed most days by halfway through my junior year. I was so miserable and depressed most of the time, and so frustrated and embarrassed at my lack of motivation that I stopped trying and since most of my friends at the time (and their parents) thought I was going downhill fast and was not a good influence because I was doing nothing in my life, I started hanging out with the wrong people and getting into trouble, all the while just feeling sick, and tired, and sick of being sick and tired, which just left me hating everyone and everything. My senior year a guidance counselor called me and my mom into school for a meeting and suggested that I was too independent for the structure of high school, and that if I were to take intensive courses at the local community college I could get high school credit for them and graduate with my class. I tried, and really put a sincere effort in, but about halfway through my occasional absences and tardies turned into just not going at all again. I took a year off, no high school degree, at 18, and realized that this whole quasi-grownup world just really was not for me. I wanted to do what other kids my age were doing, I wanted to experience college, and accomplish something with my life somehow. I took the test for my GED and passed, took classes for a year at another community college to get some sort of ground to get into a regular 4 year university, and with the afternoon classes and flexible schedule, I was able to pull it together for a little while. By my sophomore year, again, it was the same thing. I would set 3 alarms and not hear any of them - my roomates even thrrew my alarm out the window out of frustration with me, because it would go off all day and I just would not hear it or have the energy to turn it off and get up. I was failing again, only this time my failure was costing me thousands of dollars in tuition. I went to the school psychologist, which was useless. I went to the health office, where they realized my blood levels for everything were all out of whack. I overheard them on the phone trying to schedule appointments for me to see specialists in every possible area and saying "no, you don't understand; if you can't fit this girl in sooner than that, she will be dead.", and, finally, after two more years of part time classes and barely passing grades, I almost got my diagnosis. I was going to doctors in a pretty bad area near my college which was far from home, and who were not up on celiac disease or what it was. They told me I MIGHT have a 'wheat allergy called celiac disease" (moron comment number one), and after several expensive outdated tests and a lot of waiting, they still had no difinitive answer for me. I researched celiac disease on my own, brought my blood test results to my regular doctor back home, and my self-diagnosis was confirmed. I stopped eating gluten on February 15, 2006, and I am now a completely different person than I was for my entire life. I was 23 and had wasted at least 7 years of my life failing to function in everyday daily things that other people take for granted. I am now 25 years old, doing my student teaching as a high school art teacher, where I work all day with unmotivated kids like myself, and try to get them to enjoy high school and to succeed here. No one here knows what my grades were in high school or why it took me so long to get here. No one needs to know how much I despised going to high school and everything about it; but I can relate to these students because I understand them. I graduate with my BFA in Art Education in May, and will have my teaching license at that time. I get up every morning at 6 am, get to school at 7am, and I haven't missed a day yet for the 8 weeks I have been here. I work hard here all day, and when I leave, I work another full time job and I pour myself into my homework for my senior seminar, which i am excelling in also. This is the most rewarding thing I have done yet, I love every second of it, and none of it would have been possible without my diagnosis. I run into people I was friends with in high school, who had tried to get me to go to school, to do my homework, to do anything, and who eventually gave up on me. Before I tell them anything about my diagnosis, they immediately comment on how healthy I look, how happy I am, and how much I have changed. You are young. You have such a great opportunity in that you have figured this out as early as you have. You've been through the tough part. The good news is, now all you have to do is take care of yourself and start living your life!
  4. argh. i've been trying so hard to live gluten free. i'm not overly paranoid about it though, i want to live my life. but it's seeming more and more like this disease is the most horrible unfair torture out there and i hate living this way. before i knew i had celiac disease, i spent years not wanting to get out of bed. being depressed, irritable, anxious, and feeling like there was a weight the size of one of those cartoon safes on top of my head, keeping me from being able to start at step A, then move on to step B, and progress through the simplest daily activities. school was left unnatended, bills unpaid, etc. etc. etc. as soon as i stopped eating gluten, it was like the weight of the world was lifted off my shoulders and i realized that it wasn't normal to feel the way i had been for so long. i had no idea it was possible or even normal to be able to wake up without 5 or 6 alarm clocks, get out of bed refreshed and happy and go start the day. then i have these times where i feel like i did before. i'm miserable, moody, depressed, anxious, not to mention i can't seem to leave the bathroom for a minute. i can't stand going to work, my friendly cheerful self is replaced by some ominous beast who doesn't want to move and who loathes human interaction. not very condusive to my occupation as a bartender. and here i am, left wondering, where the heck did the gluten come from this time, why is this happening to me, why does this happen, what am i doing wrong, why is this so unfair? i do most of my cooking myself. plain veggies, rice, fruit, chicken, nothing interesting. but i work 65 hours and week and damn it, sometimes i'm just hungry. i need to eat like the rest of the population does. and then i feel bad for myself for having to go through this, having to check every label, scrub every utensil, worry worry worry. not to mention when i'm going through these glutening phases, the anxiety is overwhelming - how am i going to keep working this many hours a week? how am i going to finish college? how am i going to make up all the missed schoolwork from the years of illness while i was trying to be diagnosed with something? how am i going to deal with the stuednt loan payments while i'm on my leave of absence from school? how am i going to get back into school, fit it in my schedule, find the time, get it done, not look like a loser because i'm just too sick and tired? how am i going to stay healthy? i know it's temporary, but every time this happens, i remember what life was like before going gluten free and how unbearable it was. but its all so unfair. i haven't knowingly eaten anything wrong. but by the moodiness, fatigue, bloating, and miserableness, that there's gluten in there somewhere. and i realize how much some of it is beyond my control. i was at work the other day and a customer was eating a pizza, it smelled so good, and i wanted some so much i just wanted to cry. i almost did cry. i wanted a bite of pizza more than i think i have ever wanted anything else in this world. the honeydew melon and apple with peanut butter i had brought with me just wasn't cutting it and i wanted to throw a tantrum like a little kid. i wanted that pizza. i didn't have one, i didn't go near it, i did the right thing, but i'm sick anyway, and i don't even know why. i was at work yesterday and a waitress knocked over a beer which spilled all into the ice we make our drinks with. i panicked, looked at my boss and said 'oh no! what do i do?" he laughed at me, said 'nothing, it's fine. rinse it off with a little water if you want' i said 'what if someone's allergic to beer or something?' he laughed and said 'when have you ever heard of a person being allergic to beer' i said 'i am' and his response was 'really? well it's not the end of the world, it's not like you'd die or anything' see? it makes me feel like my health is out of my hands. who's to say little spills and things like these don't happen everywhere, in factories, stores, everywhere? where do you cross the line from caution to total paranoia? how do you live a normal healthy life without being terrified of everything you put into your mouth? i've always tried to do that, and the way i feel now is what i get for being that way. i don't know what the slipup was. if it was something i caused, or if it was beyond my control, but either way, i'm paying for it this week with my health and with my sanity. had i known this was going to happen i would have eaten the damn pizza that i wanted so badly. but i didn't. i was good. and it stinks. it just feels so unfair sometimes.
  5. What Did I Eat Wrong?

    i should hope you're not eating sour cream that was on the shelves before jan 2006! if that's the case, i'd say any resulting sickness would be from the over a year old rotten sour cream, not from modified food starch!
  6. Glutenease

    I can't believe i've never heard of this product before. I work in a restaurant and when i'm pms'ing, the only thing in the world that i want is a big plate of french fries. I know ours are pure potato, but they are not cooked in a dedicated fryer, but around that time of the month I usually snag a couple and hope for the best, which is usually just a minor reaction but worth it at the time. well last night i was starving and so busy and no time for food, and ate a giant plate of fries without even thinking about it first. well i'm sure it didn't help that i woke up a bit hungover this morning also, but what i felt was a whole lot more than a hangover. i feel like i want to leave work and crawl in a hole and die!!! if this stuff works, even to have on hand for gluten accidents (it happens) or makes the symptoms a little better after a mistake, then i will run, not walk, to the nearest health food store and buy a case full of the stuff. i'm sure my boyfriend would appreciate it too if my cranky miserable self that i am when i feel this way could do something about the symptoms other than just wait them out. has anyone else had any success with this? I wouldn't think of buying it to try to eat gluten, but for days like this when i've gotten glutened somehow or another and just want to feel better so i can get back to work and resume my life again
  7. i'm just getting over being glutened twice in the past week and spent the day in the hospital yesterday for a nasty kidney infection that honestly came out of nowhere and i suspect had something to do with my immune system being under a great deal of stress. normally, in social situations like this i'd bite my tongue and deal with the possibility i might get a speck of gluten because it's a holiday, i want to keep the peace, i have the next day off, and i'll deal. i'm tough like that. but after all i've been through this week - no way. so i'm going to my dad's, and like many of your parents he absolutely does not get it. he gets it in that he finally doesn't offer me the bread basket anymore, but not in the sense that he could ever in a million years fathom why i would be unwilling to eat a turkey that had been stuffed with bread or gravy with a dash of flour in it. he's one of those take charge, type A 'it's all in your head and you're being silly so do what i tell you to' people, and i know that the only way i'm going to get out of there without a huge commotion is to prepare a couple things on my own that i know are safe, which i can bring and share with everyone, to distract from the fact that i'm avoiding everything there except for vegetables and mashed potatoes. anyone have any advice for anything i can bring?? on the glutening note, maybe you'd have advice on this too. i missed school yesterday due to my ER visit, and was given a note excusing me from class for a week (i don't have another class for a week anyway) and was told to email my professor and explain, so that my absence would be excused. but i've missed quite a few classes, or been very very late several times (it's a 6 hour class), mostly becase i have an hour and a half commute, and there have been several days when i just feel like crap because i couldn't keep the gluten out of my system. is there a tactful way to explain in an email that i missed yesterday's class due to an ER visit, but to also mention that this may be related to the fact that i have an immune-deficiency disease which has caused various porblems throughout the semester which have kept me from getting to class, in a way that isn't too graphic or personal, but gets the idea accross enough so that it may be taken into consideration when my grades are being slashed end semester due to my frequent absense? how does everyone else deal with the issue of trying not to look like you're just being lazy when you're a bit under the weather, even if it's excessive? i mean let's face it, an hour and a half commute is a little difficult when you're experiencing explosive diareah.
  8. Alcoholic Beverages

    vodka does not have to be potato vodka to be gluten free. as far as i know, there really is no reason for vodka to have gluten in it. also, every bar i know of has a separate cutting board behind the bar for cutting fruit and only fruit, and it is washed every time it is used. there is no other use behind the bar for a cutting board, so there isn't really any reason for the garnishes to be contaminated.
  9. Alcoholic Beverages

    it is my understanding that for the most part, liquor is gluten free. it is distilled. when i drink, i go for whiskey, vodka, or margaritas and have never had a problem. then again, i've only ordered margaritas from the restaurant where i work and we don't use any of those processed mixes, just juice, etc. but the tequila, vodka, and whiskey have never been a problem for me, regardless of the brand.
  10. Eating Out

    powderprincess, which restaurant are you talking about? i'm in ma also and yes, nancy m... i think i've officially decided chefs are appealing as dates. i'll have to stick to chefs from now on in my dating endeavors
  11. Eating Out

    a lot of these posts have mentioned that if you eat at a nicer restaurant, you're more likely to have a good experience and get out of there un-glutened. i agree with the fancy restaurant thing. so much so, that i had to post a new topic about it. i've worked in restaurants for years, waitressing and bartending, and with the schedule you keep in that business, most of my friends are also in the restaurant business also, as chefs, bartenders, etc. and yes, we spend too much time at work so we tend to stay up late into the night talking 'shop talk' discussing food/food issues/preparation/menues, etc. I recently started dating a sous chef at a teeny tiny super fancy restaurant. we went away together after he had only known me for a few weeks, and i had never brought up the gluten thing, he just knew i was 'allergic to beer' (when you work full time in a restaurant your 'hanging out' hours are usually late night when the rest of the world is asleep so it made sense that i'd never been in an eating situation around him. anyway... long story short... we're away in another state and he asks what i usually eat, since we're headed to the grocery store... and i start my long explanation by "well, you know how i can't drink beer? it's because - " and he cuts me off, and says "gluten? i know how to deal with that. i'm actually kind of excited about that. it'll make cooking more interesting.don't worry about a thing, i'll take care of the food for the week." i was dumbfounded. and he told me how he was at work the other day and got a phone call from a woman saying she had a gluten intolerance and could she eat there. he said 'yes, no problem, just tell your server when you come in' and was about to hang up the phone. she asked if he even knew what gluten is anyway, and he said 'yes, i'm a chef. it's my job to know what it is. and even if i didn't know what it was, i'd have looked it up before you came in and made sure i got it right.' apparently he had looked it up, with his boss, and they knew more actual science and information about gluten than i did!! needless to say, we didn't eat out once on our vacation, but he cooked the most amazing gluten free meals all week that i have ever had! no super expensive health food gluten free stuff, just regular, normal food from the little grocery store around the corner, and he whipped up gourmet meals out of it. i usually just fend for myself foodwise and cook up some rice and veggies or snag a plain baked potato at work if i'm not busy. since going gluten free i had forgotten what it was like to eat a balanced, normal meal and have it taste really really really good, and not have to worry at all about whether it would make me sick. moral of the story - nice restaurants have chefs that know how to cook, love food, love knowing about food, and probably know just as much about your gluten intolerance as you do. in my opinion, the most important thing is making sure you get the server to communicate clearly to the chef if you don't talk to him yourself, and if you do - you should be fine. and on a sidenote, since i've read a lot of replies from people worrying about have their food spit in, i have to say i have never ever once witnessed a meal being spat in at any restaurant i have ever worked in ever. not ever ever ever. that's really not something that actually happens, so don't worry about sending your food back. if anything, when a cook gets a plate back, they're annoyed with the server for not making sure that it was ordered correctly so that they could have made it correctly the first time around. they're never annoyed at the customer unless the customer is blantantly and unexcusably rude, demeaning, or otherwise obnoxious. which everyone here has the common etiquette and sense not to be, since rudeness has nothing to do with gluten.
  12. i'm confused now. i happened to have a packet of it in my cabinet, and the ingredients: maltodextrin, salt, monosodium glutamate, onion, garlic, parsley, buttermilk, spice, and calcium stearate - are not on the "forbidden ingredients list". where's the gluten? the only possible gluten i could even see heree would be maltodextrin, and we've all been told that in the us, maltodextrin is perfectly fine. nothing else there says gluten to me at all. uuuuugh. this stinks. i'm sick of having to think this way about food all the time.
  13. "the Trigger"

    my symptoms started as i was going though a breakup with my boyfriend of three years and was failing out of college due to severe depression (which i know recognize was one of my main symptoms of celiac). my diagnosis came two weeks before my brother died of cancer. i've heard that celiac symptoms in adults can come up in times of severe stress and i would fully agree with that.
  14. Two Different Questions

    i eat tons of green veggies. that does contribute to having really really dark stools, though i wouldn't necessarily say they're exactly black.
  15. i've been a waitress for.... probably about 8 years now? until the couple of years of doctor's apptmts, etc. leading up to my being diagnosed this past february i had never ever heard of celiac disease or gluten before, and had never met anyone with celiac disease up until today. well i just worked a double shift at the restaurant i've worked at for the past few years and I had FOUR separate tables (within the span of about an hour and a half) today with people who had celiac disease! i think i spent more time today in the kitchen asking questions than i have in all the time i've worked there. (okay, maybe that's an exxageration), but i sure did learn a lot! (i'm super happy i learned about the one gluten free dessert we have, since i didn't think we had any.) all the other servers were joking around with me that i must run the 'secret celiac convention' and that i'd sent out a convention-wide memo for everyone to visit me at work today. anyway, just thought i'd mention how bizarre that was. must be that more and more people are being diagnosed or going out and trying new foods, and asking lots of questions, which is great, because customers going out and asking questions is the only way for non-celiac servers and cooks to turn into great servers and cooks, because that is how they really learn their stuff