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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 notme!

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    1. notme! added a post in a topic Hyperprolactinemia As A Marker For Celiac?   

      if i had to eat gluten again for testing, i would be wearing out the pizza!!!  because if you hafta go gluten free after all this, good pizza is far and few between, lolz - just about mythical   as in, i have heard tales of decent gluten-free pizza, but i've never been lucky enough to ever eat any.  blech.  
      good luck with your challenge   
      ps - brain tumor cracked me up - 'funny not funny' is my sense of humor  
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    2. notme! added a post in a topic Vanilla extract -Back Bay Trading   

      LOLZ!  mine was $3, too!    that is too funny!
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    3. notme! added a post in a topic Vanilla extract -Back Bay Trading   

      i use back bay brand (on sale at big lots!  yay!)  ingredients:  water, alcohol, and vanilla bean extractives    no problems and i have used nearly half the bottle.
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    4. notme! added a post in a topic Tea Bags   

      i drink 'regular' lipton tea every morning (no fancy flavors, just hot tea) and do not have any issues with it.  
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    5. notme! added a post in a topic How Do You Limit Your Iodine?   

      someone told me (so, this is not presented as a scientific fact) (it might have been on this forum) that ibuprofen contains iodine.  so, in the beginning, i was avoiding it until my skin cleared up.  now, i don't have the headaches i used to have or that lovely joint pain, so i probably take 2 per year.  and then my scalp will break out, so i figure it is that...?   or, whatever is making me have a headache bad enough to take a pain reliever makes my scalp break out, lolz...  
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    6. notme! added a post in a topic I Can't Help But Wonder About This...   

      i stay away from iodine (except for naturally occuring as in fish) because, no matter how long i've been gluten free, it still makes my skin rashes flare up.  for what it's worth, i think science has MUCH TO LEARN about gut flora and its very important role it plays in overall health.  
      my husband was tilling the garden to plant last spring and he tilled up a nest of bunnies.  their eyes were closed, they were the youngest bunch i had ever tried to feed, but i tried it anyway, as i have had success in rehabbing wild bunnies into young adulthood for release back into the wild.  ie:  when they were able to eat greens/vegetation, i would release them.  until then, i fed them 'puppy formula' that i got from the pet store.  well, they were doing pretty well, their eyes opened and they were active, so i let them try to eat grass/greens.  the next day, their little bellies bloated up and died.  i found out later that they need a certain enzyme FOUND IN THE MOTHERS FECAL MATTER in order to be able to digest anything but milk.   they acquired this enzyme by nursing therefore getting it from her body.
      another thing i noticed is that my kids weren't as ill when they were little than my sister's kids were.  i was shocked by this, as she is a much better housekeeper than i am (i'm like:  good enough.  a little dirt won't hurt you.  husband is a big fan of 'the five second rule' etc) and she is into sterilizing her floors.   but her kids picked up every bug that came around.  mine were exposed to the same germs and were fine.  as a society, i think we're probably cleaning ourselves to death.
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    7. notme! added a post in a topic Feeling Worse Since Going gluten-free And Seeking Some Advice   

      is it possible you are still getting gluten somewhere?  even a little bit?  that's wierd with the fever, though.  <have you been tested for lyme disease?)  are you eating dairy?  vertigo would be a neurological symptom and neuro is always the last to leave the symptom party (sorry) i still have balance issues (less and less, but i guess i'm gonna hafta give up tightrope walking LOLZ j/k )
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    8. notme! added a post in a topic Coeliac Disease And Prescriptions For Anxiety   

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    9. notme! added a post in a topic Coeliac Disease And Prescriptions For Anxiety   

      what barty said ****  really and truly, if you stop getting ANY gluten, your anxieties will calm down.  i have that reaction when i am glutened <once i recognize it, i stay away from people.  but i am super duper careful not to eat anything that is remotely suspicious.  once you are completely gluten free, your body will work better, you'll be healing and absorbing the nutrients that will calm your brain.  i've been taking b12 and it's been helping, too.    
      if i have an unusually stressful circumstance, i will eat a half dose (or smaller, depending) of xanax.  but i have to do it ahead of time, or i don't realize i'm stressing until i'm in full on freak out mode.  if that makes any sense.  the last time i had to take some was my father-in-law's funeral.  took some when i realized i was upset with what i packed to wear and the lack of the Correct Shoes <not reasonable, dumb stress)  took a small amount - when i am that spun up, it doesn't make me drowsy at all, just calm enough to be reasonable. i am under a doctor's care and i get about 10 tablets per year - he originally prescribed them to me for travel (the PLANE is TOO FAR off the GROUND!!!) but he said, and my g.i. recommended that i use it in stressful situations (because stress messes up my digestion as well) the original dose is 1/2 a tablet and that will make me kind of goofy but i can still get around the airport, switch planes, etc.   the anxiety is much better the longer and more strictly gluten free i am, but i still can't get on a plane without dosing up.  
      good luck.  i know how debilitating anxiety can be.  :/
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    10. notme! added a post in a topic Astonished By Insensitivity   

      i'm sorry  i feel ya, been there, done that <well, not exactly that, but i know the feeling)  people are always so: " oh, it'll be NO PROBLEM !  you'll be fine, we'll find a way around it, BLAH BLAH BLAH BLAH"  but when it comes right down to it, they DO have a problem with it.  and the attitude??  PUHLEASE!  wow, i'm so sorry you feel so bad for me that you find it hard to go enjoy your restaurant.  no, i don't want to go watch you eat things (ok, if i hafta watch, and it's something i like to eat, sorry, i'd rather watch cartoons somewhere else, thanx)  NO, I DON'T WANT EVERYBODY TO STAY HOME JUST BECAUSE I DON'T WANT TO EAT A TURKEY SAMWICH IN THE CAR.  ugh, excuse the hell out of me.
      now, i allow gluten in the house, we just make sure to keep it in a separate area and to clean up afterwards.  but, people are nervous eating at my house, so now nobody wants to come and stay.  WHAT?  just make a freaking sandwich, i have separate cutting boards and gluten pans i keep for the mister, IT'S NOT THAT HARD.  but, i guess it is......  
      and, don't even get me started on people who can't get past the 'o, i know where there's a whole foods and they have lots of gluten free stuff' people when you're talking to them.  i'm like:  my store is good.  i just eat plain food.  and this one person in particular, wow, it's hard not to tell her where they sell diet foods, as she is 300 lbs and has diabetes to the point she is losing her eyesight!!!!  and that's the only thing some people can think of to talk about.  nevermind that i volunteer for numerous community organizations, nevermind my never-ending love for music and cartoons and bad movies.  nevermind i just grew the mammajamma of all green pepper crops, etc etc.  you look at me and all you can remember is that i can't eat gluten??  talk to the hand.
      so:  i'm sorry my disease is such an inconvenience to you.  
      ((((HUGS))))  people suck.
      thank you for letting me rant.  i was going to start a rant thread, anyway, lolz i'll go on vacation with you
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    11. notme! added a post in a topic Perdue gluten-free Breaded Chicken Breast Tenders - Possible Cc?   

      yesss, indeedy!  i want to say i saw bbq chicken and margarita flavors.  i may have picked up the bbq chicken by accident but i'm gonna eat it anyway!    (not my favorite......)
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    12. notme! added a post in a topic Recently Diagnosed And Needing Advice   

      yup.  ibs is a symptom, not a diagnosis.  kind of a catch-all in the gi world (aka cop out) yeah, i heard the "oh, you're just high strung" well, you tend to be that way when you always have to know where the closest bathroom is LOLZ
      there is also such a thing as gluten withdrawal, it feels a little like the flu, so take it easy on yourself for the first few weeks.  a little extra rest, drink lots of water, think detox.
      good LORD pizza would send me to the e.r.  -  you better just quit that (yes, i would die for a slice of good NJ pizza, but, don't.  just, don't.)  know this:  if you have celiac and you fool with the gluten, you will end up with worse things like lymphoma or complications from malabsorbtion, just a plethora of lovely side effects...  get serious!  and, yes, you may have been lessening the inflammation in your gut by eating gluten-free and then POW pizzabomb!  
      think of it in terms of putting gasoline in a diesel engine.....   just won't run.  gotta have diesel !  
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    13. notme! added a post in a topic Hyperprolactinemia As A Marker For Celiac?   

      goodNESS!  girl, you sound like i was.  i jumped through all the doctor hoops for YEARS and then, when my doctor is considering putting me in the hospital, (dangerously low weight from malabsorbtion) they *finally* said the magic word:  celiac.  no drugs, but no gluten.  it's like night and day.  my quality of life had dwindled down to getting up to go to the bathroom and then back to bed.  soooooooo tired...  rashes, migraines (oh, man, i do not miss those not even one bit) the whole nine yards.  mine was also triggered by the birth of my son (who has type 1 diabetes - no history of the 'betes in any other family members but now we know it's that pesky gene!) but i was jerked around by the medical professionals for 25 (TWENTY FIVE) years.  get your testing, get other testing to rule out things like chron's etc geez, i even made them test me for cancer, which i really thought i must have i was in terrible shape)  raven is right, you must be 'on' gluten to have your antibodies tested - i was not, being advised by my (dumb) doctor to start eating gluten free prematurely when you should continue with the gluten until testing is complete.  i always try to remind people:  one of the criteria doctors use to determine a diagnosis is the patients response to the gluten free diet.  when i began to gain weight, it was a sure thing.  also i feel awesome.  so, even if your labs don't come back definitive, you can still put yourself on the diet but you have to be serious about it and be completely gluten free.  (your child's response to the diet is what is making me say 'a ha!'  and, good call to you.  it'll be easier to feed everyone gluten free if there's a chance your kids have the gene.  and they probably need testing periodically, but that's another day)
      welcome to the forum and i hope you get some answers!  
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    14. notme! added a post in a topic Recently Diagnosed And Needing Advice   

      what are you eating?   how long have you been gluten free?
      read the newbie 101 locked thread at the top of this section.  it's tricky to be completely gluten free (which is the ONLY way the inflammation in your body will ever subside) but it's manageable.  it just takes a little practice.  when i was diagnosed, i was like, no big deal, i'll just order off the gluten free menu.  i won't eat the cookies, etc.  but it's really the cross contamination that will keep you sick.  so, it's a little (ok, alot) more difficult to eat out safely.  and i don't trust very many people to feed me.  early on, my friend made me some grape leaves (stuffed with rice) and i quizzed her before i accepted some to try.  when i got the container home, i noticed there was a white sauce on them so i called her and said what's in the sauce.  she says, oh, it's a lemon sauce, so, lemon, salt, etc.  i asked about any flour, why, yes, there was flour in it.  but only a little <and only a little will make me sick!!  for two weeks!!)  so, lesson learned.  celiac is a systemic disease, which means it affects your whole body when you take a gluten hit.  i get a lovely migraine, joint pain, foggy head, fatigue, etc...
      read the newbie thread.  you can search different things on this forum.  i would advise you to start a food journal and record your body's reactions to different foods.  many of us had to cut out dairy (i would try that if i were you) and different foods in the beginning until our intestines started to heal.  to eat 'clean' to begin with (avoid processed foods and stick with whole foods)  maybe try taking probiotics. <many of us have been 'sickly' and have had to take mega antibiotics which kills all the bacteria in your intestines, even the 'good' bacteria which aid digestion)   
      welcome to the forum  i hope you feel better !
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    15. notme! added a post in a topic Perdue gluten-free Breaded Chicken Breast Tenders - Possible Cc?   

      that does sound yumz !  i've been venturing into 'packaged food world' very cautiously (as i'm eating my snack pack pudding!  i know, i know, i can make chocolate pudding from scratch.......    i just wanted a little bit, though, not enough to make a whole recipe of it)  like you, i am TRYING to avoid the soy, so i was happy that the chicken didn't contain much - listed as 'less than 2%' soybean oil.  i'm pretty mad about french fries - what about JUST POTATOES !  and tater tots almost always have soy....  i tried the gluten-free freshetta pizza, didn't sit well, chucked the rest.  (no gluten reaction, my guts are just picky, picky) i have a california pizza kitchen frozen pizza in the freezer and i'm going to try that next.  our local kroger has expanded it's 'freak' food section (and moved everything around so i can't find a thing!) as they are preparing to sell WINE, so i will always have a plan B for dinner.  or should i say, plan W hahaha    
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