Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts


  • Content count

  • Joined

  • Last visited

  • Days Won


notme! last won the day on December 4

notme! had the most liked content!

Community Reputation

269 Excellent

About notme!

  • Rank
    Advanced Community Member
  • Birthday

Profile Information

  • Gender
  1. i've never heard of such a hard to get a dx disease as celiac. my blood test (not the correct ones or complete panel) came back negative, but since i regained 20 lbs in a few months, my gi doc opted not to do a gluten challenge. when she did the scope, she could see the damage (25 years worth) but my biopsies came back negative. she pretty much told me that the damage she could see and my body's positive response to the diet was 2 out of 5 criteria used to make a diagnosis. you only need 2, which you have - your positive bloods and your positive response to the diet. plus, my son has type 1 diabetes, which is the same gene (never understood where in the world he got that from, now i apologize to him for giving him crappy genes) if you've ruled out anything else that it could be (crohns, lymphoma, etc) i would stop chasing my tail and give the diet a shot. i have had multiple (seemingly unrelated) symptoms clear up including a dull headache that i didn't even realize i was suffering with until it went away. <all things, like you said, that creeped up until it was the new normal) it is my personal belief that doctors are loathe to diagnose celiac because there goes their cash cow that they can make a ton of money off of treating all the symptoms individually. r.a., fibromyalgia, ms, nuero issues, vitamin deficiencies, imagine how many doctors you can cheat out of their almighty dollar just by eating gluten free. trust me, i have had every pill thrown at me and they just kept guessing away until i was so emaciated, they wanted to put me in the hospital on a feeding tube. i said NO and they miraculously came up with the idea that it might be celiac.. boy, did they lose a ton of $$ because i haven't had so much as a sniffle (used to be sick all the time, now, everybody else gets the ick and i do not - used to get bronchitis/pneumonia every year - haven't taken an antibiotic in 6 years) because your immune system starts working like it should, you start absorbing those nutrients your body needs to function properly i'm kind of a motor head, so i like this analogy: it's like trying to run a diesel engine on gasoline. once you start using the correct fuel, everything works like it should. you do whatever you want, but i wouldn't let the doctor jerk you around. read up around here. there are over 300 symptoms and all of us on here have major and minor ones (and hardly ever 2 people with the same exact combination) one thing many of us have in common? terrible experiences with doctors who don't know (or won't know) enough about this disease to make a proper diagnosis. welcome to the forum.
  2. o, and almost forgot - when your body starts acting like it should because you've been gluten free for awhile, your immune system will be CRAZY good. like, better than everybody else's. i've not been sick at all, not even a sniffle, in the past 6 years. before that, i caught every cold (that would turn into bronchitis or pneumonia) every flu, etc - last year the flu came around and EVERYBODY got it. laid up my big tough husband for four days! guess who's got 2 thumbs and didn't get it? this chick and here's a really good one: i got tested for hep c and came back positive - pretty serious, even with the new treatments coming out. went back for my follow-up and for treatment plan - talk about ominous conversation - and they drew the blood to see what my viral load was. guess what - my body cleared it on it's own. kicked hep c right in the ace - doctor could not explain it. so, i guess my celiac diagnosis actually prolonged my life by making my body run like it should. i think of it like trying to run a diesel engine on gasoline - it only works when you use the correct fuel. ok, i'll shut up now
  3. duuuuuuuude. you are speaking to a forum of celiacs. we *alllll* face these difficulties. are you saying my life sucks? i went undiagnosed for TWENTY FIVE YEARS. i am 6 years into the gluten-free lifestyle and have not developed any other major difficulties. in fact, all those terrible things (symptoms, tons of them) went away. you won't see a whole bunch of long time board members all the time on here because they've figured it out, healed up, and moved on. from time to time, they'll come back for some specific advice or solution to a problem, but mostly, they've gotten their sh*t together and got on without us. we miss them, but glad they got it sorted out. i would say stop googling at this point. this is the best interactive forum there is, hands down, no doubt. yes, for us, every day's a picnic - literally, because you have to bring your food everywhere, lolz, but you will get used to it. it takes 24-48 hours for me to realize where and what has glutened me (which was at a restaurant, usually, so eat before and go for the WINE <love it, k, lolz) and the company if they're not jerks. cross reactivity IS bullshit (i got you, peg!) and if you're confused about what has made you sick, keep a food journal <which, i use the myfitnesspal, yes, i am also supposed to have some ungodly # of calories each day = that's what BEER is for lolz (gluten-free of course - i special order it at my local store and they keep it JUST FOR ME) i sneak food into places. i sneak beer into places. i've put gluten-free beer into plastic water bottles in the racetrack parking lot b/c no glass bottles were allowed. use your creative side!! i have 10,000 backpacks/lunchboxes/coolers, yes i do. amy's stuff is crap. you can share an oven with gluteneaters (just use the top rack if food is uncovered), you can walk through the bread aisle, and it takes exactly 4 minutes to make a pb&j sandwich to throw in a bag with a bottle of water. BOOM. done, son. jump in the car (or whatever) there you have your spontaneity. i make big meals and freeze portions for when there is a dinner i want to go to so i have something to bring. or i call and see what's on the menu and make something to bring that is similar (and usually BETTER hahaha) or i'll bring a gluten-free dish to share. nobody even bats an eye when i show up with my backpack full of goodies. when we go on trips, i bring a cooler with premade sandwiches and whatnot depending on how long we are going for. had to do a funeral out of state. found a gluten-free restaurant and ordered a bunch of food to go and it kept me for a week. my son has type 1 diabetes (that got diagnosed before i ever heard about what celiac even was) and we couldn't figure out where in the world that came from (same gene) but that doesn't necessarily doom you to the future. wash your hands with soap and water. when in doubt, it don't go in the mouth <if you're not completely sure something is safe, do not eat it) take it easy, one day at a time, we all started at the same place, you will get there. and last: you're THIRTY?? i wish i had a dx when i was 30... you're gonna be soooo freaking healthy. trust me
  4. fyi - they actually DO make breadmakers specifically for making gluten-free bread - my husband found them online and has been threatening to get me one. i am pretty curious (and lazy - used to love to dump ingredients into the bin and push a couple of buttons, boom, done, lolz) and somebody on another site posted this cranberry loaf that would be cool to do in a breadmaker, but i don't want to fool with it mixing it by hand (i might do it anyway, but i don't wanna......) i might need another cabinet for all my kitchen 'toys' hahaha
  5. noodle noodles? like egg noodles???? dooooo tellllll - stroganoff has not been the same lolz i just realized how long it's been since i made stroganoff and that's probably why i haven't - no noodles. i did find some a few years ago (on vacation, in some wierd little supermarket store in fort myers beach) but, ya know, can't always run to florida hahaha
  6. is this a new doctor, sella? i remember you were going to switch. sounds like you better keep looking...... i feel your pain: i've been gluten-free (dx'd FINALLY with celiac after 25 years of doctors telling me i had ibs/ibd/colitis but doing no tests at all to rule out anything else!!) for 6 years, honestly finally starting to feel like i'm healing and my general practitioner is trying to give me DRUGS - no, thanks, i asked for something to try that wasn't that drastic..... it's like i asked for a bb and he tried to give me a grenade..... i pretty much called him stupid. he doesn't like me anymore boo hoo....
  7. hi, chrystal, welcome to the best club you never wanted to join lolz - i have been on the gluten-free diet for 6 plus years now - it gets easier, trust me! last friday, husband took me out to dinner at bonefish in turkey creek. they do a good job keeping things safe. i always ask for a menu, then order the exact same thing every time hahaha the red robin there is very handy if i'm going somewhere like a picnic or cookout or whatever i don't feel like cooking/packing for, i just order a burger to go they only messed it up once (server didn't mark allergy on the order) and when i took it back to get the gluten-free order, they were more than happy to replace it. i tend to lean toward tinkyada pasta, although recently tried the barilla elbow macaroni and they were awesome (can't remember where i got them!! i am on a scavenger hunt wherever i go - you'd be surprised where you can find different things lololz) ooh - and my husband runs to michigan twice per week so when i heard the 'good' gluten-free flour tortillas (mission, baby!!) had made it to stores in michigan, he stopped and got me some. he tried them last night and he was like 'these taste like you can't taste the difference' yayyy!! you just never know when those little cool surprises will pop up ps - i am in cornstalk heights in harriman - we have quite a few gluten-free people around here - surprisingly i have either met them from church or the lions club, so if you have time or opportunity to volunteer or attend somewhere, you might find somebody who is gluten-free (except leroy. leroy is a gravy scraper. bad leroy. ) i think it must be the fellowship part of things that make people chat more....?
  8. aspartame gives me a horrible reaction - makes me hyper (actually, all artificial sweeteners do) - i am also careful not to overdo it with the raw veggies/fruits and there are not many juices that aren't too acidic for me. try keeping a food journal - you may think you remember everything you have eaten all day, but i was surprised ("o, yeah, i forgot i had a bite of whatever. and i had that yesterday, too. maybe i should try not eating that tomorrow and see if that's it....") it made it easier to figure out even if it wasn't gluten. hope you feel better.
  9. winning!!!! love it when i find a 'new' treat that i don't have to fingerprint
  10. i also take xanax for my anxiety. very small doses and when needed. the script was easier to get than my celiac dx lolz
  11. ((((((HUGS!!!)))))))) from people who understand!! stress is also a huge cause of digestive distress - i have been reading about the brain/gut connection lately and it's interestingly terrifying lolz - but i also agree with frieze - try skipping the oats. it's frustrating! ugh - just this past weekend my husband had a bbq picnic out of state and we were going to bobtail down in the big truck. my plan was to stop at the red robin burger place and get a few gluten-free meals to go for the weekend. the rr didn't open until 11am so we figured we'd just eat there friday night, get the to go stuff, take it home and leave out early saturday morning. went, ate, got home - the to go orders are completely glutenous.... ugh..... so, we had to go back and they fixed it then i had to explain to 100 rednecks why i couldn't eat any of the 92 lbs of barbeque (omgosh it smelled awesome) on the upside, they gave me my own private bathroom and i had fun on the shooting range <shooting is gluten free lolz, also a good way to de-stress here's some more ((((((HUGS)))))) it'll get better.
  12. not at all lots of good changes! my hair stopped falling out all the time, i had dh that cleared up (my shins used to get so terrible they would bleed from me itching them in my sleep) and honestly: i was skin and bones. people thought i had anorexia or cancer. i am 5'8" and i weighed 97 lbs. so, yeah, there was a big difference when i put on 20 lbs! still would like to add 10 or so..... also, i used to pick up every virus/cold/pneumonia <at least once a year, ugh) and i'm happy to report i've not been sick AT ALL not a sniffle. when everybody (and i have all these germy grandkids, neices, nephews, etc around all the time) has the flu, i don't get it. nothing. so, my immune system must be running the way it's supposed to (it's about time lolz)
  13. lolz - *i* noticed ! i was so underweight, i didn't realize my smiley cheeks had disappeared until they returned. you know, how you can kind of see your cheeks when you smile they crunch up? i was happy to see them also, husband likes my curvierness back i'm still not to my target weight, but i'm working on it.
  14. hey, man. don't pick on wine............
  15. maybe your gut is absorbing the caffeine more, now that you're gluten-free and healing.