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About notme!

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  1. i bring a cooler and usually make up a sandwich or two, depending on how long we will be traveling. those are all good ideas. a box of chex, maybe applesauce or snack pack puddings? and cheeeeese....
  2. i was just up there (sparta/jefferson twp area) sooooo happy the rockaway mall has a red robin! yummmm! if you are in that area i know a bunch of places to eat but my kids are all grown (and live in tennessee) sorry :/ maybe ask your pediatric gi if there's a support/play group in the area? whereabouts are you?
  3. good thing y'all can't hear me because i am screaming obscenities - sllrunner, you've done everything right!!!!!!!! i am truly starting to think that nobody is really taken seriously - ibs!!! i heard that for 25 years!!! doctors are either really, really stupid or this sort of DECEPTION is indeed encouraged by them!!! GRRRRRR!!!! i'm so sorry you're going through this!!! and: ps - anybody else told that the doctors 'discovered' when they did the endoscopy: "you have a hiatal hernia" i said i did not know that. "sure, do you have a lot of burping?" well, no, not really.... lo and behold, ever since then i have a lot of burping....... i'm fairly sure they caused it? i'm just curious because over the years i've just noticed many of us were told hiatal hernia.
  4. the whole celiac/doctor issue is as frustrating as it is common, unfortunately my gp, who knows full well that i have celiac, tried to give me this new 'miracle drug' for ibs-d when i told him i was still having indigestion/inflammation for seemingly no reason. "it's expensive, but i have a coupon for the first month" O BOY LUCKY ME! i told him, ok, that i would try it. (i think i have an idea of what my problem is and i originally asked for something different to try to see if it would work. he didn't even know what it was) i'm not gonna try it. it's a narcotic, it has side effects i don't need or are the same as my symptoms. i'm gonna switch doctors. and switch doctors again and again until i find one that KNOWS MORE ABOUT THIS THAN ME. on top of that, they computerized all their records, which i have been going there for 20 years, ASKING WHAT I'M ALLERGIC TO! i said: umm, don't you have that in my MEDICAL RECORDS??!! well, we have your paper records. i said, i'm HERE. don't ya think ya shoulda pulled my file out?? i mean, y'all knew i was coming. you know, the appointment thing....... LOLZ yeah, i've been gluten free for 6 years, and this clown tells me 'you know, you can't drink beer' i said yes i can. he says no, you can't. i said why not? because of the alcohol, haha? no, because it has hops in it and if you're celiac, you can't have hops. i said it's BARLEY. O MY GOSH!!!!!!!!!!!! i said, you're the doctor. rolled my eyes and left. welcome to the board sorry for all the yelling, lolz.
  5. 'cracker' barrel - you *are* new to this !! lolz - nothing with cracker in the name is good for us lolz - what i do when i can't get around going somewhere that there is absolutely nothing i can eat: eat before i go, order bottled water (or a glass of wine ) and go chat. nobody even blinks anymore (except the waitress sometimes haha) my first family reunion post dx i brought my own food to eat and my brother in law (the skeptic) asked me what would happen if i ate gluten right now. i was like: " nothing. meaning, i won't drop to the floor in convulsions. i won't have anaphylactic <however you spell it) shock. i will spare you the bathroom details. but in 24-48 hours i won't have the energy to get out of bed nor the fortitude to leave the house. it will affect my whole body." he just glared at me like i was a fraud, which pissed me off, so i told him another uncomfortable truth: "nickelback sucks" then we were both mad hahahaha seriously: my first restaurant visit with my in laws, my mil tried to feed me a cupcake (!) they have since chillaxed considerably. as for my kids, one is a type 1 diabetic and the other has rhuemetoid arthritis (dx'd at age 12!) so i just remind them that celiac and the g;f lifestyle is probably in their future so they better pay attention!!! (diabetes and r.a., as well as thyroid issues walk hand in hand with celiac) we all understand. we've all been there. you can do this. welcome to the forum and to the best club you never wanted to join ps - you think *you * were in denial?? that;s why my name is >notme" lolz
  6. one of the kids on my grandson's ball team last year had celiac (grandson does not) so i got to be the keeper of the snack cooler - when the parents would volunteer to bring snacks, i would tell them: fine, but we need to keep this cooler gluten free (dye free, etc, whatever is your situation) and they did their best to comply. i always brought a ton of stuff and if i had to 'pull' a snack out of the mix, the contributing parent never noticed. this year, that particular child is not on our team, so let the cookies crumble, lolz - i just bring snacks for ME (j/k, i bring dubble bubble, seedless grapes, water and powerade - because i'm nice )
  7. many of us know exactly how you feel. for twenty five years i was treated for many of the symptoms, as were you, but never presented the idea that all these things were related (and simply treated by the removal of the evil gluten) but, now, you have a new normal - do you think you are done evolving? you mustn't treat your SURVIVAL time (hey, you did it!!) pre diagnosis as wasted or lost time. i did that for quite a long time after my dx - i was angry, i was lost, i was singled out - why didn't these doctors do their job??!! but, i got a boost of, idk, pride? power? in the realization that i worked full time, raised 4 kids, pretty much by myself (husband is otr trucker) while being killed and tormented by an unknown glutenous villian!! YAY ME!!!!! i'm freaking tough, you're damb skippy i am!!! 'f' crusoe's boat, i swam the ocean with a cinder block tied to my ankle and i made it!!! a boat would've been easier... but, hey, when did i ever do anything other than the hard way lolz. also, consider that you are still recovering. i figure there was a long time things were getting damaged - it'll take some time to get everything back to good. i like your analogy, and it makes sense, but do not be mournful. it seems you are a deep thinker - find some things that make you 'simply' happy and go from there. i think once we quit gluten, certainly our brain must do some re-wiring i think we just get to know ourselves a little better when we are not constantly REacting because we must for our symptoms. lastly, i consider myself extremely lucky to be able to control my body (yayy!!) without always wondering why i feel so terrible all the time. there are good days and bad days, still, but think of all the poor souls who may never get a diagnosis or even get a clue celiac even exists (i know *i* never heard of it until i had it - the closely kept secret of the medical profession because they can't fix it with a pill $$) i feel sorry for those who will never give up the bread, even when they have a firm dx. sad. i worry about my blood relatives who feel crummy all the time, but won't even consider changing their diet. so, take heart! for us: every day's a picnic (literally. because we hafta bring our food everywhere, lolz) welcome to the forum
  8. yes, no, yes, yes, yes, yes - just be careful (you are not asking if you can cook gluten-free pasta with regular pasta, correct? just breathing the steam won't make you sick. if you make something with regular flour and it gets in the air, it is possible to breathe it in and ingest it. but making sandwiches is ok (just use separate cutting board than your gluten-free one) in the beginning, i had a terrible habit of licking my fingers, so i wore plastic food handlers gloves until i got used to NOT licking my fingers. read this: deep breaths - you'll be ok. just takes some getting used to the 'new normal' welcome to the board
  9. if i eat blueberries (not only do they not like me, but sometimes ya just gotta have a gluten-free blueberry scone!) they will make my poop green. <i hope my seven y.o. grandsons don't see me talking about poop, lolz
  10. lolz sorry! i do wonder how many charges people pay without question!! not to mention, next time i go, i'm getting them to write down how many different labs/doctors/etc will be sending me a bill. last time i got, like, 6 bills for one procedure. i swear some of them just jump on the billing bandwagon....
  11. i always figured it was attributed to vitamin/mineral malabsorbtion. if you've gone undiagnosed that long, you might be in the same boat. lolz, when i went to the emergency room, years and years ago, they told me my panic attack/vertigo/anxiety were caused by allergies. sent me to a specialist who told me the thing in my ears which allow fluid to flow freely between inner and middle ear were swollen and too small for the fluid to travel (?) so they dosed me up on allergy meds and sent me on my happy way. yeah, right. i had to have my boss pick me up for work every day for like 2 months before i got the nerve to drive again. driving in high altitudes are debilitating for me - i can not do it. i can take xanax if i wish to be a passenger (my husband, a professional driver, is so very patient with me, God bless him!) or if i hafta fly, yup, take a magic pill... i don't know if it will ever be back to 'normal' so i just do what i can to get around it.
  12. after nearly 6 years gluten free, i still have some balance/anxiety/neuro issues. they're the last to leave the symptom party, i'm afraid. i attribute this to the years and years i went undiagnosed and untreated (25 years~! ) i don't have much faith in the medical field's intelligence or in their ethics. funny story: my obgyn bill had a charge on it that my insurance denied - $25.00 for 'smoking cessation intermediate 5-8 min' WHAAAAAT?! (the doctor said it would be a good idea if i quit smoking. i'm like 'no shit, sherlock') called the billing office and told them i'm not paying it. WHY? 1. do you have any idea how much money i would owe my dad????!!! 2. i don't smoke with my vagina. they took off the charge
  13. because they make more $$ treating symptoms every time i see the new 'miracle' pills for 'ibs-c' and 'ibs-d' it just makes me crazy. ibs is just a symptom.......... as are all these other things that can be reversed just by changing the diet. but shhhh let's not talk about it, keep the patient ill and miserable, and keep that $$ rolling in. and to leave a child ill and in pain is just deplorable. i'm sorry for him. go git 'em, mama!
  14. try food journal/elimination diet. i have just recently had to cut out eggs (yay what a difference!!) but it took the food journal to figure it out. i was blaming, like, twenty other foods! it's tricky mixing food allergies/intolerances with celiac. a food journal will help you pinpoint the culprit. don't panic
  15. eggs are not my friend. unless they're in something baked (ikr ???) i can't digest ANYTHING if i've eaten an egg. somebody told me duck eggs might be ok, but i don't know any ducks <i quack myself up ) i was busy giving up multiple other foods, when the innocent looking (and perfect protein, as i am underweight, so always trying to pack on the protein) egg is causing all the trouble. i even had salad (gasp!) the other night and everything was a-ok! i've had a hard time digesting raw veggies, but i was pleasantly surprised. still have issues with soy, but i avoid most processed foods. that seems to do the trick with soy good luck - i hope you find your answers!!