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  1. hey, keven, my son was diagnosed type 1 'betes' when he was 19 and away at school - out of the blue, seemingly, because nobody else in our family ever had diabetes.  what we didn't know, until i was diagnosed with celiac, was that it's the same gene that makes both of these things possible :(  he is 29 now, but it has been a rocky road for him, i'm not gonna lie, but it's do-able.  he has since married a beautiful young woman who, ironically, has thyroid problems.  so - they watch their diet carefully, and have switched to gluten free eating <which is beneficial for her thyroid condition, too, and he has decided that he probably has a problem with gluten as well, even though he's never been tested)  it's lower carbs being gluten free, so, better for his diabetes.  he has also been hitting the gym, eating lots of protein, and getting to bed at a regular time.  once you get used to your 'new normal' i'm sure you will get better at managing.  it feels like alot, but give it a minute.  make your necessary changes - and even though it doesn't feel like a blessing, it sure beats going through a large portion of your life not knowing what is wrong with you.  you can treat your celiac before it does further damage.  i was lucky to have not been killed by malnutrition and i felt so crappy all the time, tired, constant headache, etc...  almost 5 years later and my immune system is pretty much bulletproof.  i've not been sick in, like, 4 years, not even a sniffle (and i am surrounded constantly with germy kids, lolz, they bring home everything from grade school !! )  from a person who had pneumonia every year without fail, i can tell you to hang in there, it's totally worth it.  good luck and welcome to the forum :)  and here's a ((hug)) or two ((hug))


  2. being as your grandmother has celiac, and it is a genetic disease, certainly you could have celiac.  but you could also have something else.....  you should go and see a doctor.  they can test you for celiac and also other things which may be your problem.  can't remember b.c. pills ever making my digestion any better?  but everyone is different.  really, you should see a doctor.  and, keep eating gluten if you intend to be tested, otherwise the test will not be accurate.  good luck and i hope you find some answers :)


  3. i started out cooking 2 meals when i was first dx'd but soon found that i was wasting my time - there are plenty of things that can be made for meals that are completely and naturally gluten free.  (mamaw - i did the same thing you did, just didn't tell them, lolz!)  most of the time the only thing you can reallly not fake is the bread.  (as in, i make my husband's sandwiches for work out of gluten bread - it's now become a game "get over here and touch gluten for me!" he wields the knife for spreading condiments or whatever and cuts them in half, i have clean hands and i throw the sandwich meat at the bread.  he sort of straightens it out and pretends to yell at me for not caring about his sandwich, lolz)  i hafta admit, though, when we first learned all the changes (kitchen-wise and eating-wise) i would have to make, he was like "you've GOT to be kidding??!!"  NOPE, not kidding.  but he still keeps gluteny stuff in the house - and it's all piled together in the pantry with my gluten-free stuff - yup, i run with scissors haha - and i've never been glutened from the packages touching.  honest injun.  now, that being said, i am the Ziplok Queen, 40 different sized and everything is ziploked and double ziploked.  as long as you all keep things wiped down and vacuumed, crumbs shouldn't be a problem.  clean your oven out, you'll be fine.  oven rule:  gluten-free open pan (not covered with a lid or foil, etc) always goes on top shelf.  a gluten-free pan that's covered can go on a lower shelf, and an uncovered gluten pan can go on a lower shelf, but not open gluten-free pan <because i cook pizza directly on the rack for the gluteny grandkids.  now, if your racks are super clean and you don't put gluten directly on the rack............  nah........  lolz, just use the top rack for open gluten-free pans..   <_<

     

    kissing - unless you are allergic to something in toothpaste, is fine so long as he brushes his teeth well.  (yes, i thought this was a myth, too)  but since he's been careful to be sure to brush first, kissing is fine.  brushing is not that hard!  surely he can do that.

     

    my hubs loves the chinese take out food, so when i want to cook something he hates, i send him on to yum yum number 8 and he is happy as a clam.  he eats it in the house, we just make sure he wipes up really well <but we were going to do that anyway, celiac or no, everybody wipes their counters/tables :)

     

    when we have people over, they can bring anything they want, they just hafta put it in the Gluten Quarrantine Zone, where poisonous food is banished to (it's just another table or area haha)  sometimes i give instructions on how they will move about the serving tables - fresh plate EVERY TIME <yes, tons of paper products lololz)  they need to hit the gluten-free stuff first and the gluten food last.  they may not move backward, they can just get another plate and begin again.  NO FINGERS!!  if you cannot follow these rules, you may starve to death but you're not eating at my house (yeah, i only have, like, 2 friends hahaha, j/k)

     

    we have mixed laundry, i have a fragrance allergy so i use tide free.  if i do dishes, i wash everything painstakingly and then put it through the dishwasher.  if husband does dishes, he half-ass rinses them BUT he will brillo/sos the stainless steel.  they come out of the dishwasher just the same as if i scrub them, so, i quit b%$@#ing about the way he does the dishes <that was an ongoing fight!!   :angry:  everything you have that is non porous (stainless steel or glass for example) can be washed/brilloed and used for gluten-free and gluten, so long as you wash them well.  (or, don't look hahaha :P )

     

    don't feel alone, we've all been through this to one degree or another.  you'll learn a trick or two on this forum, i'm sure.  i've loosened my grip on my paranoia about a number of things.  

     

    (((((((HUGS))))))))))  he didn't marry you for your Gluten Tolerating Qualities.  hang in there, kiddo!  welcome to the forum  ;)


  4. where NOT to eat:  jimmy buffet margaritaville & wild horse saloon - last time we were in nashville, we ate at both places on the same day, so, one or both were the culprit.....  they both have gluten-free options/menu, but they were both so busy, i was really foolish to not think i would have gotten cc'd.  :(  i think next time i'm going to try the rodrizio grill.  i hear it is mostly gluten free menu.  that's in nashville proper - idk about mt juliet.  good luck!  (plenty of chardonnay and the margaritaville has redbridge beer, lolz, next time might just stick to drinking - that's what everybody else was doing there lololz )  :D


  5. i had a good one, too, and i hung on to it (didn't use it, just didn't want to give it away.....  denial, lolz ) for, oh, 2 years then finally got rid of it :(  i had watched it pouf flour all over the inside of it while it mixed the bread.  i'm sure there was flour dust that was inside the thing that you couldn't clean, but could potentially pouf back out.  broke my heart, but i was too afraid to use it, anyway........  wah.....


  6. well, i finally got to get my burger!!  hahaha i don't get out much, but we were on the way home and stopped at the red robin in knoxville tn.  we ordered at the bar, to go.  indeed, the chick brought me the ipad - IT WAS FILTHY - (i have a pretty high eew threshold lolz and if *i* think it was dirty,, it was gross)  i really wanted that burger, though, so i ordered anyway.  they didn't label the box, they were both overdone, and my fries had seasoning on them when i specifically requested them without.  i ate the burger anyway.  not sure if i got glutened or not being as i have been under a considerable amount of stress the past few weeks (and my guts turn to goo when i'm stressing) no killer headache...  but the bill was, like 30 bucks for crappy burgers in a dirty restaurant.  and fries that were scary.  so, i'm not going to give them a bad review on find me gluten free.  (i had to call the restaurant and have them describe the difference between a glutenous bun vs gluten-free bun so i could eat the right one lolz)  or maybe i should because of the fries?  i'd hate to narrow down restaurant choices for somebody when i didn't really get sick....  :(


  7. lolz newsflash:   WOMAN PASSES OUT FROM HOLDING BREATH IN BAKERY  that would be me...........

     

    reality is, if you live in The World, you stand a chance of getting cc'd from just about anywhere.  think about it, do people wash their hands *after* they eat their meal/sandwich?  nope.  but they sure do open doors and turn on lights, etc.  


  8. I wonder if it's not the smell but maybe particles in the air?  If you're that sensitive, even being in the same room as dough that's tossed around all day long in flour could leave you inhaling it's dust and then experiencing a reaction. Have you ever looked at your kitchen after baking?  There's always a fine dusting almost everywhere (except my dust is gluten free in my own kitchen). ;-)

     

    My friend's son has an anaphylactic allergy to wheat and he can't be in the same room even when a cake is being mixed without a reaction.

    if you are breathing flour dust from baking that can be in the air, it's a thing.  because you breathe it into your mouth and then swallow it (ingesting it) and then a reaction can be a reality.  the bread aisle at the wal-mart = not so much.  because they aren't actually baking it or mixing it, you can just smell the aroma.  so, dust = maybe a possibility of a real reaction, smelling it is not without anything to actually ingest.  

     

    wheat allergy isn't celiac, although i'm sure the reaction is serious.  somebody with a wheat allergy maybe cannot walk down the bread aisle, i do not know, but for celiac, you have to actually have particles that are ingested.


  9. the sad reality is, that is exactly what you would need to do at this point to be tested.  :(  the same thing happened to me (so, my blood test came back negative because i'd been off gluten, therefore no antibodies to detect)  hopefully they will develop a better test soon.  you could get an endoscopy, but, same thing:  you would need to go back on gluten for a few months.  i was dangerously malnourished and my doc advised not to.  i was diagnosed pretty much by accident.  

     

    so, there are your choices:  continue on the gluten-free diet and doubt your exact problem or consume gluten and get tested.  sorry to say, celiac is under-diagnosed and mis-handled by the medical profession all too often.

     

    good luck and welcome to the forum :)  (sorry to be debbie downer lolz)


  10. and, in the end, went to bonefish again hahaha - getting out of the hospital late and having to check in to the hotel (then i wanted to have a beer, mercy in heaven!) and the bonefish was not too far and stayed open till 11.  getting there around 9:30 it it not crowded and lolz making friends with the wait staff.  i had the chef talked into making me some soft shelled crabs WITHOUT the crabcake stuffing, but i chickened out at the last minute - next time, if it's still on the specials, i plomise...)  so, naked lobster tail it is, nice after eating turkey sammiches, chex, and almond butter & jellys the rest of the time.  

     

    dad is through graft surgery and it was successful.  God is good.  he just has to heal and get to moving around.  he is a tough guy.  maybe my mother in law will finally get some sleep.  the hospital is HUGE and i have been around it like a rat in a maze, so now i help people who are lost lololz  :)  thanks for the hugs and all prayers appreciated!!

     

    going back next weekend.  for the soft shell crab...  ;)  


  11. thanx, mamaw - yes, he is in a lot of pain :(  but the medical care/team/nurses are extraordinary.  he made it through graft surgery today and it went well.  he is my father-in-law and he is 82 so i appreciate the blessings.  my neice is actually a ccu nurse (not in nc) and she is helping us to understand what he is going through (and when to panic/not to panic <huge, because it *looks* so bad it's hard not to panic!  and i know it hurts him so much... )  so that is a big help, also.

     

    that is a nice menu collection - i love it when places have gluten-free menus - one of those has gluten-free ahi tuna salad!  woo hoo lolz - the rest of my meals will be snacks and sandwiches in the parking garage haha 


  12. i am having to travel to winston salem, nc as i have a relative in the burn unit there and he will be there for several more weeks.  i found a nice hotel that suits our needs (we were there this past weekend) but have to go back.  anyplace good from anybody local?  i want to try 'loop's' and we ate at bonefish last visit.  thank God for bonefish.  i can usually find one most places i travel to.  but, you know, sometimes you want something other than the 5 items on their gluten-free menu....  (and my husband makes me suffer through watching him eat bang bang shrimp and ahi tuna <o, why, o why is the ahi tuna not gluten-free, bonefish??????!!!)

     

    (ANNNND ONCE AGAIN:  it blows my mind that the freaking hospital cafeteria has NOTHING that is celiac safe.  o, wait, a banana..... wow, they have a salad bar <not eating it for fear of cc) 


  13. many of us have delayed reaction to being glutened - mine is 24 (starts with a headache) to 48 or so hours after ingestion.  then all the lovely symptoms return and it takes me 14 days for my body to go back to 'normal' - keeping a food journal will help you figure out where you have consumed the poison gluten.  like you, i was cutting out safe food just because it was the last thing it ate:  not true.  once i figured that out, i could pinpoint where i accidentally got gluten (mostly restaurants.  99 percent, seriously, ya can't just eat anywhere.  it's a pain to be so picky, but it is what it is)

     

    lolz and i *like* seeing the bottom of the toilet bowl vs. not -  it's when i can't is when it's a problem ;)


  14. lolz - one of the dumb things i had to learn is to stop licking my fingers!  in the beginning, i would fix the kids something to eat ('regular' chinese leftovers comes to mind, where the 'soy' sauce is made of wheat)  take it out of the microwave after heating it, stick my finger in it to test the temperature, and stick my finger in my mouth.  herp derp.

     

    or - hand sanitizer !  doesn't wash off gluten, it just makes it really germ free lolz - soap and water are your friend  ;)

     

    karen is right - three weeks is not very long in the grand scheme of things.  you probably have residual inflammation (or damage) that is irritated by many things.  it's hard to be patient, i know!!


  15. have you read the newbie thread?  

     

    https://www.celiac.com/forums/topic/91878-newbie-info-101/

     

    i think you should try using a food journal to see exactly what you're eating.  i have a delayed reaction to gluten (24-48 hours) so the food journal helped me to pinpoint what i'd been eating (or where or out of what, etc) when i couldn't remember everything i'd eaten.  

     

    or, it could be cookware (colander, wooden spoons, non-stick pans, etc) ?

     

    hope you feel better :)


  16. good luck :(  i travel to tuscaloosa (not far from b'ham - you have to drive through it to get to t-town) a few times a year and haven't been able to find anywhere (haha in the whole state, pretty much)  we went to panama city, fl last year (through L.A. <'lower alabama' ) and the 'find me gluten free'  app on my phone stayed blank until we hit atlanta........ (i don't even think there was a bonefish <and that is too much $ to eat there all the time)

     

    i pack a cooler.  on the up side, truck stops are stocking more gluten-free snacks.  so, there's that.  ;)


  17. the last few times i have been glutened, it's been from eating out :(  unfortunately, the sad reality is:  most restaurants (especially fast food) can't or won't keep your food completely safe.  there are just too many opportunities to get crumbs on things or cook them on grills that are already contaminated by gluten.  or your order gets mixed up (even if they catch their mistake, you have to make sure they just don't "pick the croutons off the salad", etc, so you have to keep the contaminated one until they bring a replacement)  there are restaurants that get it right, but man, o, man, you have to be sure (for me, it's 2 weeks to recover - ain't nobody got time for that)  

     

    i make most of everything that i eat and then freeze stuff - do i end up with some wierdddd combinations of foods?  yep.  but it's all safe.  i can make a pb&j sandwich in less than 6 minutes from freezer bread to brown bag if i have to hurry up and don't feel like starving (yeah, as soon as i step foot out of the house, i'm ravenous!!  it's like the doorway flips the switch lolz)  mostly everybody i know is used to me eating whatever, whenever.  i know what you mean about losing weight, i struggle with that issue, too.  

     

    you said you eat the fried rice - if they fry anything with soy sauce in their woks/grills, you are probably getting cc'd from that - most 'regular' soy sauce is made from wheat.

     

    i do still eat out (bonefish is a good, safe bet)  i hear 5 guys burgers & fries does a pretty good job for a fast food place - red robin also offers decent gluten free choices (although that was one of the places that glutened me - ate there once, no prob, ate there a 2nd time, pow... :(  )  so, look around, ask a ton of questions.  

     

    i'm glad your joint pain has eased up - you must be doing something right.  :)  good luck


  18. i had vertigo (o my gosh, i had the worst attack of it while DRIVING - i do not wish that on anyone.  plus, i was at the edge of a steep mountain cliff, so i'm lucky i got the car stopped without going over the edge) but now i'm fine.  i don't know that i'll ever bungie jump (HA HA NOT A CHANCE!!!)  but my migraines went away, as well.  asthma cleared up.  a whole mess of other 'unrelated' symptoms *poof* gone.  the wierdest thing?  ability to make decisions <didn't know it was a problem until i started sorting through all the things i had put aside because i was too tired/overwhelmed to deal with them.........  makes me mourn a little for the 25 years i went through in a fog  :(

     

    lolz - of course your hangnail is from years of undiagnosed celiac !!!  :D :D :D


  19. one of my best friends is now a co-owner of a restaurant.  i was like, YAY!!!  i'll finally have somewhere to eat out without worry!!!!  nope.  his business partner wants nothing to do with food allergy responsibility aka he's afraid if they tout something as gluten free/celiac safe that someone will sue them if they make a mistake.  'too much risk'  even though i can read their menu and most of it is completely and easily could be prepared gluten free (simple, fresh menu - steak, lobster, salads, etc nothing really fancy or intricate).  i even said i would go into the kitchen and supervise.  (i even offered to train the staff)   smh.....   <_<  it sure would be nice to go (anywhere) and not have to fingerprint every meal    :(


  20. nah.  pick your battles.  chances are, you would have had to wait on an appointment, anyway.  mine was two weeks after my dx (congratulations, you have celiac, eat gluten free, have a nice day)  - i was, like:  what am i supposed to eat in the mean time????  so, i did a ton of research and asked around here.  by the time my appointment came around, i cancelled it.  in hindsight, i probably already knew more than they could have taught me (and, i have heard some of them have no clue at all)  save your time and trouble.  really and truly, the only time i suppose you would need a dietitian/nutritionist would be in the first few days.  like:  congratulations, you have celiac, eat gluten free, GO SEE THE DIETITIAN (in an hour, go eat your last gluten meal, lolz) if you could see them in an immediate time frame, say, the same day or the next day, that would be helpful maybe.  THEN, have a nice day.  and you might :)  because you would know what to eat :)

     

    when you get dx'd with type 1 diabetes, they don't leave you flailing around for 2 weeks, though, <_<  so i see your point....   -_-


  21. I cried too... I still am. I am basically awed... I thought it would be so much harder. I thought it may never happen.  I am actually scared to pieces something will go wrong, or there will be a miscarry, or bad news on the genetic testing front....

     

    do not borrow trouble!   this is your little miracle :)  you are gluten-free, (the way your body 'runs' correctly) so this pregnancy should be a walk in the park  ;)  worry = stress <no no no!