Jump to content



   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


notme!

Member Since 30 Jul 2010
Offline Last Active Private
-----

#898060 Dealing With The Emotional Aspects Of Ai Disease

Posted by notme! on 03 December 2013 - 09:13 AM

(throws self on floor)  i would LOVE a gingerbread cookie!  one that i didn't have to fingerprint or hover over for fear of ("O MY GOSH don't use that spoon!!) someone contaminating it  :(  it's been a rough week (ok, month) for me.  i have had house guests pretty steadily for about 2 months (with little breaks in between) and for about a month of that time i have been down from 2 gluten hits.  talk about these people i love coming hundreds of miles to visit me and all i want to do is sleep.  and the meals?  forget about it:  stress, stress, stress stress stress.  why do they make the person who can't eat normal things in charge of the meals??  i was like:  eat what you want, i'll eat whatever.  i don't care if it's a turkey damn sandwich for every meal; anything is better than 14 people staring at you waiting for a response.  i am so upset by this whole run of visits, i'm seriously considering going away next year by myself.  i honestly felt like such a burden - we have had this thanksgiving tradition (at our house) for 17 years and i am ready to break it.  kkkkkkkkkkk.  deep breath........

 

then some sweet soul posts this:

 

Also... I found this little poster on being mentally strong I want to share

 

 

 

Be Mentally Strong 

 

1.) Don't waste time feeling sorry for yourself

2.) Dont give away your power

3.) Dont shy away from change

4.) Dont waste energy on things I cant control

5.) Dont worry about pleasing everyone

6.) Dont fear taking calculated risks

7.) Dont dwell on the past 

8.) Dont make the same mistakes over and over

9.) Dont resent other people's successes

10.) Dont give up after first failure

11.) Dont fear alone time

12.) Dont feel that the world owes you anything

13.) Dont expect immediate results

 

and it's just what i needed.  and that cookie  :)  thanx, guys, you're all awesome :)


  • 1


#897700 Did Anyone See The New Study Published About Gluten In Orthodontic Materials?

Posted by notme! on 30 November 2013 - 05:57 PM

 

 

From Medscape:

"Approximately 95% of celiac disease patients express HLA-DQ2, and the remaining patients are usually HLA-DQ8 positive. However, the HLA-DQ2 allele is common and is carried by approximately 30% of Caucasian individuals. Thus, HLA-DQ2 or HLA-DQ8 is necessary for disease development but is not sufficient for disease development; its estimated risk effect is only 36-53%."

http://emedicine.med...790189-overview

36-53 percent of the 30 percent of people who carry the gene develop the disease.  that is different than what you are purporting.


  • 1


#896875 Nuts Dot Com Is My New Favorite Website

Posted by notme! on 22 November 2013 - 12:42 PM

yeah!  got me some nuts today from nuts dot com - they are ON IT - i ordered them online tuesday night and they arrived today :)  i completely over-ordered LOLZ but i'm sure i will find something to do with (pecans!  who doesn't like pecans!) them  -  they sent a little sample of golden flax seeds, too, i have no idea what to do with them :P and i also got some beautiful sliced almonds <not all beat up and broken like they have at the grocery store) 

 

the box is even quite amusing ^_^


  • 2


#896851 Thanksgiving Dinner

Posted by notme! on 22 November 2013 - 08:44 AM

I was just shot down with my Chicken idea!! We went to my BIL's and he said it was going to be finger food only. He said my other SIL was bringing Subs, I said I cannot eat subs. I was going to bring a chicken. Hubbs said no I am making wing dings. I said I cannot eat them because he is going to deep fry them in our deep fryer. He said so we will clean it. My thought was "I still cannot eat them" I was telling a friend about it. She said your just making it hard on your self! Because you can just change the oil and eat from it. I try and tell these people it is not that simple. So end result I will probably go and NOT eat anything. I cannot cook my own wing dings in the oven. and say ohhh these are mine. When hubbs is bringing deep fried ones.  I said What eles can I eat? Ohh Karen will bring nuts... Hmmm thanks !! So I cannot eat what you guys make and I can't bring my chicken? Hmmm geee thanks!! Thought at least my husband had my back. 

Then I said I was having problems with corn products, they said ohh we seen you eating a candy the last time you were here. I ate two small pieces of chocolate. Wow here is my wrist slit it! So I am not sure how this Thanksgiving dinner will be for me!! My daughter will bring a gluten-free cake, I don't eat cake. And my other daughter will bring a desert. So I am not sure what I will do as of yet!! Pfftttt Maby keep my plopy hiny home?

i WOULD cook my own and say 'these are mine'  !!  what is wrong with these people, what are they, the candy police??  WHY can't you cook a chicken and bring it??  for people who are going the non-traditional route (SUBS for t-giving?  not exactly turkey and sweet tater pie...)  you would think they wouldn't care what you brought.   if i was going to go (and, God bless you for still even considering going, because i would tell them to cram it, stay home, and be thankful to be around somebody who loves me:  ME) i would bring my own food.  evidently they are going to give you a hard time whether you eat or don't eat, might as well eat safely and take your lumps for a good reason.  (LOLZ - i am a little bit "in your face" sort of person - can you tell :lol: )  rant, rant rant rant rant rant rant!

 

and, last but not least:  shame on dave!!  :angry:  

 

so, here's the alternative solution (that will also spend dave's $$ hahaha hit 'em in the wallet, i always say :P )  go get you a brand new deep fryer.  problem solved  ^_^ and that'll teach him to chuck you under the bus :D


  • 1


#896779 New Here - Ongoing Symptoms After Glutening

Posted by notme! on 21 November 2013 - 12:58 PM

in the meantime, a long black sedan pulls up in front of your house.  giant red and yellow m&m's emerge from the vehicle equipped with ak rifles........  kyle busch is doing burnouts on your lawn, somebody is feeding your dog chocolate......  milton hershey is rolling over in his grave...

 

don't mess wit m&ms  <_<


  • 1


#895915 Best Way To Deal With Servers?

Posted by notme! on 14 November 2013 - 02:01 PM

I mainly posted here to ask how people cope with these instances of having people not believe/indifferent to something that would make one very sick.

 

that is the main problem:  most people don't even know what gluten is (or why we are asking all these crazy questions lolz) - to *us*, 'do you have a dedicated gluten free fryer?' is an important question - to them,( unless, as you pointed out, they are allergy savvy) it's over the top.  most of the time they don't know the answer or they may tell you the wrong thing - like, sure, the fryer is dedicated.....  it's too late to find out after you are sick that it was dedicated to frying things (what?)

 

my sister is the office manager of a pretty nice restaurant - i can't eat there, even though they have a gluten-free menu - they do not have separate prep areas, they use the same grill to cook everything, and there is no regard to cc, as bread is 'harmless' if they just take it off the plate.  BUT they still tell their customers that their food is gluten-free, they *assure* them.  i would be sick as a dog if i ate there.  the only reason my sister knows that (and complains loudly to them ) the food isn't safe for celiacs is because i have it.  but most people don't know any celiacs  :(  or even know what it is :( or what gluten is, for that matter.

 

you don't have to hide in your kitchen, but you might be stuck in the bathroom  :o  because you do take a chance if you eat out.  i am speaking from a dumb point of view confession that i not only got hit once (last month) (and i quizzed servers and they told me what i wanted to hear = you can eat here, no worries. but they were wrong and guess who had to pay the piper?  not the server!)   as soon as i got over the first one (14 days of misery) i went right out and ate at a place that i had eaten safely before, only to get hit again (another 14 days) it's gonna be awhile before i get my nerve up again!  as a former 'restaurant snob foodie' i say to you:  good luck  :) 


  • 1


#894297 Boyfriend's Sister Is A Pastry Chef - Misinformed About Celiac?

Posted by notme! on 02 November 2013 - 01:51 PM

maybe she got an 'f' on her paper  :lol:


  • 1


#894263 Ugh - I'm Swearing Off Eating Out For Awhile!

Posted by notme! on 02 November 2013 - 10:12 AM

last month we had my bff and her daughter come for a visit.   my daughter had some time off from school, so we took a trip to nashville.  my friend got a suite with a kitchenette i'm sure so that i would be able to fix myself something to eat.  (i didn't - i brought sandwich meat and bread, etc)  but everyone was so *hungry* all the time <the girls) that after the first day, i just said "ok - here's a bunch of restaurants in the area that have a gluten-free menu"  and let them choose from the find me gluten free app on my phone.  we had lunch at wild horse saloon, and dinner at margaritaville.  2 days later, i can't keep my balance, i have a headache and can't keep my eyes open, so obviously i got cc from one of those places, being as i only ate out on one day (two meals)  so, chalk one up to no research done on either place.  i am dumb.  suffer 2 weeks.....  so then my oldest daughter was here visiting and we decided to go to the red robin THAT I  ALREADY RESEARCHED AND ATE AT AND IT WAS FINE!  ugh - i am back in gluten-head hell again!  the place was soooo much busier the first night i ate there, and i quizzed the server like it was my first time eating there (even though i knew they had a dedicated fryer)  i guess it's always a crap shoot......... 

 

the places in nashville both had gluten-free menus, so i guess that doesn't mean they know what they're doing.  the girl at the red robin answered all my questions like she knew what she was talking about.  you would think after 3 years of gluten-free i wouldn't fall on my head anymore - ughhhhhhh  :( 

 

i am always the one telling everybody to watch out eating at restaurants and now i am eating my words.  oh, well, i guess i will since they're gluten free lolz  <_<


  • 1


#893698 Just Cant Help Myself....

Posted by notme! on 29 October 2013 - 07:44 AM

i still believe it is all mis-diagnosis.  it is celiac if it is celiac they just told you it was something else because they don't have a test good enough yet.  i didn't have 'pre-celiac' - i had a baby and it turned on the gene -BOOM - celiac.  except every doctor i went to told me it was something else, gave me another pill, pat on the head...  my symptoms didn't change, i just got worse from damage.  for 25 years.   the medical profession must just get a pop quiz on celiac disease in med school, as little as most of them know about it.  even when i was diagnosed they couldn't tell me what to eat or not to eat.  it's not some mysterious medical phenomenon of something developing into something else.  it's sheer ignorance of the disease in the mainstream medical society.  i can't tell you how many people come on here and say that their doctor told them they probably don't have this 'fad disease' and don't bother to test or give them the wrong test.  or mis-interpret their own test!  or tell them to try going gluten free before testing - <that is my personal pet peeve!!  then it's torture for them to go back and eat gluten again, or the test comes back negative.... arghhh!!  my point is, for a very long time very many doctors told me different reasons for the way i felt and none of them put 2 +2 together and got celiac.  it is NOT a new disease, it is just that it's not in their 'repertoire' i guess.  i never heard of it until i is one.  my gi doctor (whom i had the greatest respect for)  told me not to go 'overboard' when i said i was considering cutting out dairy and soy.........  what??  she said they were both gluten free so don't worry.  chalk that up to stupid things doctors say lolz  :P (that's not why i was cutting them out, but she should have known that)

 

ok - rant over.  lolz :)  brought to you courtesy of my personal experience of being misdiagnosed and almost dying of malnutrition... :ph34r:   yay, doctors....


  • 1


#892633 The What's For Dinner Tonight Chat

Posted by notme! on 19 October 2013 - 12:53 PM

I copied recipes out of different recipe books so I can find them.  And any other recipes and put them in sheet protectors in 3 ring binders.  You can get them out and wipe them clean if you slop on them.

 

 

yup-plastic sheet protectors here too. I always slop on them  :lol:

omgosh, you guys, that is exactly what i had!!!!!   :D   before gluten free  :(  so i was collecting new ones, mostly off the interwebs or gluten-free adjusted old favorites. 

 

and, i *has* a tech.  this is not the first time my laptop has done this.  but he is my daughter's b/f and working/going to school.  notice how i am not sweating the demise of all my info.  because this is not the first time.......  he comes and re-sorts all my stuff, puts a better operating program on it (and explains to me in great detail how it is better and why)  (all i can hear is zzzzzzz) then i load it up and blue screen it again.  he says it's because it updates itself or what i heard "blabbity blab"  i love him with all my heart but i never understand a word he says when he talks about computers.  he can even put the keys back on.  in record time, too  :)


  • 1


#892180 Just Cant Help Myself....

Posted by notme! on 16 October 2013 - 09:02 AM

No, I haven't notme! I will have a look now thanks :0)

it's on the 'coping with' section - i would post a link but i'm on my husband's notebook and i keep messing it up (lolz - this thing is lucky it hasn't hit the wall yet hahaha)  definitely worth the read, and probably many things doctors can't tell you because they don't know  :rolleyes: mine just told me 'congratulations.  you have celiac.  eat a gluten-free diet and GOOD LUCK'  i said how do i do that.................  'just don't eat gluten'  DAH !  and the last time i went to my gp, he told me he refers his patients to 'that celiac website'  if they want to know anything about gluten-free diet  <_< 


  • 1


#892041 Just Cant Help Myself....

Posted by notme! on 15 October 2013 - 11:34 AM

ugh - sorry to hear about the whole doctor thing, then.  i wish testing was easier/more definitive...  i am constantly worried that people are not ruling out other conditions which have similar symptoms.   i am also 3 years gluten-free and my quality of life has gone up tremendously!  so, it's worth it to be uber careful :)  have you read the newbie 101 thread - lots of good info/tricks, etc that make resisting temptation and keeping your food safe.  once you have eliminated gluten completely (NO CHEATSIES) you should be able to notice improvement.  think of feeling good as your 'carrot on a stick'  <also carrots are gluten free, so there's that lolz probably the stick, too  :D  good luck!


  • 1


#892036 Homemade Bagel Recipe?

Posted by notme! on 15 October 2013 - 10:45 AM

Hi everyone!

 

I'm looking for a good gluten free bagel recipe. I'm a good baker, so I think I'm up for the challenge! The recipe I have in my go-to book has a LOT of potato starch in it, and I'd like to make something a little more nutritious. Also, I prefer baking from scratch rather than using mixes. Anyone have a recipe they can share?

 

Also, I found this one online. Has anyone tried it? http://www.thebaking...ree-bagels.html

 

Thanks!

oh, me!  me!  and they were delicious!!  (and they froze well, too, i pre-cut them before i froze them)  i really have had very good (and tasty!) luck with every recipe i have tried on their site.  the easter bread (paska) is fablulous and i was wanting to try the dough/batter for fried donuts.  but i haven't had time to fool with it yet  :)  the paska is dead on, though.  my grandkids wolfed it down (i made my own icing and sprinkled it with rainbow non-pariels) 


  • 1


#890848 Newly Diagnosed, Not Optimistic About New Lifestyle

Posted by notme! on 05 October 2013 - 09:09 AM

wine, chocolate, lobster <all gluten free :)  what gem said about your villi - once they get healed up, you may find yourself not lactose intolerant anymore, so, maybe ice cream ??  i *heart* rudi's bread - they have improved it over the past few months - and tinkyada pasta is my favorite.  it's trial and error, but you'll get more comfortable with it as time goes by.  we do all sorts of traveling (do yourself a favor and skip the fast food restaurants - very likely you will not get a safe meal there, no matter what the kid at the counter says lolz) 

 

i think you will find that other, "unrelated" problems will be cleared up - celiac is systemic - so, it's related to your whole body, from your bones & muscles to your nerves.  once it starts getting the right 'fuel', your body will stop fighting itself and begin to absorb necessary nutrients.  you will be less fatigued :)  i remember the first day i did TWO THINGS IN ONE DAY without coming home and collapsing - it was a great feeling and i forgot that you could even DO that lolz  :D

 

anyways, everything gem said :)  i am late to this pity party lolz - but you are in good company here.  even doctors can't give you the awesome advice you can get on this forum.  it pretty much saved my sanity - we know how you feel.  so, grieve for your food - we all did it and it's normal.  there's a light at the end of the tunnel, trust me!


  • 1


#890636 Ridiculous Conversations

Posted by notme! on 03 October 2013 - 02:10 PM

O MY GAWD YOU CAN'T EAT ANYTHING!!!  yes i can - just not the crap you're eating............ <_<

 

i love the "i think i have that" people, who, as soon as they hear how strict you need to be, abandon the idea that they could have a problem.  "oh.  i don't have *that* - that's too hard."  oh, brrrrotherrrrr  :rolleyes:


  • 3