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Member Since 30 Jul 2010
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#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....

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#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  :)

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#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  <_< 

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#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!

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#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



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) 

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#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!

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#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:

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#890398 How To Deal With Unsupportive Friends?

Posted by notme! on 01 October 2013 - 07:55 AM

In unrelated news...  I was sitting in church the other day and there was a reference to wheat or bread in the bible...  I leaned over and told my girlfriend, "My Jesus doesn't eat wheat."  HAHA!  Okay, so maybe I thought the comment was funnier than it really is but she looked at me, laughed, and started shaking her head.  Your talking about interactions with family and friends made me think of that for some reason.

lolz, eers!  :D mine too, either!  every time they talk about the wheat and the chaff, i think to myself, well, i guess i'm stuck with chaff...................   my husband has played Jesus every time they need one for easter (he's a long haired hippie type), etc, so i guess i got an 'in' being married to 'Jesus' ;)


The words "unsupportive friends" seem to be an oxy-moron ;)

lolz, colleen!  :lol:


i have found out that i have 2 or 3 sub-groups of 'friends' (let's get real, i only have one friend lolz) i have the ones who quit inviting me to their shindigs ("oh, you can't eat anything and it's a dinner.....")  the ones who forget every 2 seconds and try to feed me (mostly church peeps) the ones in the small circle who want to do *anything* they can to accomodate me (i tell them i'm fine, but they fuss anyway, make sure they bring out the unopened bag of whatever.... and plop it down in front of me..... dude, i don't LIKE those just because it says gluten free on the box/bag, doesn't mean i HAVE to eat it????  STOP IT)    you'll find out who's who.


i wish my mom was still around so i could tell her:  look, mom, they finally figured out what was wrong with me!  she always worried so much - i can't tell you how many doctors she took me to.  if she had a couple of more years with the internet, she would have figured it out.  (and i wouldn't have listened to her!  lolz!  love you, mom)  my point is, take it easy on mom  :) 

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#890143 Do You Take Your Celiac Disease Seriously?

Posted by notme! on 29 September 2013 - 10:32 AM

I think it's very possible to get glutened by YOURSELF if you touch the dirty bus seat that a toddler with gluteny hands and lots of crumb spillage sat in, and then pop food into your mouth. But who in their right mind wouldn't WASH THEIR HANDS before eating after touching a dirty bus seat anyway? That's all it takes to keep from getting glutened, or to prevent illnesses from germs for that matter. WASH YOUR HANDS! :lol:

AMEN!  :lol:


i mentioned to my sister-in-law that i haven't been sick (cold, flu virus, bronchitis, pneumonia, etc) at all, not even a sniffle, for almost a whole year!   when they were dropping like flies into the sick bed, i didn't even get nausea.  nothing!  she says "that's because you wash your hands all the time"  - i was like, duhhh................  don't you??  ugh, everytime i pick the kids up froms school(s) the first thing they have to do when they walk in the door is go wash their hands - wash the school off - yuck!  i am a soap and water advocate  :)

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#890013 Do You Take Your Celiac Disease Seriously?

Posted by notme! on 28 September 2013 - 09:07 AM

*i* do!  ms k, i see what you are saying - we hang around here to try to help people - most people who are new come onto this website, glean the info they need and move on.  so we have sort of a unique view of the celiac population.  but here's some things i have experienced:


i have one other celiac that i know in my town, and we belong to the same club.  we meet every few weeks and i bring my own dinner.  he eats the catered meal, with all the gravy and bread, etc!  i have known his wife for some time and she is a very intelligent woman, and no shrinking violet.  i talked with her  a little after the last meeting and asked 'what's up with your hubs?  i thought he was diagnosed - doesn't he know that eating all that stuff is going to cause him pain in the short and damage in the long run?"  she said, yes, he did all the education stuff on the disease in the beginning so he knows.  she tsk-tsk'd and said 'he will pay for it later and he knows that.  i have argued with him all that i am going to.  he is a grown man and makes his own decisions' 


my neice's friend is diagnosed and she is 24.  munching on pizza, eating doughnuts, etc.  i said:  WHAT ARE YOU DOING (she is a REGISTERED NURSE for crap's sake!!  she works in a hospital!)  she said:  i know, i know.  but i'm gonna live a little first.......  (SMH!)


so, i guess people who are *interested* in feeling well and living normally are vigilant/strict with their diets and we probably will see them on here every now and again if they hit a snag or have a question only this community would be able to answer. 


the people who are frustrating to us are ones who have been told to educate themselves but they just show up and report that they can't understand why they are still feeling like death when they haven't even tried to follow tried and true advice.


annnnd - i have a friend who thinks cutting out gluten will make her feel better - i said go for it.  but you have to do it all the way, or it won't work and you have to stick to it.  she calls me yesterday and says she ate at mcdonalds as a *reward*  for herself and now can't understand why she feels terrible.  i am not discussing gluten/gluten free with her any more.  she is on her own.  don't listen - feel $hi++y - now i don't care..................  she is still my friend, but i'm inclined to think she may actually like wallowing in self-pity........  :(

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#889495 Any 'canners' Out There?

Posted by notme! on 24 September 2013 - 08:28 AM

I canned some tomatoes today, 13 pints   :) Tomorrow it will be Salsa :)



that is a beautiful sight!  :)  i love it when the pantry is full of those lil' jars of yumminess. 


we have this contraption that squishes the pulp and juice out of the tomatoes (minus skin and seeds) so we have been freezing them.  so far so good - if we have a power outage, we are having marinara for dinner for a month lolz :D  i have cooked some of the tomatoes down into pizza sauce, then put them through the contraption and freeze them in dixie cups (each enough sauce to make one pizza)  i wish i grew more basil because i am almost out of the pesto i put up last year - it's so pretty and green - much better than you could ever buy........  anyways, i froze the pesto in dixie cups and they are about 2 TB each so if i need some, viola!  i got just enough  :)

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#889325 Not Tolerating "low Gluten" Host

Posted by notme! on 22 September 2013 - 11:43 AM

i go to a methodist church and i just bring a little bread in a snack baggie - i take it out when i go up, pastor blesses it, an i drink the 'wine' (grape juice) because it is presented in tiny individual glasses.  lolz - i have thought of bringing my own wine, but then everybody would want some......... (just kidding)..........  ;)

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#888702 Is It Common That Foods Without Gluten Still Make You Sick?

Posted by notme! on 16 September 2013 - 08:55 PM

yes, ma'am, peels are rough to digest at first - i am just getting peels back now (yay, because they contain lots of good stuff) but i am 3 years gluten free.  you might want to peel and cook your veggies at first, and if you're not taking a probiotic, you might want to.   i have had better luck with digesting vegs with them.  

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#887577 Walmart Now Has Bales Of Hay?

Posted by notme! on 07 September 2013 - 09:36 AM

In my opinion, if there is wheat straw with seeds on it tracked around the garden center at Walmart, there are some more sensitive celiacs who would want to avoid it.  It might be nice to post this in the super sensitive section where they could see it.  It would be a good idea to first find out if it really is wheat.


I am not familiar with saraphim's posts so I guess I'm not part of "*everybody*".

no doubt.


my point is, as a service to people on this forum, who do alot of research and try to back things up with facts, why would you post potentially alarming things without doing some kind of independent research on it first.  


i just called my local walmart - it is 'fake' straw, (first she said it was made of plastic or paper, which actually might be true, considering that's what they make their shoes from lolz)  with a paint-like coating on it for decorative purposes only, so you can't feed it to your animals.  she said you probably can't even get it apart................................................................  took me 5 seconds, it will take me longer to type this.....................  as a celiac, i am sensitive as well, although you probably have more problems than i do.  guess where i'm going today?  walmart.   <_<


later, taters :)

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#887502 Diagnosis Final Now

Posted by notme! on 06 September 2013 - 08:57 PM

He did say the oranges could cause me d but I have so many bruises on me. he said a lot of vit c supplements have gluten.

ugh - i didn't think of that :(  i just didn't want you to mistake it for D from gluten.  once you start absorbing vitamins again i hope it will come back up to normal - mine are finally good  :)  although still taking vitamin D supplements, but all my others are right where they're supposed to be, even my b <not supplementing, just from eating/absorbing!  (the dumbest things make me happy lolz)

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