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Celiac's Not Sticking To The gluten-free Diet


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#16 IrishHeart

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Posted 30 December 2012 - 05:52 AM

I'm sure my husband thinks I'm halfway crazy, as I frequently am laughing


mission accomplished then..... cuz If you ain't laughing, you ain't feeling better, toots..
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


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#17 KMMO320

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Posted 30 December 2012 - 12:50 PM

I hear what you are saying, and yes I agree with you.

Here is my thing though,

I have been sick for years with stomach issues (IBS, as they said) but it wasn't until 2 years ago that I started having bigger issues, brain fog, stuttering, numbness in my hands, dizzy spells, waves of nausea. I have been through so many tests in the last 2 years that have all come back negative for Celiac Disease, but I am IGA deficient, and my symptoms are fairly recent. My GI believes I am in the beginning stages, that I don't have much damage so the Endo didn't show much other than Ulcers, and I was negative for HPylori, and some slight inflammation. It wasn't enough to convince her at first that it was celiac disease.
She put me on the gluten-free diet any way and it was evident that after just a few weeks, my migraines stopped, the dizziness, nausea and stomach "distress" stopped. I start to stutter within 20 mins of eating gluten. SO she said OK..it MUST be Celiac Disease..and diagnosed me.

For me..I have a hard time wrapping my head around it. I was raised to trust doctors and I sort of feel like she wasn't totally sold on the idea, but she diagnosed me because I was really pushing it. It has only been since October that I was formally diagnosed and I go through phases of denial.

For the most part, I eat gluten-free. I even went to Disney World the first week of December and was strictly gluten-free, the chefs were amazing. But what happens is I go so many weeks of feeling awesome that I begin to doubt that I actually have a gluten problem...so then I will eat something. Some times, I feel sick right away, some times, it is days later. SO then I wonder...most people with celiac disease get violently ill, but I dont. I just get really uncomfortable.
I read on these boards of people who get deathly ill, but I have never felt that way. I don't know if my reactions are different, or if I was diagnosed before that happened to me, or if my reactions will get worse the longer I am gluten-free.

SO I guess I do cheat, because I am stupid and am still having a hard time wrapping my brain around it. I question whether I really have a problem, and then I have no doubt that there is..
I work with a kid who has been diagnosed since he was little (21 now) but he still eats gluten and never gets sick, but he is SO TINY.

So I think, as I have said, it is a psychological thing for me.
99% of the time I stay gluten-free, but I guess I test myself now and then, waiting for a big reaction...which is stupid, but I dont know how to change my thinking.
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#18 Gemini

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Posted 30 December 2012 - 03:23 PM

I think a lot of people cheat and it seems to be largely younger people. I also think that it's the same mindset as the diabetic who cheats and they cheat a lot!
For the older people like myself, you can't do that so much when you get past 50 as the bite in the arse is really bad. If you get deathly ill from eating gluten, and I am one of them, you don't cheat. I could see how you might think that cheating is OK but if you persist in this behavior, you may pay a big price down the road. It's the one thing you have to focus on when tempted to cheat. What I don't understand is how you could see a resolution in symptoms and go back to feeling awesome and yet still question the diagnosis? Maybe a form of denial?

I hope you will work on this and strive to eat well and ditch the gluten for good. Get creative in the kitchen and then you will not feel deprived. It really does work. And stop relying so much on what a doctor thinks and says and listen to your body. Doctors are human and make many mistakes with this disease because the testing is not concrete like an x-ray. They see black and white....not grey.
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#19 kareng

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Posted 30 December 2012 - 03:31 PM

I used to get upset by the adults here that cheated. I used to feel I should try very hard to keep them from all the problems that can happen to a Celiac who doesn't eat gluten-free - infertility, other autoimmune diseases, anemia and all the problems that causes, osteoporosis, on and on. I have decided that they are adults & they can choose to take their chances with these illnesses if they want. That is between them and their families or their god.

So people who have the info and choose a course that may not be the medically advised course, what can I do? If they don't have the info, then I feel we should help them understand Celiac and the " treatment".

I do get upset for children who have no say in their lives.

The kid who is " tiny" and whose parents didn't think his growth was reason enough to keep him gluten free.....those people make me mad.

I also feel bad for the children of a parent that thinks its Ok to not be the best physically they can be. The kids who have to watch Mom eat something they know she shouldn't and then she is in bed with a migraine or the bathroom with D and misses their events or just play time. I wonder if they are like children with substance abusers for parents - thinking the parent is choosing the " drug" over them.


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#20 IrishHeart

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Posted 30 December 2012 - 04:21 PM

I hear what you are saying, and yes I agree with you.
I have been sick for years with stomach issues (IBS, as they said) but it wasn't until 2 years ago that I started having bigger issues, brain fog, stuttering, numbness in my hands, dizzy spells, waves of nausea. I have been through so many tests in the last 2 years that have all come back negative for Celiac Disease, but I am IGA deficient, and my symptoms are fairly recent. My GI believes I am in the beginning stages, that I don't have much damage so the Endo didn't show much other than Ulcers, and I was negative for HPylori, and some slight inflammation. It wasn't enough to convince her at first that it was celiac disease.
She put me on the gluten-free diet any way and it was evident that after just a few weeks, my migraines stopped, the dizziness, nausea and stomach "distress" stopped. I start to stutter within 20 mins of eating gluten. SO she said OK..it MUST be Celiac Disease..and diagnosed me.
SO I guess I do cheat, because I am stupid


YOU HAVE CELIAC ! and Yes, if you cheat, SORRY but you are not very smart. There, I said it. So, STOP IT!!!

I think a lot of people cheat and it seems to be largely younger people. I also think that it's the same mindset as the diabetic who cheats and they cheat a lot!For the older people like myself, you can't do that so much when you get past 50 as the bite in the arse is really bad. If you get deathly ill from eating gluten, and I am one of them, you don't cheat. I could see how you might think that cheating is OK but if you persist in this behavior, you may pay a big price down the road. It's the one thing you have to focus on when tempted to cheat. What I don't understand is how you could see a resolution in symptoms and go back to feeling awesome and yet still question the diagnosis? Maybe a form of denial?


well said, GEM....and here is what I say.. You Cheat , You gonna die.

I used to get upset by the adults here that cheated. I used to feel I should try very hard to keep them from all the problems that can happen to a Celiac who doesn't eat gluten-free - infertility, other autoimmune diseases, anemia and all the problems that causes, osteoporosis, on and on. I have decided that they are adults & they can choose to take their chances with these illnesses if they want. That is between them and their families or their god.

So people who have the info and choose a course that may not be the medically advised course, what can I do? If they don't have the info, then I feel we should help them understand Celiac and the " treatment".

I do get upset for children who have no say in their lives.

The kid who is " tiny" and whose parents didn't think his growth was reason enough to keep him gluten free.....those people make me mad.

I also feel bad for the children of a parent that thinks its Ok to not be the best physically they can be. The kids who have to watch Mom eat something they know she shouldn't and then she is in bed with a migraine or the bathroom with D and misses their events or just play time. I wonder if they are like children with substance abusers for parents - thinking the parent is choosing the " drug" over them.


AMEN, K...
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#21 IrishHeart

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Posted 30 December 2012 - 04:26 PM

Sorry, peeps! .....but there comes a time when even the most "oh honey" type response, like you will get from me will eventually become.......

WTF! this is your life! Knock it off!

The treatment for celiac is a gluten-free diet . It is not a huge burden to be gluten-free!

It is a huge burden to be disabled, in a wheelchair, brain damaged and full of cancer and dying because you did not follow the prescribed treatment !!

(I know, I was almost there and NOW, I am NOT!) We have many beloved members battling cancer and all sorts of horrible diseases because they simply DID NOT KNOW they had celiac!!

But you all know the treatment so, stop being a dope! period!!

Enough said???
  • 2

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#22 Adalaide

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Posted 30 December 2012 - 04:42 PM

I used to get upset by the adults here that cheated. I used to feel I should try very hard to keep them from all the problems that can happen to a Celiac who doesn't eat gluten-free - infertility, other autoimmune diseases, anemia and all the problems that causes, osteoporosis, on and on. I have decided that they are adults & they can choose to take their chances with these illnesses if they want. That is between them and their families or their god.

So people who have the info and choose a course that may not be the medically advised course, what can I do? If they don't have the info, then I feel we should help them understand Celiac and the " treatment".

I do get upset for children who have no say in their lives.

The kid who is " tiny" and whose parents didn't think his growth was reason enough to keep him gluten free.....those people make me mad.

I also feel bad for the children of a parent that thinks its Ok to not be the best physically they can be. The kids who have to watch Mom eat something they know she shouldn't and then she is in bed with a migraine or the bathroom with D and misses their events or just play time. I wonder if they are like children with substance abusers for parents - thinking the parent is choosing the " drug" over them.


This is very much my attitude. I look at those children and it just breaks my heart. No, mommy isn't addicted to crack, she is addicted to bread. It is so simple to be healthy for your children. I didn't know why I was so sick, I look back and it just kills me a little inside to think of what my children were robbed of because of this. There was, in the not so distant past, a woman who just couldn't give up wheat, not even for her kids, and several were berated for finally giving her a good swift kick in the arse. (Which I only pray helped her see the light. I hope she has finally gotten help.) Doctors are only human, hell I basically had a screaming neon celiac sign over my head for 3 decades and was still only diagnosed by accident. Eat wheat, don't, whatever, but Irish is 100% right. If you have celiac and you're eating wheat you aren't exactly the sharpest spoon in the shed. We all give time to come to terms with it but eventually we'll all give you a collective swift kick. And don't do it for years then cry about your 5 new auto-immune diseases. You knew the risk. That is what bothers me, people know damn well what they're doing to themselves, know the risk but then cry when they lose the lottery. It is pretty much like crying because you threw yourself in front of a moving car and it actually hit you. DUH!!! It may hit the brakes, it may stop in time, but what kind of person takes that risk?
  • 1

"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#23 IrishHeart

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Posted 30 December 2012 - 04:58 PM

Doctors are only human, hell I basically had a screaming neon celiac sign over my head for 3 decades and was still only diagnosed by accident. Eat wheat, don't, whatever, but Irish is 100% right. If you have celiac and you're eating wheat you aren't exactly the sharpest spoon in the shed. We all give time to come to terms with it but eventually we'll all give you a collective swift kick. And don't do it for years then cry about your 5 new auto-immune diseases.


I agree. After I was misdiagnosed for my entire life, and I FIGURED IT OUT MYSELF, I said to my new GI doc,
"seriously? I may as well have had a GIANT RED ARROW pointing down to my head Glowing Celiac! Celiac! Celiac!"

and he said: "I'm sorry. I see it ...and I cannot apologize enough for my profession."

This is not about how long we all went UnDXED (because we all have horror stories that make us weep) . It is about making an adult rational decision to follow the only KNOWN prescribed EFFECTIVE protocol we know for this AI disease when we are diagnosed

(We are lucky; it does not involve drugs)

Anyone who chooses to ignore it is just foolish.



Sorry for the CAPS but sometimes, I think maybe it HELPS TO seem like I am YELLING!!

;)
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#24 Adalaide

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Posted 30 December 2012 - 05:09 PM

After I was misdiagnosed for my entire life, and I FIGURED IT OUT MYSELF, I said to my new GI doc,
"seriously? I may as well have had a GIANT RED ARROW pointing down to my head Glowing Celiac! celiac! Celiac!"

and he said

I'm sorry. I see it and I cannot apologize enough for my profession.

This is not about how long we all went UnDXED, or what we do once we learn.. It is about making an adult decision to follow the only KNOWN prescribed EFFECTIVE protocol we know for this Ai disease (we are lucky, it does not involve drugs)

Anyone who chooses to ignore it? Is just foolish.


Yes. I only pointed that out because of the mention of not entirely trusting a doctor and diagnosis. Lots of us don't always trust doctors, but so what? There is one thing we can certainly trust and it is our bodies. So yes, if you respond well to not eating gluten, then respond poorly to eating it, choosing to eat it is simply foolish. (In my defense, I am much better at real conversation and don't make myself look like a moron quite as often!)
  • 0

"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#25 IrishHeart

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Posted 30 December 2012 - 05:10 PM

And it is seemingly insignificant, I know, but since I am on a ranting roll...what the heck!


Um,.....it is "celiacs" (plural form ) ...not "celiac's.".... (possessive form)

SO sorry, but l see this mistake all the time and I had to get that out of my English Professor system.

With all due respect, tennisman. :) Please, please ..... do not be mad at me? :lol:
I am thinking....perhaps this was just a typo.?

Whew!.....thanks, I feel so much better.

Big hugs to all! XX
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#26 squirmingitch

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Posted 30 December 2012 - 06:08 PM

And it is seemingly insignificant, I know, but since I am on a ranting roll...what the heck!


Um,.....it is "celiacs" (plural form ) ...not "celiac's.".... (possessive form)

SO sorry, but l see this mistake all the time and I had to get that out of my English Professor system.

With all due respect, tennisman. :) Please, please ..... do not be mad at me? :lol:
I am thinking....perhaps this was just a typo.?

Whew!.....thanks, I feel so much better.

Big hugs to all! XX


I agree. I also see the mistake where people say they have celiacs disease. No, they have celiac disease. There are celiacs & they have celiac disease they do not have celiacs disease.

Sorry, my rant over.
Big kisses to all.
  • 1

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#27 KMMO320

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Posted 30 December 2012 - 06:41 PM

YOU HAVE CELIAC ! and Yes, if you cheat, SORRY but you are not very smart. There, I said it. So, STOP IT!!!



Don't apologize, I need to hear it. It is a huge thing to wrap my head around, and no it is not a burden. I actually have come to enjoy my UDIs gluten-free bagels and bread, I even found pasta I like. For the most part, my husband is supportive, but once in a while he will say something like, "its the newest thing" and "Drs dont really know what the reason is, so they say gluten" ANd then I hear it from some cooks at work, that is the "fad" and I start to doubt myself, even though I know better.
Then, my symptoms aren't as severe as others, so I think, maybe I don't have it then..I almost feel guilty for claiming to have celiac disease when others are very very ill, and I am not.
It's a mind thing that I need to get over. The proof is the proof. I guess I dont want to admit that anything is "wrong" with me.

my cheats have been fewer and farther between. I just need to nut up and not do it again. I dont consider it cheating, its more like testing. But I never really thought of the damage one time can do.
That is why I keep coming here even when I think I dont need the support.
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#28 IrishHeart

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Posted 30 December 2012 - 07:02 PM

Being in denial is not helping you, hon. You already know what damage can be done. If not, READ about celiac disease and quit the malarkey!

There are many complications of untreated celiac.

"Untreated " means undiagnosed OR not following a gluten free diet.

http://celiacdisease...mplications.htm

I talk privately with 2 lovely women on here who are battling cancer as a result of long unDxed celiac.

They struggle to live and stay positive! I had major complications of celiac disease --as have many others---and am grateful my 6 month repeat mammograms and biopsies for the last 15 years come back negative after removal of a mass. I am sorry I had miscarriages and no children. I lost years of my life to this disease and I work to regain my muscles....Should I go on?

We could tell you horror story after horror story, but it is useless if you refuse to understand that celiac is a life-threatening disease
You're no dummy, hon.! .so stop acting like one. :)

Your choice. Your life. Sorry for the" lecture", but I cannot help but think you need a wake up call.
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#29 Adalaide

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Posted 30 December 2012 - 07:09 PM

Listen to Irish. Everything she says is only said with the the love of someone who wants to keep someone else from suffering as so many others have. So simple, decide that the last time is the last time. Only you can be your advocate. Choose health. We'll all be here if you have a moment of weakness, come to us before you cave. Don't wait until it is too late.
  • 1

"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#30 squirmingitch

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Posted 30 December 2012 - 07:18 PM

Well said Adalaide!
  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 



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