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penguin

By penguin
in Introduce Yourself / Share Stuff

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darlindeb25 Collaborator
darlindeb25
Posted

Celiac Disease can be corrected with the proper diet as a must, and it can reverse intestinal damage by diet controll, but it MAY develop into other autoimune issues if not taken into control.

Celiac Disease can not be corrected, the symptoms can be relieved, most problems can be corrected, yet the celiac disease will always be there. Once a celiac, always a celiac. Gluten intolerance can not go away either. Some people think they can go back to gluten, yet should not because the damage will return.

Gluten intolerance/celiac disease is a lifetime problem. We must realize that we will live with this forever and if we want to live a long life, then we must stay completely gluten free.

Anne Lee, Dr. Peter Green's celiac nutritionist personally told me that doctors have no way of knowing how long or if ever damage will repair itself. She says that so many factors must be factored into the equation. She says they can't know how much time it takes a person who has been sick for years and years to repair all the damage. My dad was 69 when he was diagnosed and I remember him taking stomach pills when I was very young, yrs and yrs of them, Tums forever too. Maybe I will never feel 85% even, but I am not sick like I used to be and that's a wonderful thing.

Deb

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Canadian Karen Community Regular
Canadian Karen
Posted
Celiac Disease can be corrected with the proper diet as a must, and it can reverse intestinal damage by diet controll, but it MAY develop into other autoimune issues if not taken into control.

Celiac Disease can not be corrected, the symptoms can be relieved, most problems can be corrected, yet the celiac disease will always be there. Once a celiac, always a celiac. Gluten intolerance can not go away either. Some people think they can go back to gluten, yet should not because the damage will return.

Gluten intolerance/celiac disease is a lifetime problem. We must realize that we will live with this forever and if we want to live a long life, then we must stay completely gluten free.

Anne Lee, Dr. Peter Green's celiac nutritionist personally told me that doctors have no way of knowing how long or if ever damage will repair itself. She says that so many factors must be factored into the equation. She says they can't know how much time it takes a person who has been sick for years and years to repair all the damage. My dad was 69 when he was diagnosed and I remember him taking stomach pills when I was very young, yrs and yrs of them, Tums forever too. Maybe I will never feel 85% even, but I am not sick like I used to be and that's a wonderful thing.

Deb

I think what she meant was the the damage can be corrected, but she certainly did not imply ALWAYS. Moreover, she didn't say "cured". She's fully aware "once a Celiac, always a Celiac".

Karen

Rikki Tikki Explorer
Rikki Tikki
Posted
I think what she meant was the the damage can be corrected, but she certainly did not imply ALWAYS. Moreover, she didn't say "cured". She's fully aware "once a Celiac, always a Celiac".

Karen

I think Karen is right. It looks like it was the way she said it, not what she said. Or the way it was taken, the basic information was that celiac damage can for most people be reversed.

Lisa Mentor
Lisa
Posted
I think Karen is right. It looks like it was the way she said it, not what she said. Or the way it was taken, the basic information was that celiac damage can for most people be reversed.

Yes, as intended......Celiac Disease has no CURE, but will proper control the damage can be repaired much of the time.

Lisa

lorka150 Collaborator
lorka150
Posted

thank you for clearing that up. i thought i was going a little nuts.

All-about-March Newbie
All-about-March
Posted

Ok. I'm new. New to celiac disease, new to the forum, new to forums in general - never taken part in one before, so I apologise if my posting here is not proper forum etiquette, but I feel the need to contribute.

I joined this site because after my dx, I was feeling really alone, sad, angry, confused, afraid (the myriad of emotions that can come with any life changing event)....mostly it was the alone that was getting me. I was 'lurking' on this site for some time before actually joining and then thought I may benefit from joining a 'community' of others going through or having gone through the same as myself. To find ways to cope, to feel less alone and to gain as much info as I can to help myself get on that path to 'wellness'. Heck, maybe even meet some new people and have a little fun along the way.

I completely understand that some of you get tired of the same questions and same issues arising over and over from us newbies. I for the most part try to do forum searches on topics prior to posting with a question. I want to thank all of you who continue to share your experiences and opinions....I have gained knowledge and insight that I probably could not have found on a google search. Nini's newbie survival kit for example - good stuff and thanks! :)

I guess I just want to say that I hope that not too many 'veterans' get so frustrated that you leave or quit offering your knowledge, experience and support to the forum...all of which helps many 'noobs'. :);)

Canadian Karen Community Regular
Canadian Karen
Posted
Ok. I'm new. New to celiac disease, new to the forum, new to forums in general - never taken part in one before, so I apologise if my posting here is not proper forum etiquette, but I feel the need to contribute.

I joined this site because after my dx, I was feeling really alone, sad, angry, confused, afraid (the myriad of emotions that can come with any life changing event)....mostly it was the alone that was getting me. I was 'lurking' on this site for some time before actually joining and then thought I may benefit from joining a 'community' of others going through or having gone through the same as myself. To find ways to cope, to feel less alone and to gain as much info as I can to help myself get on that path to 'wellness'. Heck, maybe even meet some new people and have a little fun along the way.

I completely understand that some of you get tired of the same questions and same issues arising over and over from us newbies. I for the most part try to do forum searches on topics prior to posting with a question. I want to thank all of you who continue to share your experiences and opinions....I have gained knowledge and insight that I probably could not have found on a google search. Nini's newbie survival kit for example - good stuff and thanks! :)

I guess I just want to say that I hope that not too many 'veterans' get so frustrated that you leave or quit offering your knowledge, experience and support to the forum...all of which helps many 'noobs'. :);)

Thanks Beth! I am glad you are gaining knowledge from us "dinasaurs" ;) . Sharing knowledge and experiences and getting support and making new friends is what this board is all about. It may take a detour every now and then, but always gets back on track!

Welcome! Glad you started posting!

Karen

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CarlaB Enthusiast
CarlaB
Posted

Beth, welcome to the forum! I agree with you completely. Even though I have support from my family, no one really understands what it's like to feel rotten even though you look fine, and to have to cut out so many foods. It's a great support having a place like this to be around those with your same problem -- and to be able to learn from each other. I actually think this particular thread has encouraged some of the veterans around her to post more often to new member's posts and answer the same questions again. I feel like it's our turn to be answering these questions, in the same way someone took the time to answer ours. I think this thread has also spurred on a little more courtesy when people disagree with another poster. Thank you for sharing your thoughts.

Lisa Mentor
Lisa
Posted

Welcome

And I am certainly glad that you feel comfortable to post here. We all want this forum to be a friendly and welcoming as possible. Remember, we all were where you are now and can recall the "lost" feelings.

As many of us have said previously, I personally feel the need to "pay if forward" as Karen has said. Many have become very good friends and I feel that I have a debt to pay. I will continue to help others as they have done for me.

It's nice to get a thank you, though. :):)

Lisa

AndreaB Contributor
AndreaB
Posted

Beth,

Welcome and ask away!

penguin Community Regular
penguin
Posted
  • Author

*thud*

Thanks, y'all, for proving my point.

Heineni said it just about as well as I could.

tiredofdoctors Enthusiast
tiredofdoctors
Posted

YAAAAAAAAAAA!!!!!!!!!!!!!!! You're back! I have missed you sooo much! Boy, am I glad you're back on!

Beth, Welcome. I don't think that you will find a more informed, caring, compassionate group of people ANYWHERE than on this forum. It's been a lifesaver for me, that's for sure. I hope you can get as much from this great group of people as I have . . . you will not regret "hanging out" with us. (Except on the night of full moons . . . . but that's another story.)

AndreaB Contributor
AndreaB
Posted

Does her post mean she's back or just dropped by.

I hope she's back. :D

tiredofdoctors Enthusiast
tiredofdoctors
Posted

I'm hoping she's back!!!!!

CarlaB Enthusiast
CarlaB
Posted

Didn't sound positive to me ...

VydorScope Proficient
VydorScope
Posted

She is not back, infact based on what she posted she has found confirmation that it was right for her to leave.

Go back and read what Heineni posted....

tiredofdoctors Enthusiast
tiredofdoctors
Posted

POOP.

VydorScope Proficient
VydorScope
Posted
POOP.

NO, that the GFP thread. I know it gets confusing around here.....

GFBetsy Rookie
GFBetsy
Posted

I was clicking through the "New Posts", and one of the threads had messages from Penguin, and I was all excited . . . and then I saw that the date of her posts was August 9th. :(

AndreaB Contributor
AndreaB
Posted
NO, that the GFP thread. I know it gets confusing around here.....

:lol::lol::lol:

Guest nini
Guest nini
Posted
Chelsea,

However, as time as gone on... I've been frustrated with people giving out medical advice when they have no medical background... giving BAD medical advice when they DO have a medical background... "diagnosing" people over the internet... being incredibly paranoid and blaming everything on celiac disease... never weighing the possibility that there's something else going on with their health, or other ppl's health, besides gluten... telling anyone and everyone who comes on the board who is even investigating the slight possibility of being gluten intolerant that they must stop eating all gluten NOW (as if every problem can be traced to celiac disease or gluten intolerance)... Simple questions getting derailed into philosophical debates... No one calling out people who give out dangerous or uneducated advice...

just a couple of things I wish to point out about THIS PARTICULAR message board forum...

A) when someone comes here they've either already been dx'ed with celiac OR have a damn good reason to suspect it, hence why most of us say you have to go off all gluten immediately

B)We do mention to continue exploring other health problems, however, the one thing that seems to get missed is the clarification that one does not need to be consuming gluten to explore other potential health problems AND if going off gluten eliminates said health problems then a great big DUH, problem solved.

C)I haven't seen anyone blaming everything on CELIAC disease, no, what I have seen is some people suggesting that there is a common link between Celiac and other related disorders AND that most likely YES it is GLUTEN that is responsible for at the very least aggravating other health conditions if it doesn't actually cause them.

D)Are we giving out medical advice? No more so than the people at a local support group would do, just trying to relate it to PERSONAL experience.

sorry, I just have been stewing about this post for a few days and felt like I had to say something.

You have to keep in mind that because the focus of this board is Celiac, that is where our main focus is going to be. Oh yeah, someone comes in here with all the complaints that point to classic Celiac and asks "COULD THIS BE CELIAC?" am I going to say "UM NO, sounds like IBS to me" wrong answer... I'm going to say Of course it sounds like it could be celiac, if you think you have a problem with gluten try eliminating it... how is that not sound advice? That is what the majority of posters on here do...

jerseyangel Proficient
jerseyangel
Posted

OMG--Nini, thank you so much for saying that! I've been "stewing" a bit myself lately about all of this.

All of these points have to be taken *in context*. By the time people find us here, they have already, in most cases, been through the mill--misdiagnosis, disbelieving relatives, sick kids, etc.

This is a support group board--people shouldn't mistake other's experiences for medical advice.

eKatherine Apprentice
eKatherine
Posted
C)I haven't seen anyone blaming everything on CELIAC disease...

I have seen quite a bit of this, and whenever I've suggested that someone should continue to explore other possible causes, I've been shot down and drowned out.

Judyin Philly Enthusiast
Judyin Philly
Posted
I have seen quite a bit of this, and whenever I've suggested that someone should continue to explore other possible causes, I've been shot down and drowned out.

I swore I was not going to post in this thread but i have to say this

"When I was so sick in May and was writing about my feeling so bad and so tired of the celiac disease taking it's toll on me...........it was Patti who said,

"Have you taken your temp? You have to think outside the box sometimes with this disease."

The more I posted the more people came on and said it was their personal opinion from living and dealing with this disease, that you must look 'outside the box' and not always focus on celiac disease. Many loving and supportive people got me to go to the dr and was dx's with cellulitius.

Then, there were those who suggestions I took and some I did not.

Some told me to go to the hospital and get IV's 'based on their life experiences' (and it was the main stream medical option..but I chose another route with my dr's and chiro's help, and after ALOT OF SUPPORT OF THIS BOARD I got through this horrible 9 weeks.

"It has been my personal experience", that I have been taught to 'think outside the box' by this board.

Respectivly, I submit my opinion.

Judy

jerseyangel Proficient
jerseyangel
Posted

Thanks for that, Judy :D

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