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Living Normally While Battling Celiac Is Like:

drowning in an ocean while

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59 replies to this topic

#16 Takala

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Posted 13 February 2013 - 08:20 PM

It was like swimming through molasses.

THEN I changed my diet.

But I still had really slow dial- up internet access for a while, slower than whale warp drive :lol: , until I changed carriers.
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#17 mushroom

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Posted 13 February 2013 - 08:31 PM

For me, it would be like trying to forget I didn't have any clothes on, on a nudist beach :P
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#18 JNBunnie1

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Posted 13 February 2013 - 09:00 PM

I worked as a dispatcher at a car auction, so I was in charge of the truck drivers who
went out and picked up the vehicles. Some days, things went great. Some days, it
rained or snowed or hailed or tornadoed or rained frogs or every SINGLE truck broke
down or eight people called out sick or...... So before I went gluten free, it was all those
days. Now, I only have raining-frog days every few months. Yay!
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If you're going through hell, keep going. ~Winston Churchill

#19 a1956chill

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Posted 14 February 2013 - 01:09 AM

Hmmm... I never saw the original post, so only responding to what's there now...

I at first thought this post was meant to be lightly humorous, in a dark humor kind of way, about the challenges many of us face. Like those "You know you're gluten intolerant WHEN...." threads.

Am I the only one who saw it that way? (scratches head)

This is also how I took the original post but I have a very dark sense of humor
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#20 1desperateladysaved

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Posted 14 February 2013 - 04:36 AM

Swimming through mollasses, HO HO HO!
On a nudist beach, oh yeah!
Foggy and froggy days, tehetehetehe.

That is the sort of things I was thinking of.

Thanks
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#21 IrishHeart

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Posted 14 February 2013 - 05:42 AM

I agreed that I could have been more clear about what I talked about. I saw that people would be brainwashed away from what I intended by the replies. I am sorry to make your responses look odd. I hope you will understand now what I meant to do and it might be a help to some. Now, I edited the first post also. If I hadn't, the real intent of the writing might have been lost. Then again Gatita found it.

This was inspired by a debate in another post. I avoided mentioning it to "Protect the innocent." Had I been willing to address it specifically it may well have been clearer, but less protective.

Thanks for helping me polish it up.


OKAY, NOW I get it .... Thanks for clarifying. :)And I have a dark sense of humor, too, believe me. I guess I was just confused by the original wording. and what you said was your intent (originally)........

Okay, then...

If you are trying to paint to someone that when first starting out on the road to recovery that it is like climbing uphill with weights strapped on your legs while rolling a giant boulder as a big buzzard pecks at your head, only to have it fall back down the hill every night and you start all over again the next day... heck, yeah, I get that part!!!!.

( and I hope you can see why I misinterpeted your original 3 posts as not being humorous, but rather as being a negative depiction of being a celiac in general-- because until you added things, it really did sound that way.)

Now, to me--it's just "the new normal". As sucky as it can be sometimes still, I'm good with it.
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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 

"Do or do not. There is no try. "-  Yoda.

"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 GF Lover

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Posted 14 February 2013 - 06:32 AM

Editing confuzzles me. Before celiac, after celiac, during the any crisis, it's still living day to day. Try not to forget that living part.

Colleen
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HAVE A SUPER SHINY DAY

 

LTES gem 2014

*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac

*Metastatic Melanoma, *Immunotherapy Mitigated Vitiligo, *General Insanity

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#23 Celiac Mindwarp

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Posted 14 February 2013 - 06:37 AM

I have described pre diagnosis and recovery as like the week that you have all your final papers or dissertation to to get in on time, so you stay up late, have too much caffeine and chocolate, maybe smell a bit, can hardly string a sentence together. Only it has been going on for weeks.

(I hope I have the gist of the thing here :))
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#24 IrishHeart

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Posted 14 February 2013 - 06:41 AM

Editing confuzzles me. Before celiac, after celiac, during the any crisis, it's still living day to day. Try not to forget that living part.

Colleen


Amen, sister! One joyous gift of a day after another.

(Not to derail the train here, but how's Florida? shoot me a PM when you can!! ).
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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 

"Do or do not. There is no try. "-  Yoda.

"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


#25 Razzle Dazzle Brazell

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Posted 14 February 2013 - 09:56 AM

I just want to say that people should be able to come on this forum and express how they are feeling and get support not abused. I think perhaps some of those who dont have more complex issues or who are much farther in recovery have forgotten what it felt like in the beginning. If anything, newbies should know it will be a struggle at first. If everyone else on here acted like it was easy they may feel estranged and may be further plunged into hopelessness. It can make us feel we want to give up in the begi ning at times but on the other hand things will change as we learn more and give our bodies time to heal and become balanced.


Without research and people on here, I would not beging to know how to live gluten free and also would not have discovered other problems I have. It guided me through discovering a corn sensitivity, discovering I reacted to anything mold contaminated or fermented and even the period of time I had developed a salicylate sensitivity. I am very thankful and I hope we can remember what this forum is for.
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Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.

#26 cavernio

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Posted 14 February 2013 - 10:11 AM

I'm not 'normal' if I can't eat anything but food I prepare. I don't know what plane of existence all you other people are on. It is becoming my normal, but that's not exactly the same thing.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#27 gatita

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Posted 14 February 2013 - 10:15 AM

I worked as a dispatcher at a car auction, so I was in charge of the truck drivers who
went out and picked up the vehicles. Some days, things went great. Some days, it
rained or snowed or hailed or tornadoed or rained frogs or every SINGLE truck broke
down or eight people called out sick or...... So before I went gluten free, it was all those
days. Now, I only have raining-frog days every few months. Yay!


Raining frog days... LMAO!!!!! Not going to forget that image...
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Diagnosed with wheat hates me 4/13


#28 Takala

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Posted 14 February 2013 - 10:32 AM

It's a trade off. If I live just like a person in the 1800's, only with a kitchen out of the 1970's, I can have a life that can pass for somewhat normal circa 2013, other than... right now the lifestyle online magazines are taking cues from various lobbyists that they should portray my peer group as having a form of obsessive compulsive disorder regarding food prep. THIS from the same people eating crap junk for all their meals, while I am eating healthier whole foods, displaying great self- control, and have performed thousands of repetitions of physical therapy and other exercise so I don't have to whack them with a cane or run them over with a some sort of mobility scooter. Hence when Psychology Today has writers critiquing the upcoming American Psychiatric Association Diagnostic Standards revision, which includes how 'shrinks are going to look at unresolved "IBS" as a possible psychosomatic illness, (aka "it's all in your head") y'all had better start paying attention.

They aren't going to stop. They feel threatened by people who can, somewhat, control their physical destiny, without massive doses of a regulated substance dispensed in little pills.
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#29 Celiac Mindwarp

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Posted 14 February 2013 - 10:50 AM

I would say my life isn't normal at the moment.

I am optimistic by nature. But I have been thoroughly tested by this illness.

I keep smiling, and it helps to see those further along who are recovering. I am tremendously grateful for that.

I would agree we need to be able to share the hard stuff too.

Humor helps enormously, dark and otherwise.

I don't feel very articulate. I kinda understand the different points of view. But I hope people still feel able to share whatever is going on, good or bad. It seems the most important thing.

Please don't shout at me for saying so :)
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#30 IrishHeart

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Posted 14 February 2013 - 10:51 AM

I just want to say that people should be able to come on this forum and express how they are feeling and get support not abused. I think perhaps some of those who dont have more complex issues or who are much farther in recovery have forgotten what it felt like in the beginning.


The majority of us answering here have not had an easy recovery at all.
I lived in hell for 5 years. 3 prior and 2 after DX. I'm still working on it.
And it is because of that --that we remain here, helping on a daily basis, writing threads for the newbies, etc.
Some of us just do not think that being a celiac makes us "abnormal".
It just makes it "the new normal".
No one forgets.
If we forgot, we would not still be here helping. :)
The ones who have an easier time of it, heal and are long gone from the Forum, hon.


I think you are misinterpreting what transpired here and Diana has clarified things and she understands how her original posts (3 of them--most of which no one can see because they are gone--they were edited out by her) may have sounded very negative and confusing to readers. She sees it and is okay with it and so, we have moved on.

It's all good.
No need to feel anyone is being abused. This is a loving community.
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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 

"Do or do not. There is no try. "-  Yoda.

"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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