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Living Normally While Battling Celiac Is Like:

drowning in an ocean while

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#31 kareng

 
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Posted 14 February 2013 - 10:53 AM

Before she added/ edited, it sounded like she was saying it is impossible to live with Celiac at all. Just as it isn't possible to plug your computer into a whale. By asking everyone for analogies of how impossible it is to be a Celiac, I felt that was very negative and perhaps a sign of depression. She has tried to explain that that is not the case, so ....great.

How we live " normally" is different for everyone. I felt it would be discouraging for every newly diagnosed Celiac to read a bunch of us posting that it is not possible to live a good life or to ever feel good. The majority of Celiacs, living their lives , hopefully happily and " normally", aren't on a help forum.
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#32 jordan shulak

 
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Posted 14 February 2013 - 11:34 AM

I tried to live normally, for 30 years even though my body fought a horrendous war on gluten. I had been told to ignore my symptoms and live like they are not there. I had been told that my problems were all in my head. The Md lightlysaid to give up gluten, as if it were as easy as giving up excercise for lent.

I am thinking that Living normally while battling celiac is like: (Well perhaps I haven't tried all of these)

Drowning in a stormy ocean while ignoring the waves.

Picking up 100 lb weight and running a marathon.

Racing the 100 yard dash on an uncasted-broken leg.

Plugging in your computer in the belly of a fish. (I don't think Jonah did.)
.
If my mind is a little muddled, or the imagination a little too sharp what do you think you can blame?

Note, I have edited this to make it clear. Regretfully, the replies that helped me to know how to change it, may be confusing to future readers. I will take full credit for this, so please do receive them gracefully.


I like your post! CeliacAwareness! Posted to my FB page and told all my family/friends to read if they wanted to know what living with Celiac feels like. You have no idea until you are directly affected! Thank you!
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#33 love2travel

 
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Posted 14 February 2013 - 11:55 AM

Initially my diagnosis shocked and stunned me. I was really thrown for a loop as I was not expecting it. In time, however, it became my new normal which is pretty normal to me. I'm a fabulous cook and have no trouble with that end of things. I am eating better than ever before and have chosen to learn from this. I've learned about tons of kinds of flours I had not baked with before which is fun. Same with interesting grains, etc. The thing that bothers me on a daily basis is this crazy back/body pain that just does not ever give up. Much of it is from an accident five years ago (herniated discs, blah blah blah) but I'm guessing part of it is due to celiac. Am working on it! It is normal for me to lie down on the floor when we have company, it is normal for me to lie down in the vehicle when traveling (obviously not driving! :P ), it is normal for me to take my lumbar support to church, eating at restaurants (which I rarely do)... It is very hard to take but I make the most of my days. When I must lie down all day, I turn to my stacks of books and my fun game apps. The days I can get around I cook like mad. Distractions and doing things I love help tremendously.

So, "normal" is highly individual. I do not see myself as abnormal at all. Well, except personality wise, but that is different. ^_^

I am thankful I have legs to walk. I am thankful I have eyes to see. I am thankful I have a husband who adores me. I could go on and on. Counting my blessings really helps put things into perspective. My friend's best friend recently lost her husband and ALL her children in a car accident. Gone in an instant. Suddenly she is childless and a widow and in her late 30's. Now that is horrific.

We all have our good days and our not so good days. Attitude goes a very long way in determining how we see our days. I did not used to believe that but now I am speaking from a lot of experience and have found it to be true. :) In the midst of pain there is always a teeny weeny ray of sunshine in there somewhere we can cling to. We may have to dig for it like crazy but that little ray of hope is always there.
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#34 Gemini

 
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Posted 14 February 2013 - 12:05 PM

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.


WOW! You sound so angry. Why is it not normal to just eat what you prepare? You think the pioneers crossing the US in covered wagons ponied on up to the Taco Bell drive thru? Not only did they prepare ALL of their own food, they had to kill it or grow it first.

I am in a very normal plane of existence. I nearly died from this disease 8 years ago but once I found out why that nearly happened, it was all "up" for me. I was elated to have a diagnosis and I guess I am the only Celiac on this planet to really not mind this one bit. I am healthier now than most people in my age group and I don't go around complaining all the time about joint pain and thinking it's all because of age. I have no joint pain, no muscle pain or any other pain. I have been amazed at learning how much food influences this and feel very sorry for those who believe what the AMA tells them......"You have arthritis and it's because you are 55 and getting old. Accept it and take these pills."

It wasn't easy for me either and took 3 years to heal but I am so good now, it's scary. I run rings around people half my age. If I can do this, anyone can. I have a hard time believing anyone would miss the crap that everyone else eats! This is why so many are sick today.....why would anyone want to go back to that? I also have 3 other serious AI issues but do not give them much thought. They have improved by huge leaps and bounds after being gluten-free for awhile so I am eternally grateful that I have been given a second chance.

My co-worker has ITP and has to do infusions every once in a while when his platelets get too low and he has my same attitude. The infusions are done at the cancer center and he sits right next to people getting chemo. Spend 1 hour there, says he, and you will be grateful all you have is an AI disease. It's all about perspective.

To the newbies......it may be hard for awhile but recovering from an illness is hard. It's temporary for the vast majority of Celiacs out there. Do not give in or up! It also helps to be focused on work or a hobby or something else so you don't become overly focused on what you can't eat or the changes that are taking place that will become normal after some time. You won't always have a positive day but neither does anyone else in life.
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#35 1desperateladysaved

 
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Posted 14 February 2013 - 12:25 PM

I am still trying to unbrainwash you. These situations occur before gluten free days! Before diagnosis, and perhaps at the beginning of gluten free life. I am not dooming you to a horrible life after you are healing.



In this post, I was looking back at 30 years of symptoms and how it was to live through them. See my newest post for what it is like when you finally begin to heal!

I agree with much of what is being said, but I still want to talk about what I meant. Could we just start over from my now edited 1st post in this thread?
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#36 bartfull

 
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Posted 14 February 2013 - 12:58 PM

Living normally while first battling celiac is like learning to ride a bicycle. You fall off a lot, steer into obsticles, and sometimes feel like you'll never "get it". Then one day you go for a long smooth ride and realize that you finally DID get it, and from then on, life is better than ever.
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#37 Celiac Mindwarp

 
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Posted 14 February 2013 - 01:18 PM

IH and Karen, thanks for the explanations :)
I think I will chalk this one up to (somewhat confusing) experience :)
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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

#38 a1956chill

 
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Posted 14 February 2013 - 01:54 PM

Some times those of us that have "been around the block" a few times can get caught in a dilemma as to how much or little to say. Say too much I may terrify a newbie , say too little I may not share information/an experience that may be helpful. Most of time I tend to error on the side of caution and say little. most times .


Living with celiac disease and its complications is Pure Hell. I live and deal with it because there is no other option. I am a survivor. I will be D#&@#D if celiac disease is going to prevent me from having the life I deserve and want . I live with it and deal with it and relish every healthy moment that I painstakingly earn .
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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


#39 IrishHeart

 
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Posted 14 February 2013 - 03:21 PM

Chill, I agree entirely with your thoughts.
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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


#40 Pegleg84

 
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Posted 15 February 2013 - 10:02 AM

There's really no such thing as "normal" in my mind, but there's feeling good and in control, and that was definitely not the situation when I first went gluten-free.
Before going on the diet, it was like drowning in a really stagnant pond, occasionally getting to come up for air. After going gluten-free, it was like I could swim again. It;s still tough, takes concentration, new obstacles pop up (dairy, then soy, then...) but you get used to it and grateful that you feel better! Things aren't perfect, and you might not be considered "normal", but it's 10 times better than before, and that's all we can ask.
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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#41 Vinturi

 
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Posted 15 February 2013 - 10:59 AM

I am newly diagnosed and completely disagree. I felt really defeated those first few weeks but now I feel great! I refuse to let the things I cannot eat run my life. Hang in there, OP.
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#42 designerstubble

 
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Posted 19 February 2013 - 01:23 AM

Hmmmm. I guess it's all down to perception when we read other people's experiences on here? I think it's hard to post sometimes. I think things get lost in translation often, it's so much easier to see someone's face when chatting! We'd all be great if we were having 'coffee' morning at someone's house!

As for battling celiac, I currently have so many issues with other food that being just gluten free would be 'easy' for me! ( I am not being dismissive of how hard gluten free is, just that since I have had so many other complications with other foods also). I'd be 'shaking my booty' in joy if it was just gluten I had to avoid!!
However...
I may look bad (seemed to have put on lots of weight from eating nothing??) but I feel good!
And every time someone around me tucks into a yummy delicious gluteny something, I whimper sadly for a second... Then think, 'hell, I don't want to put that crap into my body now anyway?'...
Uphill struggle? All the way. Dark days? Lots. Biggest lesson learnt? Positivity will get you further.
Hugs to all from a still struggling 'trying to get it right' Celiac...
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Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#43 a1956chill

 
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Posted 19 February 2013 - 02:00 AM

Hmmmm. I guess it's all down to perception when we read other people's experiences on here? I think it's hard to post sometimes. I think things get lost in translation often, it's so much easier to see someone's face when chatting! We'd all be great if we were having 'coffee' morning at someone's house!

As for battling celiac, I currently have so many issues with other food that being just gluten free would be 'easy' for me! ( I am not being dismissive of how hard gluten free is, just that since I have had so many other complications with other foods also). I'd be 'shaking my booty' in joy if it was just gluten I had to avoid!!
However...
I may look bad (seemed to have put on lots of weight from eating nothing??) but I feel good!
And every time someone around me tucks into a yummy delicious gluteny something, I whimper sadly for a second... Then think, 'hell, I don't want to put that crap into my body now anyway?'...
Uphill struggle? All the way. Dark days? Lots. Biggest lesson learnt? Positivity will get you further.
Hugs to all from a still struggling 'trying to get it right' Celiac...

 

 

Yeap those complications of celiacs will get ya.

 

As you said ( no disrespect to those who are just gluten free) for some of us being just  gluten free would ( at this point in my journey )  be a 'walk in the park'


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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


#44 Luv2teach

 
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Posted 19 February 2013 - 04:07 PM

I don't feel like I am living a normal life! I am newly diagnosed (one month) but completely agree with those analogies. It's not "normal" that I can't go out to eat with my friends and family anywhere they want, it's not "normal" that I have to scrutinize everything I put in my body for deaf of getting sick, it's not "normal" that I have to cook three meals for my family because I am the only celiac and dont want to make them suffer this shitty food just because I had to and I have a baby that HAS to be exposed to gluten, and on that note, it's not normal that I can't kiss my baby"s hand he reaches out to me because it has cheerio dust covering it and he doesn't understand why.... I used to give his hands kisses while he was eating. No, I'm sorry, but I don't feel normal at all!!!
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#45 designerstubble

 
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Posted 19 February 2013 - 04:13 PM

Living normally while first battling celiac is like learning to ride a bicycle. You fall off a lot, steer into obsticles, and sometimes feel like you'll never "get it". Then one day you go for a long smooth ride and realize that you finally DID get it, and from then on, life is better than ever.


Hehehe that sounds a lot like me. I'm still falling off all the time. Haven't even gone far enough to bump into obstacles I reckon let alone a nice smooth ride. Looking forward to that one... nice lovely smooth ride and a sunny day. Awesome.
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Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)





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