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Am I Just A Wuss? (Staying Home After Gluten/soy/whateverings)


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#46 Pegleg84

 
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Posted 07 March 2013 - 11:22 AM

HI Kareng,

Oh, quite understood. I think the original facts (or lack of facts) got lost along the way in this thread.

 

I've been gluten-free for 4 years (as of this week!), and dairy and soy free for about 1. Recently I have done a lot of "tighening up", and am quite strict with my diet aside from the occasional meal out. Mostly whole foods, entirely gluten-free kitchen, etc etc. My diet really isn't the issue here. I'm well aware of my decisions. Actually, now that I've figured out that there likely isn't some other intolerance i'm not aware of at the moment, I know that as long as I stay gluten-free/CF/SF, I'm more or less fine.Compared to people on extremely limited diets, that's pretty good! I'm gettng better at the whole thing.

 

I'm also the kind of person who tends to stay home when i have the sniffles rather than wait until it turns into a full-blown cold so I don't infect anyone, or if I'm jet-lagged and exhausted or what have you will stay put. My work is very mentally demanding, so no brain-energy, no point.


  • 0

~ 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.


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#47 kittty

 
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Posted 07 March 2013 - 11:44 AM

If someone got so drunk that they had to call into work once or twice a month for a hang-over, wouldn't you tell them to figure out how to stop that?

 

I hardly think that getting drunk can be equated to accidental glutening. No one chooses to be glutened.

 

A lot of this has to do with lifestyle, and again no one can judge someone else from the point of view of their own lifestyle. People who live in the country miles away from the nearest town are less likely to be run over by a bus than someone living in the city. It's the same with celiac disease. Some people can stay home, cook each meal from scratch, and be 100% in charge of their lives. Other people have spouses and kids who aren't as careful with gluten around the house and jobs that require frequent lunch meetings. Every person has challenges, but each person has different challenges. It isn't about making excuses, not being responsible, lacking intelligence, or being a wuss.


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#48 kareng

 
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Posted 07 March 2013 - 11:49 AM

I hardly think that getting drunk can be equated to accidental glutening. No one chooses to be glutened.
 
A lot of this has to do with lifestyle, and again no one can judge someone else from the point of view of their own lifestyle. People who live in the country miles away from the nearest town are less likely to be run over by a bus than someone living in the city. It's the same with celiac disease. Some people can stay home, cook each meal from scratch, and be 100% in charge of their lives. Other people have spouses and kids who aren't as careful with gluten around the house and jobs that require frequent lunch meetings. Every person has challenges, but each person has different challenges. It isn't about making excuses, not being responsible, lacking intelligence, or being a wuss.


But if you are getting hit by the bus once or twice a month and its effecting your life, maybe you should do something different. Sure, it's easier to cross in the middle of the street, but you might have to " suck it up" and walk to the light on the corner.
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#49 IrishHeart

 
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Posted 07 March 2013 - 11:53 AM

Gemini - I tried to write a long and detailed response to your post, but it's not worth it. I've come to the conclusion that you have zero compassion or common sense, and that probably won't change no matter what anyone says.

 

I have to step in and say something about your comment.

 

You could not possibly be more wrong in your assessment of Gemini.

Common sense is her strongest asset. She is, in fact, the first person who reached out to me when I first came on this site and she has more compassion in her little finger than most people I know.  She is very celiac-savvy and knows more about autoimmune diseases than most people, offered me her personal help when I was struggling (because I too had a soy, dairy and about 10 other foods intolerance going on) and I have even met her in person. She is a down-to-earth, funny woman.

 

What she isn't --is a "coddler".

 

Just because she tells it like it is---does not mean she is "abusive" in any way and I do not see any violation of the rules.

 

Her approach may be  different from mine, perhaps, but she is always willing to help.

I for one, appreciate her "veteran" knowledge.

 

The OP, Peg, seems to see the value in her posts (as her comments indicate)

 

And  Peg, I know this is late (sorry, I am traveling and had to find a wifi spot) so I would like to add my 2 cents.

 

Avoiding soy is difficult, but it can be done. I have done it for 3 years. The places most likely to find hidden soy is the same as gluten--in processed foods.

Unfortunately, many restaurants use soybean oil to cook. I find I can tolerate that now.

Give yourself some time and that soy intolerance may be overcome!.

 

Eating out is always a crap-shoot for us. I do my homework and trust places that other celiacs say is safe.

And to answer your original question, I do not think anyone is a "wuss" if they are very sick and have to stay home. But in all honesty, you

cannot keep eating out and risking hits and risking your job security. Long before I knew that celiac was killing me, I missed so many days,

I had to resign my teaching post. It gave me great sadness to give up the tenured professorship I had worked my entire life to attain,

but I felt it was unfair to the students and my colleagues.

I would give anything to have known what was causing that madness and frankly, I would not risk eating out

right now if my job depended on me being healthy. IMHO


  • 0

"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


#50 IrishHeart

 
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Posted 07 March 2013 - 11:57 AM

But if you are getting hit by the bus once or twice a month and its effecting your life, maybe you should do something different. Sure, it's easier to cross in the middle of the street, but you might have to " suck it up" and walk to the light on the corner.

 

What a kick-ass analogy!!  :) well said.


  • 0

"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


#51 Pegleg84

 
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Posted 07 March 2013 - 01:11 PM

You can still get hit by a bus at the crosswalk, but then at least you can sue... (I'm also the kind of person who says, NO! I am not j-walking, I don't care if it takes longer to walk down to the lights. But then again all my close encounters with moving vehicles have happened while crossing in the proper places, so...)

 

Thanks for some perspective, Irish Heart. Yep, soy is a hard one, and I'm learning just how pervasive it is. I guess some people can handle soy oil and some can't (right now I think I'm in the can't category).

 

I might have been slightly exaggerating (or it got exaggerated) when I said "on average once a month". I was acutally just looking through my attendance records, and yes, it's been 1 day off on average, but some of those were when I was actually sick, or jetlagged, or other non-stomach related things. My job is not under threat in any way. It's more likely that if I'm not feeling well I'll just cancel any evening plans instead. I started this thread in the first place moreso because I felt bad that I had to cancel plans with a friend of mine I don't see often, and wondering if I was just being a "wuss" about the whole thing. 

 

But yes, if being sick due to glutenings is interfering with your work, or your ability to work, then you should seriously look at your lifestyle and do what ever you are able to to get better. I went though this soul-searching over the past year and have definitely made changes. I used to eat out for lunch at least once a week, and if I didn't have time to go home before an evening event, would get vietamese or something beforehand. I didn't always get glutened, but it took it's toll.

 

Now, I bring not only all my lunches but eat dinner at work if I know I'm going out to something, insist on making meals at home on the weekend unless I've vetted the restaurant beforehand, and won't eat out two days in a row or more than once in a week. The taco incident was a slip-up (I forgot to bring my dinner) but seemed pretty safe (and I probably just reacted to soy in either the oil or a sauce), and the cookies were sheer curiosity (and probably a stupid idea)

 

So, I'd call that an improvement. Still a ways to go, but much better.


  • 0

~ 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.


#52 CaliSparrow

 
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Posted 07 March 2013 - 02:18 PM

Here's information that may help the person who posed the initial question:

http://www.celiac.co...ease/Page1.html

Also, important new information about trace gluten coming out now in studies (in case anyone else coming to this thread is looking for help with ongoing symptoms):

http://celiacdisease...mptoms.htm?nl=1
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Last glutening: 12/28/13 (long time FOR ME!)
April 2014: no more reintroducing foods, not rocking the boat, no studying (except during insomnia)
March 2014: Reintroducing intolerant foods. Yolks & banana are a "no". Dairy NO
Year 2: Mental clarity improving. Hello to normalcy.
October 2013: Functional Medicine doc ref to cardiologist for possible sick sinus syndrome (deadline May)
September 2013: 55+ food intolerances, mercury poisoning, sIgA 50, leaky gut, adrenal fatigue, hormone disruption, ferritin 7, low Vit D, low Vit B6
January2013: Dairy-Free, Soy-free
November 2012: Gluten-Free
Year 1: Migraines resolved, OCD diminished, Change in skin texture, EyeBrows lifting & eyes bigger, Better memory, Better cognitive function, Better problem-solving capabilities, Lower anxiety level, Better outlook, Arrhythmia reduced, hope

#53 gatita

 
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Posted 07 March 2013 - 11:55 PM

Wow... so, back to the original question. I'm only 8  months into this, but I have been off work at least a few days a month as well. I seem to have no resistance at all now to whatever bug's going around -- besides my stomach issues.

 

Wuss? I don't think so. I don't even eat out anymore but dang it, something keeps making me sick. So I feel for you.


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Diagnosed with wheat hates me 4/13


#54 IrishHeart

 
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Posted 08 March 2013 - 07:06 AM

I do not think Peg needs to start worrying about refractory sprue. Feeling crappy once and a while does not mean dire circumstances.

It may mean she is just still healing.

 

Peg, correct me if I am wrong, but didn't you just do a gluten challenge not too long ago? (I feel like it was you we were cheerleading through

a challenge about 4 months ago) If that's the case, you most definitely may still be healing.

 

I never tell this to newbies, but the truth is, it took me 15 months before I felt like I was turning a corner. I was left unDXed for so long and had so many complications, I had to be patient for a very long time. Gemini, Karen, mushroom, ravenwoodglass and so many others just told me be patient, it will come. Gotta Ski is my healing buddy--as she has had setbacks herself ---but perseveres every single day. I told myself "every day is a healing day" and even though I did not like the slow recovery, it has happened and I have my life back.Am I 100%--no, but I am not dying either and I have done more physically this past week than I could for 5 years.

 

I went from being unable to dress myself or walk the length of my driveway without gasping for breath, my muscles so impaired I was told to get a scooter---to swimming with dolphins this week here in Florida.  :) It's 27 months post DX for me.

 

Never say die, do not give up and keep your eyes on the prize--healing your body. Hang in there.

 

Sorry if there are any typos. I am sitting outside a starbucks and the sun is blinding me and the screen. 


  • 0

"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


#55 gatita

 
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Posted 08 March 2013 - 07:35 AM

I went from being unable to dress myself or walk the length of my driveway without gasping for breath, my muscles so impaired I was told to get a scooter---to swimming with dolphins this week here in Florida.  :) It's 27 months post DX for me.

 

THIS is so inspiring!!


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Diagnosed with wheat hates me 4/13


#56 CaliSparrow

 
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Posted 08 March 2013 - 07:48 AM

IrishHeart, why wouldn't you tell a newbie how long it took? I was just about to pose that question to folks. Although I'm amazed at how different life is without gluten for the first time, I still wake up wondering if I'll ever move beyond this place - thrilled the mind is functioning but the body still fatigued & wonky.

What constitutes a newbie? I'm past the terror of eating the wrong thing (no longer limiting myself to hummus & carrots) & the weekly/bi-monthly hits but body still aches w/fatigue. I have also eliminated dairy & soy (FYI).

That second link I posted has to do with new studies showing the gluten-free foods aren't gluten-free enough for some with Celiac. So although someone may believe they are not consuming gluten, they may still feel crummy due to the consumption of gluten-free products that are merely gluten-free enough to put a gluten-free label on it. It's a growing concern among people in the community.
  • 0
Last glutening: 12/28/13 (long time FOR ME!)
April 2014: no more reintroducing foods, not rocking the boat, no studying (except during insomnia)
March 2014: Reintroducing intolerant foods. Yolks & banana are a "no". Dairy NO
Year 2: Mental clarity improving. Hello to normalcy.
October 2013: Functional Medicine doc ref to cardiologist for possible sick sinus syndrome (deadline May)
September 2013: 55+ food intolerances, mercury poisoning, sIgA 50, leaky gut, adrenal fatigue, hormone disruption, ferritin 7, low Vit D, low Vit B6
January2013: Dairy-Free, Soy-free
November 2012: Gluten-Free
Year 1: Migraines resolved, OCD diminished, Change in skin texture, EyeBrows lifting & eyes bigger, Better memory, Better cognitive function, Better problem-solving capabilities, Lower anxiety level, Better outlook, Arrhythmia reduced, hope

#57 CaliSparrow

 
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Posted 08 March 2013 - 07:50 AM

p.s. I look forward to months 15 to 27!
  • 0
Last glutening: 12/28/13 (long time FOR ME!)
April 2014: no more reintroducing foods, not rocking the boat, no studying (except during insomnia)
March 2014: Reintroducing intolerant foods. Yolks & banana are a "no". Dairy NO
Year 2: Mental clarity improving. Hello to normalcy.
October 2013: Functional Medicine doc ref to cardiologist for possible sick sinus syndrome (deadline May)
September 2013: 55+ food intolerances, mercury poisoning, sIgA 50, leaky gut, adrenal fatigue, hormone disruption, ferritin 7, low Vit D, low Vit B6
January2013: Dairy-Free, Soy-free
November 2012: Gluten-Free
Year 1: Migraines resolved, OCD diminished, Change in skin texture, EyeBrows lifting & eyes bigger, Better memory, Better cognitive function, Better problem-solving capabilities, Lower anxiety level, Better outlook, Arrhythmia reduced, hope

#58 julissa

 
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Posted 08 March 2013 - 08:42 AM

Gemini, I just want to say your posts have helped me since I arrived here last year. they made me realize I am driving the bus of my health, and if I want to feel better I have to figure out what was making me sick. no one else could do that for me or help. thankfully, I am doing great now, and rarely have to cancel plans or become fearful to make them.

 

I teach yoga and pilates, and just before I figured all this out I was going to give up all my classes. can you imagine feeling dizzy, nauseous and overall fogged then inverting in front of a crowded gym? was not a pretty picture. thankfully I didn't give up my classes and am doing great!

 

so thanks to you and all the truth tellers on this board. you literally saved my life.


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#59 adelajoy

 
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Posted 08 March 2013 - 09:45 AM

Well... I feel like this is almost off-topic now, but I'm gonna go back to original topic, if that's okay with everybody here.

 

I'm gluten-free for two weeks today. So super newbie. Thankfully, I have a really chill job where I text my boss at 8am if I'm not feeling good enough to come in. He doesn't care if I'm there or not, my work does not effect anyone else directly. The only thing that changes if I show up or not is how soon a massive (never going to be done) project gets done, and how big my paycheck is.

 

Pre-diagnosis, I hated calling in sick. I hated myself. I had no idea why I felt so bloody awful, and no one around me was ever sick either. I felt guilty and like a wuss. I told myself I was making it all up. For months, I was missing about one day every week or two. The last two months, it got way worse. I missed five days in a row in January. I hated myself.

 

Finally, I got my diagnosis and had an answer. I told my boss what was up, and even though he was really understanding before, he's even more so now. I can go home early if I suddenly don't feel good anymore, he sometimes catches me just blankly staring at my screen, and tells me to go home; he's just really awesome. I miss mornings more often, and when I wander in at 1pm, my co-workers will tease and say, "Good morning!" but they don't care either. Two of them think I only work parttime anyways, and the others either don't notice that I wasn't there, or don't care I'm not.

 

So I guess I'm really lucky, job-wise, because I can just be a wuss and miss time, and not risk anything. Well, maybe a reccomendation when this temp job is over, but I'll deal with that in a few months.

 

I still feel like a bit of a wuss calling in sick or missing work, but I know there's a reason for it, and it will be a slow recovery. I'm actually more worried about May, when this job ends. I'm crossing my fingers that almost three months will be enough recovery to function at a normal job that isn't as chill.


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#60 Pegleg84

 
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Posted 08 March 2013 - 10:12 AM

Adela, welcome to the forum!

Trust me, it'll get better. At least now you know, a: why you've felt so cruddy and b: that you'll slowly but steadily get better and better.

 

GottaSki, yeah, I definitely don't think I have anything serious going on. Nothing aside from the occasional eating-out cc incident, and VERY occasional eating of cc'd products. Gluten-wise, that almost never happens anymore because I read labels a million times. Milk and soy cc still happen though, but I'm getting more diligent there too.

I have NEVER, nor will I ever, do a gluten challenge (official diagnosis be damned!). If you think me missing a day every month or so is bad, I don't even want to think of how horrible I'd get if I had to eat gluten again. Never ever ever ever.

I was probably challenging myself to eat as cleanly as possible in attempt to root out the last vestiges of milk and soy and see if i felt better without it (and to make sure there wasn't another intolerance I hadn't noticed).

I think it took me about a year to feel back to normal just gluten-free, and did really well for another year or so, until the milk problem popped up, then the soy problem, so it's up and down. I'm lucky in that I caught my disease quite early so didn't develop as many symptoms as some, and likely healed faster than some too. Also, when I get glutened my reactions are nothing compared to what some celiacs go through.


  • 0

~ 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.





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