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


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#1 Pegleg84

 
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Posted 01 March 2013 - 06:40 PM

Hi guys

 

So, I either soyed and/or glutened myself the other day, while being daring and trying the new burrito place in my work-hood. Just opened last week, lovely menu, and very celiac friendly, actually. no gluten-free menu but they use mostly corn tortillas and have dedicates (so far) half the grill to corn only. Things aren't automatically smothered in cheese. Perfect! and man was it tasty.

 

On a hey, I'm still ok, high the next day, I also tried out the gluten-free dough at the new cafe that does made-to-order cookies. I'd been in a couple weeks ago to ask about other ingredients (no soy or dairy, according to the staff), and everything was very well separated, clean, etc, so I didn't see too much of a cc risk. Walnuts and raisins (didn't touch the chocolate chips due to soy), pretty tasty, approved.

 

Until I hit a wall that night, and the next morning could hardly get out of bed, then spent more than enough time on the can (constapated diherrea, my favourite), decided there was no way my brain was going to fuction that day, called in sick, slept most of the day. Today I made it to work but am still nauseous and tired.

I probably got soyed rather than glutened, which means that my soy intolerance is probably getting worse, and that I really should not be eating out anywhere ever, but that I already knew.

 

My question is how often you end up calling in sick to work, or cancelling plans with friends, etc? And how bad do you have to be before you will?

 

On average once a month I end up staying home with stomach issues. It's usually nothing too horrible, not even like a cold or flu, but I get so brainfoggy that working would be pointless (I'd just sit at my desk like a zombie anyway). Thankfully my boss is very understanding of my situation, and I just do my best to catch up the next day. Though I do wonder sometimes what my
coworkers think. I don't look sick. I don't have a cold. I'm not throwing up. "Stomach issues" just doesn't sound that bad. (*knock on wood* i've been lucky enough not to catch the evil plague flu going around our office this winter)

 

I also find myself cancelling plans, or just not making them, because either I feel like crap or am afraid of getting into something I shouldn't. I might not be "sick" but am still not in a state to do much. I worry that I could be alienating some of my friends, making them feel that I'm avoiding them, cancelling things at the last minute because I'm not feeling well, or becoming the girl who wont shut up about her food issues.

 

Anyway, I'm kind of starting to feel like I'm a wuss and should suck it up and get through the day, nausea and brainfog and all. thankfully, no one's told me this directly, but you get an attitude after a while of "oh, you're not actually sick, so this is just an excuse." which is isn't, right? (I also worry about that sometimes too...)

 

Ok, sorry. Bit of a vent, but I would like to get some perspective, other experiences, advice, etc.

 

Now back to my friday night on the couch with my stupid gut...


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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.


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#2 Takala

 
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Posted 01 March 2013 - 09:51 PM

"Made to order cookies?" - if that was a regular bakery also making alleged gluten free items, you could not pay me enough to try anything in there.  :wacko:   Even so, I had to pretty much stop eating regular, good dedicated gluten free bakery fresh items because they were still hitting me with cross contamination from something, likely from flours made in the same facility as gluten free oats, or from the soy they used in some items, or the millet, or from some of the other ingredients not really being 20ppm or under.  I just can't do flax, either.   :ph34r:  C'est la vie.  I can still eat something from a commercial gluten free pre made company sometimes, such as a pizza crust in a restaurant, or something frozen from some place like Kinnickinnick, but I have to be careful about what brand, the ingredients, and not do it very often. Otherwise, I just make my own baked stuff.  It's just not worth the hassle of getting sick. 

 

The burrito place-  live and learn.  Probably fine for the less sensitive gluten intolerant, not workable in present form for the very sensitive. Unless you contacted the corn tortilla maker, you have no idea.  Corn flours have been giving me fits from mild cross contamination.  Again, we have no labeling standards....  and the ones we "might" get someday are not going to be very good because the "experts" are going on data from a decade ago and saying 20ppm is fine and they might give us international Codex rules, which allow wheat starch. :angry: .  

 

Rule of new things:  only one at a time.  And preferably not the day before you have to do something. 

 

Rule of brain fog:   Unlike kidneys and lungs, you only have one brain, and if you fogged it, you damaged it with an antibody attack, and you don't have a spare. So try to keep it clean and tidy in there.

 

Rule of coworkers:  they don't have to know what your reasons are for being sick.  I can think of plenty of hairy ridiculous things that people do to get off of work, including hangovers from partying the night before, whereby they voluntarily killed off a bunch of their brain cells, too..  And then there is flu/stomach virus season, where you go in public (or the workplace) and see the most ridiculous, nasty, germ spreading behaviors....  no wonder half the country seemed to be waylaid by this.   I am really not missing eating out a lot.  :rolleyes:  :blink:


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#3 GottaSki

 
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Posted 01 March 2013 - 10:05 PM

NO - you are not a wuss.

 

This disease sucks!

 

Vent at will - any time :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 Pegleg84

 
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Posted 02 March 2013 - 08:00 AM

thanks guys

 

I'm getting more concerned about the soy, to be honest. Which means I really have to stand back and reassess things. I was supposed to go stay with a friend this weekend and cancelled because I was feeling like crud and don't want to end up consuming something that causes me more crud, and not up to organizing food for a night away from home right now. This while whenever I'm under the weather, friends will (half-jokingly) say "stop eating gluten!" They just don't understand that i'm not! that even the tiniest amount can get you, and now I can get "soyed" by freaking vegetable oil or something. Aaaargh!

 

Actually, my coworkers are pretty great. I'm just having a bit of a crisis moment I guess.

 

But seriously, what's your personal threshold of crappiness to say screw it and stay home?


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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.


#5 GottaSki

 
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Posted 02 March 2013 - 10:32 AM

For me it was brain fog and all around grumps during my 30s....in my 40s muscles wouldn't work more than a few hours a day so that kinda cut into my social life.  I'm making up for it now..have scheduled many walking dates with all my lost friends :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#6 bartfull

 
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Posted 02 March 2013 - 12:24 PM

It sure makes me feel better to hear someone else say these things. If you're a wuss, I am wussier. If I am not feeling my best, I don't go out. I have cancelled LOTS and LOTS of things because I don't feel good. When it comes to the POTENTIAL for a good time or my nice comfortable bed, the bed is going to win every time. How sick do I have to feel? Sick enough to hear the bed calling me.


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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!

 


#7 notme!

 
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Posted 02 March 2013 - 01:14 PM

no more bakeries for me if they make 'regular' wheat flour stuff.  just learned that lesson the hard way.  i pretty much cancel everything when i get glutened.  if people don't understand (and it is less frequent the longer i am at this because i'm better at it progressively) that's too bad.  plus, i tend to get so irritable that social functions would just lose me the rest of my friends lol. 

 

wuss?  i am too scared to even *get* a job.  and we could use the $$.........


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#8 Celiac Mindwarp

 
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Posted 02 March 2013 - 01:31 PM

I end up in bed for a day or two, then early nights for about a week. In between glutening, I am doing way better. I have started doing some voluntary work to 'test' whether and how I can get back to work. It is helping my confidence to find out what I can do. Baby steps though.

It is a hard balance. I try to rest when I need to, and make an effort to be sociable when I can. I would go nuts without some human contact. It has taken me a while to get back to being sociable though.
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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

#9 Gemini

 
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Posted 03 March 2013 - 06:48 PM

I make it a rule never to call in sick unless I am up all night in the john, with the Big D and vomiting. Then, I'll stay home but that only happens about once every 2-3 years.  I am uber careful and don't eat out much.  Most all my food I make myself. 

 

I think if you are getting sick once a month, you might need to tighten up your diet and not eat out as much.  You have more than one intolerance so I often wonder how hard that must be?  I can do dairy lite so if it's a smaller hit, not a problem. I think there is more soy in stuff than gluten so it sounds like you might get sick very often trying to eat out.

 

I just hate being sick and it's so bad when I do, I go to all costs to avoid it. I am also older and do not like taking much time off of work.  I'm sorry you are feeling so bad.......it's the worst and people will never understand unless they get a good case of food poisoning.....then they get it.


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#10 Pegleg84

 
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Posted 04 March 2013 - 10:01 AM

I'm back to "normal" status, and hope to stay that way. Jury's still out whether or not I was glutened or soyed, but clearly even going to what seemed the safest place in the neighbourhood was a bad idea... I've been bringing dinner to work anytime I know I have to be out that evening, and last week I forgot. It happens. It could have been a lot worse.

 

Gemini, I guess you're the tough one among us, that it takes you being REALLY sick before you cave.

Me, if my stomach is being stupid or brain is refusing to turn on first thing in the morning, it's better if I just stay put. If my brain doesn't work, I get no work done.


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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.


#11 cavernio

 
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Posted 04 March 2013 - 10:20 AM

I'm with Notme. I haven't even tried looking for work in over 2 years. Before being dx'd I started and quit probably a dozen jobs because one day I'd wake up and just couldn't hack it, and calling in sick doesn't really do it because I wasn't 'getting sick', I rarely felt good. And when I did it'd last for a couple hours, max, so I'd just quit the job.

Doesn't help the guilty feelings of not working or looking for work when I'm around people and tell them I'm not working. The vast majority of jobs require reliability, and I'm not reliable, and I don't trust myself yet to be reliable. Hell, I barely get the laundry done when I'm out of underwear.

I have had mental health issues, which I attribute to being a celiac, going on 13 years now. It's very much mental and emotional for me.


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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#12 DerpTyler

 
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Posted 04 March 2013 - 10:29 PM

your reactions sound like they are kinda on the severe side, i guess you're a bit unlucky in that sense. I can usually handle a reaction pretty well, but that didnt stop me from using it as an excuse to miss school.


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#13 Gemini

 
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Posted 05 March 2013 - 07:39 AM

I'm back to "normal" status, and hope to stay that way. Jury's still out whether or not I was glutened or soyed, but clearly even going to what seemed the safest place in the neighbourhood was a bad idea... I've been bringing dinner to work anytime I know I have to be out that evening, and last week I forgot. It happens. It could have been a lot worse.

Gemini, I guess you're the tough one among us, that it takes you being REALLY sick before you cave.
Me, if my stomach is being stupid or brain is refusing to turn on first thing in the morning, it's better if I just stay put. If my brain doesn't work, I get no work done.

I wouldn't say that I am overly tough. The point I was trying to make, without being judgmental in any way, was if you are feeling that poorly so often, you may need to take a look at your habits and diet and tighten it up a bit. You may still be in the healing process so that might account for some of it. I have been gluten-free 8 years this April and have everything down so it's second nature. I have learned what I can do and what I cannot do, as far as food. I do not get sick that often at all and have healed to the point where I include some hard exercise. That made me feel even better. I was literally dying from malnutrition at diagnosis and weighed 94 pounds. If I can heal this well and live a normal life and show up for work everyday,
most people should be able to do so too. It took a long while for that to happen, over 3 years, but I am stubborn and don't give up easily. I also come from the generation where you go to work unless you are really sick. Not that this mind set is 100% correct but many times, even when I am not feeling my best, I go to work anyway and generally get better as the day goes on. I have a sedentary job so that makes it easier. You know, I am in my 50's and if you take too many days off from work, you can lose your job. I really want to retire someday and that won't be possible without going to work now. That alone is my big incentive.
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#14 kittty

 
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Posted 05 March 2013 - 08:22 AM

I was going to start a new topic, but was going to say practically the same thing as you! Before being DX'd I missed a lot of work, and could tell my boss and co-workers were getting VERY impatient with me. Because I'd seen so many specialists and had so many tests that all came back negative, everyone (including the dumb doctors) thought I was making it up. When I found out it was celiac it felt so awesome because finally I had something to tell those naysayers. I felt that those co-workers who called me a "faker" behind my back would stop doubting me, and everyone would be so understanding. They were....for about six months.

 

I was glutened twice in the last month - both times I ate at restaurants that had always been safe before, and just got unlucky. So I called in sick for two days, one day each time (thankfully the worst of it happened over the weekend both times). After the second time my boss gives me this suspicious look, and I can tell once again that they're not believing me. I'm getting quizzed now every time this happens "Where and what did you eat?" and "How did it happened this time?"  I feel like saying "It's none of your damn business", but that would never accomplish anything.

 

So, I'm back to being on trial again every time I get glutened. Once again people see me as a "faker", and I just have to live with it.

 

I think about people at work who have had other medical conditions (cancer, food allergies, arthritis, knee replacement, asthma), and they were NEVER questioned or had to justify their time off. Why are celiac sufferers treated with suspicion?


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#15 cavernio

 
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Posted 05 March 2013 - 08:51 AM

" If I can heal this well and live a normal life and show up for work everyday,

most people should be able to do so too."

 

You realize that you're making rather baseless presumptions that everyone's like you, right? Those same assumptions that make our friends, family, co-workers, etc, think we were/are just 'being lazy' when we're actually sick?

 

I am not like you. I would probably be living on the street or dead if someone weren't around to look after me. You don't have to 'get it' to accept it.

 

 

Celiac sufferers and pretty much everyone who isn't 'normal' are treated with suspicion because it's easier to think poorly of someone than to feel sorry for them.


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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy




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