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Am I Just A Wuss? (Staying Home After Gluten/soy/whateverings)
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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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"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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NO - you are not a wuss.

 

This disease sucks!

 

Vent at will - any time :)

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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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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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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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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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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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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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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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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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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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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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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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" 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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Thought I was a wimp & loser for years! My friendships really suffered because I would cancel or couldn't make plans. Sometimes a window of healthy days would appear and so no one ever really knew how sick I was. Started gluten-free in October HAVING NO IDEA that this was a real problem. I'm still recovering but whoa, feel like I'm experiencing things for the first time in my 40s!

Now one of my friends, who told me she thought my problems were emotional in nature, is sick and it looks like some sort of autoimmune disease. She keeps saying, "I know now what you feel like", "I understand". All I can do is support her.

It really does suck but don't let your mind wander into negative thoughts about yourself. Nurture and take care of yourself on your sick days and pat yourself on the back for having a job, doing the laundry or having the wisdom to stay in bed and heal.

Don't give a hoot about what others may think. If you call in sick regularly, it's obviously not nothing! Your boss understands and that's a blessing!

Take care,

Cali

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p.s. haven't had a 9-5 in 10 years

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" 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?

 

Completely agree. When I have bad brainfog I don't even feel safe driving. I can leave my turn signal on, briefly forget which pedal is brake and which is excelerate, and forget to look up at stop lights. It's way safer to stay home in bed on days like that.

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(oh dear, this is getting heated...)

 

In my humble defense, 4 years in, I'm "tighter" with my diet now than I ever have been, 90% of meals I cook myself, and I'm very picky about the places I do eat out. In this particular incident, I covered all the bases and for all intents and purposes it should have been fine. Soy is a new thing and there's still a learning curve. Shit happens. I'm glad it wasn't worse.

 

I'm also extremely lucky that I am well enough to work and do the things I need to do. I'm also very lucky that my boss knows my situation and understands if I have an off-day. No point being at the office I'm I'm just going to stare at my computer like a zombie. On the other hand, I haven't had a real cold all winter, and haven't gotten the flu in... I can't remember, so that's a good thing.

 

What I'm not doing is "faking". None of us are! I think it can be hard for friends, family, and colleagues to really understand what's going on and that, whether it's bad brain fog or you're huddled over a toilet, it still sucks! Maybe we're wusses, but so be it.

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" 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.

I am not making baseless presumptions at all.  Let me tell you what I see and hear on this forum and if I never make another post again, so be it.  All these responses are getting old and this needs to be said.

 

I was as sick as it gets when diagnosed.  I went my entire life with symptoms and was not diagnosed until I was 46 years old.  That's a lot of damage. I was weak, dehydrated, 94 pounds and, as I was told, about a week away from a feeding tube.  Never want to go there again.  It was horrific.  However, I am a strong willed broad and never accept anything as final that is thrown at me.  I guess the only thing that will is death.  I decided that I WOULD get better, no matter what it took.  Maybe the fact that I stayed away from the Debbie Downers that make up the American medical system helped.  They will keep you dependent and sick, if you totally listen to them.

 

I went on an ultra strict gluten-free diet and made it my mission to become as savvy on this disease as Alessio Fasano, the leading Celiac doctor and researcher in this country.  I read legitimate medical literature and listened to Celiac's who had made good recoveries to see what they had done.  I already knew a lot about food because I love to cook so that part was easy for me.

I also developed an intolerance that showed up 2 years in to the diet to dairy but can tolerate small amounts of it now.  It took me 3 years to rid myself of ALL symptoms I had and there were too many to list here.  I presented with classic Celiac so suffered both gastric and neuro problems but I persevered and finally became totally symptom free after 3 years.  I do not go out to eat much at all and make and all my own food. 

 

What I see on this forum are some people who do not put as much effort into educating themselves on food and Celiac and how the disease works, which is very important to managing this disease well.  It's fine to ask questions but there are many who ask basic questions repeatedly so you know they are not educating themselves and reading up on it like they should.

Too many go out to eat too often and then can't understand why they need to take so much time off of work.  Really?  Every time you eat out it's a risk.  You have to accept responsibility for your actions and if you choose to eat out as much as the general population, you are going to be sick more often than you should be. I do eat out but it is not often at all and I tend to go to the same 2 places where they always get it right.  If I do sustain a hit, lesson learned and I pick up and move on......after I spend 2 days with my head in bowl, like the rest of you.

If you repeatedly take time off of work, then what do you expect your boss to say?  In today's world, you will lose your job and then complain about that.  I am never treated with suspicion because I rarely get sick anymore BECAUSE I have healed and take no unnecessary risks. I put major effort into this and I really think many more could be a lot better if they tightened up their diets, stopped eating out at risky places and stopped treating Celiac like it was a horrible disease with no hope of recovery.  It's not.  Like others have said, we have more power over our recovery than others with more horrible diseases.

 

FYI...I have 4 AI diseases so it's not just Celiac.  It has taken me 8 years to get where I am but I have done it. I go to work, live normally and go to the gym and don't think of myself as a victim.  There are many on this forum who have done the same thing...come back from being horrifically sick and are doing well.  It can be done, with the right mindset and some education. I realize there are those who have other health issues and working may not be feasible for them....I am in no way criticizing what they do.  But don't expect to hold down a job if you keep making mistakes with your diet and then blaming it all on being a Celiac.  And stop getting upset over what others say and do at work with regards to this. Who cares what they say?  Most people will never understand because they don't have Celiac and are clueless about food.  Better get used to that. 

 

Most people do well with this after awhile but there are too many whiners.  It could be a whole lot worse.  Yes, I said it, and it needed to be said.  If you are continually having bad days, time to reassess what you are doing and make improvements. Unless you are independently wealthy and don't need to work for a living, you might need to suck it up a bit and try harder.

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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.

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I am not making baseless presumptions at all.  Let me tell you what I see and hear on this forum and if I never make another post again, so be it.  All these responses are getting old and this needs to be said.

 

I was as sick as it gets when diagnosed.  I went my entire life with symptoms and was not diagnosed until I was 46 years old.  That's a lot of damage. I was weak, dehydrated, 94 pounds and, as I was told, about a week away from a feeding tube.  Never want to go there again.  It was horrific.  However, I am a strong willed broad and never accept anything as final that is thrown at me.  I guess the only thing that will is death.  I decided that I WOULD get better, no matter what it took.  Maybe the fact that I stayed away from the Debbie Downers that make up the American medical system helped.  They will keep you dependent and sick, if you totally listen to them.

 

I went on an ultra strict gluten-free diet and made it my mission to become as savvy on this disease as Alessio Fasano, the leading Celiac doctor and researcher in this country.  I read legitimate medical literature and listened to Celiac's who had made good recoveries to see what they had done.  I already knew a lot about food because I love to cook so that part was easy for me.

I also developed an intolerance that showed up 2 years in to the diet to dairy but can tolerate small amounts of it now.  It took me 3 years to rid myself of ALL symptoms I had and there were too many to list here.  I presented with classic Celiac so suffered both gastric and neuro problems but I persevered and finally became totally symptom free after 3 years.  I do not go out to eat much at all and make and all my own food. 

 

What I see on this forum are some people who do not put as much effort into educating themselves on food and Celiac and how the disease works, which is very important to managing this disease well.  It's fine to ask questions but there are many who ask basic questions repeatedly so you know they are not educating themselves and reading up on it like they should.

Too many go out to eat too often and then can't understand why they need to take so much time off of work.  Really?  Every time you eat out it's a risk.  You have to accept responsibility for your actions and if you choose to eat out as much as the general population, you are going to be sick more often than you should be. I do eat out but it is not often at all and I tend to go to the same 2 places where they always get it right.  If I do sustain a hit, lesson learned and I pick up and move on......after I spend 2 days with my head in bowl, like the rest of you.

If you repeatedly take time off of work, then what do you expect your boss to say?  In today's world, you will lose your job and then complain about that.  I am never treated with suspicion because I rarely get sick anymore BECAUSE I have healed and take no unnecessary risks. I put major effort into this and I really think many more could be a lot better if they tightened up their diets, stopped eating out at risky places and stopped treating Celiac like it was a horrible disease with no hope of recovery.  It's not.  Like others have said, we have more power over our recovery than others with more horrible diseases.

 

FYI...I have 4 AI diseases so it's not just Celiac.  It has taken me 8 years to get where I am but I have done it. I go to work, live normally and go to the gym and don't think of myself as a victim.  There are many on this forum who have done the same thing...come back from being horrifically sick and are doing well.  It can be done, with the right mindset and some education. I realize there are those who have other health issues and working may not be feasible for them....I am in no way criticizing what they do.  But don't expect to hold down a job if you keep making mistakes with your diet and then blaming it all on being a Celiac.  And stop getting upset over what others say and do at work with regards to this. Who cares what they say?  Most people will never understand because they don't have Celiac and are clueless about food.  Better get used to that. 

 

Most people do well with this after awhile but there are too many whiners.  It could be a whole lot worse.  Yes, I said it, and it needed to be said.  If you are continually having bad days, time to reassess what you are doing and make improvements. Unless you are independently wealthy and don't need to work for a living, you might need to suck it up a bit and try harder.

Despite what people say, you have a good attitude towards celiac and life in general. There are many things worse than ceilac, the fact that we can make ourselves healthy with only a diet change is a luxury most diseases dont have. Some people will always find a way to make excuses.

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Despite what people say, you have a good attitude towards celiac and life in general. There are many things worse than ceilac, the fact that we can make ourselves healthy with only a diet change is a luxury most diseases dont have. Some people will always find a way to make excuses.

 

It's not only a diet change, though. It's an entire lifestyle change, and that means practice, education, and making mistakes. Gemini is criticizing people for making mistakes, while admitting making them him(her?)self. It's hypocritical. Most of our doctors don't have a clue about celiac, and so people should not be slammed for asking basic questions. I always thought of this forum as a place of support and a place to share experiences - not a place where I'm told to suck it up and stop whining.

 

Honestly, if Gemini has this lifestyle down, and doesn't need any help or support, and has no compassion for fellow celiacs, why is he/she even here?

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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 plenty of compassion, Kitty, for people who take responsibiltiy for their actions and don't continually make excuses for their behavior....and then get all defensive when I point out the obvious.  Zero common sense?  I'm the one who is doing well and going to work every day because I make big efforts to do things right.  What part of that don't YOU understand? How do YOU define common sense?  Eating out all the time and whining because you can't work and call in sick and wistfully thinking this defines Celiac Disease?  :rolleyes:

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It's not only a diet change, though. It's an entire lifestyle change, and that means practice, education, and making mistakes. Gemini is criticizing people for making mistakes, while admitting making them him(her?)self. It's hypocritical. Most of our doctors don't have a clue about celiac, and so people should not be slammed for asking basic questions. I always thought of this forum as a place of support and a place to share experiences - not a place where I'm told to suck it up and stop whining.

 

Honestly, if Gemini has this lifestyle down, and doesn't need any help or support, and has no compassion for fellow celiacs, why is he/she even here?

You like to test people's patience, don't you Kitty?  I am here to help others and have done so because they listen to what I and all the other veterans say.  We help many more people with better attitudes than yours and they get better and show their appreciation.  That makes for a very good day when I can get new Celiacs to see what this really entails and they take the steps necessary to heal.  It sure as hell is hard work but is very do-able.  You re-adjust over time to this new way of life but it does not have to be any worse than the life you had.  In fact, it's way better because you get to be healthy again.

 

What mistakes are you referring to?  I rarely take a hit because I am so careful.  Maybe when you get older, you will realize that you can't take unneccessary risks with this diet when you get to be over 50.  Bad idea......

 

One more thing and then I will make no other comments on this.....you can stop the manipulation too.  Why is it that when someone is given constructive criticism, all of a sudden this forum is no longer a place of support?  You're guilting techniques are not going to work on me.  It's not for a lack of compassion, either. I have a sister who does that and I don't let her manipulate me either.  I'm old, I know all the tricks. This forum is supportive for those who want help and guidance, not for people who come on here and list all the food eaten out and then asking if they are a wuss for calling into work sick once a month. And, yes, we know doctors are clueless about Celiac, that's why you need to educate yourself on this well. You don't necessarily need an MD to recover well.

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