Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

People Who Think It's So Easy....


  • Please log in to reply

29 replies to this topic

#16 rainer83

 
rainer83

    Community Member

  • Advanced Members
  • PipPipPip
  • 52 posts
 

Posted 13 December 2010 - 07:59 PM

It's not easy for me personally, but just because others think it is, doesn't mean they aren't completely clean. Location makes a huge difference and having a good support system does as well. I live in a big city that my main grocery store has a good gluten free section, and my friends have all been 100% supportive once they all understood the disease. There will always be people who think it's that we can't eat bread alone. If these people don't get it, I've learned to leave it be. It's not easy for anyone living with massive restrictions like dairy, wheat/gluten, diabetes, no sodium. People just make due. I choose not to let it bring me down, but it's not easy by any means either.
  • 0
Diagnosed by a Naturopath by an elimination diet, gluten free 2 years, finally able to live again after years of suffering.

Celiac.com Sponsor:

#17 sb2178

 
sb2178

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 793 posts
 

Posted 13 December 2010 - 08:32 PM

I think it is one thing to say that there are easy gluten free meals (eggs, baked sweet potato, and frozen peas, for example) and another thing to say it is easy to always stick faithfully to a gluten-free diet. I'd like to be able to grab a quick slice of pizza when I come home exhausted after a 10 or 12 hour day instead of making food, eating applesauce and trail mix, or getting much more expensive and slower take out from a restaurant with a knowledgable cook. But that doesn't make it hard, so much as just something we have to plan for. Keep applesauce and trail mix on hand.

There are hard parts-- mentioned above by other posters-- like when I go skiing this winter, I will almost certainly have to pack all the food I will need for the day. There's also stupidity, like not reading a label carefully enough, and paying for it. And then there are the other people... if I worked from home all the time and did not eat away from home, it would be easy. But, I have friends and family who live far away, and hey, I like to eat out. Fortunately, there are more and more places and chefs who know about gluten and will provide a safe and delicious meal and the friends/family are open to training!
  • 0

2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#18 Fire Fairy

 
Fire Fairy

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 266 posts
 

Posted 14 December 2010 - 08:11 AM

I was diagnosed Nov 2nd. Just in time for the holidays. I got glutenated at the very first family get together and was sick in less than an hour and remained sick 3 days.

I have worked in restaurants and seen the look on the cooks face when he was told of an unusual dietary request. I know that cook said, "it's fine" and handed it to the waitress not having a clue if it was actually safe for the customer. I doubt I will ever trust any food made by someone else unless I can see them prepare it like I can at Five Guys. So out to eat I'm looking at plain baked potatoes in most places. At one time carbonated beverages tasted foul to me (thanks to my migraine meds) so I asked a cashier at Subway if they had anything non-carbonated to drink. She said, "what's carbonated?" Recently I was telling a co-worked I had to be gluten free and after a few minutes I realized she thought I was talking about glucose. She is studying to be a RN.

I have no oven at this time so sadly I can't bake anything myself. The other members of my household all eat gluten so I constantly have to wipe down the kitchen counters before I start working on my meals/snacks.

So for me I guess I'd say the diet is frustrating and what's worse alienating. I too have heard plenty of "Oh it will be fine" and "Your being too picky." It's not hard to find food to cook for myself at home. Thought keeping dishes, utensils etc safe from gluten is very difficult in a mixed kitchen. I love veggies and fresh fruit. If/when I get an oven I love to cook. Not having an oven really isn't good right now. I'd love to fill my house with the smell of gluten free cookies. :)
  • 0
If you over-salt a dish while you are cooking, that's too bad. Please recite with me the real woman's motto: 'I made it, you will eat it and I don't care how bad it tastes!'-unknown

#19 Loey

 
Loey

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,460 posts
 

Posted 14 December 2010 - 10:36 AM

I read on here daily, but am not the wealth of information most of you are, so I rarely post, however I know this is one place my vent will be understood. So....

People who don't really get how difficult it is to stay gluten free drive me up a wall! "Well, just don't eat bread!" says an aunt, who I know means well, but just doesn't understand. The common person, who doesn't have to deal with it, truly has no clue how many places it truly is, and how careful you have to be.

The co-worker who says, when the 10th plate of Christmas cookies was brought into the office, "well, you can eat those ones, or how about that kind?" No. No I can't. Leave it alone, you don't get it, and please do not eat your cookies at my desk! Grr....

What I find even more frustrating though, is people who claim they are gluten-free and say it is so easy. Those people are obviously not completely clean, because I see people on these boards daily who are doing everything right and still get glutened somehow. "Just eat plain meat and vegetables! It's not tough!" Yeah, and not very appealing either.

There, vent over. Thanks for listening, and understanding!


I'm so sorry for your frustration. The holidays are a particularly hard time to deal with people who don't understand Celiac. Some people are so sensitive that they can get glutened by just being around it and not eating it (I know there's controversy over this). It can happen in a restaurant when someone at your table eats bread or at a supermarket when they have bread or cookie samples out. I was recently diagnosed with an ulcer and IBS so my list of ingredients has gotten smaller. I do know that I'm willing to give up anything I have to in order not to be in pain.

Just remember you're not alone. Post and vent whenever you need to. It's not about how much knowledge you have. It's a community of people who truly care about each other on this forum and I know I'm thankful every day to have a place to go and share.

Sending positive energy,
Loey



  • 0

#20 sunshinen

 
sunshinen

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 127 posts
 

Posted 14 December 2010 - 11:23 AM

Anyone who says the diet is always easy is either 1) gluten-light not gluten-free (perhaps without realizing the difference), 2) in a utopian routine they never alter that involves the most perfect, well-informed restaurants, family, and friends ever; 3) not absurdly, severely sensitive and doesn't feel every mistake by others preparing their food; 4) someone who prepares all their own food and loves that; or 5) twisting the truth a bit (which to be fair, a positive outlook is usually helpful).

But it DOES get easier. There will be times, when you feel like you've finally figured it out and got it down. There will be days, weeks, maybe even months where you feel like it is easy.

One of the biggest tricks is changing how you respond to everyone else. People will never get it. Partially because they don't understand the disease, how prevalent gluten is, or both. And partially because there are all sorts of people trying a gluten free diet for all sorts of reasons with all ranges of "risk tolerance" in their exposure to gluten. And the people with non-medical/whimsical/fad dietary motivation, high risk tolerance, and/or low sensitivity to contamination can make it harder on those of us on the opposite side of the spectrum.

I tend to laugh and tell them something like "No, I'm one of the stupidly, absurdly sensitive types where the smallest, invisible speck of a crumb can make me want to die and have symptoms that last weeks."
  • 0
Gluten-Free since February 2006

#21 notme!

 
notme!

    Advanced Community Member

  • Moderators
  • PipPipPipPipPipPip
  • 2,126 posts
 

Posted 14 December 2010 - 12:29 PM

Anyway, the first coworker was going on and on about how I should just try the frosting, because it didn't have gluten. I tried to explain to him that it was impossible that it didn't since it was actually touching the gluten filled roll, but he would have none of it. I finally tried a little bit just to shut him up... and I got sick. Imagine that! I should've stayed strong and refused to eat it!


did you ever have a small child offer you a bite of their slimy, sticky cookie? and you pretend to "eat" it. that's what i do if somebody won't leave it alone. works like a charm :) "mmmmmmm! that is soooooo good! thank you so much!!!" smile, look him right in the eye, and get your point across.
  • 0

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


#22 Gemini

 
Gemini

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,160 posts
 

Posted 14 December 2010 - 12:36 PM

Anyone who says the diet is always easy is either 1) gluten-light not gluten-free (perhaps without realizing the difference), 2) in a utopian routine they never alter that involves the most perfect, well-informed restaurants, family, and friends ever; 3) not absurdly, severely sensitive and doesn't feel every mistake by others preparing their food; 4) someone who prepares all their own food and loves that; or 5) twisting the truth a bit (which to be fair, a positive outlook is usually helpful).


I wouldn't say the diet is always easy and I doubt anyone here on this forum has ever said that. I am one of those who have found this diet pretty damn easy, for the most part, and I fall into none of the categories listed above. I am 100% gluten-free and have the blood work to prove it, as I am highly serio-sensitive. My life is far from utopian but what I have set up works and works well. There will always be times when the situation does not work but I rarely let that bother me. I am extremely independent so don't mind doing what I have to do to make this diet work and not caring a fig anymore what others think. I do prepare most of my own food but do dine out and travel to Europe. I am insanely sensitive and have ended up in the ER from crumbs. That only happened once and will never happen again. If you come to realize that some meals out when traveling will not be stellar, but will be safe and accept that, you'll be fine.

I also have some nutrition education so already knew a lot about the 8 allergens. That helped. I also viewed this whole thing as a challenge..to find and make the best gluten-free food possible. I have converted most of my gluten filled recipes into delicious gluten-free versions. Anyone can do this, unless they really hate to cook. Then you are going to have a problem. Whether you like to hear this or not, it's all about attitude. It's OK to rant away for a bit but if this attitude persists, you need to talk to someone about it.

I tend to laugh and tell them something like "No, I'm one of the stupidly, absurdly sensitive types where the smallest, invisible speck of a crumb can make me want to die and have symptoms that last weeks.


I am all of the above except I am sick for a few days and then I am functional again. I have always been a fast healer so maybe that's why. I also noticed that when I ramped up my work-outs, the few glutenings I have suffered in the past 5 1/2 years pass quicker and I feel better even faster. Maybe that's the key for those who seem debilitated for longer than a few days.....more exercise. The results for me were dramatic.

All in all, there are many on this forum who have done a marvelous job of accepting and moving on with it. Everyone has their moments of anger or being upset but really, following this lifestyle for recovery and good health is just not a show stopper. The worst is the first year when you are in the learning process, after that, it becomes second nature. I will agree, travel can be somewhat of a challenge but if I figured out a way to make it work, anyone can!
  • 1

#23 plantime

 
plantime

    My two handsome grandsons

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,692 posts
 

Posted 14 December 2010 - 03:17 PM

Anyone who says the diet is always easy is either 1) gluten-light not gluten-free (perhaps without realizing the difference), 2) in a utopian routine they never alter that involves the most perfect, well-informed restaurants, family, and friends ever; 3) not absurdly, severely sensitive and doesn't feel every mistake by others preparing their food; 4) someone who prepares all their own food and loves that; or 5) twisting the truth a bit (which to be fair, a positive outlook is usually helpful).


Yes, it is always easy. And none of your list applies to my life.

As for restaurants, it is called having a relationship with the people that work there. I don't throw hissy fits or temper tantrums if my order is wrong, I make it a point to get to know the people that work at them.

I am not "gluten-light." I have to be glutenfree, it is not an option. I am not in a "utopian routine," my life changes on a whim. I do feel when I have been glutened, I do not cook all of my food from scratch.

The statement that I must be "twisting the truth a bit" is patently offensive. Once you get past the "woe is me, I can't eat what everyone else eats" mindset, the glutenfree diet is absurdly easy.
  • 2
Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

#24 Juliebove

 
Juliebove

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,650 posts
 

Posted 14 December 2010 - 03:27 PM

There ARE so MANY with diabetes who are snarfing down plates of cookies(no I'm not exagerating, actual plate fulls), and totally in denial or misinformed about their blood sugar and how to manage it. So much so that those of us who abstain are seen as obsessive. I have sat across the table from them time and time again, every Sunday, every gluten-free support group meeting. People don't get it on the diabetes front either.

I had someone close to me who has some restrictions as well, sit across from the table and tell me that isn't it nice that I could find something on the menu to eat. I was eating plain salmon and steamed veggies, no seasoning, no butter, that's it. Same exact meal I am "fortunate" to eat at every restaurant I go to. I almost gasped in shock at how insensitive that comment was. I'm not complaining about the meal. I choose to be greatful that I didn't have to cook it or clean up, but it was just so insensitive. I had another person who knows I eat no fruit or grains say that they were suprized that I eat chocolate because it is hard to digest. This is after I told them that I had recently become allergic to chocolate and couldn't have it anymore. At the time, it was the last "sweet" treat I had left and I had lost it. I haven't had cake or cookies or anything of the sort in 2 years.


What gets me are the multitude of people who tell me things like... One cookie won't kill you! Or... You can eat anything you want in moderation! Now it's true gluten is not an issue for me. I do have other food allergies. But food allergies aside... I'm talking diabetes here.

My diabetes is out of control for the most part. I am on two diabetes meds and four kinds of insulin. My last A1c was 8.2. I watch every bite I eat and I still have trouble. My Dr. is just baffled. So for me, eating cookies and moderation just won't work.

I also know a lot of people who say that base their good control only on their A1c's. Some only test themselves at home every once in a while and some never do! They say their Drs. are saying they are doing well, so they think they are. My Dr. tells me he knows I am trying very hard. And I am. But it just isn't working. I do have other medical problems that make things more difficult.

There are more diabetics in my family. At birthdays, my mom tends to get every kind of cake and ice cream she can so that every person gets what they want to eat. I find this beyond ridiculous. My theory is that we are diabetics and we do not need cake and ice cream even if it is a birthday. But they not only eat their cake and ice cream but the other people's too. Of course my daughter is not included in the cake thing. Would be too much trouble with her wheat allergy to accomodate her! So I have to bring something for her. But it's usually not cake. The only made up cupcakes we can get here now are chocolate. She doesn't really like them. So usually it's an Udi's blueberry muffin. I eat no dessert.
  • 0

#25 Juliebove

 
Juliebove

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,650 posts
 

Posted 14 December 2010 - 03:33 PM

I was diagnosed Nov 2nd. Just in time for the holidays. I got glutenated at the very first family get together and was sick in less than an hour and remained sick 3 days.

I have worked in restaurants and seen the look on the cooks face when he was told of an unusual dietary request. I know that cook said, "it's fine" and handed it to the waitress not having a clue if it was actually safe for the customer. I doubt I will ever trust any food made by someone else unless I can see them prepare it like I can at Five Guys. So out to eat I'm looking at plain baked potatoes in most places. At one time carbonated beverages tasted foul to me (thanks to my migraine meds) so I asked a cashier at Subway if they had anything non-carbonated to drink. She said, "what's carbonated?" Recently I was telling a co-worked I had to be gluten free and after a few minutes I realized she thought I was talking about glucose. She is studying to be a RN.

I have no oven at this time so sadly I can't bake anything myself. The other members of my household all eat gluten so I constantly have to wipe down the kitchen counters before I start working on my meals/snacks.

So for me I guess I'd say the diet is frustrating and what's worse alienating. I too have heard plenty of "Oh it will be fine" and "Your being too picky." It's not hard to find food to cook for myself at home. Thought keeping dishes, utensils etc safe from gluten is very difficult in a mixed kitchen. I love veggies and fresh fruit. If/when I get an oven I love to cook. Not having an oven really isn't good right now. I'd love to fill my house with the smell of gluten free cookies. :)


We have a mixed kitchen, although there isn't a lot of gluten in it. I buy bread from time to time and when husband is home, there are other baked goods sometimes. He is currently on a diet so not eating cookies, cakes, etc. I do not bring flour into the house or regular pasta. So no worries about cooking stuff.

What I do is use all kinds of paper plates and plastic utensils. If I am using margarine or jam on wheat bread, I dip the plastic knife once. If that wasn't enough, then I throw out the knife and get another. I do not do this with the peanut butter since daughter has a peanut allergy so doesn't eat that. Bread is never put directly on the cutting board. Only on a paper plate.
  • 0

#26 Fire Fairy

 
Fire Fairy

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 266 posts
 

Posted 14 December 2010 - 05:41 PM

We have a mixed kitchen, although there isn't a lot of gluten in it. I buy bread from time to time and when husband is home, there are other baked goods sometimes. He is currently on a diet so not eating cookies, cakes, etc. I do not bring flour into the house or regular pasta. So no worries about cooking stuff.

What I do is use all kinds of paper plates and plastic utensils. If I am using margarine or jam on wheat bread, I dip the plastic knife once. If that wasn't enough, then I throw out the knife and get another. I do not do this with the peanut butter since daughter has a peanut allergy so doesn't eat that. Bread is never put directly on the cutting board. Only on a paper plate.


That's a good idea. Thank you for sharing it. :)
  • 0
If you over-salt a dish while you are cooking, that's too bad. Please recite with me the real woman's motto: 'I made it, you will eat it and I don't care how bad it tastes!'-unknown

#27 kareng

 
kareng

    HO! HO! HO!

  • Moderators
  • PipPipPipPipPipPip
  • 14,312 posts
 

Posted 14 December 2010 - 05:46 PM

That's a good idea. Thank you for sharing it. :)

When we are travelling and sharing PB, we put a bunch out onto a clean plate and the gluteny ones have at it. I keep the jar for my far superior gluten-free bread. If they need more, too bad! ;)
  • 0

santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#28 T.H.

 
T.H.

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,816 posts
 

Posted 14 December 2010 - 06:20 PM

Wow, I did not realize just how hard I would find it to respond to this post! It's kind of hit a few of my hot buttons, so I think I'd better be pithy or I'll go on and on, heh.

I think this post touches on something that I find really frustrating in our celiac community, both the original post and some of the responses. How many of us went through YEARS of pain and trouble, with people telling us we couldn't be experiencing what we were experiencing, that we weren't feeling pain, or nausea, it was all in our heads? Far too many, from what I've seen.

And then we get diagnosed, and I am still shocked at how many celiacs will look at others and...it's almost like this attitude gets passed on. And of anyone, we should know better! I know I'm not the only one getting that response of 'what? You can't react to THAT, because 'I' don't react to that.' As though we all have one body, one experience, one level of sensitivity, now that we are celiacs. As though we're clones, and our experiences should be clones of one another.

And I KNOW that none of us think that way, not when we sit down and talk, but discussions like this tend to set off that feeling of being told 'you can't feel this way' or 'you have to feel this other way,' at least in me. I know that's not what a particular poster is trying to say (well, usually, heh), but sometimes it's difficult not to take it that way.

Like, I'll be honest, the side issue that's started here on being sensitive. And that if you find it easy, you couldn't be super, absurdly sensitive, and the response seems to be that no, I AM super sensitive, and it's not that difficult.

Now, I can appreciate being irritated at being told you must feel a certain way. But I'll admit that I was a bit taken aback at what I took as an implication that the level of sensitivity mentioned was the MOST sensitive a celiac could be, so it was a good example of a sensitive celiac's lifestyle.

I know that being sensitive in the first place brings us a lot of grief, and I would be the LAST person to say someone ISN'T sensitive when they say they are. But the experiences mentioned as sensitive were so different from my own that it feels like a totally different world, and I'm sure there are people who are more sensitive than I am who look at my way of living and must feel the same.

As an example, I seriously cannot imagine even HOW one would eat at a restaurant successfully as a crazy sensitive celiac. You would have to be so dedicated it kind of boggles my mind. I've tried and failed before, too often. If I wanted to try it now? I'd have to ask about the soap used on the dishes I was served with to make sure it didn't have gluten derivatives (and yes, that's made me sick at a restaurant, more than once. All I had was a glass of water, every time). I'd have to ask about the soap and cleaners used on the equipment that cooked my food. I'd have to ask about the farms that made the produce, and what equipment processed it, what pesticides, coatings, and waxes there might be on it. I'd need a brand new scouring pad to scour out a metal pan with no crevices for them to cook my food on. Have to ask what soaps were used to wash any packaging used on the produce, meats, and so on.

That's the kind of routine that I, as a super sensitive celiac, have to follow. I'm sure it's not what everyone does. And I am NOT saying that everyone doesn't have to be careful, but I think there are differences that make our experiences quite different (not that everything else in our life doesn't, right?). I don't want to tell anyone that it isn't easy if they find it easy. If you do, you do, IMO. But I don't appreciate folks telling me it's easy to eat this way, and believe that it should be easy for me, too, without understanding what MY level of sensitivity is, either, you know?

For anyone who is curious, or doubtful of just how many things get gluten, seriously, you should try tracking it down sometime. Just as an easy example, call an apple grower that supplies your apples, and find out if they add wax to their apples. And see whether casein or soy protein was added to the wax (usually it's one or the other, for the type of wax used on apples). And try to track down the people who grew the soy added to the wax and see if they shared their fields or harvesters or anything else that processed the soy with something with gluten.

If I don't want to get sick, I get to do this now, with everything I buy. And I'll be honest, sometimes I am starving and I think - maybe this one will be okay. Maybe I'm not as sensitive as I though - and I buy something without checking all this out. I've pretty much paid dearly for it. Now my way of making things easy is to stop calling if a questionable contamination risk appears, rather than taking the time to track it all the way to its source to ensure its safety.

So I guess all I'm saying is...hmmm...aw heck, don't even know anymore!

Heh... maybe just an old Bill and Ted quote for all us celiacs: be excellent to each other. :-D
  • 0

T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#29 mushroom

 
mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts
 

Posted 14 December 2010 - 06:42 PM

Wow, I did not realize just how hard I would find it to respond to this post! It's kind of hit a few of my hot buttons, so I think I'd better be pithy or I'll go on and on, heh.

I think this post touches on something that I find really frustrating in our celiac community, both the original post and some of the responses. How many of us went through YEARS of pain and trouble, with people telling us we couldn't be experiencing what we were experiencing, that we weren't feeling pain, or nausea, it was all in our heads? Far too many, from what I've seen.

And then we get diagnosed, and I am still shocked at how many celiacs will look at others and...it's almost like this attitude gets passed on. And of anyone, we should know better! I know I'm not the only one getting that response of 'what? You can't react to THAT, because 'I' don't react to that.' As though we all have one body, one experience, one level of sensitivity, now that we are celiacs. As though we're clones, and our experiences should be clones of one another.

And I KNOW that none of us think that way, not when we sit down and talk, but discussions like this tend to set off that feeling of being told 'you can't feel this way' or 'you have to feel this other way,' at least in me. I know that's not what a particular poster is trying to say (well, usually, heh), but sometimes it's difficult not to take it that way.

Like, I'll be honest, the side issue that's started here on being sensitive. And that if you find it easy, you couldn't be super, absurdly sensitive, and the response seems to be that no, I AM super sensitive, and it's not that difficult.

Now, I can appreciate being irritated at being told you must feel a certain way. But I'll admit that I was a bit taken aback at what I took as an implication that the level of sensitivity mentioned was the MOST sensitive a celiac could be, so it was a good example of a sensitive celiac's lifestyle.

I know that being sensitive in the first place brings us a lot of grief, and I would be the LAST person to say someone ISN'T sensitive when they say they are. But the experiences mentioned as sensitive were so different from my own that it feels like a totally different world, and I'm sure there are people who are more sensitive than I am who look at my way of living and must feel the same.

As an example, I seriously cannot imagine even HOW one would eat at a restaurant successfully as a crazy sensitive celiac. You would have to be so dedicated it kind of boggles my mind. I've tried and failed before, too often. If I wanted to try it now? I'd have to ask about the soap used on the dishes I was served with to make sure it didn't have gluten derivatives (and yes, that's made me sick at a restaurant, more than once. All I had was a glass of water, every time). I'd have to ask about the soap and cleaners used on the equipment that cooked my food. I'd have to ask about the farms that made the produce, and what equipment processed it, what pesticides, coatings, and waxes there might be on it. I'd need a brand new scouring pad to scour out a metal pan with no crevices for them to cook my food on. Have to ask what soaps were used to wash any packaging used on the produce, meats, and so on.

That's the kind of routine that I, as a super sensitive celiac, have to follow. I'm sure it's not what everyone does. And I am NOT saying that everyone doesn't have to be careful, but I think there are differences that make our experiences quite different (not that everything else in our life doesn't, right?). I don't want to tell anyone that it isn't easy if they find it easy. If you do, you do, IMO. But I don't appreciate folks telling me it's easy to eat this way, and believe that it should be easy for me, too, without understanding what MY level of sensitivity is, either, you know?

For anyone who is curious, or doubtful of just how many things get gluten, seriously, you should try tracking it down sometime. Just as an easy example, call an apple grower that supplies your apples, and find out if they add wax to their apples. And see whether casein or soy protein was added to the wax (usually it's one or the other, for the type of wax used on apples). And try to track down the people who grew the soy added to the wax and see if they shared their fields or harvesters or anything else that processed the soy with something with gluten.

If I don't want to get sick, I get to do this now, with everything I buy. And I'll be honest, sometimes I am starving and I think - maybe this one will be okay. Maybe I'm not as sensitive as I though - and I buy something without checking all this out. I've pretty much paid dearly for it. Now my way of making things easy is to stop calling if a questionable contamination risk appears, rather than taking the time to track it all the way to its source to ensure its safety.

So I guess all I'm saying is...hmmm...aw heck, don't even know anymore!

Heh... maybe just an old Bill and Ted quote for all us celiacs: be excellent to each other. :-D


Wow, I have to say that I have never before come across that level of sensitivity before. Hmmm - don't know that I could go to that much effort to eat :o Think I would have to grow all my own or not eat it. At the very least the cell phone would get a helluva workout. :rolleyes:
  • 0
Neroli


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

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

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

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

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

Celiac.com - Celiac Disease Board Moderator

#30 T.H.

 
T.H.

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,816 posts
 

Posted 14 December 2010 - 06:52 PM

Think I would have to grow all my own or not eat it. At the very least the cell phone would get a helluva workout. :rolleyes:


I am actually going that route. :-P I live in a desert, so the growing season is longer, and I've been planting like crazy...but I have to make my own mulch and compost and stuff because - of course - the local hay and compost stuff has gluten ingredients too. Ugh.

Ha, and yes...the first few months of calling have been doozies!
  • 0

T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: