I'm Really Over All The Insensitive Comments, 6Yr gluten-free

[sunnyfla]

I've been gluten free for at least 6 years and at first it was REALLY hard, not so much missing the food as odd at that sounds (I think not being so sick made giving it all up easier, maybe if I hadn't it would have been different).  I was more depressed and upset because I was excluded from so many social things or at the end of snide comments. 

 

I remember one time someone who I thought was a friend saying oh just have a diet coke if you really want to come along for dinner with us. 

You know what happens when you do that, everyone stares at you and tries to give you just one bite and you get to forever explain that you can't, so then the next time oh gee sorry we forgot to let you know we were going out...

 

Eating out is so hit or miss,  I know you all understand but it is so hard for others to get it because I don't break out in welts like a peanut allergy, although I will react to flour in the air with red itchy blotchy skin so now I carry an epipen.

 

So this last week, someone who has been a friend for over 20 years and recently moved here had me in tears over the way I handled explaining needing food gluten free.  The server asked what would happen and I said I would spend a lot of time in the bathroom later and be very sick with headaches and body aches.  So the next day she told me, at all places the dinner table, that discussing that while I was out was inappropriate conversation for mealtime.  Mind you she is the sort that nothing is beyond discussion so I was shocked and hurt, especially given I did not go into any sort of graphic details.  She also glutened me about a year ago so she knows what just a tiny bit will do to me so I was just dumbfounded and hurt over this most recent thing. 

 

Normally I would just quietly explain and if I got sick not say or do anything and then one day I met this tiny girl who looked about 4 who was actually 8 and I found out she almost died from undiagnosed celiac disease.  From that point on I've been more vocal about not safe restaurant meals when we do eat out, not just for me but for everyone else and especially her to be safe. 

 

I had another episode on Sunday where they screwed up my brunch omelet at Bonefish grill and I ended up waiting for a hastily fixed meal while my family ate and were almost done by the time I could eat.  The worst was the treatment by the staff. 

 

I came home and had a pity party, why does it have to be so hard?

 

 

 

[qlwmdw]

I've been gluten free for at least 6 years and at first it was REALLY hard, not so much missing the food as odd at that sounds (I think not being so sick made giving it all up easier, maybe if I hadn't it would have been different).  I was more depressed and upset because I was excluded from so many social things or at the end of snide comments. 

 

I remember one time someone who I thought was a friend saying oh just have a diet coke if you really want to come along for dinner with us. 

You know what happens when you do that, everyone stares at you and tries to give you just one bite and you get to forever explain that you can't, so then the next time oh gee sorry we forgot to let you know we were going out...

 

Eating out is so hit or miss,  I know you all understand but it is so hard for others to get it because I don't break out in welts like a peanut allergy, although I will react to flour in the air with red itchy blotchy skin so now I carry an epipen.

 

So this last week, someone who has been a friend for over 20 years and recently moved here had me in tears over the way I handled explaining needing food gluten free.  The server asked what would happen and I said I would spend a lot of time in the bathroom later and be very sick with headaches and body aches.  So the next day she told me, at all places the dinner table, that discussing that while I was out was inappropriate conversation for mealtime.  Mind you she is the sort that nothing is beyond discussion so I was shocked and hurt, especially given I did not go into any sort of graphic details.  She also glutened me about a year ago so she knows what just a tiny bit will do to me so I was just dumbfounded and hurt over this most recent thing. 

 

Normally I would just quietly explain and if I got sick not say or do anything and then one day I met this tiny girl who looked about 4 who was actually 8 and I found out she almost died from undiagnosed celiac disease.  From that point on I've been more vocal about not safe restaurant meals when we do eat out, not just for me but for everyone else and especially her to be safe. 

 

I had another episode on Sunday where they screwed up my brunch omelet at Bonefish grill and I ended up waiting for a hastily fixed meal while my family ate and were almost done by the time I could eat.  The worst was the treatment by the staff. 

 

I came home and had a pity party, why does it have to be so hard?

I completely get where you are coming from.  I have for the most part given up on eating out, it just seems like a pointless exercise to me.  All I do is worry constantly about cross-contamination and not to mention the fact that my work puts me in the back of house of many restaurants; so I get to see things that I wish I hadn't seen.  I have Celiac and it very nearly killed me literally, but even after being gluten free for oh five years now it's still no cake-walk.  It really is depressing... to add insult to injury I also have intolerances to sugar alcohols, preservatives, nuts, milk, carageenan, xanthan gum, the list goes on and on; luckily I'm not dangerously allergic to anything, well yet at least, but it makes eating even at home a massive challenge.  So much to the point that I eat the same thing for breakfast and dinner every single day; I don't even bother with lunch since that makes things worse with the old "Abominable Bowel Syndrome" as I like to call it because after seeing, hearing, and writing IBS out so many times it really just gets old so I try to have some modicum of humor with it.  Sheesh look at my rant, sorry just wanted to let you know you are without a doubt not alone in this wretched misery; I used to tell myself that I don't miss the food, and like you my reasons were very sound in that the food was not worth the punishment; and anyone that says otherwise has never felt the pain and nerve wracking sensations of being "glutened."  However, I do really miss the food, or at least the ability to eat something different or like yourself just able to share the experience with family and friends, because eating is a social occasion.  For some of us though it's a necessary evil.

[CK1901]

Do you have any support organizations in your area? I haven't tried this yet, but I've thought about it. It would be nice to go out and eat with some other folks that really understand. I've kind of given up on my family being nice or competent about it. I have a few friends that will at least tolerate me instead of being outright mean about it. Others have been jerks. Following this kind of diet requires an intense amount of discipline and I try to let knowledge make me feel better instead of worse. Imagine all the other things that we are capable of overcoming and mastering given that we utilize that much discipline as part of just a regular day. 

[mommida]

It's times like this when you find out who your friends are.

You find out how strong you are.

 

..and you figure out how to keep on going.  Sometimes you need to drop the baggage of crappy relationships.

 

Getting diagnosed can be like a liberation, from getting sick and from sickening people.

[mamaw]

I  think  this  is one aspect  of being  gluten-free  for health  reasons  is so  hard.. We  mostly  don't  appear to be ill or  look  like  we  have a serious  disease....plus  for  the  layperson  who knows  nothing about  health issues  just  can't  wrap  their head  around  a  statement  that  eating  food  could make  us  terribly  ill not  to mention  developing  a  cancer...I  quit  a long  time ago  trying to make  family  &  supposed  to be friends  understand....even some of the  medical community  doesn't  even  understand...

I do go out  to  eat but  always do my homework  first  so  when  with  friends I  know  what  I can order  &  eat  safely..so  no big  scene, I just  state  I'm  gluten-free  please  tell the  chef  &  order  from  what  I decided  before   I  went  into the  restaurant...If  I get a  salad  with  croutons  on it  I just  send  it  back  &  tell them NOT to pick off  the croutons...I  order  very plain  foods, nothing  fancy with  loads  of  sauces, cheese  &  things  that  can  harbor  gluten....For me it is  usually  a  salad NO croutons ,  wild  caught  salmon,,,or  if  I'm at a red robin I do get the burger..I never  order pasta  because  first  it is never cooked  right &  many times  they  cook it in the  wheat  pasta water, never  realizing  that  is  putting  gluten into  our  mouths....

If  I'm  eating breakfast  out  I always ask  about  the  scrambled  eggs  to make  sure  there  is not pancake flour  added to the  scramble....

I always  pick  where to eat  with friends, they give a few places  where they want to go & I say  yes, or no  for me.. Since  they are true friends  they  always go where I can eat  as well...I do  have  other  so called  friends but  I stopped  eating out  with them &  the  stupid  insulting  comments...

A good  support  group  is a wonderful  asset.. Once  you are  there  look  around  &  find  a  non  cheating  ,knowledgeable celiac to  shadow  & learn from..... I know  many celiac  who  have  been gluten-free  for  20  years  but  still don't  understand   or  stay updated on  celiac so  they are  worthless.....

Misinformation  is  worse  than no information  !!!!

hth

[Nikki2777]

I've never heard of this -- pancake flour gets added to scrambled eggs?  Wow, that's frightening.

 

 

If  I'm  eating breakfast  out  I always ask  about  the  scrambled  eggs  to make  sure  there  is not pancake flour  added to the  scramble....

 

[mamaw]

yes scary for sure! restaurants ( some) add pancake flour to scrambles eggs to make an omelet fluffier... SO always check... I recently found out some places are now doing the same thing with mashed potatoes.....Another thought always ask about mashed potatoes real or boxed to see if they are truly gluten-free....