No, Thank You!

[notme]

ok, probably my biggest gripe is: when people have that shocked in disbelief reaction to "just a crumb" will make you sick???????? i can see them thinking: surely not! generally, that is someone who doesn't know me very well so it is easily walked away from.

my dear, sweet, incredibly awesome friends, however are driving me bats. they get me boulder canyon chips (yummmm!! i love them) every time i go to their house. which is fine as long as they're not putting it out with every other thing including crackers. last time we went over for an evening, they put out smoked salmon (you can eat this, right? i have to say: did you cut it on a cutting board? who smoked it? what was on the grill in the past hundred years? didn't you just take that out of a plastic container? etc) salsa, cheese spread (that they spread on crackers and stuck the knife back into the cheese) etc. then they say: well, at least eat the potato chips. which i just watched everybody munch down their crackers then stick their hands into the bag of chips. blahhhhhhhh. also booooo i keep telling everybody: I WILL FEED MYSELF and i do. i'm not embarrassed to bring around my little insulated backpack and putting together my own snacks/meals.

there's probably nothing i can do about this. i just wanted to rant to people who understand. thanks to everybody on here, you have meant the world to me since the beginning of my journey and your insight is absolutely priceless. thank you so much.

[YoloGx]

Yes I hate this too. Even some of my best friends think I am being unreasonable and neurotic, not to speak of my relations. Its hard to be around--especially my siblings who choose to make it into a real issue. Their last suggestion was that I could have small amounts of gluten to desensitize myself, as if it were a normal allergy. I really want nothing to do with them as a result. Wish there was some way to make it a non issue.

[aedixon]

I was just talking about sounding neurotic to other people! So, I understand. You're not alone If I have to mention all the questions I just laugh and say, "Oh, ha ha, I know it's crazy... But I have to ask..." and make fun of my own situation. Others will get it, or they won't. Fortunately the few friends I hang out with at their homes are terribly kind to just ask me if I can have something they're serving. And they'll go out of their way to fix me up right, even though I would totally feed myself.

[notme]

Their last suggestion was that I could have small amounts of gluten to desensitize myself, as if it were a normal allergy.

i have a "jusssssst kill me...." face for just such an occasion. the *best* suggestions always come from the same people who have been harrassing me for years: you're too skinny. there must be something wrong with you we're so worried (translated: you must have an eating disorder)

lol or here's one: can you eat (whatever kind of food) ?

me: sure

them: well, why don't you have some?

me: i don't *like* it :/

my husband (and he is usually very very good at this) pulls a styrofoam plate out of the package and asks me: can you have this? i said: to EAT?? LOL i guess you gotta make the best of it

[IrishHeart]

sigh...I can relate.

Thanksgiving at my sister's. I brought gluten-free stuffing, rolls, and a piece of gluten-free pie from the totally dedicated gluten-free cafe/bakery near me so I could enjoy my first gluten-free holiday since diagnosis Nov. 1st. Figured I could eat the plain, unstuffed turkey that she made separately just for me. Isn't she sweet? Should be okay right? She meant well.... but...she basted that turkey with the same baster she used on the STUFFED turkey for everyone else. She made mashed potatoes with chicken broth instead of dairy because she knows I need to avoid that right now too. Again, how thoughtful! (but those beater blades had made the dough for many cookies)... She made me a gluten-free cake for my birthday (used cooking spray with wheat starch and a pan that had made thousands of cakes before).Offered me cut veggies on a platter that had crackers, spreads and chips...YOU CAN EAT THIS, right??? how could I say no? I just said I was "full" even though I was down to the lowest weight my family had ever seen me. I was still learning this diet myself back then, but even the breads and crackers on the table seemed like a pile of mini landmines to me

and so, for the next 2 weeks, I lost the ground I had made the 2 weeks earlier because I was sick as a d-o-g ....sigh...

Christmas was going to be easier. I was more gluten-savvy by then, right!? I brought ALL my food. Except the ham. She made sure it was a gluten-free brand and cooked it separately for me in a tin foil pan...and it would have been a-okay, except I noticed bro-in-law cut it on a cutting board that had seen a lot of action through the years. Did I say anything? nope. I ate it....and guess what happened?

Needless to say....I am staying home for Easter.

They don't "get it" because they don't live it.

All we can do is bring our own stuff and pray that cross-contamination doesn't happen. Kinda makes me feel a bit like that boy who lives in the bubble.

And like you, I would be nuttier than a (gluten-free) fruitcake by now if I hadn't had this forum for wisdom, support, laughter and encouragement and the occasional RANT.

There's so much more to living with this disease than "just avoiding gluten" and real people with real experiences are the best resources. You guys rock!

[srall]

We just had dinner last week at my wonderful SIL's house. She was so generous and bought us gluten free bread and gluten free noodles for spaghetti. I almost had an anxiety attack as I watched her put the gluten free bread on the same pan as the crumby french bread to make garlic bread in the oven. Then as I realized she was going to drain the rice noodles in the same collander (sp?) as the wheat pasta I had to make a choice to either speak up or not eat anything she'd gone out of her way to prepare especially for us. OY. This is why I just prefer to bring my own food. I still ended up with the *flu* right after that and I don't know if it was cc or a little virus...with flu symptoms.

My biggest pet peeve is other adults deciding that they can determine what is safe for my 7 year old. They might be so focused on the fact that something is gluten free, that they'll forget about the dairy, corn or soy. She's getting pretty good about declining food besides fruits or veggies unless she checks with me first.

[adab8ca]

i am so lucky!

my family and friends have totally embraced this lifestyle for me.

My sister cooks everything on parchment paper and even puts it on her cutting board to avoid any potential contamination...my best friends will always go to extreme measures and when we have dinners, it is all gluten-free so I don't have to worry.

They all saw me when I was so sick and they thought I was going to die...So my loved ones think the trade off is worth it, luckily!!!

[YoloGx]

i am so lucky!

my family and friends have totally embraced this lifestyle for me.

My sister cooks everything on parchment paper and even puts it on her cutting board to avoid any potential contamination...my best friends will always go to extreme measures and when we have dinners, it is all gluten-free so I don't have to worry.

They all saw me when I was so sick and they thought I was going to die...So my loved ones think the trade off is worth it, luckily!!!

You are indeed lucky!

I am lucky in that my boyfriend as well as another close friend also cannot tolerate gluten. So we often eat together. It makes us all feel normal rather than weird like we do with so many other folks.

Not so with my family. I don't even bother trying to eat with them anymore, no matter what the occasion. They are actually resentful of the lengths I go to avoid gluten even when I make the meals. I say nothing and they still bring it up and make me feel like a neurotic. I try to make a joke about it but it does not fly with them. I think it hits too close to home since they are at least partially gluten sensitive themselves.

Nevertheless I am going to drive my brother and elderly mother tonight to visit our other brother (with Down's Syndrome) who is recovering from a bad bacterial infection. I asked ahead of time that my mom and brother wash their hands first before they get into my car, so I won't get CC'd. They will have just finished eating dinner. My elder brother said "That sounds reasonable." So maybe I am making some headway towards a modicum of respect in that great big river called "Denial" anyway.

[annegirl]

I guess I'm lucky in that before I was allergic to everything in sight, my brother in law was allergic to nuts. So my family was already used to having to deal with the CC issue from allowing things to touch surfaces that had anything to do with nuts.

My family has been really amazing about everything, but they saw how sick I was and how rapidly I recovered so they don't really question anything. I will help out in the kitchen and tally up in my mind what I won't be eating that meal. Actually on Friday I was able to pull aside food before it was buttered, BBQ sauced etc and ate the whole meal! It helps to be in a large family....I could probably choke to death and fall under the table and not be noticed right away, so the whole eating/not eating thing would be barely noticed.

And if worse comes to worse I just get a shocked look on my face and say {insert allergen here} makes me die! That or I just shrug, laugh and say, I know I'm a freak....but I feel so good it doesn't even matter.

Hanging out with others that have the same allergies is also nice. I have a friend and a co worker that are both gluten intolerant. We swap gluten free options (though with the added delight of soy and dairy issues I'm a super freak )

Also, I don't know if it's an option...but can you take said item and then not eat it? I know sometimes it gets rough having to say no all the time. I get embarrassed when people try so hard and it still doesn't work on a technicality like plating it with gluteny foods.

[anabananakins]

ok, probably my biggest gripe is: when people have that shocked in disbelief reaction to "just a crumb" will make you sick???????? i can see them thinking: surely not! generally, that is someone who doesn't know me very well so it is easily walked away from.

my dear, sweet, incredibly awesome friends, however are driving me bats. they get me boulder canyon chips (yummmm!! i love them) every time i go to their house. which is fine as long as they're not putting it out with every other thing including crackers. last time we went over for an evening, they put out smoked salmon (you can eat this, right? i have to say: did you cut it on a cutting board? who smoked it? what was on the grill in the past hundred years? didn't you just take that out of a plastic container? etc) salsa, cheese spread (that they spread on crackers and stuck the knife back into the cheese) etc. then they say: well, at least eat the potato chips. which i just watched everybody munch down their crackers then stick their hands into the bag of chips. blahhhhhhhh. also booooo i keep telling everybody: I WILL FEED MYSELF and i do. i'm not embarrassed to bring around my little insulated backpack and putting together my own snacks/meals.

there's probably nothing i can do about this. i just wanted to rant to people who understand. thanks to everybody on here, you have meant the world to me since the beginning of my journey and your insight is absolutely priceless. thank you so much.

I can totally relate. Some friends are awesome and totally get it, others just keep saying stupid things! One of my closest friends is really supportive, or at least, comes accross as really supportive, but she said a bunch of stupid things last night, including 'oh well, I'm sure a little bit won't hurt' as another friend of ours was checking ingredients for himself (that's another story but OMG it is fun having another friend new to gluten free!). I replied that 'I'm sure a little bit won't hurt' has been how every glutening I've had started. I mean, I"ve never actually seen anything contaminate the food I've eaten, so obviously, it only takes a teeny tiny bit!! She knows I've gotten sick a few times, does she think I was eating actual obviously gluten-y food? Sigh.

[NateJ]

My biggest issue has been beer and alcohol. I stopped drinking almost 10 years ago and the few remaining friends I have still do not understand. They take it as a personal insult that I don't drink with them. I've basically turned into a social hermit. I don't get invited to hang out or go see bands because everyone knows. 'oh Nate doesn't drink'. And now its 'Nate has been real sick' with the look of pity that makes me want to slap someone.

I've actually had problems at work if you can believe that because I don't go to happy hours or other social gatherings. My old boss said "Nate you don't drink at all?"

" uh no sir I don't" . "Well you will never make it far at this job with that attitude". In his defense he was buzzed pretty good when he said it, but I've always looked at alcohol as a truth serum.

[Camp Laffalot]

I've only been gluten free for 2 months, but I've been alcohol free for 22 years. While it's hard to believe that people can be this ignorant, I've had people try to push me to "have just a little drinkie" or "I just poured you some wine because that's okay for alcoholics....." I just laugh.

Haven't had to face the celiac issue with family yet, but in talking to them, they seem to be very concerned. We will be spending the summer in our RV at my son's house in Maine. He is a trained chef, a registered nurse, and his wife has worked for the dietician at Southern Maine Medical Center for 18 years. They are VERY knowledgeable about celiacs and I am looking forward to a great summer. And just think.....LOBSTAH IS GLUTEN FREE!!!!!

[IrishHeart]

I've only been gluten free for 2 months, but I've been alcohol free for 22 years. While it's hard to believe that people can be this ignorant, I've had people try to push me to "have just a little drinkie" or "I just poured you some wine because that's okay for alcoholics....." I just laugh.

Haven't had to face the celiac issue with family yet, but in talking to them, they seem to be very concerned. We will be spending the summer in our RV at my son's house in Maine. He is a trained chef, a registered nurse, and his wife has worked for the dietician at Southern Maine Medical Center for 18 years. They are VERY knowledgeable about celiacs and I am looking forward to a great summer. And just think.....LOBSTAH IS GLUTEN FREE!!!!!

hurray fa lobstah !!! (bostonian born and bred!!) Have one fa me!!

[Lucydesi]

I can certainly relate. At lunch when I am eating something "weird" or not having cake for a birthday party, I just try to keep it simple and say "oh, I cannot eat wheat." Sometimes people want more info, but usually I get the look like that says I must be exaggerating. I remember I was that way when a friend of mine got diagnosed many years ago. I didn't understand how a minute amount can wreck havoc. I think I even go into denial although I have read a lot on the disease. At first I think my own dad thought "it was in my head" until he saw the results of the endoscopy. Now he is cutting back on his wheat, and has noticed a improvement in his health. My mom makes me gluten-free things which is very sweet. I have pretty much accepted that people are going to believe what they want. Once they are around you for a while, they notice that you really don't eat the donuts or coffee cake someone brought in. They don't understand how ill this disease has made me and I don't want to go back. I have lead to some people being diagnosed and their lives improving tremendously as a result. That makes me feel good.

[aedixon]

Hmm, I guess my neighborhood friends and my office mates are the only ones who saw me get sick and acting weird and gaining weight last year! And then they saw the dramatic change within a week of me going gluten free. That would be why they're so supportive of my eating habits now! Never really put that together before. They are the ones who are easiest on me about the whole issue.

It's shame that people have to see to believe and can't just take our word for it. But I guess I'm glad that somebody around me gets it.

[RebeccaLynn]

It drives me crazy as well - I have been gluten free for only a few months (and am STILL trying to rid CC issues in my kitchen), and though I have a great husband & supportive in-laws, they still want to go out to dinner every few weeks & I just dont trust ANYONE to fix my food but me. We are actually going out tonight & I am really torn whether to bring my own food, or take a huge risk & order restaurant food. I am so tired of being sick all the time. So how do I balance feelings vs my health? I mean, I KNOW the obvious answer, but it still sucks.

[MJ-S]

My old boss said "Nate you don't drink at all?" " uh no sir I don't" . "Well you will never make it far at this job with that attitude". In his defense he was buzzed pretty good when he said it, but I've always looked at alcohol as a truth serum.

And that is a statement that could result in a lawsuit, were you so inclined.

Even more surprising because people can be alcohol-free so many other reasons (ex-alcoholic, religious reasons, just don't like it, etc.) that it's not at all uncommon to encounter people who don't drink alcohol. Maybe HE's an alcoholic.

[IrishHeart]

You are indeed lucky!

I am lucky in that my boyfriend as well as another close friend also cannot tolerate gluten. So we often eat together. It makes us all feel normal rather than weird like we do with so many other folks.

Not so with my family. I don't even bother trying to eat with them anymore, no matter what the occasion. They are actually resentful of the lengths I go to avoid gluten even when I make the meals. I say nothing and they still bring it up and make me feel like a neurotic. I try to make a joke about it but it does not fly with them. I think it hits too close to home since they are at least partially gluten sensitive themselves.

Nevertheless I am going to drive my brother and elderly mother tonight to visit our other brother (with Down's Syndrome) who is recovering from a bad bacterial infection. I asked ahead of time that my mom and brother wash their hands first before they get into my car, so I won't get CC'd. They will have just finished eating dinner. My elder brother said "That sounds reasonable." So maybe I am making some headway towards a modicum of respect in that great big river called "Denial" anyway.

Oh, your family lives near that river too....Da'Nile???

My family is similar, they try to understand, they KNOW full well in their guts (pun intended) they are celiac/GI themselves, but they will NOT even entertain the idea or be tested or try the diet. They are loaded with autoimmune diseases, depression, allergies, etc.... but they do not hear me when I tell them what diseases are linked to gluten intolerance. They ignore my pleas.

Bea, I recently read that latest research suggests a link between Down's syndrome and gluten intolerance. You may already know this? Just offering.