34 replies to this topic

[Noomers]

I'm so sorry you're dealing with this. Your response is incredibly mature!

I once spent a summer living with 7 other girls from church, one of them had celiac. I'm sure we glutened her constantly because we really didn't get it (or care enough to figure it out) and I feel really bad about it now (just found out I have celiac). I'm thinking of contacting her now and apologizing. We never made fun of her but I'm sure we contaminated the peanut butter a number of times.

It's clear that your peers really don't get it. Is there some way that you can educate them? I know that you probably don't want to make a big deal about this, but maybe there could be one last-ditch effort on your part to understand. Maybe you could printoff some small papers with an explanation of celiac disease and what it is, what steps you have, what happens if you don't go gluten-free,etc., to take and hand those out to the obnoxious ones? Or maybe there is a doctor in your congregation who would be willing to sit down and talk to the group for a few minutes (of course you might have to educate that doctor first). Would your youth leader let you address the group and share how hard it is for you to be gluten-free? It sounds like you're doing a great job of giving these kids the benefit of the doubt and what they really need is more education.

[Victoria6102]

Thank you, it is hard to act mature sometimes when they treat me like this! lol

Good idea about talking to my youth pastor. You're right, I don't want to make a big deal out of it...I wish I could just bring my own meal with me to things and have noone make any comments at all and pretend I was eating what they're eating! Sadly, it is not that way, and even more sadly, I know it will never be that way! But I do have those who are with me and who don't make any comments to me, only encouraging ones!
I have tried to give one girl information about it before but she ignored my email Guess I could give it another try.!

Actually, my mom is a nurse! She did talk to the youth leaders and those in charge of my youth group and church about it so they mostly understand. I would ask if she could try to explain to my friends but I am afraid that would make it worse.

Don't feel too bad about glutening this girl before you knew about celiac that much....to be honest, before I had celiac I had no idea what gluten really was and if someone had been saying the stuff that I say, about what I can and can't eat and how serious it is, I might have thought they were exaggerating too....I guess when something happens to YOU, it really puts things in persepctive!!

[beatthewheat]

ha yeah i have the same problem! im fifteen and a high school cafeteria is scary enough without having to bring gross looking food... My friends poke fun of my food and intolerance and i laugh along because i don't want to be too sensitive but their "joking" daily gets old... My best friend and I recently got in a fight and her retort was "At least I can eat cake! and what the he11 are you gonna do on dates?". This made me upset because i do worry about how my life wont be normal in the dating world all the time! After i walked away she was like "gosh I'm just kidding!", but I don't think i can handle her hurtful "jokes" everyday!! but other than these jokes, my friends are really good friends and we all get along really well, I just don't know how to lightly make them stop being rude...

So i guess i don't really have any advice for you since i'm struggling with the same issues,maybe you could start with talking to your closest friend about how serious it is and show her/him that there's other humor besides your food..The less that you pay attention to it the less they will continue to talk about it. I'm just hoping that it will get better once my friends grow up and realize its seriousness.. Thankfully my closest friends understand how much pain i go through when i eat it on accident, so they take me seriously, but that doesn't stop them from making fun of my food or eating all of my good food! i always feel like rude when i don't give my hungry friends some of my food but i know i wont be able to eat anything from anywhere else. Good luck!

[aeb]

You may not believe this but even as a grad student I have felt this a little. I being cereal with me to my early morning class and snack during break. The other students "tease" about my kix cereal, and not its not actually kix but a gluten free version. We then went through the whole, want a piece of my muffin thing, no thanks im allergic, it doesnt have nuts, im not allergic to nuts thanks anyway, then what are you allergic to, gluten its in wheat. Yes I find it easier with people I am not close with to describe it as an allergy. And I got to do it all again a weak later when a someone brought in a b-day snack, except she didnt realize that white wheat is still wheat (she really wanted me to try it because it didnt have whole wheat). I dont mind this, people want to share food, its nice (as long as its not my expensive foods). But then this girl goes around to everyone offering food and asking (a bit loudly) if they have a food allergy declaring that it doesnt have nuts (why is it always nuts???) So yea, of course a bit awkward for me, cuse of course no one else had an allergy, and the girls friend then glares at me and says "Its special for her birthday" like my gluten intolerance is something personal against her.

SO the point of this is just be confident in you. dont let people get under your skin, I know its hard, Im still not 100% there yet and I think Im probably nearly 10 yrs older. As you find yummy foods and share them with new friends, they will think being gluten free is something good. My best friends dad went this way, he bought foods for me to eat when I visit (tortillas, chips, crackers, dips, etc), and tried them, now they get them all the time for themselves. As for your youth group, I agree talk with the pastor or just tell the kids, if I was a diabetic and didnt share your cake would you tease me, if I were allergic to peanuts would you taunt me with your PB&J; they probably will say no. Celiac is the same, you shouldn't be teased for following a diet that makes you feel good and keeps you healthy. Seems to me like you are doing a good job, spend time with people who will support you and not bring you down.

Good luck!

[shadowicewolf]

Some are just plain idiots that only care about their own wants and needs

Just ignore them. They aren't worth the time spent coming up with something to say back if they are going to say such things.

Don't let it get you down hun! Can you bring this up with your youth groups leader? Perhaps letting them know whats going on will help, better yet, find their parents and tell them what they have been doing

But in reality, ignoring them is the best bet. I was a victim of bullying for years (bad enough i would skip school most of the time and failed 6th grade because of it). It is hard, i understand completely.

But hey, at least you aren't eating that modified stuff they're eating Take the high road

[Cypressmyst]

How do I deal? I educate and convert. I know you said you wish they would all get Celiacs...I have some good news for you then. Every human on Earth can not digest gluten. Celiac is simply one symptom of this problem.

Other symptoms include:

Hypo-Hyper thyroid
Diabetes
Menstrual Cramps, PMS <--------No these are not normal. We should not have these as women. Mine disappeared at the 9 month gluten-free mark.
Infertility
Cysts
Fibroids
Acne
Skin rashes, eczema, rosacea, Dermatitis Herpetaformis
Asthma
Heart burn
Migraines and Headaches
Body/Muscle aches and twitches
Depression, Bipolar, Schitzophrenia
IBS
Ulcerative Colitus
Diverticulosis/itis
Joint pain/ Arthritis
Allergies to food and the environment
Insomnia
Night sweats
Night terrors
Sleep apnea
Sleep walking
ADHD, Aspergers
Brain Fog
Low Libido
Rage
Paranoia
Nauseaus all the time.
Lupus
MS
Parkinsons
Really any autoimmune disorder
Heart disease
Cancer
Slow healing
Scoliosis
Obesity

I'm willing to bet your friends suffer from more than one of these things all thanks to our friend gluten. Been killing us for a long time now. But it is just in the last few decades that wheat was modified to be 50% gluten instead of 7% and it is in everything we eat, all day every day. We never get a break.

As a result we have an explosion of chronic pain and disease.

When people cut it out they see that they feel better and stay away from it. But understand that it also has an opioid effect on the brain. People are addicted to it like it is heroine. This explains the defensive reactions of your friends.

Do your research and educate them. Try to have the same patience with them as you would a drug addict. Don't get preachy but realize that this is poison, not food, and you are doing the right thing by your body staying far away from it.

F%#* Gluten!

[GlutenFreeManna]

Thank you all for your help and suggestions!

Sometimes I feel like it is my fault, but what can I do about it? There is no cure for Celiac. One of my "friends" said "Oh, well you're just so weird. Not because YOU are weird, but because the Celiac makes you weird." That sure confuses me.

Got a question...do you all think that drinking out of someone else's water bottle after they've eaten a sandwich then drank out of it, could make you sick?
I did that a month ago. I was actually on a trip with my church group. Don't get me wrong, I love my church and my youth group. Most of them are fine with it, but there are several who won't give it a rest. Constantly, it's got to be about me and how weird my disease is. So anyway, we were traveling in a car 18 hours from Canada (great situation to get glutened, huh?!)And my bag of gluten free snacks was on the floor along with someone else's bag of snacks. When I thought I was grabbng my water bottle it was actually someone else's. Didn't realize that til after I had drank out of it. I calmly freaked out (if that makes any sense haha) and said that I had not been glutened yet so wasn't sure how long til I would get the side effects of it, but I might know within 3 hours. Well 3 hours passed and my stomach started to hurt but I didn't say anything because they already thought I was exaggerating. Before I knew I had Celiac, I would get random mini-seizures...haven't had any since I went gluten free but that night, at the hotel I woke up with one, so bad I could barely even move. They thought I was making myself do that also. For the enxt couple days traveling home, I had all the great wonderful exciting joyful () side effects from getting glutened. Somehow, they thought it was all in my mind. I'm convinced it wasn't. So basically the whole way home I got comments such as "Stop faking for attention" or "Get over yourself". The last day travelling I was curled up in a ball crying because it hurt so bad, the whole ride. When we got to a rest stop, one of the girls "felt faint" (now who wants attention?!) and had to hold someone's arm. But when I asked to hold their arm to walk inside, I got a few rude comments and looks and they barely helped me at all. I lost great respect for many people that trip. I would not make any of this up! I also wouldn't eat like I do if I didn't have to....who would?!

And please do not lose any respect for churches or Christians because of this. Every church has the few people who will be rude to those who are "different"...guess I'm just having a hard time dealing with it! It's a lot for one girl to handle on her own...haha well enough complaining and long-stories. Thanks for listening Your help and advice is still greatly appreciated, especially on how to handle situations like the one above (one last note about that, I did not complain about my 'glutening" except once, to ask if we could find a rest stop.)

I have gotten glutened from sharing a water bottle..so that was not in your head. I also had unexplained seizures/fainting prior to going gluten free. As far as the youth group goes...tell an adult please what is going on. Where is your youth leader or his wife when all this was going on? Were there no adults in the car that knew about your celiac disease? You need to have a talk with your parents about this too--you don't have to tell them WHO was being mean but tell them that you were picked on and didn't feel safe telling anyone you were hurting. Maybe between you, your parents and your pastor you can work out a better plan for next time you go on a youth trip. Like maybe a trusted adult you can tell when you get glutened instead of the kids that picked on you? The kids will probably still pick on you for goign to an adult and getting special treatment if you get sick, but that's jus th way they are. Hopefully you can work out a safe plan for next time and also find a way to forgive these rude kids (which doesn't mean you have to trust them to take care of you or help you get safe food either)Do what Jesus would hve done--forgiving his enemies and praying for them. Stay strong girl!

[shadowicewolf]

ADHD, Aspergers

I'm going to be a bit picky on these two (no offence ).

I agree with most ADHD cases, where that it is something eviormental (ie: Food). But in other cases it isn't (thus why i think its overdiagnosed).

Aspergers, on the other hand, has nothing to do with diet (again, misdiagnosis could be more common here).

As someone who has both, it just slightly insulting. Nothing towards you or anything, but i hate it when someone says that this is the cause for this when it isn't.

(sorry for the tangent, but it somewhat irks me )

---

Op another thought, why not stop going for a little bit (a meeting or two) and see if that calms things down for a bit.

[sierrabn]

I had a similar experience with one of my close friends recently. We were going to go out to eat, and he insisted on going to one of our favourite places we used to visit, before we figured out what was making me sick. He proceeded to mock me about it, accuse me of exaggerating, and insist there was something on the menu I could eat, because it was "ridiculous to believe that anywhere had nothing for me to eat". I ended up telling him he was being insensitive, and leaving.

I let him cool down and after a few days he came back to talk to me about it and ask questions about how serious it was, and I realized I needed to be more specific in giving actual examples that relate to me, not general examples, in order for him to put how it effects me into perspective.

[rgarton]

That is just outright bullying, and shouldn't be tolerated at all. All my friends are really understanding and caring fortunatly, my partner has even made our whole house gluten free to keep me safe and makes me lunches if i have to go anywhere, gets me hand gel incase i touch anything that someone else has had and writes my name on water bottles! I feel so lucky after reading this. But i really do feel for you. I did have an unfortunate case of one 'friend' telling me i was over exaggerating that i couldn't come and see her because i had been glutened, but i calmly explained to her exactly what happens when i eat gluten and the side effects from it in the grossest possible detail, shes never complained since. Maybe find or make a really yummy cake to take in and let everyone eat and tell them initially you won't eat any then once they realise how yummy it is tuck in and say 'see, aint so bad hey?'

[domesticactivist]

The way these kids are treating you is unacceptable and definitely not Christian. I think the youth pastor needs to know about this. Maybe, without it being about you, there can be a series of sermons about what it means to be a friend, or coping with chronic disease, or something similar. As far as educating them about celiac - is there a doctor or other "authority" who these kids would believe about celiac? Maybe your group could have a guest speaker.

[Pheebers]

My 13 year old daughter had a big issue at first with people acting all sorry for her in an annoying way. (Especially her grandparents....) Now she emphasizes what she can eat and it helps. As in "I can eat ALL fruits and ALL vegetables and ALL dairy and ALL meat and ALL rice and ALL potatoes.... just not stuff that has been cooked with bread parts." When you put it like that it downplays the different-ness. It has helped.

[kareng]

just not stuff that has been cooked with bread parts."

Love it! Bread parts!

[Pheebers]

Love it! Bread parts!

I know Somehow that's less weird-sounding than gluten... it's oversimplifying but these people aren't cooking for her anyway.

[MirzahT]

Thank you all for your help and suggestions!

Sometimes I feel like it is my fault, but what can I do about it? There is no cure for Celiac. One of my "friends" said "Oh, well you're just so weird. Not because YOU are weird, but because the Celiac makes you weird." That sure confuses me.

Got a question...do you all think that drinking out of someone else's water bottle after they've eaten a sandwich then drank out of it, could make you sick?
I did that a month ago. I was actually on a trip with my church group. Don't get me wrong, I love my church and my youth group. Most of them are fine with it, but there are several who won't give it a rest. Constantly, it's got to be about me and how weird my disease is. So anyway, we were traveling in a car 18 hours from Canada (great situation to get glutened, huh?!)And my bag of gluten free snacks was on the floor along with someone else's bag of snacks. When I thought I was grabbng my water bottle it was actually someone else's. Didn't realize that til after I had drank out of it. I calmly freaked out (if that makes any sense haha) and said that I had not been glutened yet so wasn't sure how long til I would get the side effects of it, but I might know within 3 hours. Well 3 hours passed and my stomach started to hurt but I didn't say anything because they already thought I was exaggerating. Before I knew I had Celiac, I would get random mini-seizures...haven't had any since I went gluten free but that night, at the hotel I woke up with one, so bad I could barely even move. They thought I was making myself do that also. For the enxt couple days traveling home, I had all the great wonderful exciting joyful () side effects from getting glutened. Somehow, they thought it was all in my mind. I'm convinced it wasn't. So basically the whole way home I got comments such as "Stop faking for attention" or "Get over yourself". The last day travelling I was curled up in a ball crying because it hurt so bad, the whole ride. When we got to a rest stop, one of the girls "felt faint" (now who wants attention?!) and had to hold someone's arm. But when I asked to hold their arm to walk inside, I got a few rude comments and looks and they barely helped me at all. I lost great respect for many people that trip. I would not make any of this up! I also wouldn't eat like I do if I didn't have to....who would?!

And please do not lose any respect for churches or Christians because of this. Every church has the few people who will be rude to those who are "different"...guess I'm just having a hard time dealing with it! It's a lot for one girl to handle on her own...haha well enough complaining and long-stories. Thanks for listening Your help and advice is still greatly appreciated, especially on how to handle situations like the one above (one last note about that, I did not complain about my 'glutening" except once, to ask if we could find a rest stop.)

I know this was posted a while ago but i really have to say that im sorry people feel the need to act like that. any person that treats you like that does NOT deserve to be your "friend". my advice is to find some new friends, friends who really care about you and believe you about having celiac. i wish you the best of luck.
-Ceara.