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weekendwarrior

Dealing With People Who Don't Understand

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I'm going on week 3 since being diagnosed, and I'm still suffering inflammation symptoms and deep muscle pain.

If that wasn't hard enough, I am already sick of having the "wait, you can't eat ANY wheat? Like no bread? No Pizza?" conversations.

I've also had to deal with being the butt of jokes (at a children's birthday party this weekend, held at a pizza shop). Naturally I wasn't eating anything (had a bag of cashews on the way up to hold me over. Being there was tough enough, since this was my first time out at a restaurant and I already felt like the spotlight was on. Maybe I'm just being overly sensitive, but hearing "well, I'd offer you this DELICIOUS slice of yummy pizza, but it'd make your tummy hurt" kinda set me off.

Maybe my skin is a little thin still (as I'm still in pain every day), and I'm sure one day I'll be able to be light about it. But at what point did celiac become ok to joke about? God forbid I was dealing with another illness or disease, I don't think people would make jokes and make light about that.

I'm curious if anyone else has had to deal with anything similar as I'm already nervous about going out to parties, and out to social events, because I feel like, if I don't eat, it's just shining a bigger spotlight on me, as if to say "look at me!!"

Anyways, could use a little encouragement from those who are in my shoes, so to speak.

Thanks!!!

- WW

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People can be so cruel!  I'm sorry.....

My friends have generally been quite supportive, but I have tried to nod and smile a lot. When they offer me pizza or beer, I just say "no thanks!" with a big smile. I keep a water or diet coke in my hand at all times at a party. When I'm offered something from someone that doesn't know the situation, I just tell them I already have a drink and maybe I'll get something else later. Or, "I had a late lunch. If I'm hungry later, I can help myself" My closest friends know the situation and how serious it is. I allow them to be the rumor mill for me. After a couple of months, many of my friends "get it". I also made very clear to people that I don't want them making me special food.... 

If I'm attending a dinner where there is a head count, I email the host ahead of time and explain that I have some dietary restrictions and please not to order me anything. If you tell them you are gluten free, they will inevitably try to accommodate you (which really isn't enough and then I feel worse for not eating the special food they ordered for me)

It will get better. Try not to let the ignorant bring you down. Teach your closest friends slowly, one at a time. 

Good luck!

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We all deal with this to some degree, my reactions are so bad I would not enter a pizzeria for fear of the flour in the air (I have reacted to inhaled flour on multiple occasions). But yes people do not under stand things unless they themselves have experienced or they some come how have a relations to it. Most people who consider wheat a daily thing in their diet find it very weird and unsettling that it could have a negative health reaction on someone and sorta scuff at it or go into a denial state it can be dangerous to anyone.  I found having to put perspective applications to explanations to family helped trying to explain how it it is a autoimmune disease, and even using extreme peanut allergies as a comparison to dumb it down for people.      You just have to learn to ignore people about these issues. One thing about this disease is it will show you who your true friends are and help you weed out the unsupportive people in your life. It also makes you a damn good cook if you start cooking for yourself >.> at 27 I have more cooking experience then most people twice my age.

I am recalling a rant of multiple quote from others I posted a while back that will touch off for you included are quotes from several of our members and I posted this to my personal FB page

"My issue Celiac Disease, people tend to think that it is a diet related issue and just gives us a stomach ache, well its not, A LITTLE IS NOT ALRIGHT! Celiac disease is an autoimmune condition and that means the bodies own immune system attacks itself. So anytime we eat even a tiny amount of gluten, the same immune system that defends us from germs and pathogens springs into action to protect us from the gluten. But the attack on the gluten is misdirected to our own body tissues instead (In my case my nervous system, brain, and intestines). The immune system doesn't give up fighting invaders quickly, it will continue making new antibodies and killing them there gluten critters until the last vestige of the horse they rode in on is gone. And then it may keep producing attacking antibodies for a few weeks or months later just in case. When the immune system can find and destroy germs that are too small to be seen with the naked eye, you know it can react to a tiny crumb of gluten. We could feel the effects within hours or we could feel them weeks to MONTHS after a cross contamination exposure (dipping a wooden spoon from a pot of whole wheat pasta water into a gluten-free pasta pot). We can develop other AI issues and those that occur most often are Hashimoto's Thyroiditis and Type 1 Diabetes and could even develop cancer. Gluten as we mean it in relation to celiac disease is a protein molecule in wheat, rye and barley, and products derived from these such as Malt, Maltodextrin, Vinegar, Food Starches, the list goes on as to what all it can be found in by other names. And think of it like this, it is a protein, like your blood, do you think you can clean up blood good enough that it can not be swabbed for and picked up by a forensic team? Gluten is the same way with cleaning up, almost impossible to clean a porous surface and just wiping it off does not work, you have no idea how stressful this can be when you get randomly sick do to cross contamination everywhere."

My issues started with my own parents being in denial about it, and not comprehending my sensitivity when I was living with them years ago. I had a bunch of mental traumas and issues with family and friends. I lost many friends during this cycle and alienated me from everyone due to the way I was acting with my neurological/brain issues that celiac caused for me when I got glutened.

On  a side note welcome to the forums, and since your new to the diet be sure to check out the newbie 101 section. On going out to places to eat, I normally bring my own prefixed meal and just order water. Most places are alright with this, and I normally also but a side of steamed veggies or salad informing them of my disease and that my food has to be gluten free. NOTE there is a app for the phone called FindMeGlutenFree that helps you find local places, always check reviews on the places, call ahead and ask about how they fix stuff, inform the waiter/manager about your food issues to make sure they get it right. >.> I recently invested in a gluten test kit so I can do this more often, as most cases I never eat out.

If you have any other health issues, dietary issues, or something come up you do not understand feel free to ask on the forums the community here is very supportive like a family. They will help you with anything and feel free to be open, about your issues.

Helpful Links

https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

^Newbie 101

https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/

^List foods, places to get them, and ways to order them via UPC or online.

 

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Hi WW,

1 hour ago, weekendwarrior said:

I'm going on week 3 since being diagnosed, and I'm still suffering inflammation symptoms and deep muscle pain.

If that wasn't hard enough, I am already sick of having the "wait, you can't eat ANY wheat? Like no bread? No Pizza?" conversations.

...

Hi WW,

You may not want to eat wheat but you can eat pizza, donuts, bread and pretzels, cereal etc that are gf.  There are GF mixes also, to make your own bread, cakes, brownies, cookies etc at home.  I suggest you take it easy on those kinds of food for a while though, as they can make healing and recovery slower IMHO.

To be honest, most people are pretty clueless about what gluten is, and what it takes to live with celiac disease.  I doubt you would have wanted to learn about celiac if you weren't living with it yourself.  It's just human nature to be somewhat dismissive about things we don't understand.

Then you get the people who want to be helpful but have no clue.  Like the time I went to an IHOP pancake place and asked the young waiter if they had anything gf.  After he went and checked with the kitchen he came back and announced all their pancakes are GF!   How wonderful! :)  But obviously not true also. :(

We may have to become our own cheering section because people around us are not really going to get issues like cross contamination, or immune reactions, or ongoing pain that they can't imagine.  But we know that every time we avoid any little bit of gluten getting in our diets, it is preventing damage to our bodies.  And that is a great thing we are doing for ourselves!

Basically, the world is full of hose-head gluten eaters who eat a lot of crappy food that is bad for them.  Processed foods full of chemical additives and sugar and junk that isn't really good for anyone.  And they think that is not only ok but the right way to eat!  And if you go against their race to oblivion they think you are odd!

Well, there is a reason all kinds of conditions like diabetes, and heart failure and arthritis and such have increased in recent years.  And what people choose to eat has quite a bit to do with it IMHO.

We not only can do better with our diet, but we have to do better.  Our friends and loved ones would probably be healthier and happier if they ate gf like we do.  But some people would rather be sick than change their diets.  Not that there's anything wrong with that! (aka Seinfeld) :)

Edited by GFinDC
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When you go to a party, there are people there with medical diets, you just don't notice, because they are quiet about it. In college there was a guy that didn't drink. He hung out in bars just like everyone else, he just didn't drink anything other than water. I didn't know until he told me he didn't drink. And he wasn't trying to hide it. He just didn't talk about it.

I had been on a highly restrictive medical diet for many years before finding out about the Celiac thing. It's easier for me than others, because my social life is more outdoor activities, and less restaurants and parties. But when going to a dinner party I find out what they are serving and bring my own similar equivalent. If at a party party I bring my own chips and water. If someone offers me something I smile and say "no thanks". If they insist I say "sorry can't, medical diet". If they ask for more details, most of the time I say "the older you get, the more breaks" and then change the subject. There's more to life than medical issues.

Now that I'm trying to stay on a liquid diet to finish up healing I'm skipping the dinner parties. In a few months I'll be able to go back to bringing equivalents with me and I'll start going again.

As for gluten jokes. I had some friends over at my place for a ski vacation. They know I'll only be eating my own food. My friend goes out for burritos and says "I'll get you a burrito and make sure it has gluten in it". I say "I want extra gluten!". LOL. (No she didn't get me a burrito, just joking). I thought it was funny.

 

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By the way, there is another forum thread with the exact same title.  Strange world eh?

Sometimes it's best to laugh at these things though.  Cause there ain't nothing else to do about it! :)

This funny pages link is the original thread, now closed due to excessive size.  The follow on thread is around somewhere.  The new funny pages thread has been pretty inactive  for a while.  Maybe it's not PC to laugh anymore? :(

 

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Thank you everyone! Those are all great tips! I am usually the person who's pretty jovial about things, but this has really struck a nerve with me apparently. 

I'm trying to get into the groove of this lifestyle change, get past the symptoms, hope things start healing, and then move forward with a new outlook on things. Some days I wake up really to go and confident, and other days I wake up in pain, exhausted and broken. So any light that's poked at it right now, is hard for me to stomach because I'm still learning day by day and trying to get my wits about what's going on.

Thank you all so much for your answers, it's really comforting to know there are people that I can talk to who 100% understand my situation. 

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I don't have much encouragement, but at least I can say I know how you feel and I would like to go smack all those people at your party. Lol. I actually experience a lot of anger over the way other people react. My intestinal reactions to gluten ingestion are pretty severe (as are most people's on this thread). It was bad enough in college that I felt like I didn't  want to keep living if it was going to keep happening. The gluten free diet stopped all those symptoms and "intestinal/digestive attacks" for me, and yet it's constantly being mocked in the (American) media, which trickles down in the way people around you act. Like we're just these self-indulgent whackos. And people...yeah I don't even want to get into it right now. Unfortunately I was "glutened" recently (on Wednesday) and I still feel awful physically so I think it just makes me more sad how people like to put it down, or act like you're overreacting, or act like they know better, or act like you could just "eat a little" instead of being so strict, as if you're choosing to make your life WAY more difficult for fun and not out of medical necessity. Following the gluten free diet, trying to avoid cross contamination, makes something most people take for granted (eating) a daily challenge!  As far as when it comes to eating outside your own kitchen (where you can make your own food)...but even then, you have to be stressed about grocery stores, buying ingredients. Even getting prescription medications can be a challenge, have to watch for gluten in medicine, too....anyway, all that is no easy (or cheap) task. It's time consuming and frustrating to say the least. 

I guess, to me, enduring the ever-present challenge of eating gluten free is of course worth it given the alternative. But it's difficult, and we don't have a choice. Trust us, we'd rather not have to live this way, either. But the alternative is getting really, really, sick and increasing the risk for other illness...etc ad infinitum. I already have another autoimmune disorder and recently low b12 was added to my list of magic.

So for me, to have to deal with people's BS on top of all that gets me very angry. Verrrry angry. I need anger management on it or something, I think. I wish I had a better way of letting the BS of others regarding this roll off my back. I guess we just have to accept that people will not understand and will judge you and make jokes or think they know better and that you're choosing to be difficult....just accept that's a reality, even though it's completely wrong, and they're being diminutive, patronizing, ignorant, narrow-minded, arrogant, stubborn and rude.

I don't think you're skin thinned. And, I just "celebrated" my 10 year "anniversary" of being gluten free this January. 10 years! So uh, i can't say it's gotten easier in my experience. I started before it was considered a whole "fad" thing, so that added anger about it for me over the five years. 

It just causes so much frustration and is nothing any of us would VOLUNTARILY want to deal with. So why do people need to give us  s**t on top of that, like it's our choice?? How does that even make sense? What has really grated on me over the past 10 years IS other people's reactions, more than the whole difficult challenge of staying completely gluten free itself.

Anyway I need to go take my wailing, wrecked, inflamed intestines off to bed now...

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I know of celiacs who don't help matters because they don't play by the rules and will tell people 'I can get away with eating a bit of gluten' and that kind of thing. I hear it so often. Things like, 'I knew a celiac but he/she grew out of it'.   That doesn't help our cause at all.  So I guess it makes things a bit difficult for onlookers who are trying to figure this all out.

I feel sometimes like I'm an ambassador for the cause.  It is exhausting at times! 

Today I went out to coffee with my daughter. We ordered some gluten free fruit and sultana cake! Amazing! Made in a gluten free facility! Straight out of the box.  All certified.  I asked the lady behind the counter if she could please be sure to use a clean knife to cut it as the previous time I'd gone to the cafe a waiter had used the same knife as a glutenous coffee cake and there were loads of gluten crumbs all over my cake.:(

To which she replied, 'Well we can't ensure that this cafe is gluten free because there are gluten containing ingredients around'.   She was absolutely right, but I'd have really liked the reply 'Oh, I'll make sure that my staff know about that for future reference'.  Fancy going to all that trouble but to fall at the last post.

It's difficult. 

 

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It is difficult! And cristiana, I know what you mean about other celiacs or gluten intolerants poking holes in our credibility. They'll claim to need to be gluten free but then will go and eat some cookies occasionally. I mean ...I know one who was gluten intolerant (lots of food intolerances actually) and she'd still eat gluten in front of me sometimes. On the one hand I liked being around her since at least she tolerated/understood my problem, but still, it made me cringe. Then even last year (shoot, two years ago now) in Paris I was with someone who supposedly is gluten intolerant who went ahead and ate a whole basket of bread...I was like...uuuh. She said she had some muscle soreness after but...yeah. I was inwardly horrified, I would NEVER do that for my own self! That would be horrific. It'd be like consciously choosing to eat meat with salmonella or e.coli. So I suppose you're right. She didn't even seem to get my paranoia over cross contamination in their tiny kitchens.

But for me, those people...it's their funerals. I don't get it for myself, I would never do that, I'm still in pain from my accidental glutening this past Wednesday...I feel like my intestines have been beat up and eating anything is like gently swallowing teensy bits of glass along with it. I hope it gets better soon. But anyway...to me, that's their business, their bodies. So it's still unfortunate to me that the people who have NO experience, personally, with this ailment are quick, so quick to jump on those outliers who fudge the rules as the "real" ones and we (the serious ones) as the ones who are overreacting or faking. So, because some people "cheat"....that automatically must mean the entire thing is a farce. Riight. I just wish people would give other people the benefit of the doubt. Is that so hard? If someone says "I have a problem. I can not do xyz." LEAVE IT ALONE. JUST GO WITH IT. ARGHGHGHGH. NO ONE WANTS YOUR DAMN OPINIONS OR THOUGHTS OR LECTURES ON SOMETHING YOU KNOW NOTHING ABOUT, BUT I LIVE WITH DAILLLLY. ok

OMG cutting the gluten free cake with a gluten covered knife. :(  You see, this, this is the reason we have to be so "paranoid" all the time, which people sometimes regard as attention-seeking behavior. It's not, though. For the millionth time, I'd be MORE than happy if I didn't have to do ANY of this.  But we know the truth...if we're not hyper-vigilant....if we let our guard down even a little....a disaster is waiting to happen.

 

 

 

 

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12 hours ago, DownWithGluten said:

OMG cutting the gluten free cake with a gluten covered knife. :(

 

 

 

This has happened to me so many times and it is the worst. I was at a potluck dinner (didn't plan on eating anything, ate beforehand) and a friend brought me a store-bought gluten-free cake from a reputable company. It looked fantastic and I was so grateful because I am a poor grad student and don't often indulge in such luxuries. Then it got plonked on the serving plate with the regular glutenous cake. Super awkward.

Can't say I can offer any advice, but my deepest sympathies. I think the trouble is that many people think that celiac is like lactose intolerance, where consuming a bit (or even a lot) of lactose is not ideal but not really all that harmful. I try to educate people as I go, but it's definitely an uphill battle. I live in the PNW, and lots of cafes have "gluten-free" cookies unwrapped, sitting beside regular baked goods, likely made in-house in a shared bakery facility. I think these sort of situations add to people's confusion too.

 

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Can really identify with this as I had similarly nasty comments early on too, sad reality is people pick on anything that makes you different or what can be seen as a weakness.

Those comments cut even deeper in the early stages when you feel awful and people are just rubbing it in, especially as this condition comes on through no fault of our own (which is what I find hard to take personally).

All you can do is cut those people out your life as you don't need that extra aggravation on top of what's a restrictive and frankly horrible lifestyle change. You certainly find out who your friends are and conversely who needs kicking to the kerb asap.

Karma gets some of the nasty ones back eventually I guess if you believe in that...

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    • OK good to know. Thanks for the tip
    • This is an old thread but I just need to get this out of my system! I am just so fed up with how every caregiver has been dealing with me case. My enzymes have been abnormal and my doc continuously asks me if I'm binge drinking - I literally haven't had a sip of alcohol in 2 years. Never been a heavy drinker.  She also tells me that all of my troubling neurological symptoms - sensory hypersensitivity, tinnitus, jaw/pain, headaches, fatigue, teeth grinding, nightmares, and EPILEPSY are "all in my head." ??? When my GI symptoms first started, she tried pushing acid reflux medications on me, even though Ive never dealt with heartburn. She was confused and aggressively asked, "Then what do you want!???"... um, to figure out the root of my issues? Some diagnostics? Gosh... When I told her my symptoms had decreased on a low gluten diet and I was interested in being tested for celiac, she asked me "why bother? if you're feeling better, just eat less gluten" - not understanding the value of a formal diagnosis.   I just wish I had some other disease that was more medically recognized and understood. Its so demeaning, and I try to see my doctors as little as possible now. I do my own research on PubMED and google scholar. And I don't even think I've had it the worst- I'm totally appalled by all of the crap I've read on this thread. Anyways, I'm done ranting.
    • Has your Dr mention Microscopic Colitis at all.  You mentioned taking PPI's.  I took them for over a year - 2 morning and 2 night.  I think that's how I ended up with Microscopic Colitis.  I don't think I have Celiac disease but do think I am very sensitive to gluten.  My GI dr. told me to eat whatever I want , but have learned from research, partly from microscopiccolitis.org that almost everyone with MC is sensitive to gluten and most to dairy and some to soy.  I know some on this site don't agree with some of what is said on that site, but they are really good people who want to help.  Just said all that to say, maybe you should ask your GI if you could have MC.  Hope you get it all figured out.  I know the frustration.  It can take over your life.
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