As I am now on day nine of feeling like absolute dog poop (maybe I SHOULD have gotten that flu shot after all), it’s a good a day as any to post a celiac rant. It’s been awhile since I posted one of these bad boys. This one came in last week, and oh boy, she’s a doozy.
So my fellow celiac…take it away.
Dude Note: Rated R for mature. Parental guidance is suggested.
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First of all this is awesome! So thanks for doing this!
Second…here’s my rant.
For years.. Wether it’s my parents, siblings, best friends or significant others all I have heard is how frustrating my celiac disease is for them… Are you fucking kidding me?
My apologies that my disease is an inconvenience to other people… Please let me cry for you BECAUSE I’M THE ONE IN ACTUAL PAIN….
Whenever I go to family dinners I ask my mom about all the ingredients she puts in the food and double check everything and she has the audacity to tell me how annoying I am and having to cook this way and buy double of everything is reading taxing. Thanks.
My dad whenever he comes to visit me in the city asks where I want to eat; naturally I have a gluten-free restaurant in mind and his response is “no I don’t want to drive in that direction” and then complains about not wanting to go to the areas of town where the restaurants I suggest are and then gets mad at me for being the difficult one.
And every boyfriend I have ever had just doesn’t seem to understand why after being glutened I don’t want to have sex. Because yes I really want to have sex while feeling like I have to puke/constipated/need to poop/burp/fart/throbbing headache whatever it is, because isn’t that when everyone feels their sexiest???
And then they tell me how my problems are severely affecting our relationship and they don’t know what to do and blah blah. I get it, it sucks and I’m sorry. Genuinely sorry because don’t you think I would love to be able to engage in great sex all the time too? Don’t you think I would love to be able to travel anywhere with you without having to be anal about every little tiny detail.
It’s like everyone acts as though this isn’t even more frustrating for me. I mean I spent 20 years not knowing what was wrong with me. My childhood was ruined, so many relationships ruined, so many things I couldn’t do because I had no idea what was wrong with me and was terrified to live. So I’m sorry that my 20 years of misery and hating myself was such an inconvenience on everyone.
My apologies that now that I’ve known for only a year what the name of this is and I am trying really hard and doing my best to make it work and understand this and live a close to normal life as possible. And that sometimes you have to see what an abnormal lifestyle looks like.
I know that medical issues have an affect on family and loved ones. But please kindly go fuck yourself for acting as though you are struggling more than I am. I’m a fucking celiac not an alcoholic or someone with cancer; my problem is not affecting you the way people who’s lives are touched by those terrible tragedies. So please stop being so damn dramatic.
Sincerely,
Fed up with people who don’t have a clue.
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I love this rant because it’s not a “WHY ME” rant, but more of a “hey…I know it’s not the end of the world, but cut me some friggin’ slack while I try to adapt to this new life” rant.
So to this person’s parents, I say this: You are not being nice. You are not being understanding. And you are not LISTENING. Your kid has an autoimmune dammit. Educate yourself a bit and put yourself in her shoes.
As for the boyfriends who want sex…well, who doesn’t? But take it from me…when you’re feeling like hell and struggling with celiac, it’s not exactly the first thing on our mind. Rent a movie. It won’t kill ya.
Need to Vent?
I hate celiac. You hate celiac. We all hate celiac.
With all that pent up anger, people need a place to vent.
Well…I invite you to lie on the Dude’s couch (figuratively speaking) and spew away.
There’s just one rule: Once you’re done venting, you need to move forward and put the negative vibes on the back burner. Positive energy brings positive results.
Don’t you feel better already??
Sounds like some people in this woman’s life need to learn: “Comfort In, Dump Out.”
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
Thank you for sharing that. Wow, that article totally nailed it! Especially the Dump Out part because that works on the both the figurative and literal level 🙂 ! Of course, while celiac is zero fun, illnesses like breast cancer and an aneurysm really put it in perspective. But Dude has written before about how we all handle personal blows (celiac diagnosis) and we are still allowed to get frustrated at our disease and at how people handle OUR disease.
I feel for the ranter. Dating with celiac is such a challenge. You have to find someone willing to “put up with” your disease. I was lucky enough to find someone, but after 3.5 years, he mentioned the other day that he was tired of eating at the same restaurants with me. That was when I decided I need to start a significant other of celiac restaurant club (or something) so he can enjoy new places, though still not with me (the celiacs and I can enjoy a GF meal at a trusted place). But yes, it does make dating even more challenging, however the right person won’t mind it [for the first 3.5 years 😉 ] Good luck and if you’re getting glutened on dates, it could be cross contamination through kissing. I never kiss someone’s mouth if they’ve had gluten without brushing or mouth washing first.
Dude: First of all, Happy New Year! I hope Mrs. Dude is well and healthy and the whole house GF experiment is helping! BUT where is the addition problem to make sure I’m not a robot?
My New Year’s gift to you 😉
Love this article! I was going to post it, but you beat me to it.
Currently my family is dealing with something way more serious than Celiac and I was introduced to this ring theory.
It is 1000% spot on for our situation, but also for Celiac.
Good article. Thanks for sharing.
I have one thing to say: I dated someone for a lot of my thirties who was not patient with my having celiac. It’s not worth it, if they don’t respect the disease.
I’m not crazy and sick all the time, like I was in my thirties; if they don’t take celiac seriously, you and your relationship are not going to last.
If they don’t respect the disease, they don’t respect you. End of story.
Having a supportive partner makes a big difference. I have been with guys who have made me feel like I was imagining all my symptoms or treated me like I was a hypochondriac. Those people are very selfish and could care less about your well being. Stay away from toxic people and instead, surround yourself with supportive people. If they are not supportive, you do not need them in your life. This disease is difficult enough without people who are intentionally trying to sabotage your health. A real friend would believe you, help you and be there when you need help.
That used to happen to me a lot until I decided to just make the person/persons causing a fuss really uncomfortable by saying ‘No thanks, I don’t feel like getting violent diarrhoea today!’.
Seems to work, because they have been ever so nice since 🙂
I say…
You know that scene in Willy Wonka where the girl eats the gum and blows up into a giant blueberry?
… they say uh huh.
I say…
It is nothing like that.
It kinda kills the whole line of questioning.
Subtle 😉
I give that a “10” in the snappy come back olympics. Yay Chloe!
Great rant because many of us have been there and had this very experience with friends and relatives. Dude, love your Dude note: “There’s just one rule: Once you’re done venting, you need to move forward and put the negative vibes on the back burner. Positive energy brings positive results.” This should be at the top of the page in bold letters. Getting it off your chest is important (particularly to those family members who are being so inconsiderate). But, I’ve learned there are some people who just can’t be nice, will never get it and are incapable of empathy.
I’ll agree on the surface of Dude’s feeling that we have to remain positive, but, Damn it’s hard, when Celiac disease slaps you in the face so many times a day. “Hey everyone, I’m getting together an order for lunch. Crystal, do you want some thing from (insert almost any fast food).” “No thanks” ,”Aw, come on, we are all ordering ” “No, thanks” “Why not,” “I can’t eat that food” “why” “I have a food “allergy” (even though I’ve told you a thousand times already {and you are an RN, duh} that I have Celiac disease, you seem to understand allergy better , because you are either too dense or too self absorbed to understand or care). Or when ordering at a restaurant, “Please ask the chef to take precautions with cross-contamination of gluten with my food,” (Fleeting blank stare, followed by unsuccessful attempt to not roll eyes) “I sure will” (weak smile) “Can I bring you some bread while you wait? ” (Me, fleeting blank stare and unsuccessful attempt to not roll eyes-but turning head just in time, and thinking, OH MY HEAVENS it’s Russian Roullette again!) or, The Inquisitive waitress, who I CAN tolerate a bit better, you know the one who wants to know what happens when I eat gluten, but really I don’t relish the act of describing abdominal bloating cramping diarrhea, constipation, headaches,vomiting and noxious farts right before I and any companions (who are typically family members and are, I promise you well acquainted with all the consequences of Mom being glutened!- if there were an Olympic event for fastest window roll downs when I say, ” Oh,no, get me home” after leaving a restaurant I know my children would all qualify!) Anyway, that’s my negative, so I’ll try to stay on the positive a while now!
Thanks. I really try to make it a point not to wallow in negativity. It just serves no purpose. But I’m all for a good rant once in awhile.
This article says it perfectly. Especially the sentence “But please kindly go fuck yourself for acting as though you are struggling more than I am. ” I can’t tell you how mad it makes me when someone says “I know that your food intolerances suck.” NO YOU DON’T. You are just inconvenienced by it but I’m the one dealing with it face to face every day while you still eat whatever you want.
Any time the word kindly is used with the eff word always makes me giggle.
Kind of like a passing liaison with the man on the street, lol!
So happy to read this. Being diagnosed before you are in a life long partnership SUUUUUUCKS.
And, this year… I got invited to Christmas at 3pm. Everyone was onto dessert by then because food was served at about 1:30pm. WTF? :-/ My intro when I walked in… “Hey, this S! Keep her away from the glutenful desserts. over here. … hehehe.” To 10 strangers. Holy mother of baby Jesus, my identity is not a damn reaction to a turnover!!!!!
The day after, I got to go to a dinner with 20 new people, some were gluten free but can handle contamination… and so I brought my own food. You know what they said? “That looks awesome. What is it?” And, then the conversation moved the f*uck on to normally socially awkward stuff when you are with 20 new people. We also all went out to the street to watch the space station pass overhead. So freakin cool.
I couldn’t have written this any better. You nailed it. I hope 2015 brings you improved health and happiness!
LOL totally awesome. I feel the same way. Celiac is a pain in the ass and we are not “picky” or “high maintenance”. And yes I would love to go to McDonalds with my grand daughter and share chicken nuggets. When I was first diagnosed, I wanted to say F–k you I’m Celiac.
I hate to hear this rants. I feel so bad for you that you don’t have the support of your family and any guy you have dated. I just don’t understand not having parents that drop everything and make their child feel better. On the side of the guys there are great ones out there. My boyfriend is proof. He will eat what I eat, so there is no contamination, and if I ever get sick he is the first person to take care of me. Don’t give up guys there are some genuine guy out there who will care for you and give you everything. Keep your head up. After having this disease for 13 years I can say that it gets easier. Just don’t give up!
Wow. She has every right to rant. Hope she has ranted to the people in her life who are being so selfish and unsupportive of the problems we face when trying to live in a world full of “normals”. She certainly needs to. And if that does no good, then maybe she could calmly explain how their attitudes hurt her. As everyone who reads this blog well knows, having Celiac isn’t all about food. It’s about feeling like you are different … and not in a good way … like you are a burden, like you are left out, like maybe you came from a different planet. So yeah, rant when you need to but, also, maybe find a support group where you can get assistance in learning how to effectively communicate your needs to those you love and who love you. You deserve to have understanding of your disease. Do whatever you need to do to get it.
I can relate….. (sigh)
I just turned 23 and and have had the diagnosis for almost 2 years now, finally healing and getting things under control. First year after diagnosis was a mad scramble finding out what works and what doesn’t, what’s contaminated and what’s not, and replacing everything in my kitchen. All after having to leave my friends and work in beautiful California to comeback to the dreaded “Chi-beria”.
I’ve been blessed with a supportive family, but that’s a double edge sword when their intentions aren’t as good as their intelligence… Luckily they are willing to learn
I really feel for you, but there’s been no dating for me, at least people want to try and have sex with you 🙂
all kidding aside ” just doesn’t seem to understand why after being glutened I don’t want to have sex. Because yes I really want to have sex while feeling like I have to puke/constipated/need to poop/burp/fart/throbbing headache whatever it is, because isn’t that when everyone feels their sexiest???”
really hit it home for me and totally reflects being a young 20 something and having celiac
Wow! This Celiac said exactly what we all feel at times! It is frustrating to have to be on high alert all of the time and it is inconvenient – for us Celiacs! What makes everything so much more frustrating is when the people closest to us react like this woman’s family and significant others do. If they think it sucks and is inconvenient for THEM, they should try walking in our gluten free shoes for a day. Somehow, they still wouldn’t get it. I have other members in my extended family who also have Celiac. When we have big family events on that side of the family the four of us gravitate toward one another. That is when I feel like I can relax a bit and be “normal”. Because we clearly mark and keep the gluten free food separate from everyone else’s good and we can relax, enjoy and know that we’re safe.
I feel bad for you young singles because it must be really hard. I’m so lucky that my son (who can’t eat gluten or dairy) found a partner who doesn’t really care what they eat. My friends don’t care too much either because I’m always the one making concessions, which usually means going where they want and just ordering salad!
But my family!! They’re the worst. First I get the “how could this suddenly happen after 57 years?” part. Even my other son thinks it’s a crock. Christmas dinner was a joke because the only thing I could eat was the turkey. I find myself toting hummus and rice crackers to every family event, or eating beforehand, but there’s always an undercurrent implying that I made this all up to get attention. As if I would deny myself French bread and butter to get attention.
Usually I can get through something (like a family trip out to get coffee and beignets) by remembering the hundreds of times I’ve had beignets and how wonderful they taste. Sometimes I just want to eat them and to hell with it. Then I remember the ten days of not being able to wake up (no stomach issues for me) and I have to admit it’s not worth it. But it’s hard. You’re all showing me that if I were 40 years younger, it would be so much harder.
So sorry that your family isn’t understanding it– have they seen you so sick? I feel like that usually changes opinions. Dating with celiac can be really hard– especially when trying to be easy going and letting your date pick a restaurant when, in reality, that’s just not really possible. I feel ya girl, and am hoping your friends and fam will let you adjust to this life with a little grace! In the meantime, you’ve got all of us to lean on!
I totally get this rant. Imagine my surprise when my family seemed to care less about my diet needs at gatherings after being diagnosed with celiac. It’s a shock and unfortunately some of us have more conscientious families than others. My way of dealing with is bringing my own food to events and not relying on others to make gluten free food for me. I learned the hard way that even if they try, chances are something will get cross-contaminated. If family members are visiting it may be easier to just make food for them instead of going out. Significant others can be a real drain emotionally when they don’t support your needs. This disease has also put a huge strain on my relationship. Anyone with celiac disease that has a significant other who makes huge changes to help adapt to the lifestyle with little prompting is one lucky person. It’s hard to come by and most people don’t get it, or don’t take the time & effort to truly understand the disease.
Amen, sister!
Ok, since this is rated R, I am going to come out and say exactly what I’m thinking: you need to stop hanging out with assholes. Even if they are related to you – if they cannot be bothered to put your health and well being before their comfort, if they cannot stop a second to pull their heads out of their backside and consider “I care about her, let me do this even if it’s a pain”, then just don’t spend time with them until they decide to change that.
I hope you find someone less selfish who sees you for you, appreciates you and doesn’t make you feel like supporting you is soooooo hard on them. (Honestly, people are unbelievable.)
I wish I could give you a hug, but this is the internet and you are complete stranger, so… I feel you. You deserve better, and I hope you get it!
Reading this rant makes me realize how lucky I am to have my husband. When we first found out about my Celiac he immediately offered to go gluten free with me but I stopped him bc I didn’t want my disease to inconvenience him. It only took one time for me to get sick from cross contamination for him to insist on going gluten free no matter if I wanted him to or not. 🙂
Well put! Thank you so much for this post!
I find it really rather insulting when others find the eating part annoying for them, especially when they act as if the moment I changed my diet was when I got sick. I think everyone knows what I mean.
I’m not into sob stories so I don’t try to inform them that , “No, I’m not sick now! I’m actually better! That part of my life where you thought I was just lazy and annoying, and wrecking my life? Yeah, I actually didn’t want that to happen! Why did you scoff and give up on me when I actually needed you?” I never bother saying it ’cause it wouldn’t change a thing really. I’ve been branded the black sheep of the family, and Yay! Now I’m the fussy food obsessed black sheep, but I have my health back!
I agree, it is better to just put it out there, and focus on the positives.
Thanks for voicing what we all feel sometimes!
I never had a problem with my family complaining about my Celiac Disease … they have it as well … my mother, younger sister, younger brother (before he passed … celiacs have 5x greater risk for adenocarcinomas), younger brothers grandchild (finally got dx after a few years of nausea vomiting diarrhea failure to thrive), a maternal aunt, a few cousins on the maternal side of the family. The rest of the extended family can eat whatever they want when in public, but always make accommodations at family gatherings, even experimenting with GF recipes.
My co-workers, however, just haven’t got it yet.
thank you thank you thank you for posting that! nailed it…seriously. this disease sucks. no its not as bad as some, but its still a disease and its still frustrating as all get out. and no one quite understands it unless they’ve lived with it! im so glad i found your page and im so glad there are so many supportive celiac communities online! i just got diagnosed two weeks ago and im still trying to get a handle on it all.
I too love this rant and can completely relate. There are 2 types of people in this world, good hearted caring people and douches. If a mate is “put-off” by CD or if CD is a deal breaker, it is good to know now that he/she is a douche. Because God forbid something worse (cancer, paralysis, miscarriage, etc.) happens down the road, he/she would bolt.
My ex-husband of nearly 20 years seen my excruciating pains, bloatings, ER runs, countless non-caring doctors and endless hours in the bathroom prior to diagnosis and still did not believe it was gluten and that it was all “hormones”. UGH!! We ended up in marriage counseling and the counselor informed me that he too had a wheat allergy and I quote “I find it does not give me any problems as long as I toast the bread first”.. or the boss who said “have you tried eating it lately?, you may have outgrown in”…Still my favorite is the waitress who brought me a separate “special” bread plate and ramekin of butter so my dinner rolls would not be contaminated. OMG… People like them are the reason seemingly normal people go postal. Friends and family are not different. While I would not wish this on my worst enemy, it would be nice if for 1 hour all the naysayers and quacks that call themselves physicians could experience what those with CD do… then they would understand and quick complaining about their inconvenience.
But there is hope. My new spouse is a God send. While dating he read everything he could on CD. One cross contamination is all it took, now he is even more neurotic than I am about the food I am served. He chooses to eat and cook GF at home so there is no chance of contamination.
My god! Why are people suffering so much? Literally the only people in my life who have been anything less than amazing are one of my friends, who saw how much I’m suffering to be diagnosed (my biopsy is March 31) and told me to just go without the diagnosis because it’s not worth the pain, and my dad, who won’t make inclusive meals for me whenever I’m at his house. I don’t understand why people are so horrible to the rest of you. What the heck?