There are currently 515 emails in my inbox. Yeah…I’m a big backlogged.
Buried within them are some nice passionate celiac rants that the community has shared with me.
Now I’m going to share them with you.
See how easy this is??
I am 22 years old and I got diagnosed with Celiac Disease when I was 19. I lived years with many unexplained and diagnosed illnesses and development issues. In school I was bullied for being the shortest and smallest, having big dark bags under my eyes, extremely pale skin for being part Native American; also still do get bullied because I’m still not finished with puberty. I also had many unexplained mental health issues that were just covered with drugs but never helped. Also had gall bladder issues, skin problems, frequent infections, pneumonia once a year and mono twice a year. I was a freaking wreck. I was always named “The Problem Child” growing up. Something was always wrong with me and I could never maintain friendships and even boyfriends.
Now that I’m following my diet like I should, I am feeling much better, but relationships are getting worse for me. I love reading your rants because like most Celiacs, I’ve experienced the same crap. I can’t post anything on facebook about the food I am eating or preparing in the dehydrator without someone throwing a fit about it. Telling me “No one cares. Stop bitching and do something about your disease. There is always something wrong with you. No one gives a sh*t about your fake disease you’re just trying to get attention.”
And of course when I order something to eat at school or at a restaurant, I get told “Oh, you’re one of THOSE people.” and “You don’t need to lose weight with that stupid diet, you are way too skinny.” Well maybe I’m skinny because I’m sick? Anyway, as far as the posting on facebook goes, god forbid I post something about food and not the usual pictures and posts of me getting wasted at parties and pictures of a joint I just rolled. And God forbid I talk about eating healthy and sharing with my friends and family members that have the same illness as I do! We just don’t get a break. And I’m tired of being silenced about this disease like it’s some kind of freaking joke. If they can post pictures of them getting wasted and high, why can’t I post pictures of the gluten free pizza I had at dominos? I don’t get it.
I’m so tired of being told to shut up and no one cares. And I’m also tired of being bullied even in adulthood for having flawed features all because of my disease.
Dude Note: It’s official. I hate people.
I have been seeing the same Dr for years. Every year same thing…try to lose weight and you will feel better. Long story short he retired and I got real sick, lost 21 lbs in a little over two weeks. Along with a host of other issues, I was recently diagnosed with Addison’s Disease. In searching for the sudden onset of adrenal crisis, I was informed I have Celiac disease, along with corn and soy allergies. I am now 22 days gluten free, and on meds and starting to feel more human then I’ve felt in years. For those of you that are still thinking Celiac Disease is something you can deal with in passing or just ignore …please reread this site. My daughter was diagnosed two years ago. Still a struggle for her every inch of the way.
Dude Note: I hate a lazy doctors too. And on a side note, my mom has Addison’s disease. They first put her in a psych ward thinking she was going crazy. Thankfully, there was ONE doctor there who recognized the symptoms.
My least favorite people are the ones who have THIS reaction to finding out I have celiac disease:
“Oh my god, I like, couldn’t LIVE without bread. Like seriously. Life wouldn’t be worth living.”
*smacks head against keyboard*
I have lost count of the number of times someone has said that to me.
Can you imagine going up to someone with cancer and saying “Wow, man, I would rather die than go through radiation treatment. Like, seriously, just kill me now.”
Dude Note: Replace “bread” with “beer” and I might have a bit of understanding. But at the end of the day…it’s just food.
My family hates the fact I am coeliac.
My mother refuses to acknowledge it is genetic as ‘that would reflect badly on her’ and tells me it is ‘punishment’ for something I have done.
Luckily I am 31 or else I might take these crazies seriously.
My father orders my food at restaurants if he arrives earlier than me. It is always something breaded. He does not understand that no, I cannot have hamburgers. Or muffins. Or scones. My mother gets angry when I cannot have ‘just a bite’ of her schnitzel.
After five years my family does ‘cater’ for me at functions now. I literally get a bag of pre-washed salad thrown at me and orders ‘if you wanna be different, this is what you get’.
This is why I often pretend my phone doesn’t work.
Dude Note: Is it ok to hate parents too or is that too generic? Arghhh!!!!!
I’m sorry for this but I really need an outlet right now. Had to attend a conference today with work. Spoke to the PA arranging it with my dietary requirements. Specifically stating to her that I was aware most places provided salad as the only Gf option and if this was the case let me know as it’s the one think I really don’t like. Was told don’t worry you won’t need to bring anything gf breakfast, lunch and snacks will be provided.
Recently trying to put my trust more in people I thought great everything’s sorted. Got to conference, all pastries for breakfast, nothing gf, not even fruit. Nothing available. Thought oh well coffee break in an hour or 2. Again all regular cakes not a single gf option. Only 2 hours until lunch. PA calls me over and hands me a salad with 2 rolls of ham on top with a “feel free to help yourself to the buffet also” speech to go along with it. Not a single GF item on the buffet. So now I’m sat in my car hungry and crying into a gf cereal bar I found in my glove box.
I’m so frustrated that everywhere I go people just assume that all coeliacs like salad and I just don’t understand how they can have no other options! We’re not rabbits!!
Dude Note: Our day will come. I think.
My birthday was 6 months after I was diagnosed with celiac disease. I received a package in the mail from my in-laws. It was 3 colorful boxes stacked on one another delivered from a well known food company. When I saw those pretty boxes, I got so excited! I thought for sure they went to all the trouble to find me special gluten free birthday treats! Boy, I could not have been more wrong. The bottom box was filled with a gluten filled cake, the second box was filled with gluten cookies, but alas, not all was lost! The tiny box at the top contained one small pear. I wrote them a very nice note telling them how much I enjoyed that pear!
If that were not enough, for Christmas they sent me a box of homemade (gluten filled no doubt) Christmas cookies, that were packed so badly, when I opened it on my kitchen counter, cookie crumbs went flying. I finally had to have my husband talk to them about sending gluten in the mail. Now packages from my in-laws remain in the garage, until my husband gets home and can open them outside. That’s how it will be until I get my own HASMAT suit! I would rather they forgot my birthday all together than send me something that would make me ill.
Not to be bitchy, but my Father-in-law is a recovering alcoholic and I have seriously thought about mailing him a 5th of scotch for his birthday.
Thanks for listening Gluten Dude. Keep writing and keep inspiring! We need you to keep us motivated, keep us connected, and keep us laughing!
Dude Note: Really folks…it’s not that hard to be compassionate to a celiac. It’s a real disease, I swear. WTF??
“You look great!”
“You look amazing!” ”
“Wow, you look fabulous!”
Just a few of the things I’ve heard from friends and acquaintances that I haven’t seen in awhile. My response is usually a simple thank you, but what I would like to say is:
“Thanks! I lost so much weight I actually thought I was dying for a while there…turns out it’s Celiac disease! Or maybe it’s non-celiac-gluten-sensitivity. I probably will never get diagnosed because by the time I was so crippled with pain, constant stomach problems, severe malabsorption, diagnosed with panic disorder, and FINALLY got referred to a GI, I had already been gluten free for awhile. But the pounds just melted off! It was AWESOME!
Hey, did you know I was so fat to begin with because I had Thyroid Cancer? That shit really messes up the ol’ metabolism!
Well, me and my skinny jeans have to run and get some blood work done, then go home and cook from scratch for a few hours.
Dude Note: There is nothing better in this world than sarcasm well-played :)
I’ve been eating gluten free for about five months now after a positive celiac blood test, and I still have a lot to learn, though I can definitely say that this site and other’s like it have really helped me so far.
But what I haven’t heard anyone say yet is how freaking impossible it is to be a broke 21-year-old, living on their own, struggling with celiac disease all of the sudden.
I have a pretty good support system behind me, and after scouring the internet I know that I’m not alone in my struggle. But sometimes it can be really hard to remember it.
My mother tries to help me out every month by buying me fifty dollars or so worth of gluten free food. I appreciate it greatly, and it’s honestly more than she should be spending in the first place, and so I can’t tell her that that’s not what I need. I need healthy, fresh food to heal. But she can’t afford that, and neither can I.
My friends try to be nice and constantly invite me over to dinner, telling me that they made sure their food was gluten free. How do I tell them I can’t trust that if I haven’t seen them prepared? One friend offered me a sip of her drink one night, and foolishly I accepted, only to find out a full day of diarrhea later that it contained beer.
I can’t even began to describe how horrible it is to go out with friends and be struck by diarrhea out of the blue, and then the feeling of betrayal when they still choose to go to places all the way across town to hang out instead of the bars close by that I feel comfortable and ease out. It’s not their fault, it’s not their disease, but I still get stuck in the position where I risk going out and getting ill, or staying home alone.
Worst of all is my boyfriend. He tries to be understanding, he gives me money to buy fresh food, doesn’t mind that I insist cooking it on my own, and even offers to get me the probiotics that I desperately need. But at the end of the day he still feels that I complain and think about the whole thing way too much. He’s been suffering IBS his entire life, and doesn’t understand why I don’t just silently ‘deal with it’ like he does. But he doesn’t live with it every single day as I do.
The only way that I’ve been able to cope lately is by simply not eating. During the fall I’m in school, but in the summer I work full time, and I really can’t afford to get sick. If I get glutened, I have diarrhea for a week, usually triggered after I eat. And when I’m working all day, five or six days a week, it’s just not work it. Most days I go into work for double shifts and simply don’t eat at all until I get home at ten or eleven at night, and then eat a small meal, suffer diarrhea for an hour, and then go to bed and start it all over again.
I don’t have the time or the money to heal, I don’t have support from my doctors, and even the people who really try to help me don’t really understand.
It should all look up soon. I’ll be making more money and I’ll be working less, which affords me a little more time to focus on my health, but right now I’m having a pretty hard time of it. Being a college student living on my own was hard enough, but doing it with celiac is almost impossible.
Dude Note: It ain’t easy being us at times.
I’ve always been a small, thin woman (stunted growth from my first 11 years eating the gluten that I wasn’t supposed to), and I’ve had my own share of judgement that comes with being a woman who has to refuse foods in front of other people.
I was the new kid in high school, and the teacher of my math class loved to keep snacks and junk food around. She’d sell them out of a cabinet in the classroom, and occasionally just share something with the whole class. One day, she opened a bag of Oreos and we all sat quietly as the bag was passed around and everyone took a cookie. My face turned red as I passed the bag along without taking an Oreo.
“Are you anorexic or something?” my teacher loudly asked in front of the whole class. How does a 30-year-old woman say something like that to a 13-year-old? I was painfully shy, and so I mumbled something about being “allergic,” because at that time, no one had heard of Celiac disease in my small town, and I had a hard time explaining it.
Since I’ve had to refuse partaking in birthday cake, pizza parties and boxes of morning doughnuts, my body and my eating habits are continually under scrutiny by people whose knee-jerk reactions are to assume that I have an eating disorder. I’m thin but strong and healthy, but even as an adult, I still have this lingering self-consciousness that people will look at me and have the wrong idea about why I eat the way I do. That moment in math class with that ridiculous woman who thought it was appropriate to humiliate an adolescent girl sticks with me to this day.
Dude Note: Ok…I love teachers, but is it ok to hate this teacher?
I’ve been g-free for almost two years now and I’m used to it. Yeah, I don’t like it, I don’t think it’s fair or fun or any of that—but who does? I’ve learned to live with it and that’s what matters. Thing is, I’ve a host of other health issues, many of which have been exacerbated due to my home situation. Essentially, the only place I can get food to eat is my school. It’s well-funded—so well-funded that in the cafeteria there is a special section for kids with food issues.
They’ve recently started touting “gluten-free” food on a sign in the lunch-line, but that consists mostly of steam vegetables and the occasional bag of Udi’s bread. I can usually scrounge up an apple and a few slices of cheese, but the kitchen staff is extremely unreliable at telling me when I can or cannot eat something, and I get contaminated all the time because my food is not kept/prepared/served/sneezed on separately. To top it all off, the limited supply of actual gluten-free food (like the Udi’s, the veggies, the occasional g-free pizza) is snapped up by the myriad “gluten-free” dieters. Only three of us in the entire high school actually have celiac disease, but there are dozens of girls who go on g-free diets to lose weight. They gobble up the g-free food my school provides, leaving nothing behind but crusts and crumbs for those of us who NEED that food.
Having celiac is hard. It is no walk in the park. It is not a weight loss diet, it is not an attention-seeking behavior, it is not a choice. And I’m tired of people brushing my health off simply because I’m “copying” the celebrities. I hate to think of how many other people out there are like me—ignored or punished by mainstream society because we’re all just “making it up” or “trying to lose weight.” People need to realize that gluten issues are just as serious and life-threatening, perhaps even more so, as other issues—peanut allergies, lactose intolerance, a religious decision to not eat a particular food. Would you offer a Snicker’s bar to someone who is allergic to peanuts? How about telling a Jewish person why they’re wrong for not eating pork? Do you know anybody—no, really, ANYBODY—who would dare to secretly feed a vegan an animal product that their body can no longer process?
My point is that I’m not seeking pity, acceptance, or support; what I want—from my peers, celebrities, politicians, and ordinary people everywhere — is change.
Dude Note: Change is coming. We’re making progress. Let’s just all keep kicking some celiac ass.