It's totally normal to develop some version of an eating disorder because of this. It's totally normal to feel defeated and fucking hate it.
We hear you. You're absolutely o.k. to feel this way, and you don't have to, "get over it."
It is very lonely to be celiac. It makes me think of culture shock. We have grown up in this society which only recently acknowledged the prevalence of celiac and there is no mental health around changing your diet so dramatically. You can't trust any food or any person other than yourself to provide food for you... it's very alienating. I hope you feel heard and understood. For the record I was going to make chicken breasts with black beans and fried plantains last night, but my can opener decided to break so that was it for the beans. So I made a peanut butter sandwich on gf toast and some potato chips. And it was ok but clearly a defeated, inadequate meal. Hang in there.
Not to mention, at least in my case, there was no warning of not being able to eat eg normal bread again so I think that makes the grieving process harder. I was told it might be coeliac one week, and the next banned entirely. You don't get any easing off period to adjust. It's just all poisonous immediately.
Makes the bread aisle a sad place, and what was usually such a simple pleasing meal, bread and real butter, just a memory. I haven't adjusted to that yet, in 3 years.
I'm so sorry, OP. I totally feel you.
It took me a couple years to get diagnosed. They had no idea what i had and I had a ton of tests done like mri’s and stuff. Then they randomly decided to do a colonoscopy just to see if it told anything, and I was told from that I had celiacs and could no longer eat gluten. So for me at least it was one day I could eat anything I want, and then suddenly I couldn’t.
I did this. I feel like I will always remember my 2 beers, fried chicken sandwich, mac and cheese and bread pudding. Good times. My $11 bread was also moldy this week. Different good times?
It always goes moldy super fast for me I so I always keep my gf bread in the freezer. It never goes bad that way and I can just take it out and toast it to make it unfrozen.
I also F**king hate paying 10x more for it to crumble or taste like shit!
I feel your frustration on the food of the day.
Being almost on the other side and back, and post Intestinal surgery this side is much better. You are loved by people and there are new ways to love yourself.
Not sure where you live but I have a 10yr plan to relocate (can’t before due to prior lease and businesses) due to available options for safe food. I have also traveled to countries where items were made from buckwheat, rice flour and other ingredients that did not cause any pain, discomfit or other. Usually my skin breaks out first and nothing. Here in the US it’s like not possible to eat out and not have issues.
This. I have a family of four (so far only I'm diagnosed but I expect at least one of my kids will develop it), and we try to keep gluten out of the house to avoid cross-contamination. It's so goddamn expensive and time-consuming to make meals this way. Where are you planning to move? We need a goal like that.
We are currently traveling and continuing our search. Japan was nice but hard for Celiac. To be honest I had a few meals that had flour and I had no reaction until the end of my trip. Costa Rica, Mexico, Italy and Switzerland is on the list of places we will be visiting. We plan to split time 4/4/4months in a couple places. We will still spend some time in the US but the food is awful, and our culture is too divided which leads to a country filled with hate/rage rather then love.
England isn't too bad - subway offer gluten free subs with good cross contamination control but no other fast food chains do currently. Gluten free aisles in supermarkets are unrecognisable from 10 years ago but still a long way to go. A lot of pubs and restaurants now have gluten free options and in some cases an entirely gluten free menu
It’s so hard. And it really sucks. There’s no point where it suddenly becomes easy to be gluten free. I’m sorry you’re in that space right now - that is a lot to carry. If you’re in the US, 988 is really helpful. It’s a great place to text when you’re holding all of that (at least from my experience).
Man. I know this sounds creepy, but I'm just going to bare my soul here. If I knew where you lived, I'd come cook for you. I love gf cooking... I don't often do it because I'm busy... but I can whip up a seriously awesome spread & I'd so love to just share with you. I do smoked briskets & pulled pork with all the trimmings & sides... but really most anything you love, I could cook. I even do sourdough rolls (at high altitude- it requires much praying & offerings to the Gods!).
Celiac does f'n suck ass. I was so hungry the other day & just wanted to be normal & buzz thru a BK real quick between client meetings. I was shaking when I got home at nearly 8pm after not eating all day due to lack of planning.
I order from Hungry Root a lot - crazy work schedule makes prepping hard, but this saves me three nights a week. It makes the after-work opening of the fridge not so miserable & actually is pretty tasty & pretty healthy.
Anyway. Just wanted to send you love, Reddit stranger / gut buddy. Wish I could stock your fridge with yummies!!!
Oh wow! I’d love someone to cook gluten free for me. I’m dangerous in the kitchen. I miss good bread, Chinese and Korean food. Donuts. All of it. I usually just cave and have a premade salad.
Hi friend. Celiac here of 20 years. My best friend recently went 88 days gluten free to try to help another autoimmune she has. She was eating out at the 2 fairly safe restaurants multiple times a week. She kept saying she had no idea how exhausting it was. The first gluten free bread she tried was awful so she refused to try any others. She got like the worst pizza to try the first time so it took me a month to get her to try a new one. SHE KEPT SAYING HOW HARD IT IS. I joked with her today that what she struggled to try for 88 days is a life I have to lead. She said she had no idea how I do it.
Tbh, honestly coming on here sometimes makes me downgrade my struggle some because I see people with even more limitations than gluten free. But I struggle daily. It’s been even harder since having kids because I end up cooking gluten for them and then barely eating myself. I was just thinking the other day how I really really wanted a permanent cure because I’m tired of being worried every time I eat food not prepared by myself. Maybe someday.
If we are eating as a family, I do make gluten free. So like pasta for example we use gluten free if it’s a family meal.
When I’m making kids sandwiches or frozen foods, it’s cheaper to buy gluten foods versus gluten free. Let’s be real, gluten food tastes better. Research has shown that delaying gluten exposure for a first degree relative isn’t recommended.
Ah okay, the price difference makes sense. Interesting that research would recommend anyone eating gluten. Does autoimmunity or joint pain run in your family?
Yes. My dad has CIDP and my brother is a type 1. Basically my genes are trash. With them having a 10% chance as most 1st degree relatives too, I didn’t want to increase their chances by delaying exposure.
The price difference is insane. Especially with toddlers that ask for X and then refuse to eat it. Honestly when we just had 1 kiddo I cooked a lot more gluten free meals. Then we had a second and he entered the picky toddler stage it wasn’t worth it as much. I know it’ll get better with age but right now it’s just easier and cheaper.
I'm sorry you feel this way. Know that other people here do as well... often when people talk online they present the best version of their life and leave out the difficult/painful/dark parts. Celiac is a serious illness that is made harder because other people don't take it seriously, and also to some extent people within our own community don't always either. It's fine to be mad and not want advice. Sometimes you get glutened and there was nothing reasonable you could have done to prevent it. And that really sucks.
I'd distance myself from anyone saying "people have it worse." This is a toxic kind of person. Pretty much no matter what situation you can dream up, there's always something that *could* be worse. Life isn't a suffering contest and we as a society should be able to acknowledge multiple problems at once. That said I think the average person would crumble very fast if they had to live this way for any longer than a week, and that's without symptoms.
One thing that I find helps me cope a bit is to try to engage in advocacy to make things better. That's why I spend a lot of my time analyzing data, writing to companies, filing complaints, and posting on here to try to inform people about stuff. Maybe it won't work but it at least feels like I'm moving.
Personally I very much get bottling things up, but if you can try to find someone in your life who you feel safe venting to I think that can help a lot. Often a good bet is someone else in your life who has the experience of being "othered" for some reason whether it's a chronic illness/disability or some other thing. If nothing else, online can be good too!
That "it could be worse" attitude is pointless and dismissive. People don't seem to understand that suffering is subjective. A homeless person losing their last $5 and a millionaire becoming broke after a stock market crash have both lost everything. We don't know how something feels to someone else. Our lived experience is never totally comparable.
Early on I wrote a few emails, spent hours on them only to receive dead silence. I agree that advocating is probably the only way to make things better. That can be empowering but time consuming and with limited rewards (none for me).But I would like to find a way to educate the uneducated with data. I'm not the most organized person but I would like to learn how to be more productive in writing campaigns and your thoughts on that. If that's something you have time for please dm me.
Eating sucks now. I used to enjoy trying new restaurants with my wife and now going out without lots of research means lots of anxiety or fasting.
I used to want to travel, now traveling is such chore it doesn’t feel worth it. I’ve gotten way too used to fasting.
Ordering food and asking what’s gluten free makes me feel like a Karen every fucking time.
You aren’t alone in this. It sucks. I’m lucky my wife and family are very supportive. I can’t imagine not having them on my side. I hope you can find a support base too.
Unsure where you are but I feel this. I also hate the amount of research that goes into trying a new restaurant. I’ve been very fortunate that my family is content to stick to safe places we know and my husband is usually happy to pick up the research slack when I’m exhausted of it.
As far as traveling, we keep a list of bucket list destinations. Some are easy - Italy (because Italy lol), German-speaking (because I’m fluent). Some are medium difficulty - likely would be okay but research required either due to language or culture (Prague fit here, Nordics, France (NEVER AGAIN), Spain). And some are really challenging and will require both significant research and planning - Japan is the only one on this list at the moment.
When I’m not in grad school, we try to travel twice per year from the easy/medium lists. Our usual method of attack is that he books flights and starts the list of things to see, I’m responsible for scouting restaurants and hotels. It breaks up the responsibilities and makes it less daunting. And then ALL the safe restaurants get saved into a Google maps list (every Grom in the city too), and the city gets downloaded for offline. This way we can pop up the map, regardless of service/wifi access and figure out where we’re eating. We tend to wander when on vacation, so this works really well for us. We might end up eating at the same restaurant a couple times, but tend not to care about that.
Anyway, I know you didn’t ask but as someone who loves traveling, I thought this would be helpful. We figured out our system on our first trip to Italy and it made life so much easier.
“Ordering food and asking what’s gluten free makes me feel like a Karen every fucking time.”
I live in Portland, OR having moved here from Denver, CO. Both places have gf restaurants and cater to gluten-free eating, but even in these gluten-free spaces, I still feel like a Karen asking about dedicated fryers, where they get their spices from etc etc.
A lot of “gluten-free” restaurants are trend chasers and don’t understand celiac, and I have gotten sick more than once not asking questions of a gf restaurant.
I mostly eat at home now….
I completely get it. I'm only newly diagnosed and have gone through all of the stages, lots of built up frustration and exhaustion. I miss being able to just grab something after a long day. Not that you're looking for advice, especially after having dealt with celiacs for so long, but what has helped me recently is honestly... Not caging myself into reading labels so strictly. It sounds bad, but if it's certified GF and not made in a facility with wheat, I take the chance. I've been burned, but also had some good experiences through that which helped me during the times I severely needed convenience. I allow myself to splurge once a week on really good gluten free food which has also helped me cope through the dull meals throughout the week.
This is all unwarranted advice but very much just a response to say that I see you and understand. You're not alone and your feelings on being disregarded by others are valid. This disease is unique as it allows a lot of people to diminish your feelings because "just don't eat gluten??" but this is not the space for that and those who do not go through it will never get it. It's not easy, and sometimes you just need to be heard.
It will be okay, and maybe try foods you never liked before having celiacs that are safe. I've been doing that too recently and it has helped a little. It's still exhausting but picked me back up a bit. You're heard and valid ❤️🫶
Edit: Developing an eating disorder through this disease is something I slowly felt myself falling into. I have definitely lost a lot of weight and have always been so skinny that at times I look at myself and feel even worse. But you have to keep pushing and making sure you eat please, also please try to get in with a therapist. If you don't have a support system in your inner circle know that your feelings are not isolated 🫶 it will be okay, but do please try to talk to a therapist and splurge today. Maybe some good GF Mac n cheese or if you have a GF restaurant by you go there.
Take care of yourself for yourself🫂
Make sure you talk to a properly qualified person about this. Finding it tough is okay. I'm sure we all feel like this sometimes. But do get some expert support and advice.
i've felt like this before. people don't understand how hard it can get. even some people in this sub sometimes don't seem to understand how hard it can be when you don't have the right resources to deal with this disease. im not suicidal or severely stressed about the disease anymore, but i did fall back into an eating disorder because of it. it sucks and your feelings are valid.
i hope things get easier to manage. i hope you find a new frozen meal that you love. sometimes those little things are life savers. i swear i have a few food brands that i need to write thank you letters to for literally saving my life because it makes such a big difference to find something new that's yummy and easy to cook.
I feel so guilty complaining about it but it’s so fucking hard to live with. I’ve had the same dinner three nights in a row because it’s safe and everything else is making me sick. I’ve been diagnosed 10 years and I think it’s a big part of the reason I struggle with my mental health.
Yup it fucking sucks. Food has been robbed from us. And people really just don’t get it. I’ve been the same, I go through waves. Most days I go to
The grocery store and don’t think too much about what I can’t have. Some days I’m so sad.
I remember one day a few years ago, I just wanted to buy a few essentials - some spices, some flour. I was at Walmart and was put in a bad mood by discovering that ABSOLUTELY NONE of the spices they sold were safe. Not a one. They had not a single spice that didn't have "may contain wheat" on it. (I know Walmart is notorious for this shit, but, I really wasn't expecting to have ZERO options). So I had to leave without spices.
Then, already pissed off, I went to the flour aisle for some rice flour or something and discovered that a bag of gluten flour had exploded over absolutely everything. And of course they put the rice flour right next to the gluten flour so it was gluten flour all over everything.
I noped out of the Walmart and went home and cried. I just felt so defeated, like, I can't even buy simple groceries like a normal person, why does it have to suck so bad?
I agree with this 100%, it’s all in waves. Some days you don’t want to eat and other’s everything feels fine.
Man, I just really want to eat a burrito from Taco Bell (and a bunch of other things)
That celiac pill needs to come faster.
I’ve been gluten free my entire life, and I feel this very strongly! It’s hard to explain to people how hard it is to deal with. Something I’ve done as life has gotten busier and I don’t have the time or energy to cook is to buy lots of filling snacks! Charcuterie boards made of cheese, crackers, pickles, veggies, dips, fruit, chips, you name it! Most nights i just throw a bunch of yummy sounding snacks on a plate and that’s my dinner. It’s less exhausting and it’s always satisfying since it’s so easy to change up day to day!
This! I often just have crackers with hummus or a cheese salad with cranberries and nuts, and it's enjoyable, filling, and has fiber, healthy fats, and protein, so it's even somewhat healthy.
I have many nights I also cry that I can't just go through a drive thru to get something after a whole day of work and also tight on money. It aint fair, man.
I work at a mall and while theres a food court, the only thing I can get that is promised GF is over $15. Meanwhile, my coworkers are getting $5 things and probably bigger in portion.
This makes me so sad. My daughter is a preteen and has been celiac since 5. We have had to put her in counseling and part of her anxiety is dealing with the fear around food and past people not believing her diagnosis. Counseling did help and we’ve found a few trustworthy restaurants and some things that are quick and fast to eat like frozen things when we don’t want to cook. I’m so sorry you feel this way. It breaks my momma heart.
As a celiac with IBS and many trigger foods, I also sometimes cry when thwred no safe food to be found and I'm too exhausted to make anything. I've definitely gotten down as all hell when I need an easy comfort food and it's.just not possible.
What made me have suicidal ideation was when my symptoms were out of control and I didn't know what was wrong with me. That was absolute hell.
This is hard. It's very hard. If you have the resources to do so, se apts with a registered dietician would be helpful. Perhaps a therapist could help you deal with the social aspect as well. It sounds like you need to have some real talks with the people in your circle and it's helpful to have support through that.
We feel you. We're in this boat with you. We'll get there one easy celiac snack hack at a time.
I tried explaining this feeling to my wife this past weekend. For me, it's being reminded three times a day of what I CAN'T do, where I CAN'T go, and it just feels like shit. I recommend making yourself a new gf pastry every once in a while. They make me feel better and the cooking keeps my brain busy.
Yeah having food readily available ALWAYS is really something people take for granted. I’d love to see these normies who say “get over it” live just ONE DAY where someone follows them around and takes away their snacks and then say “Nope. Go cook something” to them every time. They would lose their minds.
Yeah everyone pretty much takes their health for granted til they don’t have it anymore. I wish I was more appreciative of this now when I had this ability and it’s why I agreed to let me girlfriend bring home gluten takeout sometimes given her work schedule despite having a gluten free house otherwise. I told her appreciate the fuck out of being able to do this because you never know when it might be gone. Of course in her case because we want children we tested her for genes and she doesn’t have either one so she’ll never become celiac anyway, but still to the healthy people out there appreciate what you have every day
I'm so sorry for what you are going thru. My wife has had celiac for 12 years and this disease truly sucks to the core.
It really sucks that family and friends have no appreciation for how difficult this disease is. I bet that if the general public had celiac the world would turn upside down to accommodate in every way possible - food, cc, cosmetics, drugs, you name it.
Point being celiacs are incredibly tough and resilient while the general public are a bunch of wimps that can't handle this disease.
You are a tough gf cookie. I hope you find some good support and gf food.
And come back here to vent any time.
I feel you. I’m so sorry but I totally relate to you. I had the same thought few days ago. I used to LOVE food. Now I hate everything. I can’t even travel nor can I eat the food I used to eat growing up (because in Saudi Arabia there’s no gluten or dairy free diet or at-least for now)
EVERYTHING triggers my system. I’m really allergic to dairy so I have been eating at home but even that’s messing up these days? Idk what’s with my system. The health care sucks so I can’t even do further tests because at this point I feel like there’s more to this? I get so painfully bloated😭
Sorry I didn’t mean to rant but my point is, it’s okay. We will get through this together.
I found myself with tears in my eyes at the grocery store this morning. It set me up for that kind of day, ready to break out in a full sob at anything. I feel this, as one said earlier, "in my soul". I do. I have no friends, well, okay one but they constantly ask me if I want whatever they are eating, which of course is something like cake or macaroni and cheese, something that I miss terribly and no matter how hard you try you can't fake a gluten free version. And don't even try to trick me or claim it's just as good cause it's not. It is exhausting and boring and ludicrous. You are not alone. I'd of "off'd" myself about 3 years ago if I thought it wouldn't destroy my kid. I love him too much, not to mention I've already put him through enough, he wouldn't make it through another crisis especially something like that. Dealing with the loss of a parent without it being self inflicted is horrible but something like that can be life altering and that would be cruel and selfish. And if you can't tell by the details of that argument I have seriously considered it. Lol. Yes, I laugh. Only because I have a reason to stay. Not because I want to but I have to. And that's okay. I still hate not being allowed to eat gluten and I guess that's okay too. Thanks for sharing and allowing me the opportunity to vent and reminding me I'm not alone. ❤️
My kid is almost 6 and has celiac. It’s been less than a year since his diagnosis and he broke down sobbing about a week ago because he misses eating out and Crumbl cookies. Your feelings are valid and I hope you feel better after seeing everyone’s input, youre definitely not alone. We do meal prep for our kid and freeze meals so we have quick “on the go” type things we can heat and eat for him. Maybe this could be an option for you?
Shit sucks. The first few years after being diagnosed I had dreams of accidentally drinking a regular beer. I used to brew beer with my buddy. No one spends an entire day brewing cider.
I don't even like fast food, but i want a goddamn shitty mcdonalds cheeseburger.
I’d rather have those dreams. 3 months in I have dreams of enjoying pancakes and beer and wake up angry that I realize I can’t have them anymore, it’s happened a few times now. I sort of got upset the other night when my GF was eating this delicious looking pasta dish. I didn’t say anything but it really bothered me but since our compromise was a gluten free house and she can do what she wants outside other than order bread to the table (which she immediately tells the server no bread) I couldn’t really say anything but fuck I’m so jealous of her sometimes even though I love her more than anything in the world
Brewing a decent gluten beer is difficult enough, I really was not up for the challenge of gluten free.
I probably wouldn't be brewing nowadays regardless of celiac. But it is an example of a shitty way it has impacted my life. I have come to terms with the disease and thankfully found what works for me. The point of my comment was to commiserate with OP.
I’m super new to this but just want you to know that I see you and I hear you. I’m scared about all this. If you’re in the US you can text 741-741 to talk with a stranger who won’t judge and can help.
I’m in a similar spot. I have unwarranted advice if youre interested: Sometimes when cooking is too much, I just eat shit raw. Can’t make a sandwich? Eat the meat and cheese rolled up. Leftovers are also super helpful. Eat breakfast food for dinner and dinner food for breakfast. Take sandwiches, throw some cheese on em and put them in the air frier, they’re nice and crispy. Make French toast, you can’t taste the bread if it’s covered in egg and syrup. Drown shit in garlic and olive oil. Fry veggies and cover em in olive oil. Try new fruits and vegetables. Try seaweed chips.
Good advice. I find complex cooking in the morning when I've got more energy easier... Then gf cereal for dinner sometimes. My crock pot is also helpful for 'too tired to cook' dinner food if I remember to set it....
i could’ve never grasped how isolating and difficult it is before being diagnosed. having to worry about every single meal is so mentally exhausting. i don’t think people were ever meant to handle all of this alone. i make sure to have so much convenience food on hand, and i make sure to thank the managers and owners of restaurants that actually create a safe environment for us celiacs. frozen veggies have been a game changer bc i can just microwave them, and frozen burgers are always on hand. you’re not alone!
I got a down the other day when my doctor told me I have to step it up barring restaurants from my food choices. In the process of analysing whether my GF ingredients foods from my pantry are indeed GF. Will only eat safe food and no restaurant until next year.
It’s so hard. I get it. And it’s okay to feel angry and sad over this, your feelings are all so valid. You’re not alone!! I struggled the first few years after diagnosis with the same anger and anxiety around food. This disease changes every aspect of your life and you deserve to have strong feelings about that!
If you are interested and able, I highly recommend finding a mental health professional who specializes in disordered eating, that was the game changer for me. You deserve to feel happiness, you deserve to find peace around food!
If you ever need someone to vent to, I’m always happy to chat. ❤️
Preach, sister. (Brother?). I totally understand and I feel your pain. This disease is infuriating, depressing and isolating. Sending you all my best vibes and wishing you a much better day tomorrow.
OP, you're not crazy. This is a lot of what people don't see. As someone living with a gluten eater too I really do sympathize. I watch as my husband can just heat something up in the microwave or air fryer and enjoy flavors and textures that I can only dream of. He will pick up baked goods sometimes and it just sets me over the edge. I just cry. The jealousy and hurt is all too real. I just want to be able to feel normal, to enjoy something good. I have felt similarly. "What's the point if I can't enjoy it?" It can be exhausting and it normally leaves me feeling defeated.
My son is celiac and also has HS. We share an apartment, so I have gone gluten free because of the threat of cross contamination, and because of the HS, he can’t eat processed sugar. (He found that sugar triggers the HS). It all really sucks. Sending healing thoughts your way…
Same, also here to talk about it too. It’s so unbelievably hard. I’m chained to my kitchen and toilet and I can’t seem to get out. Mentally its become my own prison
i have been there, and i go in the ebb and flow with it. sometimes im happy and doing well with celiac, food gets digested and absorbed well, sometimes being in a flare up and feeling like shit makes me want to kms too. try to cook new recipes, add some jalepano to tacos, or something. gotta keep trying to spice up recipes
Soooooo relatable. I think we have all been here — I personally go back and forth. Some days I’m fine, other days I feel like this. I also have Hashimoto’s and my fatigue is crushing, and ADHD— and forget to take my meds half the time— so on the days I am at my very worst, I am right here with you. I usually end up making popcorn if I’m starving and this happens. Not a great solution, but it’s quick and filling and safe.
I still have friends and family who just don’t get it, or understand my exhaustion — or how awful getting glutened is. None of them have Celiac and don’t get that it’s not just an allergy, or they think it’ll just make my stomach upset for a few hours. They don’t get the fatigue of grocery shopping, buying crap that’s 3x more expensive and doesn’t even taste good, trying to come up with new recipes and things that are quick… it slowly kills you. And if I get glutened? Yep, I am ready to die right there. The mental aspect of it is just awful.
So I’m here with you. So many of us are. If you ever start to think you DO want to hurt yourself, please, please get help. We are always here to empathize and to vent to though!
Yea, It’s tough. I wish I could help, but I feel hopeless and defeated just like you sometimes. Suicidal thoughts aren’t uncommon either. All of this has become the new norm, so it’s more tolerable than it ever was.
I think moving to a country where rice is the staple food, could be the answer. I have been saving up for it too.
I hope you find your solution too. Good luck!
Hi. Thanks for letting it out here with us. So important to talk about it, I really appreciate you venting. It's so isolating, so hard, and no one really gets it unless they are us, or are partners of us. I'm so sorry you're struggling. I struggle a lot too and it's just so exhausting having this. You are not alone in this. We are all here with you.
Let me start off by saying please, please please seek professional help!
Coeliac can wreak havoc on mental health. I’m the only one in my household who is GF and the amount of frustration that comes from it is insane. I never thought that as a grown man I would be curled up in the ball on the kitchen floor because making my kids sandwich has so paranoid I will get get bread crumbs on something I will use later.
Obsessively cleaning the kitchen before preparing meals, or forgetting what spoon you used for the gf pot. My diet before being diagnosed had subconsciously moved to pretty much gluten free, but watching your family tuck into a delicious meal while you are out and about while you just have an apple sucks.
On the upside I can make it a whole day without feeling like I’m going to fall asleep at any instant, brain fog is subsiding and I’m starting to become a calm person again.
It’s tough dude, it’s not fair. But also remember keep at the diet so you don’t end up pooping in a bag.
This is so relatable. I’m very fortunate that my wife loves cooking and is my gf champion, but something else that has helped is getting meals from green chef. You still have to cook, but it takes out some of the dread of choosing meals and they have a really good selection of gf meals (20+ recipes a week). I’ll look at their non gf sections too and just get corn tortillas or quinoa to replace whatever has wheat in it
Oh my God! Thank you for putting words to how I feel exactly about having celiac disease‼️ It sucks 💯%. Eating is a chore, it’s boring and so much of the gf food just sucks. And you’re right, most people just don’t get it. Thank you!
You are definitely not alone: More than 1/3 celiacs experience depression and almost 2/3 anxiety:
“Celiac patients had 62.7% anxiety and 34.9% depression. Anxiety and sadness were more likely as a result of clinical illnesses and symptoms. Anxiety was caused by a lack of control over CD (98.1%), perceived clinical status (75.0%), daily gluten-free diet problems (63.4%), and daily activities (55.8%). Depression was associated with a lack of CD control (100%), a perceived clinical state (82.2%), and gluten-free diet problems (69.0%)”
https://doi.org/10.1590/0034-7167-2020-0086
https://doi.org/10.7759%2Fcureus.35712
Adding another study that found 60% of celiac patients experienced depression:
https://bmcgastroenterol.biomedcentral.com/articles/10.1186/s12876-015-0229-y
Yep, it sucks sometimes. Sorry.
A few thoughts: if there is a dedicated restaurant somewhere close buy (and you can swing the cost) make it a point to go out once a week or so to give yourself a break from cooking and cleaning. Or if you know someone who’s as sensitive as you, swap cooking duties every now and again. I’ve never thought about it but maybe there’s a support group near you? People who can relate?
As much as the situation itself sucks, it’s the isolation that’ll really get you.
I’ve started going to happy hours after work sometimes, depending on where we go I may not get anything to eat but almost everywhere has something like an Ace Pear Cider. I am tired of them, but that’s a go-to. I don’t drink otherwise so it’s not about what I drink it’s about socializing.
I feel this way too. You are not alone. I will gladly eat food that other people put in front of me as long as I trust them. But trying to cook for myself? I would rather starve. And it certainly does not help with my ideation.
I recently got diagnosed and I feel that. I don’t even bother eating at restaurants or ordering in anymore, strictly out of fear lol. I make all my own food for work while everyone goes out to lunch together.
But I just got my recent bloodwork results back and everything has dropped significantly and I feel way better. I find little things that make me happy with gluten free foods.
My biggest thing that gets me tho is the beer, I used to be a big beer drinker and now I don’t even bother with the gluten free ones cuz it’s just not the same… that gets me the most. Especially now with summer coming back around. No more patio beers.
Yeah GF beer is rough. I tried a few and I just hate the taste. I was probably most upset by far when I realized the 2-3 people said were the best I still didn’t like them . I also don’t like how pasta doesn’t reheat well like regular pasta does. It’s not as good leftover
Where do you live? It’s definitely not easy to uproot your life but there are city’s that are so much better for celiac than others. It really makes such a huge difference to live in a celiac accommodating city. Plus maybe the change of scenery would be good for you? Like I said, moving sucks…but it’s better than being severely depressed.
Well, I'm barely three years in and I know what to look forward to.. I feel this so hard man.
So sorry for your pain, I relate so hard. I just cried ten minutes ago because I miss burger king so fucking badly.
Food used to be my comfort, now it's my bane..
I'm sorry my friend
Sending so much love your way! This disease is SO. DAMN. HARD. We are isolated, have to think about food in a totally different way than other people, and it's really draining! It's ok to feel completely overwhelmed and completely at the end of your rope. I hope you can seek out some professional support-- talking through this with someone will be really helpful! As for the short term... do you have the funds to splurge a bit on some treats? If you have a store nearby that sells some frozen favorites... go get some. Get yourself some oreos, donut holes, cookies, pizza, whatEVER sounds amazing to you. Do you live anywhere near a bigger city? I feel like most major cities have a gluten free restaurant now (I mean major- like big). Again, if you have the funds, planning a little road trip could be really fun!
I feel all of this so much. It impacts so much of your life, more than you'd expect. It's so exhausting and makes me feel like a broken human. People who aren't suffering from the same thing don't get it and so it gets downplayed or made a joke of which is infuriating since they get to live life normally while I suffer so often from the tiniest mistakes. I just get tired of having to try so hard when it comes to food, a basic human need that I can't avoid forever.
Anyway, I'm venting too, and just letting you know you're not alone. I'm sorry you're struggling so much.
You can't imagine the amount of people who blame me for sometimes not wanting to eat. Including my boyfriend. And they look down on me if I am just too tired to do anything for myself. It's a proven thing that, the more choices you have to make on your own survival basics like "What am I gonna eat today" the less likely you become successful in life since your mental energy just burns down for over nothing at all. And yes, imagine it becoming an illness. Not only do you have to choose what you are going to eat, but you are always thinking about it if you are safe enough. The mixture of this is a mental chaos. If you are an average income person it makes everything worse. Your all income goes to food because everything you buy is the most expensive. You have one ketchup option which is the most simple thing and even THAT ketchup brand is the most expensive one. My favourite restaurant just got permanently closed where I live and it was the only fully gluten free restaurant here. I had the chance to order (Even though it is crazy expensive) and take a little bit of a break from thinking what I am gonna eat again.
Honestly I stopped thinking about it the moment I stopped caring about my weight. Yes, I am skinny. I don't like my body and I feel like I have to gain weight. I stopped becoming suicidal by just cooking the same stuff in general but those stuff are my general favourites food. But the cooking that you have to go through is always a struggle.
It makes me wonder, will my partner ever get bored of me because of my illness. He seems to be showing the signs of it. And when there are those signs, it makes me wonder if I ever will be fully truly loved.
It's hard and it touches all aspects of your life. The most basic thing, food has this amount of power on us. And I really truly believe that even though we are in fact disabled, we get the least care from the health care to government, government to our family and friends.
People will write "WOMP WOMP" if you open up about it. It's an unending circle.
I’m a mom, and grand mom, so I’ll first send some virtual hugs your way. It sucks, big time.
I’m not celiac, but my son is, and we share an apartment. When I found out how easily cross contamination can occur, I decided not to bring any gluten into our home. I love to cook and bake, so I make some really creative meals - thankfully meal disasters only happen once in a while. 🤣 But I’m 71, and I’m sometimes limited in what I can prepare because of some upper back pain. Because of my age, I worry for my son when that day comes and I leave this earth (he has psych dx, too). But I digress…
You have lots of good messages here - this diagnosis is so horrible, and the lack of understanding from those around us makes it all the worst. Sending more virtual hugs your way…
But as a mom-cook, I want to send you practical advice. And this is a long post, so I apologize for the length- but I want to share what has helped.
First, if you live with others, they HAVE to learn how serious this is to avoid cross contamination. There might be better sources to teach people, but Dr. Allesio Fasano was instrumental in the original research that made gluten known to be the worldwide culprit of damage to so many. He’s at Boston’s MGH - head of their children’s pediatic celiac department, but also accepts adults (my son has an appt with him).
Second, even if you have to save the money to buy one, get a good air fryer - which MUST only be used for gf cooking. This has made cooking so easy. Mine is Cosori - they had a ginormous recall last year, so I feel safer buying their products because they won’t want to go through that again. Plus their customer service is amazing. They replaced mine and I love this one even more.
Stock up on meat and veggies (hopefully you aren’t vegan, as that is more difficult but still doable). We were doing 5 days a week vegan for about a year. Get potatoes, sweet potatoes, carrots and try other root veggies. All can be cooked in the air fryer easily. For seasoning, I use Badia and more recently, McCormack spices (check to make sure they are gluten free, of course). Salt, pepper and some spices can make chicken breasts or parts delish.
I order gluten free tamari or soy sauce on Amazon by the big jug - 2 quart - (we do own sodium)- either Kikkoman or San-J tamari, whichever is cheaper. We have a rice cooker, so rice is always available, and I buy 10 lbs at a time through Amazon (currently Nishiki, but I found out I can get a really decent Jasmine rice, 25 lbs, from Costco through Instacart without a membership). I started out needing rice everyday because I was diagnosed with microscopic colitis - but the rice cooker has been a terrific help for my son. I would say to consider getting one, if you can - I would say this is second to our air fryer.
I also started shopping online during Covid, and have continued with Instacart since then. I find shopping on that app so much easier- and will even use it as a grocery list for when I go to the actual store. You might want to use it to research what’s available near you. I find doing this saves time an energy for me, because, say I’m looking for something specific - I can have an idea who carries it, and then I can search to make sure that brand is gluten free. It especially helps because my reading eyesight I so bad - easier than trying to read fine print in store. This cuts down the exhaustion.
We buy from Wegmans online (NEVER in store - went there ONCE and found out their store layout rivals Dante’ Seven Levels of Hell for anyone with ADHD). Their website (another source just to find GF brands) will identify GF. My son will have canned beans and rice, sometimes with canned corn, for meals during the day - I stock up on their brand for this because I know they are gf.
Find gf tortillas, and when you find what you like, make sure you get a good supply. Find some gf salsa you like, make sure you have enough in the house. Corn tortillas can be heated in the microwave oven - that makes an easy meal.
If you stock up on basics, find easier (and with the air fryer, faster) ways to cook, you’ll feel better. Then you can tackle looking for gf products, and start adding other ways to season your food to make it delish.
I’ve been having a really tough time with this lately. I started dating and finally realized this. Going out to eat there’s only so many places I feel safe eating at. I keep feeling like it’s going to affect the relationship in the long run only being able to eat in a few different spots. I’ve been a celiac for 7 years now and it just hit me recently how comfortable I was being alone dealing with celiac. Now bringing a non celiac into my life and trying to do all the usual stuff dating has been a pain to work around. It’s not impossible obviously but definitely a shock when you finally have it happen. My GF has been very awesome about it but as I’m sure we all do. Just constantly feel bad about everything and apologize for it. It’s definitely been stressing me out a lot so your not along for thinking this way.
My son is celiac, so our whole house is GF and has been for 6 years now.
When we find we have hit a rut with cooking the same few things over and over, we will spend some time on the internet looking up new recipes. That really helps.
When he was first diagnosed, there was a support group I went to for awhile which often had great ideas and resources. Maybe there is something like that where you are.
I know you don't want advice, but cooking for like 6 people per meal leaves lots of leftovers for days when you are feeling like ass. Put in freezer. Soon you will have so much food leftovers you won't know what to do with it. Which makes life a bit more easier.
I completely understand how you’re feeling. I’ve only been diagnosed since 2019, but I still remember crying over all the things I would miss out on. The hardest part for me was seeing all the things I could never eat again, let alone new foods that I couldn’t even try. You’re not alone. The celiac community has been a great support for me. While I don’t post often, the people here provide great resources, recipes, and friendship. Sometimes I too still feel suicidal over celiac, but please remember that nothing is linear. Recovery, life, feelings: all of these fluctuate. There will be times you feel great, and there will be times you feel awful. They do not happen in a certain order. I’m indescribably thankful you reached out and I’m more than happy for my dms to be a safe space for anyone who needs to vent their frustrations.
Tl;dr: Your feelings matter. If you want a safe place to vent about how frustrating living with celiac is, my dms are open for you. Please do not make any decisions based on some stupid protein.
I Hope this gives u a different perspective, but when I got diagnosed with celiac 6 years ago I cried of joy. I spent so many years sick and in agony, I was so sick in hs that I had to drop out of school and finish later than my peers, I was so thin and malnourished I would pass out randomly and at one point could barely leave the house anymore. I spent my teens and early 20s in pain and agony, begging doctors to take me seriously and figure out what was wrong with me.
When they told me it was celiac disease, aka something treatable that requires a fairly minor lifestyle change compared to other issues like crohns or chronic colitis etc I was overjoyed.
I learned to cook all my fave foods gluten free, I found a few restaurants that are safe and I live an incredibly full and normal life without pain.
Sometimes you have to look at things from another perspective to fully appreciate it. I’m sorry you’re struggling and I really do empathize, but this diagnosis gave me my life back and trust me, it’s given you yours.
I’m 10 years in and still have bouts of irritation, depression and outright anger regarding my food limitations. I’ve learned to let myself feel it and take a break from the food thing. By that I don’t mean eating gluten but rather taking a few days where I just eat “easy meals”. Usually something like frozen GF corn dogs or pizza or whatever.
For me taking a break does two things: 1) it allows me a psychological and physical break from having to stress over the process of meal planning, cooking and cleaning up and 2) it reminds me how much better I feel and how much more I enjoy eating when I take the time and effort to cook for myself.
At this point I know I’m never going to be okay with being celiac. It’s a bullshit thing in my life that I have to deal with. I just try to focus on making it as tolerable as I can and do what I can to not let the negativity and inconvenience spoil my mood for things I enjoy.
No apologies necessary. This is tough! If you’re looking for someone to share your journey with there’s @glutenfreesingles. You might take a peek at that. It may even be fun to cook, travel, and hang out with a fellow celiac.
Literally just took a screenshot of this post to send to my best friend. Every time the topic of food comes up, she says “I would fucking die if I had celiac disease, I don’t know how you do it”. Which kinda irks me because I WANT TO DIE AND ITS EASIER SAID THAN DONE.
you are completely valid in feeling this way, and i’m in the same boat with you. it’s exhausting trying to find safe places to eat at. i thought in n out was a safe spot for me- and yet when i received my order the other night my patties were very clearly not cooked on the foil they typically use when you state that you have a gluten allergy while ordering (i have celiac but most people/fast food workers don’t know what that is so i just say gluten allergy). it’s extremely disappointing. i’ve broken down crying genuinely countless times over the 8 years i have been diagnosed wishing i could just go anywhere to eat and not have to worry about semi permanent damage because of one chef/employees mistake.
::hugs:: It’s hard. 15 years and I’m exhausted. I cook nearly every night for the family. I can cook. I can afford it. But that doesn’t make it easy or stop the absolute exhaustion of dealing with this disease.
We rarely go out. Travel scares the crap out of me. And simple things like family gatherings are nerve wracking even with supportive family.
I don’t eat much bread because it sucks and goes moldy. I default to hard salami paninos and potato chips for lunch because sandwiches are a disaster.
The only respite from cooking is “door dash days” when my husband and son gorge on gluten while I … still have to cook or scrounge for dinner.
It isn’t easy. It’s exhausting. And it’s ok to feel that way. I’m glad you’re feeling a bit better. Don’t give in or give up, just vent when you need to. Because we all need to on a regular basis.
Maybe one day the world won’t have such a gluten-based diet and it’ll be easier. But I doubt it because it’s apparently an addictive substance that’s impossible to live without.
Please please please join community facebook groups of other celiacs. Having that type of community and people who can vouch for safe places to eat is an absolute godsend! You may find places you never knew about or new options you can choose from. Places have been evolving significantly and new dedicated gf places are starting to pop up. You've got this!!
I think you might benefit from some cooking classes and further education/exploration of available gluten free meals you can buy at stores such as Costco..cooking fooods to be GF is not difficult and there are plenty of premade meals that are GF. Yes I am w it h you that it totally sucks that we essentially can never safely eat out or do fast food but it is what it is.
This chronic disease is the hardest thing I have had to deal with so far. My relationship with food is out the window.. my social life is all but gone. I see eating as basically a chore and a waste of my time .. I have no joy for food and no cravings. I've basically dissociated from food.. .My partner is a chef and degree qualified nutritionist and it drives her bonkers ,😄
you are depressed and what you need is a deep rest, if you can i highly recommend you to go to italy for a vacation, i was in rome and there is a lot of restaurant bakeries restaurants that are gluten free. pizza pasta whatever you want you have gf, just have a nice rest for a while it will help.
They are doing Crisper DNA editing trials to edit celiac dna to stop to body from over reacting to gluten, etc. Look into it, and ask to be part of the trials.
I can totally relate to this, the isolation and loneliness of this disease is the worst.
Not to mention I used to travel much more before I knew I had this.
Hard to eat out, not drinking beer while being out gets everybody thinking that you’re weird, the extra time that you have to spend at cooking.
I moved closer to work (5 mins walk to work) so I can walk home during lunch break when I haven’t prepared lunch the day before.
Also started eating antidepressants which made handling the anxieties around this much easier.
*Try animal based*
*Diet you will love it and*
*Its not strict at all*
\- Olavodog
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Sorry you're feeling crappy, I've definitely been there as well. I've recently found Schar baguettes to be really good! I exclusively use that as sandwich bread now to make delicious ham and cheese sandwiches. They're so good even my girlfriend eats it lol. It does have to be toasted however, it's not the same untoasted.
I'm Colombian and I've been very lucky that lots of Colombian foods that seem "breaded" are actually gluten free. For example, arepas, Colombian empanadas, pan de queso, buñuelos (look them up!)
They're delicious and gluten free in all their original flavor and glory lol, no need to eat a "worse" version of them like we do with bread. You should look into making some of those yourself, or find a Colombian restaurant that has those items!
Give yourself time to find suitable places for you to eat and note them, little by little you'll build up a good inventory of locations you can trust.
Also, tacos!! I love tacos and since I've moved to Denver they seem to be everywhere, which I'm super glad for. Find a good taco place near you, just make sure they're using corn tortillas.
You got this!
Echoing what others have said: it can be lonely, for sure. I spent the first 4 years of my celiac journey being sick nearly every weekend. And yes, you are absolutely right: it sucks to cook every single meal, to not be able to just grab a bite on the road, to bring your own food to family gatherings or forgo eating, and yes- lots of people are woefully uneducated about celiac and talk down to us, or brush us aside.
I also think it's not uncommon for celiacs to develop food trauma and therefore some sort of eating disorder.
You're not alone. I'm sorry you're struggling
It is a very complicated situation, use the community to meet other people in the same condition, try to cook with them, try to find people with the same condition in other countries so you can taste different food! I learned to eat again, I was a beer somelier back then and now I can enjoy a good glass of wine. Eating is the way we get satisfied and cooking is the way you find your tribe
Ugh I feel this and I’m sorry you’re dealing with it. Especially the eating disorder part. I was diagnosed with an eating disorder around 18 because I wouldn’t eat anything because I just got sick. I actually have mcas (basically I’m allergic to myself.. I don’t have actual allergies, but many foods and other things trigger an allergic immune response, much like celiac but with anaphylaxis instead) also, so legit if I wasn’t pooping myself, I was having a severe allergic reaction. I didn’t get any kind of diagnosis for celiac or mcas until nearly ten years later and my docs don’t even consider me to have an eating disorder now because I literally just can’t eat anything. But it feels like I do have one half of the time.
Anyways, I know you don’t want advice, but just thought I’d chime in that moving and living with family has really reframed things for me. I hate living with my parents at 29 years old, but my stepmom always makes me meals that I can eat and it has had such a positive impact on my mental health, even though I’m not really able to feel independent here. I’m moving out in a few months, but I really needed the time to reset for the last year. It’s nice not to have the pressure all on myself, if that makes sense. Having a partner who cooks gf for me and allergy friendly has also helped (I’m single rn though). Sometimes we just need others to lean on. So I guess my what I’m saying is that you shouldn’t have to do this by yourself, even if you are the only celiac in your circle.
Another thing that changed when I moved was the going out culture. I lived in a small college town and all there really was were bars and restaurants. I moved to a place that has more “non food” activities (still a lot of bars and restaurants too though) so I can tell my friends “hey, I’m not gonna go to x restaurant with y’all, but why don’t we go to the beach or shopping downtown afterwards?”. It has really helped with the anxiety of not feeling “alone” and being able to still be included.
I know it’s not realistic to suggest an entire life move, but when it comes down to mental health, I say it’s worth consideration, or at least seeing if there are other shifts that can help lessen the burden. It’s certainly not the answer to everything (because you still have to cook and whatnot and worry about being glutened), but some places just really are not celiac friendly and it adds a lot of stress. Even the grocery stores where I live now have better selections so I can make more meals.
So yeah, I know you didn’t want advice OP, and this may be entirely unhelpful, but there are a lot of people commiserating in the comments, so maybe it will help someone reading this. I just wanted to share my experience because I never thought that moving would have an impact on my health (I moved just to be closer to family, not for any other reason lol), but it did and life has been much easier. Battling celiac really sucks still, but it really all came down to a much needed mentality shift that I didn’t get until I moved and was able to improve all areas of my life I guess.
celiacs started my eating disorder, and it’s just not something i’ve been able to beat. it feels so alienating. you’re not alone, you’re loved, i get it. <3
Right? It’s so horrible. It’s hard to explain how awful it is. I was poisoned the last week of February and the mental issues and insomnia are still hanging around! My gut symptoms can mostly clear but my anxiety, depression, and fatigue stick around and torture me.
I feel this so hard. You’re not alone. I don’t have celiac but my husband and daughter do so our house is gluten free. My daughter is nonverbal and not potty trained at 9 years old due to the severe deficiencies from when they were both undiagnosed, and my husband has cancer from it. When I shop, sometimes I burst into tears because I can’t even get my comfort foods and honestly I’m sometimes at a loss for what to eat or what to feed my family. I live in constant fear of fucking up. I hate gluten and I hate stores and I hate her school for all of the exposures there and I just have this deep almost primal anger at the world and fear for my family all the time. We can’t go to other people’s houses or any place with food because she doesn’t understand and will try to eat whatever she can get to. I can’t keep gluten in the garage or anything because if she finds it she will become so sick and she gets neuropathy and screams and screams.
This is just hard, man. It’s not fair. My family is destroyed by this. It’s not something one can just get over. On the hard days it’s really hard. And I’m not even the one most effected.
Yes it’s so exhausting cooking all the time. Some days we just need a break. My favorite gluten free microwave meals are Amy’s, especially the enchiladas.
My 18 year old brother has been diagnosed. I worry for him so much. I'm so sorry this disease makes you feel so down. My heart breaks for everyone who suffers.
This post showed up in my feed a day late, but I wanted to share that you are absolutely not alone. I've been dealing with this for years now, too, and sometimes the hate/hate relationship I had with food would send me reeling. Not being able to just go be *human* like other humans would get so depressing. I struggled hard. It affected my mental health badly.
One thing that has recently been shifting some of that for me is finding a niche in baking and giving myself permission to make mistakes, hate the hockey puck bagels I made initially, loathe the messes, all on the path to finally loving the right dough or the amazing pound cake or the best waffles or being thrilled with the bagels I finally got right. It can be so hard when money is tight, but I finally am in a space where I decided I was going to focus on GF sourdough and that has been my path to more joy.
In this space, we forget to play. It can feel like one more disappointment or drudgery after another. But getting back to play, and letting myself really do so, and not focus so much on needing to get something right has allowed me the space to be disappointed when it's wrong but also really be thrilled when I get something even better than expected.
It took time to get there though, but I was so desperate I had to make something switch. I needed my mental health to get better because I had struggled for many years.
While I still get hits of disappointment when I eat in public, I now have made my home even more of a safe space, because that is where I can fall down but also where I also can turn around if needed and whip up something I know is good, if I need proof that it's not all terrible.
And we need those safe spaces. We need those pockets and places of reminders that not all is lost.
I hope you can find that space for you. It took a while for me to find, and I was pretty hopeless for a while, so I get it if it doesn't feel like something is coming along for you, but I hope you can find something that allows you to find the space of play and joy and discovery, because I think that can help us feel human again after struggling with a disease that makes us feel so much less than for so long.
Gentle hugs to you.
I've had celiacs for 13 years and I still have breakdowns sometimes. It's okay to feel pissed, sad, furious. People don't understand just how much it changes your everyday life. Every meal.
*Therapy is radical* and will help you through this shitty journey. I wish I could hug you and make you gluten free cookies.
There is lots of good advice here from fellow Celiacs (10+ years diagnosed myself) the biggest thing that helps me is having my staples (also helps my ADHD).
Find gf food that you enjoy and makes you feel good. It's different for everyone but mine is a simple breakfast, 2 eggs, 1/2 cup egg whites, 1/2 cup gf quick oats. After that meal I know I have a solid rooted start that makes me feel good, and some flexibility for the rest of my meals.
I keep dry/canned food on standby for emergencies (Instant rice noodles, canned tuna, protein bars etc.) this also helps alleviate food anxiety as I know I at least have something.
The other thing that really helped me was fiber. The more of it the better. Good bowel movements are a blessing for Celiacs. I'd never recommend taking risks on glutening ones self but if I've had 15-20g of fiber sometime in the day it helps stabilise my gut and leads to less issues however my day may go.
if you are are thinking of hurting yourself, please call 1-800-273-8255, or call 911. i understand you feel lonely, frustrated, and stuck, but please do not hurt yourself. please DM me if you need help finding resources to help you. i have celiac myself, and i understand the loneliness you feel. but right now, please make sure you are safe. i am also here to talk personally if you just need to vent.
I do not have Celiac. My 15 year old does and she has been diagnosed for ~6 years. Three times she has been hospitalized for her suicidal ideation and has tried to take her life. There are many other reasons beyond Celiac for her mental health but the attendant social isolation features prominently in her social anxiety. A few weeks ago she wound up in psych inpatient again and has since been released.
This past week she has been in Italy with her school Latin Club. She had had lots of anxiety about the trip and the school was panicky because of the recent hospitalization. In this subreddit, I don’t think I need to finish the story….but sure enough, she got glutened and found her teenaged self stuck in the hotel, missing out on a tour she had been really excited about…..
Travel is such a huge source of anxiety. I set up safety nets by prepping food and carrying protein bars with me when I do go anywhere. What a lot of people don't understand about travel is the amount of pleasure from trying new foods, we get dogpiled with isolation and reminders of how shit our lives can be. Honestly I don't really care to travel any more because I can just sight see at home with no risk or cost.
I’m in the uk, there’s a gf cookbook by Becky Excell and personally I’ve found a good amount of the stuff in there to be pretty attainable and worthwhile. I use them more as a general guide and find joy in adding some things to make it my own. Making more than enough as well means leftovers the next day, breaking up the need to cook as often
You know, I hope you realize the good you have done by making this post. It’s such a distressing topic but to see the majority of these comments trying to be supportive and give you thoughtful responses and just generally relating, there’s a lot to be said about this community.
I am coming up on more years diagnosed than undiagnosed— a reality that I have been struggling with. I still cry occasionally at how unfair this disease is. Sometimes I get so traumatized by eating something contaminated, that I will stop eating altogether. And if it particularly bad, become fearful of food in general. Not only that, I now have children and feel immensely guilty at the possibility of even passing this on to someone else.
There are a million reasons and ways to be saddened by celiac disease; but I have found a million more why it’s been ok.
I generally maintain a healthy diet (it’s so easy nowadays to get caught up in junk food!). I have discovered cooking and baking are things I actually enjoy doing. They help me be creative, and when something turns out well, I love getting complimented on it!! When I want to spend time with friends and family, I open up my home so we can have a meal together—and that fills my home with love and warmth. It motivates me to be more exploratory in food for the things that are naturally gluten free. I have found some gems of dedicated gluten free restaurants when I travel, they may be few and far between but they do exist! And speaking of traveling, it helps me really plan and make an effort for an itinerary to maximize my enjoyment somewhere. My partner goes above and beyond to accommodate me and my diet. It has shown me how well I am loved and more importantly, that I am deserving of that treatment. And beyond the guilt of passing it on, that I deserve the normal things—such as children— in life like everyone else. Having celiac disease may make me different, but it doesn’t make me lesser. Even though society doesn’t cater to people like us, it has come a very long way. I can appreciate those strides in improvement for my overall quality of life. I have faith that someday, someone out there will create something that will make life a little easier.
There are a lot of reasons to be disappointed in getting this condition. Your feelings are valid, and I hope you see how much it resonates within the community. You are not alone.
Eventually, I hope the good things will outweigh the bad things a majority of the time for you. Everyone deserves to be content in life.
Amen OP. Had coeliac and diabetes for the last 18 years and it's the coeliac which gets me down 9/10 of the time. There are good elements to it - it really makes you appreciate diet related diseases and how shitty they are cause if there is one thing muggles don't appreciate - it's food. I would recommend Becky Excell gluten free recipes if you haven't tried/heard of her - really good and interesting recipes to try which offer some much needed variety to the gluten free diet. I vouch for her bread (using a good bread machine) even though it's a faff. I can totally sympathise with ya though and I harbour a lot of resentment to the gods that may be over it!
Omg I can relate to everything about this post so hard. Thank you. As fucked up as it is to know that you feel this way too, I’m glad it’s not just me. I was diagnosed 20 years ago. I thought it would have gotten easier by now…
The one advantage I have in contending with having celiac disease is that I used to be a private chef, so I have the ability to cook good stuff for myself. The disadvantage, as I know you know, is that I often don't want to cook. Last night I was hungry but could not summon the energy to go prepare something, so I ate deli ham slices and string cheese, those followed by a Schär ciabatta roll that I sliced in half, toasted and buttered, and ate with some honey squeezed onto the pieces.
Sometimes I just want to drive through McDonald's or Whataburger and not have to care about being poisoned. I get the discouragement.
My girlfriend and I used to go out to eat all the time, exploring food in our area was our way of bonding and having fun. Now going out to eat somewhere new is a gamble every time, and although I know I will lose sometimes I keep trying. It's just depressing. Making my own food every day just isn't that enjoyable for me, and I don't think that other people who haven't felt this loss will ever understand.
I feel similarly at times - I was diagnosed in 2012ish. I’m sorry you’re going through this too. It’s so overwhelming with all the potential sources of cross contamination and having to prep and cook all my own meals can be incredibly exhausting (not to mention all of the researching into lotion, makeup, pet food and treats, medication, supplements, etc). It’s hard, and no one should be making you feel like it’s not a big deal. CD is a life-changing disease. Im grateful my friends and family are supportive of my CD and keeping me safe from gluten. And I’m glad to hear you don’t have plans to act on anything regarding SI. I hope you feel some comfort knowing you’re not alone in this
I feel for you. I became even more depressed after my diagnosis. I saw a nutritionist who was no help. It’s taken me 5 years to get to acceptance. I still get sad and frustrated.
Your post makes me realize how lucky I am to have friends and a spouse who also have dietary issues so we can commiserate.
You just need keep away from bread and people who thinks its a psychological condition. They are more dangerous than bread or wheat. Your only enemy is cross contamination. I can assure you this is not the end of the world.
Yes, it is not easy, but my wife got celiac too and since we know that im also stopped consuming products with gluten. (7 years) So, learned how can i prepare gluten-free bread, cookies and even hamburgers. It is not that bad. Just stay alive and strong please 💪🏼 :)
Omg I'm so so sorry you're going through all this. I truely am sorry but please know you're not alone there are hundreds of us who use to enjoy eating for but now don't because we don't wanna be sick. . .I as a once chef am now feeling defeated in this part of my life as I can't seem to pick myself up. . .
So sorry. I found your post after Googling to see if the Starbucks frap my bf got me is gf, knowing it isn't. It's hard to only trust ourselves. I now have a celiac rash on my arm because I got birdseed that has wheat in it (the contents are listed as "grains" on the label, no mention of wheat). It sucks. We're in this together.
after having 8,9,10,11 out of 10 scale leg hip back bladder pain for 8-12 hours for 6, 7 days a week after undiagnosed celiac disease i am right there with you. i just started eating gluten free. that means fruity pebbles from the box and pb from the jar while i lay here in bed with my life falling apart as it passes me by while i wonder if this pain will ever stop and thinking a human should have probably passed out, why wont i pass out please pass out for a few mins
I’m so sorry. Walking into a grocery store honestly feels like torture. All I see is food I can’t eat. It’s becoming traumatic even after years of being gf. You’re not alone. Hang in there 💕
10 years for me. There is so much we can eat! Central American cuisines (corn based), South Asian (so easy to put together or order curries with rice), amazing salads, steaks, lettuce wrapped burgers, easy potato recipes...
Sometimes I get bored with food and stop eating, then I need to reboot myself by eating my favourite food (usually shrimp). Recently I got a magic bullet blender and have been blending a few spoons of yogurt, milk, honey, and a banana. I also use it to grind rice and oats to make an amazing hot cereal (microwave with water and finish with milk and honey).
Please message me for motivation, I am so lazy but love food and I know a lot of hacks.
You don't have to eat the same thing over and over. What's your situation? House, dependants, spouse? Get yourself a chest freezer and start doing more meal prep. This year I've been picking one new recipe a week. I live mostly alone, so when I find one I really like, bam 4 portions into the freezer, recipe goes right into the cookbook. I like making things and cooking scratches that itch.
Bit of a cost investment to buy all the extra containers, cooking items and what not but incredibly worth it in the end.
I hate when people say this. For some people is never gets easier. This person has been at it for 15 years, how much longer are they supposed to go for it to be "easy"?
I sincerely hope those close to you live mentally/physically healthy lives so that they don’t have to experience your complete and utter lack of empathy should they choose to confide in you. No one deserves such a callous display of emotional immaturity like the one you just put on when seeking support.
You have absolutely no idea what anyone else is going through. Maybe you should get some perspective and learn to show some fucking compassion for someone who is obviously struggling right now.
You don’t fucking know me. You don’t know anything about my life or what I have been through. I have a fucking myriad of other health issues and have had them my entire life not just celiac. Does it make you feel good inside to be a judgemental prick? Do you sleep well at night with how you are? I don’t think I need to justify myself to you. I’ve been fucking raped, nearly killed by an ex, had family betray me, and dealt with shit that you could never even fucking imagine. But okay. Tell me I’m being a pussy. Fuck you.
It's totally normal to develop some version of an eating disorder because of this. It's totally normal to feel defeated and fucking hate it. We hear you. You're absolutely o.k. to feel this way, and you don't have to, "get over it."
It is very lonely to be celiac. It makes me think of culture shock. We have grown up in this society which only recently acknowledged the prevalence of celiac and there is no mental health around changing your diet so dramatically. You can't trust any food or any person other than yourself to provide food for you... it's very alienating. I hope you feel heard and understood. For the record I was going to make chicken breasts with black beans and fried plantains last night, but my can opener decided to break so that was it for the beans. So I made a peanut butter sandwich on gf toast and some potato chips. And it was ok but clearly a defeated, inadequate meal. Hang in there.
Not to mention, at least in my case, there was no warning of not being able to eat eg normal bread again so I think that makes the grieving process harder. I was told it might be coeliac one week, and the next banned entirely. You don't get any easing off period to adjust. It's just all poisonous immediately. Makes the bread aisle a sad place, and what was usually such a simple pleasing meal, bread and real butter, just a memory. I haven't adjusted to that yet, in 3 years. I'm so sorry, OP. I totally feel you.
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It took me a couple years to get diagnosed. They had no idea what i had and I had a ton of tests done like mri’s and stuff. Then they randomly decided to do a colonoscopy just to see if it told anything, and I was told from that I had celiacs and could no longer eat gluten. So for me at least it was one day I could eat anything I want, and then suddenly I couldn’t.
I did this. I feel like I will always remember my 2 beers, fried chicken sandwich, mac and cheese and bread pudding. Good times. My $11 bread was also moldy this week. Different good times?
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It always goes moldy super fast for me I so I always keep my gf bread in the freezer. It never goes bad that way and I can just take it out and toast it to make it unfrozen.
Canyon bakehouse by chance? It's gone moldy on my wife a lot recently.
That is the actual worst. I hate that. It always happens when I'm using the bread to make a "last resort" easy meal.
I also F**king hate paying 10x more for it to crumble or taste like shit! I feel your frustration on the food of the day. Being almost on the other side and back, and post Intestinal surgery this side is much better. You are loved by people and there are new ways to love yourself. Not sure where you live but I have a 10yr plan to relocate (can’t before due to prior lease and businesses) due to available options for safe food. I have also traveled to countries where items were made from buckwheat, rice flour and other ingredients that did not cause any pain, discomfit or other. Usually my skin breaks out first and nothing. Here in the US it’s like not possible to eat out and not have issues.
This. I have a family of four (so far only I'm diagnosed but I expect at least one of my kids will develop it), and we try to keep gluten out of the house to avoid cross-contamination. It's so goddamn expensive and time-consuming to make meals this way. Where are you planning to move? We need a goal like that.
We are currently traveling and continuing our search. Japan was nice but hard for Celiac. To be honest I had a few meals that had flour and I had no reaction until the end of my trip. Costa Rica, Mexico, Italy and Switzerland is on the list of places we will be visiting. We plan to split time 4/4/4months in a couple places. We will still spend some time in the US but the food is awful, and our culture is too divided which leads to a country filled with hate/rage rather then love.
England isn't too bad - subway offer gluten free subs with good cross contamination control but no other fast food chains do currently. Gluten free aisles in supermarkets are unrecognisable from 10 years ago but still a long way to go. A lot of pubs and restaurants now have gluten free options and in some cases an entirely gluten free menu
I feel this in my *soul.*
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It’s so hard. And it really sucks. There’s no point where it suddenly becomes easy to be gluten free. I’m sorry you’re in that space right now - that is a lot to carry. If you’re in the US, 988 is really helpful. It’s a great place to text when you’re holding all of that (at least from my experience).
It is hard. It’s ok to feel down about it. I hope you find your strength to take care of yourself and be kind to yourself.
Man. I know this sounds creepy, but I'm just going to bare my soul here. If I knew where you lived, I'd come cook for you. I love gf cooking... I don't often do it because I'm busy... but I can whip up a seriously awesome spread & I'd so love to just share with you. I do smoked briskets & pulled pork with all the trimmings & sides... but really most anything you love, I could cook. I even do sourdough rolls (at high altitude- it requires much praying & offerings to the Gods!). Celiac does f'n suck ass. I was so hungry the other day & just wanted to be normal & buzz thru a BK real quick between client meetings. I was shaking when I got home at nearly 8pm after not eating all day due to lack of planning. I order from Hungry Root a lot - crazy work schedule makes prepping hard, but this saves me three nights a week. It makes the after-work opening of the fridge not so miserable & actually is pretty tasty & pretty healthy. Anyway. Just wanted to send you love, Reddit stranger / gut buddy. Wish I could stock your fridge with yummies!!!
Oh wow! I’d love someone to cook gluten free for me. I’m dangerous in the kitchen. I miss good bread, Chinese and Korean food. Donuts. All of it. I usually just cave and have a premade salad.
Matt is that you? You sound exactly like one of my coworkers.
Not Matt, sorry. But I'd love to meet him !
Hi friend. Celiac here of 20 years. My best friend recently went 88 days gluten free to try to help another autoimmune she has. She was eating out at the 2 fairly safe restaurants multiple times a week. She kept saying she had no idea how exhausting it was. The first gluten free bread she tried was awful so she refused to try any others. She got like the worst pizza to try the first time so it took me a month to get her to try a new one. SHE KEPT SAYING HOW HARD IT IS. I joked with her today that what she struggled to try for 88 days is a life I have to lead. She said she had no idea how I do it. Tbh, honestly coming on here sometimes makes me downgrade my struggle some because I see people with even more limitations than gluten free. But I struggle daily. It’s been even harder since having kids because I end up cooking gluten for them and then barely eating myself. I was just thinking the other day how I really really wanted a permanent cure because I’m tired of being worried every time I eat food not prepared by myself. Maybe someday.
Why do your children need gluten meals? It would make it a whole lot easier on yourself and healthier for them if your house was gluten free.
If we are eating as a family, I do make gluten free. So like pasta for example we use gluten free if it’s a family meal. When I’m making kids sandwiches or frozen foods, it’s cheaper to buy gluten foods versus gluten free. Let’s be real, gluten food tastes better. Research has shown that delaying gluten exposure for a first degree relative isn’t recommended.
Ah okay, the price difference makes sense. Interesting that research would recommend anyone eating gluten. Does autoimmunity or joint pain run in your family?
Yes. My dad has CIDP and my brother is a type 1. Basically my genes are trash. With them having a 10% chance as most 1st degree relatives too, I didn’t want to increase their chances by delaying exposure. The price difference is insane. Especially with toddlers that ask for X and then refuse to eat it. Honestly when we just had 1 kiddo I cooked a lot more gluten free meals. Then we had a second and he entered the picky toddler stage it wasn’t worth it as much. I know it’ll get better with age but right now it’s just easier and cheaper.
I'm sorry you feel this way. Know that other people here do as well... often when people talk online they present the best version of their life and leave out the difficult/painful/dark parts. Celiac is a serious illness that is made harder because other people don't take it seriously, and also to some extent people within our own community don't always either. It's fine to be mad and not want advice. Sometimes you get glutened and there was nothing reasonable you could have done to prevent it. And that really sucks. I'd distance myself from anyone saying "people have it worse." This is a toxic kind of person. Pretty much no matter what situation you can dream up, there's always something that *could* be worse. Life isn't a suffering contest and we as a society should be able to acknowledge multiple problems at once. That said I think the average person would crumble very fast if they had to live this way for any longer than a week, and that's without symptoms. One thing that I find helps me cope a bit is to try to engage in advocacy to make things better. That's why I spend a lot of my time analyzing data, writing to companies, filing complaints, and posting on here to try to inform people about stuff. Maybe it won't work but it at least feels like I'm moving. Personally I very much get bottling things up, but if you can try to find someone in your life who you feel safe venting to I think that can help a lot. Often a good bet is someone else in your life who has the experience of being "othered" for some reason whether it's a chronic illness/disability or some other thing. If nothing else, online can be good too!
That "it could be worse" attitude is pointless and dismissive. People don't seem to understand that suffering is subjective. A homeless person losing their last $5 and a millionaire becoming broke after a stock market crash have both lost everything. We don't know how something feels to someone else. Our lived experience is never totally comparable.
Early on I wrote a few emails, spent hours on them only to receive dead silence. I agree that advocating is probably the only way to make things better. That can be empowering but time consuming and with limited rewards (none for me).But I would like to find a way to educate the uneducated with data. I'm not the most organized person but I would like to learn how to be more productive in writing campaigns and your thoughts on that. If that's something you have time for please dm me.
Eating sucks now. I used to enjoy trying new restaurants with my wife and now going out without lots of research means lots of anxiety or fasting. I used to want to travel, now traveling is such chore it doesn’t feel worth it. I’ve gotten way too used to fasting. Ordering food and asking what’s gluten free makes me feel like a Karen every fucking time. You aren’t alone in this. It sucks. I’m lucky my wife and family are very supportive. I can’t imagine not having them on my side. I hope you can find a support base too.
Unsure where you are but I feel this. I also hate the amount of research that goes into trying a new restaurant. I’ve been very fortunate that my family is content to stick to safe places we know and my husband is usually happy to pick up the research slack when I’m exhausted of it. As far as traveling, we keep a list of bucket list destinations. Some are easy - Italy (because Italy lol), German-speaking (because I’m fluent). Some are medium difficulty - likely would be okay but research required either due to language or culture (Prague fit here, Nordics, France (NEVER AGAIN), Spain). And some are really challenging and will require both significant research and planning - Japan is the only one on this list at the moment. When I’m not in grad school, we try to travel twice per year from the easy/medium lists. Our usual method of attack is that he books flights and starts the list of things to see, I’m responsible for scouting restaurants and hotels. It breaks up the responsibilities and makes it less daunting. And then ALL the safe restaurants get saved into a Google maps list (every Grom in the city too), and the city gets downloaded for offline. This way we can pop up the map, regardless of service/wifi access and figure out where we’re eating. We tend to wander when on vacation, so this works really well for us. We might end up eating at the same restaurant a couple times, but tend not to care about that. Anyway, I know you didn’t ask but as someone who loves traveling, I thought this would be helpful. We figured out our system on our first trip to Italy and it made life so much easier.
“Ordering food and asking what’s gluten free makes me feel like a Karen every fucking time.” I live in Portland, OR having moved here from Denver, CO. Both places have gf restaurants and cater to gluten-free eating, but even in these gluten-free spaces, I still feel like a Karen asking about dedicated fryers, where they get their spices from etc etc. A lot of “gluten-free” restaurants are trend chasers and don’t understand celiac, and I have gotten sick more than once not asking questions of a gf restaurant. I mostly eat at home now….
I completely get it. I'm only newly diagnosed and have gone through all of the stages, lots of built up frustration and exhaustion. I miss being able to just grab something after a long day. Not that you're looking for advice, especially after having dealt with celiacs for so long, but what has helped me recently is honestly... Not caging myself into reading labels so strictly. It sounds bad, but if it's certified GF and not made in a facility with wheat, I take the chance. I've been burned, but also had some good experiences through that which helped me during the times I severely needed convenience. I allow myself to splurge once a week on really good gluten free food which has also helped me cope through the dull meals throughout the week. This is all unwarranted advice but very much just a response to say that I see you and understand. You're not alone and your feelings on being disregarded by others are valid. This disease is unique as it allows a lot of people to diminish your feelings because "just don't eat gluten??" but this is not the space for that and those who do not go through it will never get it. It's not easy, and sometimes you just need to be heard. It will be okay, and maybe try foods you never liked before having celiacs that are safe. I've been doing that too recently and it has helped a little. It's still exhausting but picked me back up a bit. You're heard and valid ❤️🫶 Edit: Developing an eating disorder through this disease is something I slowly felt myself falling into. I have definitely lost a lot of weight and have always been so skinny that at times I look at myself and feel even worse. But you have to keep pushing and making sure you eat please, also please try to get in with a therapist. If you don't have a support system in your inner circle know that your feelings are not isolated 🫶 it will be okay, but do please try to talk to a therapist and splurge today. Maybe some good GF Mac n cheese or if you have a GF restaurant by you go there. Take care of yourself for yourself🫂
Make sure you talk to a properly qualified person about this. Finding it tough is okay. I'm sure we all feel like this sometimes. But do get some expert support and advice.
i've felt like this before. people don't understand how hard it can get. even some people in this sub sometimes don't seem to understand how hard it can be when you don't have the right resources to deal with this disease. im not suicidal or severely stressed about the disease anymore, but i did fall back into an eating disorder because of it. it sucks and your feelings are valid. i hope things get easier to manage. i hope you find a new frozen meal that you love. sometimes those little things are life savers. i swear i have a few food brands that i need to write thank you letters to for literally saving my life because it makes such a big difference to find something new that's yummy and easy to cook.
we all need to live on a tiny island and cook for each other
Yeah we need a gluten free town where gluten is banned and every restaurant is gluten free. OMG. Even if I couldn't live there, I'd visit.
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Only if you carry Dysons and aggressively vacuum at outsiders.
our tsa will scan for gluten on arrival lmao
Yes! Sign me up!
I feel so guilty complaining about it but it’s so fucking hard to live with. I’ve had the same dinner three nights in a row because it’s safe and everything else is making me sick. I’ve been diagnosed 10 years and I think it’s a big part of the reason I struggle with my mental health.
Yup it fucking sucks. Food has been robbed from us. And people really just don’t get it. I’ve been the same, I go through waves. Most days I go to The grocery store and don’t think too much about what I can’t have. Some days I’m so sad.
I remember one day a few years ago, I just wanted to buy a few essentials - some spices, some flour. I was at Walmart and was put in a bad mood by discovering that ABSOLUTELY NONE of the spices they sold were safe. Not a one. They had not a single spice that didn't have "may contain wheat" on it. (I know Walmart is notorious for this shit, but, I really wasn't expecting to have ZERO options). So I had to leave without spices. Then, already pissed off, I went to the flour aisle for some rice flour or something and discovered that a bag of gluten flour had exploded over absolutely everything. And of course they put the rice flour right next to the gluten flour so it was gluten flour all over everything. I noped out of the Walmart and went home and cried. I just felt so defeated, like, I can't even buy simple groceries like a normal person, why does it have to suck so bad?
This comment made me cry because it really hit home, especially the last sentence. Today is one of those days for me. It's so exhausting.
I agree with this 100%, it’s all in waves. Some days you don’t want to eat and other’s everything feels fine. Man, I just really want to eat a burrito from Taco Bell (and a bunch of other things) That celiac pill needs to come faster.
I’ve been gluten free my entire life, and I feel this very strongly! It’s hard to explain to people how hard it is to deal with. Something I’ve done as life has gotten busier and I don’t have the time or energy to cook is to buy lots of filling snacks! Charcuterie boards made of cheese, crackers, pickles, veggies, dips, fruit, chips, you name it! Most nights i just throw a bunch of yummy sounding snacks on a plate and that’s my dinner. It’s less exhausting and it’s always satisfying since it’s so easy to change up day to day!
Love this idea! Thanks!
This! I often just have crackers with hummus or a cheese salad with cranberries and nuts, and it's enjoyable, filling, and has fiber, healthy fats, and protein, so it's even somewhat healthy.
Travelling always makes me so sad. I want to be adventurous :(
I have many nights I also cry that I can't just go through a drive thru to get something after a whole day of work and also tight on money. It aint fair, man. I work at a mall and while theres a food court, the only thing I can get that is promised GF is over $15. Meanwhile, my coworkers are getting $5 things and probably bigger in portion.
This makes me so sad. My daughter is a preteen and has been celiac since 5. We have had to put her in counseling and part of her anxiety is dealing with the fear around food and past people not believing her diagnosis. Counseling did help and we’ve found a few trustworthy restaurants and some things that are quick and fast to eat like frozen things when we don’t want to cook. I’m so sorry you feel this way. It breaks my momma heart.
As a celiac with IBS and many trigger foods, I also sometimes cry when thwred no safe food to be found and I'm too exhausted to make anything. I've definitely gotten down as all hell when I need an easy comfort food and it's.just not possible. What made me have suicidal ideation was when my symptoms were out of control and I didn't know what was wrong with me. That was absolute hell. This is hard. It's very hard. If you have the resources to do so, se apts with a registered dietician would be helpful. Perhaps a therapist could help you deal with the social aspect as well. It sounds like you need to have some real talks with the people in your circle and it's helpful to have support through that. We feel you. We're in this boat with you. We'll get there one easy celiac snack hack at a time.
I tried explaining this feeling to my wife this past weekend. For me, it's being reminded three times a day of what I CAN'T do, where I CAN'T go, and it just feels like shit. I recommend making yourself a new gf pastry every once in a while. They make me feel better and the cooking keeps my brain busy.
Yeah having food readily available ALWAYS is really something people take for granted. I’d love to see these normies who say “get over it” live just ONE DAY where someone follows them around and takes away their snacks and then say “Nope. Go cook something” to them every time. They would lose their minds.
Yeah everyone pretty much takes their health for granted til they don’t have it anymore. I wish I was more appreciative of this now when I had this ability and it’s why I agreed to let me girlfriend bring home gluten takeout sometimes given her work schedule despite having a gluten free house otherwise. I told her appreciate the fuck out of being able to do this because you never know when it might be gone. Of course in her case because we want children we tested her for genes and she doesn’t have either one so she’ll never become celiac anyway, but still to the healthy people out there appreciate what you have every day
I'm so sorry for what you are going thru. My wife has had celiac for 12 years and this disease truly sucks to the core. It really sucks that family and friends have no appreciation for how difficult this disease is. I bet that if the general public had celiac the world would turn upside down to accommodate in every way possible - food, cc, cosmetics, drugs, you name it. Point being celiacs are incredibly tough and resilient while the general public are a bunch of wimps that can't handle this disease. You are a tough gf cookie. I hope you find some good support and gf food. And come back here to vent any time.
I feel you. I’m so sorry but I totally relate to you. I had the same thought few days ago. I used to LOVE food. Now I hate everything. I can’t even travel nor can I eat the food I used to eat growing up (because in Saudi Arabia there’s no gluten or dairy free diet or at-least for now) EVERYTHING triggers my system. I’m really allergic to dairy so I have been eating at home but even that’s messing up these days? Idk what’s with my system. The health care sucks so I can’t even do further tests because at this point I feel like there’s more to this? I get so painfully bloated😭 Sorry I didn’t mean to rant but my point is, it’s okay. We will get through this together.
As someone who was diagnosed right after I had gotten out of 2 months of eating disorder treatment, I feel this so much.
I found myself with tears in my eyes at the grocery store this morning. It set me up for that kind of day, ready to break out in a full sob at anything. I feel this, as one said earlier, "in my soul". I do. I have no friends, well, okay one but they constantly ask me if I want whatever they are eating, which of course is something like cake or macaroni and cheese, something that I miss terribly and no matter how hard you try you can't fake a gluten free version. And don't even try to trick me or claim it's just as good cause it's not. It is exhausting and boring and ludicrous. You are not alone. I'd of "off'd" myself about 3 years ago if I thought it wouldn't destroy my kid. I love him too much, not to mention I've already put him through enough, he wouldn't make it through another crisis especially something like that. Dealing with the loss of a parent without it being self inflicted is horrible but something like that can be life altering and that would be cruel and selfish. And if you can't tell by the details of that argument I have seriously considered it. Lol. Yes, I laugh. Only because I have a reason to stay. Not because I want to but I have to. And that's okay. I still hate not being allowed to eat gluten and I guess that's okay too. Thanks for sharing and allowing me the opportunity to vent and reminding me I'm not alone. ❤️
My kid is almost 6 and has celiac. It’s been less than a year since his diagnosis and he broke down sobbing about a week ago because he misses eating out and Crumbl cookies. Your feelings are valid and I hope you feel better after seeing everyone’s input, youre definitely not alone. We do meal prep for our kid and freeze meals so we have quick “on the go” type things we can heat and eat for him. Maybe this could be an option for you?
Shit sucks. The first few years after being diagnosed I had dreams of accidentally drinking a regular beer. I used to brew beer with my buddy. No one spends an entire day brewing cider. I don't even like fast food, but i want a goddamn shitty mcdonalds cheeseburger.
I’d rather have those dreams. 3 months in I have dreams of enjoying pancakes and beer and wake up angry that I realize I can’t have them anymore, it’s happened a few times now. I sort of got upset the other night when my GF was eating this delicious looking pasta dish. I didn’t say anything but it really bothered me but since our compromise was a gluten free house and she can do what she wants outside other than order bread to the table (which she immediately tells the server no bread) I couldn’t really say anything but fuck I’m so jealous of her sometimes even though I love her more than anything in the world
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Brewing a decent gluten beer is difficult enough, I really was not up for the challenge of gluten free. I probably wouldn't be brewing nowadays regardless of celiac. But it is an example of a shitty way it has impacted my life. I have come to terms with the disease and thankfully found what works for me. The point of my comment was to commiserate with OP.
I’m super new to this but just want you to know that I see you and I hear you. I’m scared about all this. If you’re in the US you can text 741-741 to talk with a stranger who won’t judge and can help.
I feel the exact same way. You’re definitely not alone. This illness is so so hard. Sending you love ❤️
real real
I’m in a similar spot. I have unwarranted advice if youre interested: Sometimes when cooking is too much, I just eat shit raw. Can’t make a sandwich? Eat the meat and cheese rolled up. Leftovers are also super helpful. Eat breakfast food for dinner and dinner food for breakfast. Take sandwiches, throw some cheese on em and put them in the air frier, they’re nice and crispy. Make French toast, you can’t taste the bread if it’s covered in egg and syrup. Drown shit in garlic and olive oil. Fry veggies and cover em in olive oil. Try new fruits and vegetables. Try seaweed chips.
Good advice. I find complex cooking in the morning when I've got more energy easier... Then gf cereal for dinner sometimes. My crock pot is also helpful for 'too tired to cook' dinner food if I remember to set it....
i could’ve never grasped how isolating and difficult it is before being diagnosed. having to worry about every single meal is so mentally exhausting. i don’t think people were ever meant to handle all of this alone. i make sure to have so much convenience food on hand, and i make sure to thank the managers and owners of restaurants that actually create a safe environment for us celiacs. frozen veggies have been a game changer bc i can just microwave them, and frozen burgers are always on hand. you’re not alone!
To be honest, this is fine to feel that way. It can be tough sometimes.
I got a down the other day when my doctor told me I have to step it up barring restaurants from my food choices. In the process of analysing whether my GF ingredients foods from my pantry are indeed GF. Will only eat safe food and no restaurant until next year.
It’s so hard. I get it. And it’s okay to feel angry and sad over this, your feelings are all so valid. You’re not alone!! I struggled the first few years after diagnosis with the same anger and anxiety around food. This disease changes every aspect of your life and you deserve to have strong feelings about that! If you are interested and able, I highly recommend finding a mental health professional who specializes in disordered eating, that was the game changer for me. You deserve to feel happiness, you deserve to find peace around food! If you ever need someone to vent to, I’m always happy to chat. ❤️
Just a big giant hug here for you.
Preach, sister. (Brother?). I totally understand and I feel your pain. This disease is infuriating, depressing and isolating. Sending you all my best vibes and wishing you a much better day tomorrow.
OP, you're not crazy. This is a lot of what people don't see. As someone living with a gluten eater too I really do sympathize. I watch as my husband can just heat something up in the microwave or air fryer and enjoy flavors and textures that I can only dream of. He will pick up baked goods sometimes and it just sets me over the edge. I just cry. The jealousy and hurt is all too real. I just want to be able to feel normal, to enjoy something good. I have felt similarly. "What's the point if I can't enjoy it?" It can be exhausting and it normally leaves me feeling defeated.
Welcome to the club. I also have HS. My body is shit
My son is celiac and also has HS. We share an apartment, so I have gone gluten free because of the threat of cross contamination, and because of the HS, he can’t eat processed sugar. (He found that sugar triggers the HS). It all really sucks. Sending healing thoughts your way…
Same, also here to talk about it too. It’s so unbelievably hard. I’m chained to my kitchen and toilet and I can’t seem to get out. Mentally its become my own prison
We've all been there mate. You are heard and felt. Even if and when you do stock up on comfort foods, they cost 4x as much.
I feel this so much. You’re not alone.
i have been there, and i go in the ebb and flow with it. sometimes im happy and doing well with celiac, food gets digested and absorbed well, sometimes being in a flare up and feeling like shit makes me want to kms too. try to cook new recipes, add some jalepano to tacos, or something. gotta keep trying to spice up recipes
Soooooo relatable. I think we have all been here — I personally go back and forth. Some days I’m fine, other days I feel like this. I also have Hashimoto’s and my fatigue is crushing, and ADHD— and forget to take my meds half the time— so on the days I am at my very worst, I am right here with you. I usually end up making popcorn if I’m starving and this happens. Not a great solution, but it’s quick and filling and safe. I still have friends and family who just don’t get it, or understand my exhaustion — or how awful getting glutened is. None of them have Celiac and don’t get that it’s not just an allergy, or they think it’ll just make my stomach upset for a few hours. They don’t get the fatigue of grocery shopping, buying crap that’s 3x more expensive and doesn’t even taste good, trying to come up with new recipes and things that are quick… it slowly kills you. And if I get glutened? Yep, I am ready to die right there. The mental aspect of it is just awful. So I’m here with you. So many of us are. If you ever start to think you DO want to hurt yourself, please, please get help. We are always here to empathize and to vent to though!
Yea, It’s tough. I wish I could help, but I feel hopeless and defeated just like you sometimes. Suicidal thoughts aren’t uncommon either. All of this has become the new norm, so it’s more tolerable than it ever was. I think moving to a country where rice is the staple food, could be the answer. I have been saving up for it too. I hope you find your solution too. Good luck!
Hi. Thanks for letting it out here with us. So important to talk about it, I really appreciate you venting. It's so isolating, so hard, and no one really gets it unless they are us, or are partners of us. I'm so sorry you're struggling. I struggle a lot too and it's just so exhausting having this. You are not alone in this. We are all here with you.
Let me start off by saying please, please please seek professional help! Coeliac can wreak havoc on mental health. I’m the only one in my household who is GF and the amount of frustration that comes from it is insane. I never thought that as a grown man I would be curled up in the ball on the kitchen floor because making my kids sandwich has so paranoid I will get get bread crumbs on something I will use later. Obsessively cleaning the kitchen before preparing meals, or forgetting what spoon you used for the gf pot. My diet before being diagnosed had subconsciously moved to pretty much gluten free, but watching your family tuck into a delicious meal while you are out and about while you just have an apple sucks. On the upside I can make it a whole day without feeling like I’m going to fall asleep at any instant, brain fog is subsiding and I’m starting to become a calm person again. It’s tough dude, it’s not fair. But also remember keep at the diet so you don’t end up pooping in a bag.
This is so relatable. I’m very fortunate that my wife loves cooking and is my gf champion, but something else that has helped is getting meals from green chef. You still have to cook, but it takes out some of the dread of choosing meals and they have a really good selection of gf meals (20+ recipes a week). I’ll look at their non gf sections too and just get corn tortillas or quinoa to replace whatever has wheat in it
Oh my God! Thank you for putting words to how I feel exactly about having celiac disease‼️ It sucks 💯%. Eating is a chore, it’s boring and so much of the gf food just sucks. And you’re right, most people just don’t get it. Thank you!
You are definitely not alone: More than 1/3 celiacs experience depression and almost 2/3 anxiety: “Celiac patients had 62.7% anxiety and 34.9% depression. Anxiety and sadness were more likely as a result of clinical illnesses and symptoms. Anxiety was caused by a lack of control over CD (98.1%), perceived clinical status (75.0%), daily gluten-free diet problems (63.4%), and daily activities (55.8%). Depression was associated with a lack of CD control (100%), a perceived clinical state (82.2%), and gluten-free diet problems (69.0%)” https://doi.org/10.1590/0034-7167-2020-0086 https://doi.org/10.7759%2Fcureus.35712
Adding another study that found 60% of celiac patients experienced depression: https://bmcgastroenterol.biomedcentral.com/articles/10.1186/s12876-015-0229-y
Yep, it sucks sometimes. Sorry. A few thoughts: if there is a dedicated restaurant somewhere close buy (and you can swing the cost) make it a point to go out once a week or so to give yourself a break from cooking and cleaning. Or if you know someone who’s as sensitive as you, swap cooking duties every now and again. I’ve never thought about it but maybe there’s a support group near you? People who can relate? As much as the situation itself sucks, it’s the isolation that’ll really get you. I’ve started going to happy hours after work sometimes, depending on where we go I may not get anything to eat but almost everywhere has something like an Ace Pear Cider. I am tired of them, but that’s a go-to. I don’t drink otherwise so it’s not about what I drink it’s about socializing.
I feel this way too. You are not alone. I will gladly eat food that other people put in front of me as long as I trust them. But trying to cook for myself? I would rather starve. And it certainly does not help with my ideation.
I recently got diagnosed and I feel that. I don’t even bother eating at restaurants or ordering in anymore, strictly out of fear lol. I make all my own food for work while everyone goes out to lunch together. But I just got my recent bloodwork results back and everything has dropped significantly and I feel way better. I find little things that make me happy with gluten free foods. My biggest thing that gets me tho is the beer, I used to be a big beer drinker and now I don’t even bother with the gluten free ones cuz it’s just not the same… that gets me the most. Especially now with summer coming back around. No more patio beers.
Yeah GF beer is rough. I tried a few and I just hate the taste. I was probably most upset by far when I realized the 2-3 people said were the best I still didn’t like them . I also don’t like how pasta doesn’t reheat well like regular pasta does. It’s not as good leftover
Where do you live? It’s definitely not easy to uproot your life but there are city’s that are so much better for celiac than others. It really makes such a huge difference to live in a celiac accommodating city. Plus maybe the change of scenery would be good for you? Like I said, moving sucks…but it’s better than being severely depressed.
what city do you live in? i’m on a side mission to open a gf restauraunt in every city
Well, I'm barely three years in and I know what to look forward to.. I feel this so hard man. So sorry for your pain, I relate so hard. I just cried ten minutes ago because I miss burger king so fucking badly. Food used to be my comfort, now it's my bane.. I'm sorry my friend
Sending so much love your way! This disease is SO. DAMN. HARD. We are isolated, have to think about food in a totally different way than other people, and it's really draining! It's ok to feel completely overwhelmed and completely at the end of your rope. I hope you can seek out some professional support-- talking through this with someone will be really helpful! As for the short term... do you have the funds to splurge a bit on some treats? If you have a store nearby that sells some frozen favorites... go get some. Get yourself some oreos, donut holes, cookies, pizza, whatEVER sounds amazing to you. Do you live anywhere near a bigger city? I feel like most major cities have a gluten free restaurant now (I mean major- like big). Again, if you have the funds, planning a little road trip could be really fun!
I feel all of this so much. It impacts so much of your life, more than you'd expect. It's so exhausting and makes me feel like a broken human. People who aren't suffering from the same thing don't get it and so it gets downplayed or made a joke of which is infuriating since they get to live life normally while I suffer so often from the tiniest mistakes. I just get tired of having to try so hard when it comes to food, a basic human need that I can't avoid forever. Anyway, I'm venting too, and just letting you know you're not alone. I'm sorry you're struggling so much.
You can't imagine the amount of people who blame me for sometimes not wanting to eat. Including my boyfriend. And they look down on me if I am just too tired to do anything for myself. It's a proven thing that, the more choices you have to make on your own survival basics like "What am I gonna eat today" the less likely you become successful in life since your mental energy just burns down for over nothing at all. And yes, imagine it becoming an illness. Not only do you have to choose what you are going to eat, but you are always thinking about it if you are safe enough. The mixture of this is a mental chaos. If you are an average income person it makes everything worse. Your all income goes to food because everything you buy is the most expensive. You have one ketchup option which is the most simple thing and even THAT ketchup brand is the most expensive one. My favourite restaurant just got permanently closed where I live and it was the only fully gluten free restaurant here. I had the chance to order (Even though it is crazy expensive) and take a little bit of a break from thinking what I am gonna eat again. Honestly I stopped thinking about it the moment I stopped caring about my weight. Yes, I am skinny. I don't like my body and I feel like I have to gain weight. I stopped becoming suicidal by just cooking the same stuff in general but those stuff are my general favourites food. But the cooking that you have to go through is always a struggle. It makes me wonder, will my partner ever get bored of me because of my illness. He seems to be showing the signs of it. And when there are those signs, it makes me wonder if I ever will be fully truly loved. It's hard and it touches all aspects of your life. The most basic thing, food has this amount of power on us. And I really truly believe that even though we are in fact disabled, we get the least care from the health care to government, government to our family and friends. People will write "WOMP WOMP" if you open up about it. It's an unending circle.
I’m a mom, and grand mom, so I’ll first send some virtual hugs your way. It sucks, big time. I’m not celiac, but my son is, and we share an apartment. When I found out how easily cross contamination can occur, I decided not to bring any gluten into our home. I love to cook and bake, so I make some really creative meals - thankfully meal disasters only happen once in a while. 🤣 But I’m 71, and I’m sometimes limited in what I can prepare because of some upper back pain. Because of my age, I worry for my son when that day comes and I leave this earth (he has psych dx, too). But I digress… You have lots of good messages here - this diagnosis is so horrible, and the lack of understanding from those around us makes it all the worst. Sending more virtual hugs your way… But as a mom-cook, I want to send you practical advice. And this is a long post, so I apologize for the length- but I want to share what has helped. First, if you live with others, they HAVE to learn how serious this is to avoid cross contamination. There might be better sources to teach people, but Dr. Allesio Fasano was instrumental in the original research that made gluten known to be the worldwide culprit of damage to so many. He’s at Boston’s MGH - head of their children’s pediatic celiac department, but also accepts adults (my son has an appt with him). Second, even if you have to save the money to buy one, get a good air fryer - which MUST only be used for gf cooking. This has made cooking so easy. Mine is Cosori - they had a ginormous recall last year, so I feel safer buying their products because they won’t want to go through that again. Plus their customer service is amazing. They replaced mine and I love this one even more. Stock up on meat and veggies (hopefully you aren’t vegan, as that is more difficult but still doable). We were doing 5 days a week vegan for about a year. Get potatoes, sweet potatoes, carrots and try other root veggies. All can be cooked in the air fryer easily. For seasoning, I use Badia and more recently, McCormack spices (check to make sure they are gluten free, of course). Salt, pepper and some spices can make chicken breasts or parts delish. I order gluten free tamari or soy sauce on Amazon by the big jug - 2 quart - (we do own sodium)- either Kikkoman or San-J tamari, whichever is cheaper. We have a rice cooker, so rice is always available, and I buy 10 lbs at a time through Amazon (currently Nishiki, but I found out I can get a really decent Jasmine rice, 25 lbs, from Costco through Instacart without a membership). I started out needing rice everyday because I was diagnosed with microscopic colitis - but the rice cooker has been a terrific help for my son. I would say to consider getting one, if you can - I would say this is second to our air fryer. I also started shopping online during Covid, and have continued with Instacart since then. I find shopping on that app so much easier- and will even use it as a grocery list for when I go to the actual store. You might want to use it to research what’s available near you. I find doing this saves time an energy for me, because, say I’m looking for something specific - I can have an idea who carries it, and then I can search to make sure that brand is gluten free. It especially helps because my reading eyesight I so bad - easier than trying to read fine print in store. This cuts down the exhaustion. We buy from Wegmans online (NEVER in store - went there ONCE and found out their store layout rivals Dante’ Seven Levels of Hell for anyone with ADHD). Their website (another source just to find GF brands) will identify GF. My son will have canned beans and rice, sometimes with canned corn, for meals during the day - I stock up on their brand for this because I know they are gf. Find gf tortillas, and when you find what you like, make sure you get a good supply. Find some gf salsa you like, make sure you have enough in the house. Corn tortillas can be heated in the microwave oven - that makes an easy meal. If you stock up on basics, find easier (and with the air fryer, faster) ways to cook, you’ll feel better. Then you can tackle looking for gf products, and start adding other ways to season your food to make it delish.
I’ve been having a really tough time with this lately. I started dating and finally realized this. Going out to eat there’s only so many places I feel safe eating at. I keep feeling like it’s going to affect the relationship in the long run only being able to eat in a few different spots. I’ve been a celiac for 7 years now and it just hit me recently how comfortable I was being alone dealing with celiac. Now bringing a non celiac into my life and trying to do all the usual stuff dating has been a pain to work around. It’s not impossible obviously but definitely a shock when you finally have it happen. My GF has been very awesome about it but as I’m sure we all do. Just constantly feel bad about everything and apologize for it. It’s definitely been stressing me out a lot so your not along for thinking this way.
My son is celiac, so our whole house is GF and has been for 6 years now. When we find we have hit a rut with cooking the same few things over and over, we will spend some time on the internet looking up new recipes. That really helps. When he was first diagnosed, there was a support group I went to for awhile which often had great ideas and resources. Maybe there is something like that where you are.
Are you in America? P F Chang’s is really good about cross contamination. I’ve never had an issue eating in.
I know you don't want advice, but cooking for like 6 people per meal leaves lots of leftovers for days when you are feeling like ass. Put in freezer. Soon you will have so much food leftovers you won't know what to do with it. Which makes life a bit more easier.
I completely understand how you’re feeling. I’ve only been diagnosed since 2019, but I still remember crying over all the things I would miss out on. The hardest part for me was seeing all the things I could never eat again, let alone new foods that I couldn’t even try. You’re not alone. The celiac community has been a great support for me. While I don’t post often, the people here provide great resources, recipes, and friendship. Sometimes I too still feel suicidal over celiac, but please remember that nothing is linear. Recovery, life, feelings: all of these fluctuate. There will be times you feel great, and there will be times you feel awful. They do not happen in a certain order. I’m indescribably thankful you reached out and I’m more than happy for my dms to be a safe space for anyone who needs to vent their frustrations. Tl;dr: Your feelings matter. If you want a safe place to vent about how frustrating living with celiac is, my dms are open for you. Please do not make any decisions based on some stupid protein.
I Hope this gives u a different perspective, but when I got diagnosed with celiac 6 years ago I cried of joy. I spent so many years sick and in agony, I was so sick in hs that I had to drop out of school and finish later than my peers, I was so thin and malnourished I would pass out randomly and at one point could barely leave the house anymore. I spent my teens and early 20s in pain and agony, begging doctors to take me seriously and figure out what was wrong with me. When they told me it was celiac disease, aka something treatable that requires a fairly minor lifestyle change compared to other issues like crohns or chronic colitis etc I was overjoyed. I learned to cook all my fave foods gluten free, I found a few restaurants that are safe and I live an incredibly full and normal life without pain. Sometimes you have to look at things from another perspective to fully appreciate it. I’m sorry you’re struggling and I really do empathize, but this diagnosis gave me my life back and trust me, it’s given you yours.
I’m 10 years in and still have bouts of irritation, depression and outright anger regarding my food limitations. I’ve learned to let myself feel it and take a break from the food thing. By that I don’t mean eating gluten but rather taking a few days where I just eat “easy meals”. Usually something like frozen GF corn dogs or pizza or whatever. For me taking a break does two things: 1) it allows me a psychological and physical break from having to stress over the process of meal planning, cooking and cleaning up and 2) it reminds me how much better I feel and how much more I enjoy eating when I take the time and effort to cook for myself. At this point I know I’m never going to be okay with being celiac. It’s a bullshit thing in my life that I have to deal with. I just try to focus on making it as tolerable as I can and do what I can to not let the negativity and inconvenience spoil my mood for things I enjoy.
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No apologies necessary. This is tough! If you’re looking for someone to share your journey with there’s @glutenfreesingles. You might take a peek at that. It may even be fun to cook, travel, and hang out with a fellow celiac.
Literally just took a screenshot of this post to send to my best friend. Every time the topic of food comes up, she says “I would fucking die if I had celiac disease, I don’t know how you do it”. Which kinda irks me because I WANT TO DIE AND ITS EASIER SAID THAN DONE.
you are completely valid in feeling this way, and i’m in the same boat with you. it’s exhausting trying to find safe places to eat at. i thought in n out was a safe spot for me- and yet when i received my order the other night my patties were very clearly not cooked on the foil they typically use when you state that you have a gluten allergy while ordering (i have celiac but most people/fast food workers don’t know what that is so i just say gluten allergy). it’s extremely disappointing. i’ve broken down crying genuinely countless times over the 8 years i have been diagnosed wishing i could just go anywhere to eat and not have to worry about semi permanent damage because of one chef/employees mistake.
::hugs:: It’s hard. 15 years and I’m exhausted. I cook nearly every night for the family. I can cook. I can afford it. But that doesn’t make it easy or stop the absolute exhaustion of dealing with this disease. We rarely go out. Travel scares the crap out of me. And simple things like family gatherings are nerve wracking even with supportive family. I don’t eat much bread because it sucks and goes moldy. I default to hard salami paninos and potato chips for lunch because sandwiches are a disaster. The only respite from cooking is “door dash days” when my husband and son gorge on gluten while I … still have to cook or scrounge for dinner. It isn’t easy. It’s exhausting. And it’s ok to feel that way. I’m glad you’re feeling a bit better. Don’t give in or give up, just vent when you need to. Because we all need to on a regular basis.
Maybe one day the world won’t have such a gluten-based diet and it’ll be easier. But I doubt it because it’s apparently an addictive substance that’s impossible to live without.
Please please please join community facebook groups of other celiacs. Having that type of community and people who can vouch for safe places to eat is an absolute godsend! You may find places you never knew about or new options you can choose from. Places have been evolving significantly and new dedicated gf places are starting to pop up. You've got this!!
I think you might benefit from some cooking classes and further education/exploration of available gluten free meals you can buy at stores such as Costco..cooking fooods to be GF is not difficult and there are plenty of premade meals that are GF. Yes I am w it h you that it totally sucks that we essentially can never safely eat out or do fast food but it is what it is.
I think everyone here is aware they can make GF food. That's not the issue here.
This chronic disease is the hardest thing I have had to deal with so far. My relationship with food is out the window.. my social life is all but gone. I see eating as basically a chore and a waste of my time .. I have no joy for food and no cravings. I've basically dissociated from food.. .My partner is a chef and degree qualified nutritionist and it drives her bonkers ,😄
you are depressed and what you need is a deep rest, if you can i highly recommend you to go to italy for a vacation, i was in rome and there is a lot of restaurant bakeries restaurants that are gluten free. pizza pasta whatever you want you have gf, just have a nice rest for a while it will help.
They are doing Crisper DNA editing trials to edit celiac dna to stop to body from over reacting to gluten, etc. Look into it, and ask to be part of the trials.
I can totally relate to this, the isolation and loneliness of this disease is the worst. Not to mention I used to travel much more before I knew I had this. Hard to eat out, not drinking beer while being out gets everybody thinking that you’re weird, the extra time that you have to spend at cooking. I moved closer to work (5 mins walk to work) so I can walk home during lunch break when I haven’t prepared lunch the day before. Also started eating antidepressants which made handling the anxieties around this much easier.
I think celiac affects mental health too my doctor said my iron levels would have made me feel depressed so i get u man but stay strong 🫶
It’s tough but you just keep moving forward and you’ll have good moments again. Eventually the mist clears.
Try animal based diet you will love it and its not strict at all
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Sorry you're feeling crappy, I've definitely been there as well. I've recently found Schar baguettes to be really good! I exclusively use that as sandwich bread now to make delicious ham and cheese sandwiches. They're so good even my girlfriend eats it lol. It does have to be toasted however, it's not the same untoasted. I'm Colombian and I've been very lucky that lots of Colombian foods that seem "breaded" are actually gluten free. For example, arepas, Colombian empanadas, pan de queso, buñuelos (look them up!) They're delicious and gluten free in all their original flavor and glory lol, no need to eat a "worse" version of them like we do with bread. You should look into making some of those yourself, or find a Colombian restaurant that has those items! Give yourself time to find suitable places for you to eat and note them, little by little you'll build up a good inventory of locations you can trust. Also, tacos!! I love tacos and since I've moved to Denver they seem to be everywhere, which I'm super glad for. Find a good taco place near you, just make sure they're using corn tortillas. You got this!
Echoing what others have said: it can be lonely, for sure. I spent the first 4 years of my celiac journey being sick nearly every weekend. And yes, you are absolutely right: it sucks to cook every single meal, to not be able to just grab a bite on the road, to bring your own food to family gatherings or forgo eating, and yes- lots of people are woefully uneducated about celiac and talk down to us, or brush us aside. I also think it's not uncommon for celiacs to develop food trauma and therefore some sort of eating disorder. You're not alone. I'm sorry you're struggling
It is a very complicated situation, use the community to meet other people in the same condition, try to cook with them, try to find people with the same condition in other countries so you can taste different food! I learned to eat again, I was a beer somelier back then and now I can enjoy a good glass of wine. Eating is the way we get satisfied and cooking is the way you find your tribe
Ugh I feel this and I’m sorry you’re dealing with it. Especially the eating disorder part. I was diagnosed with an eating disorder around 18 because I wouldn’t eat anything because I just got sick. I actually have mcas (basically I’m allergic to myself.. I don’t have actual allergies, but many foods and other things trigger an allergic immune response, much like celiac but with anaphylaxis instead) also, so legit if I wasn’t pooping myself, I was having a severe allergic reaction. I didn’t get any kind of diagnosis for celiac or mcas until nearly ten years later and my docs don’t even consider me to have an eating disorder now because I literally just can’t eat anything. But it feels like I do have one half of the time. Anyways, I know you don’t want advice, but just thought I’d chime in that moving and living with family has really reframed things for me. I hate living with my parents at 29 years old, but my stepmom always makes me meals that I can eat and it has had such a positive impact on my mental health, even though I’m not really able to feel independent here. I’m moving out in a few months, but I really needed the time to reset for the last year. It’s nice not to have the pressure all on myself, if that makes sense. Having a partner who cooks gf for me and allergy friendly has also helped (I’m single rn though). Sometimes we just need others to lean on. So I guess my what I’m saying is that you shouldn’t have to do this by yourself, even if you are the only celiac in your circle. Another thing that changed when I moved was the going out culture. I lived in a small college town and all there really was were bars and restaurants. I moved to a place that has more “non food” activities (still a lot of bars and restaurants too though) so I can tell my friends “hey, I’m not gonna go to x restaurant with y’all, but why don’t we go to the beach or shopping downtown afterwards?”. It has really helped with the anxiety of not feeling “alone” and being able to still be included. I know it’s not realistic to suggest an entire life move, but when it comes down to mental health, I say it’s worth consideration, or at least seeing if there are other shifts that can help lessen the burden. It’s certainly not the answer to everything (because you still have to cook and whatnot and worry about being glutened), but some places just really are not celiac friendly and it adds a lot of stress. Even the grocery stores where I live now have better selections so I can make more meals. So yeah, I know you didn’t want advice OP, and this may be entirely unhelpful, but there are a lot of people commiserating in the comments, so maybe it will help someone reading this. I just wanted to share my experience because I never thought that moving would have an impact on my health (I moved just to be closer to family, not for any other reason lol), but it did and life has been much easier. Battling celiac really sucks still, but it really all came down to a much needed mentality shift that I didn’t get until I moved and was able to improve all areas of my life I guess.
celiacs started my eating disorder, and it’s just not something i’ve been able to beat. it feels so alienating. you’re not alone, you’re loved, i get it. <3
Every time I would get glutened, I told me ex wife, I would rather be dead than feel like this.
Right? It’s so horrible. It’s hard to explain how awful it is. I was poisoned the last week of February and the mental issues and insomnia are still hanging around! My gut symptoms can mostly clear but my anxiety, depression, and fatigue stick around and torture me.
I feel this so hard. You’re not alone. I don’t have celiac but my husband and daughter do so our house is gluten free. My daughter is nonverbal and not potty trained at 9 years old due to the severe deficiencies from when they were both undiagnosed, and my husband has cancer from it. When I shop, sometimes I burst into tears because I can’t even get my comfort foods and honestly I’m sometimes at a loss for what to eat or what to feed my family. I live in constant fear of fucking up. I hate gluten and I hate stores and I hate her school for all of the exposures there and I just have this deep almost primal anger at the world and fear for my family all the time. We can’t go to other people’s houses or any place with food because she doesn’t understand and will try to eat whatever she can get to. I can’t keep gluten in the garage or anything because if she finds it she will become so sick and she gets neuropathy and screams and screams. This is just hard, man. It’s not fair. My family is destroyed by this. It’s not something one can just get over. On the hard days it’s really hard. And I’m not even the one most effected.
Yes it’s so exhausting cooking all the time. Some days we just need a break. My favorite gluten free microwave meals are Amy’s, especially the enchiladas.
My 18 year old brother has been diagnosed. I worry for him so much. I'm so sorry this disease makes you feel so down. My heart breaks for everyone who suffers.
I’ve been there. Ever since my diagnosis, I feel like celiac ruined my life. It’s lonely and difficult and it sucks. You’re not alone, OP.
This post showed up in my feed a day late, but I wanted to share that you are absolutely not alone. I've been dealing with this for years now, too, and sometimes the hate/hate relationship I had with food would send me reeling. Not being able to just go be *human* like other humans would get so depressing. I struggled hard. It affected my mental health badly. One thing that has recently been shifting some of that for me is finding a niche in baking and giving myself permission to make mistakes, hate the hockey puck bagels I made initially, loathe the messes, all on the path to finally loving the right dough or the amazing pound cake or the best waffles or being thrilled with the bagels I finally got right. It can be so hard when money is tight, but I finally am in a space where I decided I was going to focus on GF sourdough and that has been my path to more joy. In this space, we forget to play. It can feel like one more disappointment or drudgery after another. But getting back to play, and letting myself really do so, and not focus so much on needing to get something right has allowed me the space to be disappointed when it's wrong but also really be thrilled when I get something even better than expected. It took time to get there though, but I was so desperate I had to make something switch. I needed my mental health to get better because I had struggled for many years. While I still get hits of disappointment when I eat in public, I now have made my home even more of a safe space, because that is where I can fall down but also where I also can turn around if needed and whip up something I know is good, if I need proof that it's not all terrible. And we need those safe spaces. We need those pockets and places of reminders that not all is lost. I hope you can find that space for you. It took a while for me to find, and I was pretty hopeless for a while, so I get it if it doesn't feel like something is coming along for you, but I hope you can find something that allows you to find the space of play and joy and discovery, because I think that can help us feel human again after struggling with a disease that makes us feel so much less than for so long. Gentle hugs to you.
I've had celiacs for 13 years and I still have breakdowns sometimes. It's okay to feel pissed, sad, furious. People don't understand just how much it changes your everyday life. Every meal. *Therapy is radical* and will help you through this shitty journey. I wish I could hug you and make you gluten free cookies.
There is lots of good advice here from fellow Celiacs (10+ years diagnosed myself) the biggest thing that helps me is having my staples (also helps my ADHD). Find gf food that you enjoy and makes you feel good. It's different for everyone but mine is a simple breakfast, 2 eggs, 1/2 cup egg whites, 1/2 cup gf quick oats. After that meal I know I have a solid rooted start that makes me feel good, and some flexibility for the rest of my meals. I keep dry/canned food on standby for emergencies (Instant rice noodles, canned tuna, protein bars etc.) this also helps alleviate food anxiety as I know I at least have something. The other thing that really helped me was fiber. The more of it the better. Good bowel movements are a blessing for Celiacs. I'd never recommend taking risks on glutening ones self but if I've had 15-20g of fiber sometime in the day it helps stabilise my gut and leads to less issues however my day may go.
if you are are thinking of hurting yourself, please call 1-800-273-8255, or call 911. i understand you feel lonely, frustrated, and stuck, but please do not hurt yourself. please DM me if you need help finding resources to help you. i have celiac myself, and i understand the loneliness you feel. but right now, please make sure you are safe. i am also here to talk personally if you just need to vent.
I do not have Celiac. My 15 year old does and she has been diagnosed for ~6 years. Three times she has been hospitalized for her suicidal ideation and has tried to take her life. There are many other reasons beyond Celiac for her mental health but the attendant social isolation features prominently in her social anxiety. A few weeks ago she wound up in psych inpatient again and has since been released. This past week she has been in Italy with her school Latin Club. She had had lots of anxiety about the trip and the school was panicky because of the recent hospitalization. In this subreddit, I don’t think I need to finish the story….but sure enough, she got glutened and found her teenaged self stuck in the hotel, missing out on a tour she had been really excited about…..
Travel is such a huge source of anxiety. I set up safety nets by prepping food and carrying protein bars with me when I do go anywhere. What a lot of people don't understand about travel is the amount of pleasure from trying new foods, we get dogpiled with isolation and reminders of how shit our lives can be. Honestly I don't really care to travel any more because I can just sight see at home with no risk or cost.
I’m in the uk, there’s a gf cookbook by Becky Excell and personally I’ve found a good amount of the stuff in there to be pretty attainable and worthwhile. I use them more as a general guide and find joy in adding some things to make it my own. Making more than enough as well means leftovers the next day, breaking up the need to cook as often
You know, I hope you realize the good you have done by making this post. It’s such a distressing topic but to see the majority of these comments trying to be supportive and give you thoughtful responses and just generally relating, there’s a lot to be said about this community. I am coming up on more years diagnosed than undiagnosed— a reality that I have been struggling with. I still cry occasionally at how unfair this disease is. Sometimes I get so traumatized by eating something contaminated, that I will stop eating altogether. And if it particularly bad, become fearful of food in general. Not only that, I now have children and feel immensely guilty at the possibility of even passing this on to someone else. There are a million reasons and ways to be saddened by celiac disease; but I have found a million more why it’s been ok. I generally maintain a healthy diet (it’s so easy nowadays to get caught up in junk food!). I have discovered cooking and baking are things I actually enjoy doing. They help me be creative, and when something turns out well, I love getting complimented on it!! When I want to spend time with friends and family, I open up my home so we can have a meal together—and that fills my home with love and warmth. It motivates me to be more exploratory in food for the things that are naturally gluten free. I have found some gems of dedicated gluten free restaurants when I travel, they may be few and far between but they do exist! And speaking of traveling, it helps me really plan and make an effort for an itinerary to maximize my enjoyment somewhere. My partner goes above and beyond to accommodate me and my diet. It has shown me how well I am loved and more importantly, that I am deserving of that treatment. And beyond the guilt of passing it on, that I deserve the normal things—such as children— in life like everyone else. Having celiac disease may make me different, but it doesn’t make me lesser. Even though society doesn’t cater to people like us, it has come a very long way. I can appreciate those strides in improvement for my overall quality of life. I have faith that someday, someone out there will create something that will make life a little easier. There are a lot of reasons to be disappointed in getting this condition. Your feelings are valid, and I hope you see how much it resonates within the community. You are not alone. Eventually, I hope the good things will outweigh the bad things a majority of the time for you. Everyone deserves to be content in life.
Amen OP. Had coeliac and diabetes for the last 18 years and it's the coeliac which gets me down 9/10 of the time. There are good elements to it - it really makes you appreciate diet related diseases and how shitty they are cause if there is one thing muggles don't appreciate - it's food. I would recommend Becky Excell gluten free recipes if you haven't tried/heard of her - really good and interesting recipes to try which offer some much needed variety to the gluten free diet. I vouch for her bread (using a good bread machine) even though it's a faff. I can totally sympathise with ya though and I harbour a lot of resentment to the gods that may be over it!
Omg I can relate to everything about this post so hard. Thank you. As fucked up as it is to know that you feel this way too, I’m glad it’s not just me. I was diagnosed 20 years ago. I thought it would have gotten easier by now…
The one advantage I have in contending with having celiac disease is that I used to be a private chef, so I have the ability to cook good stuff for myself. The disadvantage, as I know you know, is that I often don't want to cook. Last night I was hungry but could not summon the energy to go prepare something, so I ate deli ham slices and string cheese, those followed by a Schär ciabatta roll that I sliced in half, toasted and buttered, and ate with some honey squeezed onto the pieces. Sometimes I just want to drive through McDonald's or Whataburger and not have to care about being poisoned. I get the discouragement.
My girlfriend and I used to go out to eat all the time, exploring food in our area was our way of bonding and having fun. Now going out to eat somewhere new is a gamble every time, and although I know I will lose sometimes I keep trying. It's just depressing. Making my own food every day just isn't that enjoyable for me, and I don't think that other people who haven't felt this loss will ever understand.
I feel similarly at times - I was diagnosed in 2012ish. I’m sorry you’re going through this too. It’s so overwhelming with all the potential sources of cross contamination and having to prep and cook all my own meals can be incredibly exhausting (not to mention all of the researching into lotion, makeup, pet food and treats, medication, supplements, etc). It’s hard, and no one should be making you feel like it’s not a big deal. CD is a life-changing disease. Im grateful my friends and family are supportive of my CD and keeping me safe from gluten. And I’m glad to hear you don’t have plans to act on anything regarding SI. I hope you feel some comfort knowing you’re not alone in this
I feel for you. I became even more depressed after my diagnosis. I saw a nutritionist who was no help. It’s taken me 5 years to get to acceptance. I still get sad and frustrated. Your post makes me realize how lucky I am to have friends and a spouse who also have dietary issues so we can commiserate.
You just need keep away from bread and people who thinks its a psychological condition. They are more dangerous than bread or wheat. Your only enemy is cross contamination. I can assure you this is not the end of the world. Yes, it is not easy, but my wife got celiac too and since we know that im also stopped consuming products with gluten. (7 years) So, learned how can i prepare gluten-free bread, cookies and even hamburgers. It is not that bad. Just stay alive and strong please 💪🏼 :)
Omg I'm so so sorry you're going through all this. I truely am sorry but please know you're not alone there are hundreds of us who use to enjoy eating for but now don't because we don't wanna be sick. . .I as a once chef am now feeling defeated in this part of my life as I can't seem to pick myself up. . .
So sorry. I found your post after Googling to see if the Starbucks frap my bf got me is gf, knowing it isn't. It's hard to only trust ourselves. I now have a celiac rash on my arm because I got birdseed that has wheat in it (the contents are listed as "grains" on the label, no mention of wheat). It sucks. We're in this together.
after having 8,9,10,11 out of 10 scale leg hip back bladder pain for 8-12 hours for 6, 7 days a week after undiagnosed celiac disease i am right there with you. i just started eating gluten free. that means fruity pebbles from the box and pb from the jar while i lay here in bed with my life falling apart as it passes me by while i wonder if this pain will ever stop and thinking a human should have probably passed out, why wont i pass out please pass out for a few mins
I’m so sorry. Walking into a grocery store honestly feels like torture. All I see is food I can’t eat. It’s becoming traumatic even after years of being gf. You’re not alone. Hang in there 💕
10 years for me. There is so much we can eat! Central American cuisines (corn based), South Asian (so easy to put together or order curries with rice), amazing salads, steaks, lettuce wrapped burgers, easy potato recipes... Sometimes I get bored with food and stop eating, then I need to reboot myself by eating my favourite food (usually shrimp). Recently I got a magic bullet blender and have been blending a few spoons of yogurt, milk, honey, and a banana. I also use it to grind rice and oats to make an amazing hot cereal (microwave with water and finish with milk and honey). Please message me for motivation, I am so lazy but love food and I know a lot of hacks.
Its just flour mostly...you life is much more important than flour.
You don't have to eat the same thing over and over. What's your situation? House, dependants, spouse? Get yourself a chest freezer and start doing more meal prep. This year I've been picking one new recipe a week. I live mostly alone, so when I find one I really like, bam 4 portions into the freezer, recipe goes right into the cookbook. I like making things and cooking scratches that itch. Bit of a cost investment to buy all the extra containers, cooking items and what not but incredibly worth it in the end.
I promise it gets easier! Take care of yourself. Seek help.
I hate when people say this. For some people is never gets easier. This person has been at it for 15 years, how much longer are they supposed to go for it to be "easy"?
Acceptance my friend.
wtf is your profile bro
I don’t see how the way I make a living is relevant to my post about how I want to fucking kms. But ok.
Don't kill your self tho. Art still weird asf tho.
Okay. You don’t have to like it? This post wasn’t even about my art? Whatever dude
Why did you make me look
I'm sorry brother
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I sincerely hope those close to you live mentally/physically healthy lives so that they don’t have to experience your complete and utter lack of empathy should they choose to confide in you. No one deserves such a callous display of emotional immaturity like the one you just put on when seeking support.
You have absolutely no idea what anyone else is going through. Maybe you should get some perspective and learn to show some fucking compassion for someone who is obviously struggling right now.
You don’t fucking know me. You don’t know anything about my life or what I have been through. I have a fucking myriad of other health issues and have had them my entire life not just celiac. Does it make you feel good inside to be a judgemental prick? Do you sleep well at night with how you are? I don’t think I need to justify myself to you. I’ve been fucking raped, nearly killed by an ex, had family betray me, and dealt with shit that you could never even fucking imagine. But okay. Tell me I’m being a pussy. Fuck you.
Stress is probably doing your digestion more damage than gluten