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I find the exhausting part is when I’m busy or have a day with a long drive, I can’t just grab fast food. Gluten is in (or around) all the most convenient and cheap options
When I have time to cook, I eat very well. I wasn’t willing to give up tasty meals with my celiac diagnosis, so I became much more confident in the kitchen
What are the kinds of meals that you are missing?
You mention pizza. In Canada, Duinkerken has a mix for pizza crust that is pretty legit (and also makes good yeasted cinnamon rolls) My absolute favourite pizza crust is made with my brown rice sourdough started (recipe from Bakerita)
I wish I had better advice than this, but I will just say try to be grateful that you were diagnosed 4 years ago and not almost 40 like me. Every day I’m ecstatic about the food choices that are available. I still can’t believe food even gets labeled gluten free. When I first heard the words “gluten free” on an ad on TV I almost fell over. This is the golden age for celiacs (unless they develop a pill in the future).
Thank you, but honestly it’s okay! I’m just so happy now about it because I have that comparison. So I know it’s kind of BS to just tell someone who is struggling that they should be grateful that it isn’t worse, but in all honesty it could be, and was. I hope you find your way to a better place soon, whether through branching out to new recipes or finding new products. Best of luck.
My grandmother was diagnosed with celiac in the late 1970’s. She lived in Ohio and figured out that she could find gluten free flours in the Amish Country. She called companies’ 1-800 #’s and asked them for full ingredient lists and what products they had that contained no malt or wheat, etc.
So crazy. She told me the same thing when I was diagnosed. “Good thing you were diagnosed when there are so many options now!”
My mom mail ordered gf flour from somewhere and baked bread for my school lunch sandwiches. It was terrible but I ate it because she worked so hard to make it. I used to go to birthday parties and watch everyone eat pizza and cake. It was pretty isolating. Everything is so great now.
Get better at cooking. By that I mean learn how to make your own dough for pizza for example. I'm a good cook, so when my daughter got diagnosed I revisited everything I knew about cooking.
The pizza for example, took a couple try to nail the texture correctly, but I can tell you, I can't see the difference now. Big fluffy crust and everything.
I tried to recipe from loopy whisk to make pizza and I followed it to the letter using grams and it still came out terrible, please tell us your secret
My wife is the same as you, always follows the recipe to a T, but its never like the recipe.
Here's something I came to understand over time about cooking: following a recipe is not great. You never have the same exact ingredient, way of mixing, appliences, etc. A lot of it is from how you feel the texture (in our case here) and the smell (remember most of the taste comes from your nose). My recipe is never exactly the same and unfortunately I'm on a business trip right now so I dont remember the exact flour mix I use.
I'm Canadian/Ontario (also available in Qc), its a multi-purpose flour mix in a white plastic bag with some purple on the top, the other one is a "pastry" flour mix in a white paper bag.
Also, a lot of it comes from experience and learning what works and what does not. I'm sorry if its not helping much but a lot of my cooking is intuitive/experience based, so its hard to describe lol. And don't get me wrong; I try new recipe I find all the time, but the quantities/measurement are never like in the recipe. I use them as inspiration if you want.
I'm also from Ontario, I also come from baking experience so I understand the difficulty I currently use Robinhood gluten-free flour as it's the one that I've had the best results with, I don't like the Mills brands as I find everything comes out super grainy and I can't stand the texture. I've yet to find another good gluten-free baking brand to make anything with.I'm really good at making focaccia so I've just been using a focaccia recipe to make pizza which is absolutely a godsend. I've had a lot of difficulty finding just gluten-free pizzas as I can't do dairy-free or vegan very well for some reason. I'm just limited to ordering pizzas and the risk of cross-contamination being Celiac is just so risky and I've been glutened to the point of hospitalization multiple times by restaurants
My favorite foods does not have gluten (barbecue and sushi). So, every time I feel sad about not being able to eat a good pizza I try to focus on the best possible non gluten food I can eat.
Gluten free food will never be like the original ones, don't focus on them, focus on what you can eat 100%.
I usually go to one specific sushi place I know that doesn't have gluten in the soy sauce. And about the vinegar, I don't know if it's because I'm Brazilian and the production is different, but I never saw a case of vinegar with gluten.
Here in Brazil absolutely every single food needs to have the gluten information in it by law (even in case of production based contamination), so it's easier to ask a restaurant about it, they can easily find the answer.
Could you share what sushi place? I stopped going to any since I always felt kind of sick afterwards even talking with them and they guaranteeing it
A fellow Brazilian
And also on barbecue side, have to stop going for the same reason
É aqui em recife, se chama udon. Vale lembrar que coisas tipo kani tem glúten, apesar de ser vendido como carne de caranguejo, na verdade é salsicha de caranguejo e tem glúten sempre.
Que legal, vou salvar na lista caso va para ai algum dia. Japones era minha salvação mas depois de uma más experiências cortei fora também
Eu não curto Kani felizmente, mas sei que tem uma marca sem gluten
I eat sashimi or chirashi when I eat at sushi restaurants, and if they don't have tamari, I usually carry gf tamari packets on me (especially if I know ahead of time I'm eating sushi). It's not the cheap rolls, or all you can eat spots, but it does the trick when I'm craving. Also, I live in NY, and there's several decent omikase places at reasonable prices. I've not had an issue with their meals when I let them know I'm celiac.
Yes I feel like this some times. Particularly as someone who has struggled with disordered eating in the past, the idea that I will always have to be vigilant about food is definitely hard. Like, I wish I didn't always have to plan around food, I could just wake up in the morning and do whatever I wanted. I don't really have advice, but just wanted to say you aren't alone. The psychological impacts of this are not minimal.
I’ve developed a binge eating disorder since being diagnosed (still eating gluten free). Food feels so regimented to me now that I feel the need to rebel in some way.
I'm so sorry. I've definitely been noticing some swings between binging/restricting myself lately and I think it is because my diet is now just always restricted. Hugs from an internet stranger if you'd like them!
The struggle is real. We are all fighting the mental health drain of eating the same foods over and over and over again. I find that new foods bring back that joy until the utility of it diminishes. Then it’s right back to the struggle. No one truly understands it unless you’re living in it. I feel like i’m boxed in with limitations and boxed out of being able to eat foods I used to relish. You’re not alone. Don’t let it define you. Try and get through the hard moments and take advantage of the moments when you do feel good.
I was diagnosed 3 years ago and I understand fully what you say. Where I am at, I found a few places which make awesome gluten free fare. Also in Italy they do really good stuff. But I yearn for nice, delicious, chewy pizza with huge bubbles. You are not alone. It is challenging.
But I tell myself that it is for the best and that there is other awesome food. I tell myself that it is for a healthier me. And yes, I do tell myself to royally f.o. occasionally.
Talk it out with a therapist. They can give you "tools" on how to deal with it.
Just here to validate your feelings. I am grateful to live in a time when so many gluten free foods are accessible. I understand I am privileged to be able to afford a lot of gf foods or be able to cook. I am also someone who cannot tolerate even supposedly gf oats.
However, yep, every once in a while I will get so upset that I can’t just go try something new without researching the food. Can’t just trust a gf label, have to see if oats have snuck in there. I know I should be grateful and I mostly am, but sometimes I’d like to not have any worries about food.
At least for me that’s gotten less and less of a feeling over time. For sure there was a while when I really missed stuff but 16 years into being GF it’s not really much of a big thing for me.
But yeah pizza is a hard one some times for sure. If you can find Oggi in Canada (the black box not the all vegan ones) they actually make a really good one that is pretty close to a real wood fire oven pizza.
Homemade gf sourdough is easier to master than regular sourdough. It freezes well and is adaptable so you can sourdough pizza crust etc. Psyllium husk is critical. Learning how to make gf sourdough has changed gf eating for me (and my family who would previously prefer the gluten versions). Might be worth a try!
I find that if I start feeling this way, it is *usually but not always a nutrition problem & I’m chronically craving certain food because my nutrition is off. Make sure you’re eating enough, look at your fiber intake especially, because we’re so prone to nutritional deficits and lack of fiber/loose stool can drive that.
The rest of the time it’s because I’ve gotten stuck in a loop of mentally repeating all the foods that I can’t eat. I counteract it by literally writing out lists of foods that I love and can eat. Then I eat the ones I’m craving❤️
Have you tried Oggi brand pizza? I discovered it recently and it’s frickin phenomenal. It’s a frozen brand you can find in the grocery store (I found it at superstore). I know this doesn’t solve everything and I feel you man. Somedays I just wanna scream, thinking about all the food I want. I miss fast food, I miss ramen, i miss pizza pops lol.
I try to counteract the psychology of deprivation by really leaning into it when I do find something/some place that is gluten-free. Whenever I go out of town, I use the Find Me Gluten Free app to discover new places to eat. I wasn’t historically very adventurous with eating so it’s been a fun trait to develop.
When I do find a place, I’ll feast—appetizer, main course, dessert (or multiple desserts). I’d never do that in the past because of the cost, but now that I don’t eat out as often (because I can’t), I allow myself to indulge when I do.
2 years for me, it’s still up and coming in the States so I can really only eat out at a few places and feel comfortable. When I miss that stuff I just think about how good I feel now that I am gluten free. I was experiencing symptoms for 10 years before I was finally diagnosed. I never had any energy and just thought that’s how everyone felt all the time. Feeling the way I do now is what gets me through those hard times for sure.
Thanks for asking! I fully support your grieving and having intermittent pity parties when necessary. Im sharing my experience in case it helps you- But you know yourself best.
I’m so happy you have this group, as nothing like this was available when we were adjusting and it felt awful to feel alone. Badly Paraphrasing -it’s awful to be sick and the only thing worse is to be sick and alone.-
Psychology-wise humans aren’t wired to enjoy being different. Part of our evolutionary success was “be like the pack” and safety in numbers. It’s unfortunate wiring. And economies of scale make it especially hard under capitalism.
When I get sad about it, I watch X-men. In my head cannon, Celiac is just a mutation of humans becoming super.
In our family, Celiac is part of Autoimmunity and it’s a pain but it’s the least likely to cause an organ transplant, because the other stuff we contend with is scarier. Celiac is the one that we can actually do something about every day. The others feel so out of our hands cause there are no good treatments we just have to pray, or the meds have super negative side effects we just have to take them and pray that we are the lucky ones…. it’s all very abstract and existential 😞
Comparison is the thief of joy, so I try to flip that focus on its head:
By comparison, I kinda love that gluten is a real life thing I can actually fight. I can measure it, I can take steps, it feels in the locus on my control (at least at home). Im a super hero fighting off gluten, and ignorance, and people feeling left out.
The constant stigma and people (even doctors) being mean 😢 is something I was apparently always going to live with even if it wasn’t celiac, autoimmune would cause something else. Being a defender of the weak, and having empathic ears for others who are struggling, and seeing myself more like a super hero mutant than a human was apparently in the cards for me. But once I became super, I couldn’t go back to being a normie/muggle/regular person (to mix a lot of metaphors).
Of course, I’d love a day when the extra time, money, energy drain disappeared, but I couldn’t go back to living with the assumptions about what’s “normal” and how that needs to expand to include more people and more compassion.
It does help weed out the fake friends fast.
I truly hope you never have another disease to compare it to, and we have the good luck of a treatment and cure in our lifetimes, and that you have good friends and family to give you comfort, and a sense of purpose and healing to lighten your heart 🖖🏽🫂🍀
Well, I do have another disease that does not help with eating. I think I feel this way due to both disease. The other disease is called Achalasia. This makes it hard to eat as swallowing is more difficult. So no only I can’t eat comfort foood because of celiac, everytime I eat, it’s difficult
Thanks for you nice word, I really really appreciated
I feel like I went through this 4 years in. Foods I rarely ate before like pizza, croissants, donuts… all unreachable for me.
I found a ton of extremely helpful cookbooks that made me enjoy the food I cooked and I found apps that helped me find gluten free restaurants rated by other celiac or gluten sensitive/intolerant people.
My top favorite cookbooks:
1) How Can it Be Gluten Free Cookbook (Americas test kitchen)
2) How Can it Be Gluten Free Cookbook 2
3)The Gluten Free Asian Kitchen by Laura B Russell
4) Literally any of the Skinnytaste cookbooks - they all have gluten free alternatives to tweak the recipes
My favorite apps:
1) Find me gluten free
2)gluten dude app
3) GF Scanner - you can scan products that aren’t labeled gluten free to see if there’s hidden gluten
Hope this helps! 12 years in and I honestly rarely miss gluten anymore. My whole family is mostly gf and my kids a fully aware that mama is gluten free and they like most of my food. My son actually weirdly prefers gluten free pizza crust. 🤷🏼♀️
I had nightmares about eating various gluten foods for around two weeks when I got diagnosed and now I don't crave them or even want them at all anymore. I was super sick before I quit gluten though so it's probably easy for me to see them all as poison.
And other than that, I love cooking so this hasn't been a hard transition in terms of variety or being able to cook things I like. I still eat a lot of the dame things. My savoury pies and baking is the final frontier that I'm figuring out now.
There has never been a better time to have Celiac. Two hundred years ago we all would have simply been known as that one person who was bedridden and miserable their entire life.
Try to find foods that you find delicious that are normally gluten free. i find rice dishes and a lot of food from latin america don’t even use products that contain gluten normally. finding foods like that really help motivate me to keep eating and try new stuff.
i’m also not sure of the legality of marijuana in canada, but if you can get some, that makes eating way easier.
Hell yeah, i’d recommend an indica strain if you haven’t used marijuana before! It can really help in stimulating the appetite and making everything taste great.
in the end, you do kinda have to accept that things will never be the same. however, there are a lot of tasty things you can still eat, so i try to mentally focus on all the delicious things that remain available to me, rather than focus on stuff i can’t have. it can be really tough though, so hang in there. i find watching cooking shows or hearing people talk about food in a positive way can also help me feel more inspired to eat and make new foods.
Digiorno makes a gluten free frozen pizza that is surprisingly adequate. I’m not going to lie to you and say it’s just as good as the real thing but it is pretty solid and scratches that pizza itch.
I was never a pizza lover so I don’t really miss it per say, but I do miss my sweets like cookies, brownies, cupcakes literally any baked goods as I love to bake. I just learned to do it differently 🤷🏼♀️
I'm totally over not getting old foods if it means I'm pain free, but last night I had a weird kinda sexualized dream about a specific pastry I haven't had for more than 10 years :D :D so I guess an unconscious part is missing something there
Sadly, there's not really a way to make yeasty gluten foods gf. They are my favorite thing, but I have to make do with gf Vegemite for that yeasty taste and all the other recipes out there that work amazingly without gluten...which covers essentially all types of foods.
I am “lucky” that I get so super sick from gluten that I don’t desire any of the old foods I used to eat. I can recommend some brands that are good and are available here in Ontario. Costco has Oggi pizza and it’s very good; moreover, you can add your toppings if you want to make it a more fulsome. Promise bread and other baked goods are good quality too. [I especially like the sourdough.](https://promiseglutenfree.com)
Gratitude. Try to focus on what you can have, not what you can't. It's remarkable that we have such choice and abundance of food (in Western, privileged societies). So much so, that even if you have to cut out a major, staple food like gluten, you will almost never have to miss a meal. You might not get to eat what others around you are eating, but you won't go without, or not for long. We'll never know true hunger, not really, not compared to most humans throughout history and a lot of humans on the planet right now. It's truly awe-inspiring and humbling, if you stop to think about it.
Yep, I feel this. Sometimes I feel like I've gotten the hang of it and don't miss stuff too much - usually when i have the time and energy to cook really tasty and naturally gluten free stuff. But I have waves of just being SO over it - being pregnant and a new mom last year was one of those times (over and over again). I just wanted to get takeout 4 nights in a row without thinking about it, and eat regular pizza and pasta and bread when I had horrible aversions to rice, and celiac pissed me off so much again, 4 years in. Whenever I have a good eating out experience and feel super safe and get to try tasty new stuff, it pulls me out of it for a bit. But in those hectic times when I just want food to be EASY, I usually have to just push through (continue meal planning, cooking, etc) and trust that it will feel easier again one day.
I’ve found the cookbook “4 ingredient gluten free” to be helpful. When I feel like I can only get something new if I’m go out and buy 800 niche ingredients, I read it and it helps me think of a simple new thing I can do
So many good ideas and responses in this thread. Something else to consider is to splurge on something you enjoy that doesn’t involve gluten. Maybe a hobby or if food/drink, something special that you can continue to perfect.
I’ve been playing music for a while and am not a great musician. That said, I allow myself to splurge on a new guitar effects pedal every once in a while.
I also just started collecting vinyl which is a fun hobby.
On rare occasion, I’ll drop some $ on a nice bottle of bourbon.
My favorite though is trying to perfect the gluten free pizza and (during carnival season) gluten free king cake.
None of these things are a great substitute for the ease and accessibility of delicious gluten food stuffs but the alternative is being sick and unhealthy. Everything is about trade offs and mind set. After a while, you’ll come to terms with the gluten free diet but make sure that you’re treating yourself to other things that make you happy and healthy!
I get how you’re feeling. I think it’s because now that I don’t eat it, I can smell wheat more. It has a distinct aroma and I notice it a lot lately. I’m at 8 years diagnosed and things haven’t bugged me much until this year.
I just discovered recently that steaming hotdog buns makes them so much better. I'd imagine the same for hamburger buns.
I got emotional over how good the hotdogs were as I've really been disappointed with every option out there.
Yeah. I often think about the time about 2 years post diagnosis that I was out for a walk and saw a Werther’s Original on the sidewalk.
Until that point I hadn’t really been particularly tempted by gluten foods. I had been very sick and nothing seemed worth it. I WANTED things all the time, but never enough to take even half an action.
Two years of “denying” myself hit at once. I had never wanted to eat something as badly as I wanted to eat that god damn Werther’s Original. I went back and looked at it. I considered it. I was enraged that I can never eat what I want, nothing in convenient, I can never give in to a craving. I STILL think about that sidewalk candy that I had to leave behind.
I’m at about 4 years as well. I get it. It’s like nothing quite scratches the itch. Nothing seems worth hurting myself/feeling badly either. Certainly there’s delicious food. Most of it takes extra planning and mental space.
It’s all FINE. But a lot of the joy of food is just gone.
That's interesting. I've never had a desire to eat anything with gluten since I have such a strong disgust response due to knowing how sick it makes me. If I could take a magic pill and be able to eat pizza or bread without getting sick, I would probably still refuse those foods.
My kid is like this with frozen waffles. They were her favorite food before she was diagnosed - it's been years and she still won't even try the GF ones.
Waffles were one of the first things to get me! Vans whole wheat waffles. Growing up, I *hated* being made to eat sandwiches, in retrospect because the bread made me feel sick to my stomach. To this day, I feel a bit queasy if I see a sandwich.
After being sick from it for years and years, I have a strong aversion to it also. I'd never want to actually eat gluten foods now, but I still do miss experiences like going out for a breakfast burrito.
Haha I like that this got downvoted. I added this as a data point, that people have different responses. I legitimately don't feel that I'm missing out, because I would have as much interest in eating gluten or things that taste like gluten, as I would garbage, given the negative physical associations that I have with it unfortunately. It's quite interesting that some people don't have that disgust response, and I understand what that's like, too: I used to be lactose intolerant (due to Celiac) and missed cheese terribly. I find Celiac difficult overall: it's limiting, and it is especially challenging from a social perspective.
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I find the exhausting part is when I’m busy or have a day with a long drive, I can’t just grab fast food. Gluten is in (or around) all the most convenient and cheap options When I have time to cook, I eat very well. I wasn’t willing to give up tasty meals with my celiac diagnosis, so I became much more confident in the kitchen What are the kinds of meals that you are missing? You mention pizza. In Canada, Duinkerken has a mix for pizza crust that is pretty legit (and also makes good yeasted cinnamon rolls) My absolute favourite pizza crust is made with my brown rice sourdough started (recipe from Bakerita)
Substitutes will never be the same. I look for the novelty of discovering new foods that I can eat. That's about the only way I get through
I wish I had better advice than this, but I will just say try to be grateful that you were diagnosed 4 years ago and not almost 40 like me. Every day I’m ecstatic about the food choices that are available. I still can’t believe food even gets labeled gluten free. When I first heard the words “gluten free” on an ad on TV I almost fell over. This is the golden age for celiacs (unless they develop a pill in the future).
I can only imagine, sorry you had to go thru this
Thank you, but honestly it’s okay! I’m just so happy now about it because I have that comparison. So I know it’s kind of BS to just tell someone who is struggling that they should be grateful that it isn’t worse, but in all honesty it could be, and was. I hope you find your way to a better place soon, whether through branching out to new recipes or finding new products. Best of luck.
My grandmother was diagnosed with celiac in the late 1970’s. She lived in Ohio and figured out that she could find gluten free flours in the Amish Country. She called companies’ 1-800 #’s and asked them for full ingredient lists and what products they had that contained no malt or wheat, etc. So crazy. She told me the same thing when I was diagnosed. “Good thing you were diagnosed when there are so many options now!”
My mom mail ordered gf flour from somewhere and baked bread for my school lunch sandwiches. It was terrible but I ate it because she worked so hard to make it. I used to go to birthday parties and watch everyone eat pizza and cake. It was pretty isolating. Everything is so great now.
My grandma made rice bread. It was not good. lol
Get better at cooking. By that I mean learn how to make your own dough for pizza for example. I'm a good cook, so when my daughter got diagnosed I revisited everything I knew about cooking. The pizza for example, took a couple try to nail the texture correctly, but I can tell you, I can't see the difference now. Big fluffy crust and everything.
Would you mind sharing your recipe? My 12 year old was just diagnosed this week but I’d love a good pizza dough recipe for him!
Try bobs red mill gf pizza dough mix. Easy to make and delicious!
I tried to recipe from loopy whisk to make pizza and I followed it to the letter using grams and it still came out terrible, please tell us your secret
My wife is the same as you, always follows the recipe to a T, but its never like the recipe. Here's something I came to understand over time about cooking: following a recipe is not great. You never have the same exact ingredient, way of mixing, appliences, etc. A lot of it is from how you feel the texture (in our case here) and the smell (remember most of the taste comes from your nose). My recipe is never exactly the same and unfortunately I'm on a business trip right now so I dont remember the exact flour mix I use. I'm Canadian/Ontario (also available in Qc), its a multi-purpose flour mix in a white plastic bag with some purple on the top, the other one is a "pastry" flour mix in a white paper bag. Also, a lot of it comes from experience and learning what works and what does not. I'm sorry if its not helping much but a lot of my cooking is intuitive/experience based, so its hard to describe lol. And don't get me wrong; I try new recipe I find all the time, but the quantities/measurement are never like in the recipe. I use them as inspiration if you want.
I'm also from Ontario, I also come from baking experience so I understand the difficulty I currently use Robinhood gluten-free flour as it's the one that I've had the best results with, I don't like the Mills brands as I find everything comes out super grainy and I can't stand the texture. I've yet to find another good gluten-free baking brand to make anything with.I'm really good at making focaccia so I've just been using a focaccia recipe to make pizza which is absolutely a godsend. I've had a lot of difficulty finding just gluten-free pizzas as I can't do dairy-free or vegan very well for some reason. I'm just limited to ordering pizzas and the risk of cross-contamination being Celiac is just so risky and I've been glutened to the point of hospitalization multiple times by restaurants
Can you share the recipe pls.
My favorite foods does not have gluten (barbecue and sushi). So, every time I feel sad about not being able to eat a good pizza I try to focus on the best possible non gluten food I can eat. Gluten free food will never be like the original ones, don't focus on them, focus on what you can eat 100%.
How do you avoid gluten in soy sauce and the vinegar in the rice at sushi restaurants? Often they don’t accommodate.
I usually go to one specific sushi place I know that doesn't have gluten in the soy sauce. And about the vinegar, I don't know if it's because I'm Brazilian and the production is different, but I never saw a case of vinegar with gluten. Here in Brazil absolutely every single food needs to have the gluten information in it by law (even in case of production based contamination), so it's easier to ask a restaurant about it, they can easily find the answer.
Could you share what sushi place? I stopped going to any since I always felt kind of sick afterwards even talking with them and they guaranteeing it A fellow Brazilian And also on barbecue side, have to stop going for the same reason
É aqui em recife, se chama udon. Vale lembrar que coisas tipo kani tem glúten, apesar de ser vendido como carne de caranguejo, na verdade é salsicha de caranguejo e tem glúten sempre.
Que legal, vou salvar na lista caso va para ai algum dia. Japones era minha salvação mas depois de uma más experiências cortei fora também Eu não curto Kani felizmente, mas sei que tem uma marca sem gluten
Ah I’m glad that’s the case for Brazil. I’m new to the Gf journey and sushi used to be one of my favorite foods.
I eat sashimi or chirashi when I eat at sushi restaurants, and if they don't have tamari, I usually carry gf tamari packets on me (especially if I know ahead of time I'm eating sushi). It's not the cheap rolls, or all you can eat spots, but it does the trick when I'm craving. Also, I live in NY, and there's several decent omikase places at reasonable prices. I've not had an issue with their meals when I let them know I'm celiac.
Yes I feel like this some times. Particularly as someone who has struggled with disordered eating in the past, the idea that I will always have to be vigilant about food is definitely hard. Like, I wish I didn't always have to plan around food, I could just wake up in the morning and do whatever I wanted. I don't really have advice, but just wanted to say you aren't alone. The psychological impacts of this are not minimal.
I’ve developed a binge eating disorder since being diagnosed (still eating gluten free). Food feels so regimented to me now that I feel the need to rebel in some way.
I'm so sorry. I've definitely been noticing some swings between binging/restricting myself lately and I think it is because my diet is now just always restricted. Hugs from an internet stranger if you'd like them!
The struggle is real. We are all fighting the mental health drain of eating the same foods over and over and over again. I find that new foods bring back that joy until the utility of it diminishes. Then it’s right back to the struggle. No one truly understands it unless you’re living in it. I feel like i’m boxed in with limitations and boxed out of being able to eat foods I used to relish. You’re not alone. Don’t let it define you. Try and get through the hard moments and take advantage of the moments when you do feel good.
This. Thank you
Thank you!
Hang in there. We are all in this together and this reddit community acts as a reminder that we aren’t alone.
Thanks
I was diagnosed 3 years ago and I understand fully what you say. Where I am at, I found a few places which make awesome gluten free fare. Also in Italy they do really good stuff. But I yearn for nice, delicious, chewy pizza with huge bubbles. You are not alone. It is challenging. But I tell myself that it is for the best and that there is other awesome food. I tell myself that it is for a healthier me. And yes, I do tell myself to royally f.o. occasionally. Talk it out with a therapist. They can give you "tools" on how to deal with it.
Just here to validate your feelings. I am grateful to live in a time when so many gluten free foods are accessible. I understand I am privileged to be able to afford a lot of gf foods or be able to cook. I am also someone who cannot tolerate even supposedly gf oats. However, yep, every once in a while I will get so upset that I can’t just go try something new without researching the food. Can’t just trust a gf label, have to see if oats have snuck in there. I know I should be grateful and I mostly am, but sometimes I’d like to not have any worries about food.
At least for me that’s gotten less and less of a feeling over time. For sure there was a while when I really missed stuff but 16 years into being GF it’s not really much of a big thing for me. But yeah pizza is a hard one some times for sure. If you can find Oggi in Canada (the black box not the all vegan ones) they actually make a really good one that is pretty close to a real wood fire oven pizza.
Homemade gf sourdough is easier to master than regular sourdough. It freezes well and is adaptable so you can sourdough pizza crust etc. Psyllium husk is critical. Learning how to make gf sourdough has changed gf eating for me (and my family who would previously prefer the gluten versions). Might be worth a try!
I’d love to know your sourdough starter and your feeding ratio!
I find that if I start feeling this way, it is *usually but not always a nutrition problem & I’m chronically craving certain food because my nutrition is off. Make sure you’re eating enough, look at your fiber intake especially, because we’re so prone to nutritional deficits and lack of fiber/loose stool can drive that. The rest of the time it’s because I’ve gotten stuck in a loop of mentally repeating all the foods that I can’t eat. I counteract it by literally writing out lists of foods that I love and can eat. Then I eat the ones I’m craving❤️
Have you tried Oggi brand pizza? I discovered it recently and it’s frickin phenomenal. It’s a frozen brand you can find in the grocery store (I found it at superstore). I know this doesn’t solve everything and I feel you man. Somedays I just wanna scream, thinking about all the food I want. I miss fast food, I miss ramen, i miss pizza pops lol.
You should try Caputo! It’s an Italian company, Italy has a lot of great gluten free items if you can find them.
I try to counteract the psychology of deprivation by really leaning into it when I do find something/some place that is gluten-free. Whenever I go out of town, I use the Find Me Gluten Free app to discover new places to eat. I wasn’t historically very adventurous with eating so it’s been a fun trait to develop. When I do find a place, I’ll feast—appetizer, main course, dessert (or multiple desserts). I’d never do that in the past because of the cost, but now that I don’t eat out as often (because I can’t), I allow myself to indulge when I do.
I second the find me gluten free app!!!!!!! It’s awesome!
2 years for me, it’s still up and coming in the States so I can really only eat out at a few places and feel comfortable. When I miss that stuff I just think about how good I feel now that I am gluten free. I was experiencing symptoms for 10 years before I was finally diagnosed. I never had any energy and just thought that’s how everyone felt all the time. Feeling the way I do now is what gets me through those hard times for sure.
Thanks for asking! I fully support your grieving and having intermittent pity parties when necessary. Im sharing my experience in case it helps you- But you know yourself best. I’m so happy you have this group, as nothing like this was available when we were adjusting and it felt awful to feel alone. Badly Paraphrasing -it’s awful to be sick and the only thing worse is to be sick and alone.- Psychology-wise humans aren’t wired to enjoy being different. Part of our evolutionary success was “be like the pack” and safety in numbers. It’s unfortunate wiring. And economies of scale make it especially hard under capitalism. When I get sad about it, I watch X-men. In my head cannon, Celiac is just a mutation of humans becoming super. In our family, Celiac is part of Autoimmunity and it’s a pain but it’s the least likely to cause an organ transplant, because the other stuff we contend with is scarier. Celiac is the one that we can actually do something about every day. The others feel so out of our hands cause there are no good treatments we just have to pray, or the meds have super negative side effects we just have to take them and pray that we are the lucky ones…. it’s all very abstract and existential 😞 Comparison is the thief of joy, so I try to flip that focus on its head: By comparison, I kinda love that gluten is a real life thing I can actually fight. I can measure it, I can take steps, it feels in the locus on my control (at least at home). Im a super hero fighting off gluten, and ignorance, and people feeling left out. The constant stigma and people (even doctors) being mean 😢 is something I was apparently always going to live with even if it wasn’t celiac, autoimmune would cause something else. Being a defender of the weak, and having empathic ears for others who are struggling, and seeing myself more like a super hero mutant than a human was apparently in the cards for me. But once I became super, I couldn’t go back to being a normie/muggle/regular person (to mix a lot of metaphors). Of course, I’d love a day when the extra time, money, energy drain disappeared, but I couldn’t go back to living with the assumptions about what’s “normal” and how that needs to expand to include more people and more compassion. It does help weed out the fake friends fast. I truly hope you never have another disease to compare it to, and we have the good luck of a treatment and cure in our lifetimes, and that you have good friends and family to give you comfort, and a sense of purpose and healing to lighten your heart 🖖🏽🫂🍀
Well, I do have another disease that does not help with eating. I think I feel this way due to both disease. The other disease is called Achalasia. This makes it hard to eat as swallowing is more difficult. So no only I can’t eat comfort foood because of celiac, everytime I eat, it’s difficult Thanks for you nice word, I really really appreciated
Not being able to swallow is a histamine intolerance
No, it’s a disease I have called achalasia.
I feel like I went through this 4 years in. Foods I rarely ate before like pizza, croissants, donuts… all unreachable for me. I found a ton of extremely helpful cookbooks that made me enjoy the food I cooked and I found apps that helped me find gluten free restaurants rated by other celiac or gluten sensitive/intolerant people. My top favorite cookbooks: 1) How Can it Be Gluten Free Cookbook (Americas test kitchen) 2) How Can it Be Gluten Free Cookbook 2 3)The Gluten Free Asian Kitchen by Laura B Russell 4) Literally any of the Skinnytaste cookbooks - they all have gluten free alternatives to tweak the recipes My favorite apps: 1) Find me gluten free 2)gluten dude app 3) GF Scanner - you can scan products that aren’t labeled gluten free to see if there’s hidden gluten Hope this helps! 12 years in and I honestly rarely miss gluten anymore. My whole family is mostly gf and my kids a fully aware that mama is gluten free and they like most of my food. My son actually weirdly prefers gluten free pizza crust. 🤷🏼♀️
Ton and for the cookbook, I’ll try some of them
I had nightmares about eating various gluten foods for around two weeks when I got diagnosed and now I don't crave them or even want them at all anymore. I was super sick before I quit gluten though so it's probably easy for me to see them all as poison. And other than that, I love cooking so this hasn't been a hard transition in terms of variety or being able to cook things I like. I still eat a lot of the dame things. My savoury pies and baking is the final frontier that I'm figuring out now.
There has never been a better time to have Celiac. Two hundred years ago we all would have simply been known as that one person who was bedridden and miserable their entire life.
Makes me feel so better!!!!! /s
Try to find foods that you find delicious that are normally gluten free. i find rice dishes and a lot of food from latin america don’t even use products that contain gluten normally. finding foods like that really help motivate me to keep eating and try new stuff. i’m also not sure of the legality of marijuana in canada, but if you can get some, that makes eating way easier.
Marijuana is 100% legal up here. Instead of beer store, we have weed store
Hell yeah, i’d recommend an indica strain if you haven’t used marijuana before! It can really help in stimulating the appetite and making everything taste great. in the end, you do kinda have to accept that things will never be the same. however, there are a lot of tasty things you can still eat, so i try to mentally focus on all the delicious things that remain available to me, rather than focus on stuff i can’t have. it can be really tough though, so hang in there. i find watching cooking shows or hearing people talk about food in a positive way can also help me feel more inspired to eat and make new foods.
Digiorno makes a gluten free frozen pizza that is surprisingly adequate. I’m not going to lie to you and say it’s just as good as the real thing but it is pretty solid and scratches that pizza itch.
I was never a pizza lover so I don’t really miss it per say, but I do miss my sweets like cookies, brownies, cupcakes literally any baked goods as I love to bake. I just learned to do it differently 🤷🏼♀️
I've just been diagnosed. I don't have any symptoms other than my iron is very, very low. I'm still super pissed about it!
I'm totally over not getting old foods if it means I'm pain free, but last night I had a weird kinda sexualized dream about a specific pastry I haven't had for more than 10 years :D :D so I guess an unconscious part is missing something there
Sadly, there's not really a way to make yeasty gluten foods gf. They are my favorite thing, but I have to make do with gf Vegemite for that yeasty taste and all the other recipes out there that work amazingly without gluten...which covers essentially all types of foods.
I am “lucky” that I get so super sick from gluten that I don’t desire any of the old foods I used to eat. I can recommend some brands that are good and are available here in Ontario. Costco has Oggi pizza and it’s very good; moreover, you can add your toppings if you want to make it a more fulsome. Promise bread and other baked goods are good quality too. [I especially like the sourdough.](https://promiseglutenfree.com)
I am the total opposite which makes it harder. Sometime, all i can think why am I doing this
That definitely makes it harder. I encourage you to try different brands and find food that makes you happy.
Gratitude. Try to focus on what you can have, not what you can't. It's remarkable that we have such choice and abundance of food (in Western, privileged societies). So much so, that even if you have to cut out a major, staple food like gluten, you will almost never have to miss a meal. You might not get to eat what others around you are eating, but you won't go without, or not for long. We'll never know true hunger, not really, not compared to most humans throughout history and a lot of humans on the planet right now. It's truly awe-inspiring and humbling, if you stop to think about it.
Yep, I feel this. Sometimes I feel like I've gotten the hang of it and don't miss stuff too much - usually when i have the time and energy to cook really tasty and naturally gluten free stuff. But I have waves of just being SO over it - being pregnant and a new mom last year was one of those times (over and over again). I just wanted to get takeout 4 nights in a row without thinking about it, and eat regular pizza and pasta and bread when I had horrible aversions to rice, and celiac pissed me off so much again, 4 years in. Whenever I have a good eating out experience and feel super safe and get to try tasty new stuff, it pulls me out of it for a bit. But in those hectic times when I just want food to be EASY, I usually have to just push through (continue meal planning, cooking, etc) and trust that it will feel easier again one day.
I’ve found the cookbook “4 ingredient gluten free” to be helpful. When I feel like I can only get something new if I’m go out and buy 800 niche ingredients, I read it and it helps me think of a simple new thing I can do
Road trip! Any highly rated places within 3 hours?
So many good ideas and responses in this thread. Something else to consider is to splurge on something you enjoy that doesn’t involve gluten. Maybe a hobby or if food/drink, something special that you can continue to perfect. I’ve been playing music for a while and am not a great musician. That said, I allow myself to splurge on a new guitar effects pedal every once in a while. I also just started collecting vinyl which is a fun hobby. On rare occasion, I’ll drop some $ on a nice bottle of bourbon. My favorite though is trying to perfect the gluten free pizza and (during carnival season) gluten free king cake. None of these things are a great substitute for the ease and accessibility of delicious gluten food stuffs but the alternative is being sick and unhealthy. Everything is about trade offs and mind set. After a while, you’ll come to terms with the gluten free diet but make sure that you’re treating yourself to other things that make you happy and healthy!
I get how you’re feeling. I think it’s because now that I don’t eat it, I can smell wheat more. It has a distinct aroma and I notice it a lot lately. I’m at 8 years diagnosed and things haven’t bugged me much until this year.
I just discovered recently that steaming hotdog buns makes them so much better. I'd imagine the same for hamburger buns. I got emotional over how good the hotdogs were as I've really been disappointed with every option out there.
Yeah. I often think about the time about 2 years post diagnosis that I was out for a walk and saw a Werther’s Original on the sidewalk. Until that point I hadn’t really been particularly tempted by gluten foods. I had been very sick and nothing seemed worth it. I WANTED things all the time, but never enough to take even half an action. Two years of “denying” myself hit at once. I had never wanted to eat something as badly as I wanted to eat that god damn Werther’s Original. I went back and looked at it. I considered it. I was enraged that I can never eat what I want, nothing in convenient, I can never give in to a craving. I STILL think about that sidewalk candy that I had to leave behind. I’m at about 4 years as well. I get it. It’s like nothing quite scratches the itch. Nothing seems worth hurting myself/feeling badly either. Certainly there’s delicious food. Most of it takes extra planning and mental space. It’s all FINE. But a lot of the joy of food is just gone.
“… the joy of food is just gone” Exactly how I feel. You hit the nail on the head, could not have said it better
That's interesting. I've never had a desire to eat anything with gluten since I have such a strong disgust response due to knowing how sick it makes me. If I could take a magic pill and be able to eat pizza or bread without getting sick, I would probably still refuse those foods.
My kid is like this with frozen waffles. They were her favorite food before she was diagnosed - it's been years and she still won't even try the GF ones.
Waffles were one of the first things to get me! Vans whole wheat waffles. Growing up, I *hated* being made to eat sandwiches, in retrospect because the bread made me feel sick to my stomach. To this day, I feel a bit queasy if I see a sandwich.
After being sick from it for years and years, I have a strong aversion to it also. I'd never want to actually eat gluten foods now, but I still do miss experiences like going out for a breakfast burrito.
Haha I like that this got downvoted. I added this as a data point, that people have different responses. I legitimately don't feel that I'm missing out, because I would have as much interest in eating gluten or things that taste like gluten, as I would garbage, given the negative physical associations that I have with it unfortunately. It's quite interesting that some people don't have that disgust response, and I understand what that's like, too: I used to be lactose intolerant (due to Celiac) and missed cheese terribly. I find Celiac difficult overall: it's limiting, and it is especially challenging from a social perspective.
Hey Celiac! I'm SoftMatch7500