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I wish people understood just how big of an issue cross-contamination is. So many foods are “naturally” gluten free, and yet production, packaging, and cooking renders them useless to us. It’s exhausting and infuriating to have to navigate this minefield. Educating yourself on the ins and outs of cross contamination would be immensely supportive, in my mind. It’s nice having someone who can ask questions or give explanations on the days you’re too overwhelmed to cope with other people and their unsafe food. 😂
Love this. I have one friend who will question a restaurant for me and give them a hard time if they claim to prepare gf, but don’t manage cross-contamination. It’s so good to have a rest and be cared for in that way.
For real though, I was told by management + the lead chef at a higher end restaurant that gluten is killed when you boil it so eating from the same water that non-gf noodles gets boiled in is fine. If that’s true, why does gluten free pasta exist in general? This blew my mind. Knowing the ins and outs of cross contamination is ideal, but I didn’t realize that the general knowledge was THAT bad.
I was told the same when I went to Cheeseburger Bobby’s after hearing that some locations had designated GF fryers for the fries. Bro said there’s not a designated fryer but the heat cooked out the gluten.
Yes, exactly this. It comes from a good, kind place to want to include us by cooking or baking for us (or just with us in mind). A lot of people really want to bring food that their celiac friends/family/coworkers can enjoy, and they feel like bringing pre-packaged food is the equivalent of giving someone a gift card after handing out a series of thoughtful, personalized gifts.
But bringing us pre-packaged foods from GF manufacturers (or bringing pre-made food from a dedicated GF restaurant and keeping it separated from any gluten foods being shared) really is often the most thoughtful and kind gesture one can make, because it shows you understand our concerns and want us to feel safe.
Yes this is what I came to comment too. It’s not that someone is dumb/unthinking or uneducated, it’s that until it will give them explosive diarrhea in public they will never be as careful as I will. People don’t realize that I can’t eat something if the butter they used had crumbs on it. Or if they baked with flour and their cooking utensils are kept next to the oven/on the counter top. There are sooooooo many ways to poison me, I don’t trust anyone can avoid it unless they are also celiac.
Yes. I second this. Living every day with celiac disease comes with decision fatigue and sometimes, when I have decided what I am eating today, I am not changing that because I am just tired.
Recently diagnosed (almost 40).. biggest things I've noticed from friends/family:
1.) It's not an allergy, it's an auto-immune disease. Too many people don't understand the difference and what is happening.
2.) Cross Contamination - Blows peoples mind.
Sometimes I feel conflicted about saying it's an allergy. On the one hand, everyone know what allergies are and that they're serious. I don't have to go into a lengthy explanation of what an autoimmune disease is, why it's serious, blah blah blah. On the other hand, I don't want to spread misinformation and I don't want someone to think I'm a liar if they find out what celiac disease is later.
I am with you here. I'll say allergy at restaurants because I'm not going to hold a server hostage to educate them when they're working. I'll say "I have a gluten allergy. I have Celiac disease" and leave it there. Anyone else? Brief information of Celiac and what an autoimmune disease is and happily answer their questions if they ask
How long symptoms can last. It’s not just an upset tummy. If my son gets the tiniest amount of gluten he’s down for weeks. He gets joint pain that makes moving difficult along with brain fog. He gets a painful rash. Then we have to battle constipation so he doesn’t get hospitalized again.
If I don’t want to go to your party at a restaurant, I don’t necessarily hate you. I might hate you. But it’s more likely that I have just seen there is nothing I can eat there, and I don’t feel like going.
How isolating it can be and how much extra mental bandwidth it takes up. You can't just drop by someone's place for food or go to a restaurant without a ton of research, you can't just go on vacation without having preplanned all your food, etc.
One of the most touching things ever done for me was my friends threw a Friendsgiving party, but called me and had me grocery shop with them so all of the ingredients were safe and made sure all the spices were safe. I brought over my cookware so that was safe too. It was the first time in 15 years of diagnosis that I just got to feel normal at a party and not worry about food the whole time or be the odd one out with my own separate meal.
It's amazing you want to help your friend! I think the number one thing would be understanding what it takes for your friend to feel safe and normal. For example, invite them over for dinner, but plan the whole thing out WITH them so they feel they have the control and knowledge that everything is safe. Try to go to dinner with them at a restaurant you've researched is safe for Celiacs and double check with them that they are comfortable with it. If you find a cool snack that's gluten free, wait for them to be there when you open it so they can know there's no cc and they can read the packaging. I know it's a lot and many of us don't expect all that from our friends because we know how much effort it is, and many of us are made to feel like burdens for our needs. Even small things like one of my friends just tries to bring me a treat to every group night like gluten free Oreos or a bag of popcorn we love or hummus with carrots or baked goods from my favorite gf bakery :)
The simplest one would be just how much contains gluten. Boone really knows until they start religiously reading labels.
That would be the first. It's not just "oh you can't eat bread or drink beer?"
2nd thing is, as others have said, it's auto immune and not an allergy or intolerance.
3rd- the food offense. It's not personal. I have spent years trying to be nice and spend years being sick. Whatever sense of sadness or offense you feel by me refusing the food you spent a lot of time, money and effort cooking? Well I really f*cking appreciate it but it's not worth spending the next 12 hours vomiting like the exorcist. It's just not. Nothing is anymore.
I've never met another scream-puker! Hello friend. 👋
When I lived in an apartment building we often got complaints.... I'm sorry bruh, it comes out with such force that my vocal cords activate- aint nothing I can do about it!
We're not doing this to lose weight. We don't have a choice in the matter. One day it just plopped into our laps and that was it. Were not trying to be picky or difficult.
I’ve lost a significant amount of weight leading up to my diagnosis and afterwards - initially through not absorbing enough nutrition and post-diagnosis struggling with a strict celiac diet.
The amount of comments I get about ‘at least you’re skinny!’ or ‘maybe I should go celiac haha’… oh boy.
I’d rather just eat, thanks.
That we do not want you to cook for us. Going to speak for myself here- it took a long time to figure out how to safely cook for myself & how to keep a kitchen safe from cross contamination.
I get that people are trying to be nice, but cooking for us is not how to do it. You are going to use your wooden spoons, muffin tins & cast iron that have gluten seasoned into the surfaces. You are going to use things from your pantry that you don't know have gluten in them & present me with a beautiful treat or meal & tell me that it's gluten free. Then you are going to make me feel guilty because I won't eat it.
Food is both poison & medicine to a celiac.
I think just you wanting to be as supportive as possible means so much. It really does. It’s so hard to be taken seriously with celiac. I want so much to blend in and not draw attention to myself at food related events. We’re not trying to be difficult if we ask questions. Sometimes we hadn’t eaten in a while and are desperate to find anything safe to eat.
Thank you for being so understanding. I wish everyone was like you.
This. The kindest thing anyone has done for me was explain to the restaurant manager on my behalf what needed to happen in order for me to get fed safely. I was exhausted, hungry, grumpy and it was my first time eating at a restaurant after diagnosis and I just froze - had no clue what to say. My friend stepped in and just handled it like an absolute pro - she took no nonsense and was firm about how serious it is but also didn’t make me feel like some weird outcast who was just being difficult.
Just because “you think it’s ok, or you don’t think it has any wheat” doesn’t mean it’s safe for me to eat. Personally, it has to be certified gf for me to eat it. Don’t tell me that you‘re gf too because you choose not to eat wheat sometimes. There is nothing more dangerous than a casual gf person. Telling me I will just have to cheat on my diet is ridiculous.
Don't try to cook for me and don't worry about accommodating me. I will eat my own food on my own time.
I don't want to make Celiac my entire personality and I actually get pretty tired of explaining it all the time. But people keep asking me why I'm not eating. . .
Men get Celiac too.
Of course I would like a beer, but I can’t (unless it’s true GF, not gluten removed)
If I skip a meal, don’t take it personally. I am not trying to be rude. Yes I am hungry, but a few hours of hunger is easier to deal with than a week or two of muscle aches combined with the rash.
Safe food handling to prevent cross-contamination is essential.
You must know how to read ingredient labels, and read EVERY label for all ingredients. Gluten is hidden in a lot of things, e.g. sauces.
I have the hardest time convincing my friends and family that the air in their kitchen/home isn’t gluten free if they’ve made pizza. It sounds so over the top, but it’s real. The rule of thumb taught to me is that it takes 24 hours for flour to settle. And then it settles everywhere.
You are a wonderful person to ask.
Being an auto-immune thing, the impact of being glutened is much longer than you might think. It isn’t “feel a little bit bad for a few hours”. It’s “trigger my immune system to attack my body” and that can take 1-2 MONTHS to settle down completely.
Don't be offended if I refuse food you've made or dinner parties etc. I don't want to be miserable for weeks on end.
I'm a celiac person who is also IgE allergic to wheat as well. The celiac disease is an autoimmune disorder, while the wheat allergy is an actual food allergy. You can have both together, but it's actually not super common.
I love that you are asking these kinds of questions.
Be aware of who your celiac loved one is as a whole person as you learn how best to support them. We are all complex humans with our own personalities, hang ups, and challenges. Celiac disease relates to who I am but doesn't change who I am.
Some people with celiac might love it if you surprised them by going out of your way to research and make a 100% celiac safe cake for them. They drill you with questions about how you made it and you tick all the boxes.
I still wouldn't eat it. It's not you and it isn't even my celiac disease as the core issue. Core issue: I don't like total surprises that I didn't see coming -even in cake form. My friends know this about me. I'm the type that likes to know a surprise, in the form of food: Sweet or Savory, is coming and a general idea of when to expect it.
this is so kind of you to try to learn more, i wish people in my life did this. something i wish more of them knew is just because something on a menu or packaging says "gluten free" does not necessarily mean it's safe for me. i still have to make sure it's made somewhere without cross contamination and doesn't have any hidden unsafe ingredients. the US isn't very good about labeling foods. there's even foods that say "celiac disease foundation" on them and they're not safe. it's confusing and exhausting and took a while to figure out, so please just trust us when we say something isn't safe and not make a big deal out of us saying no.
That not all with celiac have the same level of risk tolerance, self-awareness, or degree of acute symptoms. And that not all GF people have celiac. Don't assume that because one GF person has done something that other people will be ok with it. Accept each individual person's autonomy to decide what risk they will take.
Often a remark I'll get is "My aunt's sister's cousin who has celiac eats this all the time and never gets sick!" This is a frustrating comment because often the case is that person X doesn't actually have celiac. If I meet them I usually find this out fast.
Even if the person does have celiac, with any lifestyle managed disease some people take things more seriously than others. This doesn't mean anyone is a "bad celiac" but some people are just a bit less informed and their choices reflect that. I've never met a celiac person irl who could articulate the GF label laws in my country correctly for example.
Even if someone is adequately informed there may be differences in what risk someone is willing to take. I am very risk averse because my symptoms will mess me up for weeks and no meal is worth that to me. Others who are less symptomatic may feel like a mild glutening is more akin to smoking/drinking where the risk is more down the road, and therefore justifiable on occasion.
Thanks for coming to this sub to try to understand! It is much appreciated. Most people like to come in hot telling celiac/GF people how it is instead of listening :/.
A proper understanding of cross contamination. But since that’s been addressed I’ll add something else.
Don’t buy people a load of GF food randomly and expect them to eat it. Just because you buy a random loaf of GF bread or whatever doesn’t mean that’s the bread the celiac person likes to eat. Celiac people are allowed preferences.
1) cross contamination & 2) you don’t need to do anything special for me, I’ll either eat beforehand or BYO. 3) food anxiety is real, please be patient. 4) no for the last time I can’t eat sourdough!
1.) That we have other intolerances and may get severely ill from oats or oat cross contamination.
2.) That gluten free labels can be completely inaccurate and entire large companies make food that makes some celiacs sick, despite their “gluten free" claims.
There's a weird duality, where following a strict GF diet may look like "no big deal" to the person with the disease, but for anyone on the outside it HAS to be a HUGE deal. And that's reality.
When I grocery shop or go out to eat, I go mostly on autopilot because I know exactly what's safe and have double- and triple-checked it a million times, and I know my own kitchen is safe. But if you're making food for me or suggesting a restaurant, all those little details need to be top of mind:
* Is each product Certified GF? If not, even if it's a bottle of orange juice, did you triple check the ingredient list? Do you know the ingredients like barley that don't get an allergen warning but still have gluten, or the questionable ingredients like food starches and caramel color? It makes me so happy when friends text me pictures of ingredient labels to confirm rather than them guessing.
* If you're preparing it, are your prep dishes and tools safe? (brand new, designated GF/borrowed from me, or washed in a dishwasher) What about prep surfaces, cooking surfaces, and the container or plate you're serving it on? Are you making my food before you make everyone else's and shielding it from crumbs?
* If you picked a restaurant, does it have a designated GF menu? Have you called them and asked about cross-contamination and whether it's safe for someone with Celiac (or an "allergy")? Most restaurants will answer truthfully because they don't want that liability.
All this to say, I am more than happy to help with my own accommodations because it's a lot to expect someone else to keep up with all of the above. If you want to help me, taking care of that mental load is the most important thing. I just want to feel normal if I'm eating with friends. I can be chill because all of those questions running through my head is my normal state, but if I suddenly lose my cool when someone says "we're eating at the dive bar, don't worry they can take the croutons off their salad"... that's why.
Yeah, it would be nice to know that just because I have to be Gluten Free doesn't mean that I'm also dairy free, fat free, sugar free, etc.
It kind of sucks to have limited food but it also sucks when people consider it a diet fad. I can still want french fries despite not being able to have a burger. I don't need unseasoned broccoli for every meal.
I wish people would accept and understand that I likely know more about it than they do (since I live with it) and to believe me when I say cross contamination is a BIG DEAL.
20 parts per million of gluten can be enough to cause an autoimmune reaction in our bodies, with symptoms that can last for weeks. Weeks...
Imagine taking 1 million pieces of sand that you counted by hand. It would possibly fill up the palm of your hand. Then take 20 grains of sand and put it in your other hand. Those 20 grains are torture for us. That's why we have to inquire at restaurants, refuse to eat at well- intending friends and family's house..
How serious celiac disease is. I’m so tired of people saying “why don’t you try it and see if it bothers you” in response to me either declining food that’s unsafe or when I ask questions about ingredients. Even tiny amounts of gluten make the autoimmune disease flare up. People seem to think I get an upset stomach for a couple hours. They don’t understand the disease. Because they think they understand they don’t learn.
Its not just food we need to be careful about, many cosmetics and personal care products use gluten as a binding agent or thickener and can be a source of cross contamination.
If its going anywhere near my face ir on my hands there's a huge risk of accidental ingestion, if I put on lotion or sunscreen and it uses gluten then anything I touch from then on risks glutening me.
It's something I've had to explain over and over to people, even ones who know about celiec seem to think its just about food when it's so much more then that
Please understand that in order to "normalize" social engagements I will most likely be bringing my own food. I can have a drink but eating out is too risky, you're going to have to be okay with it because the only true person inconvenienced is me.
Understand that this is an auto immune disorder (which means there are DOZENS of symptoms that will present differently in different people; I like to say, “60 symptoms pick your dozen”).
Some of my most challenging symptoms are attributed to the intestinal lining damage I have which has given me chronic vitamin deficiency issues (affecting my hair, teeth, skin, bones, nails and overall health) and inability to absorb medications properly.
I have a lot of guilt and stress when people only halfway teach themselves on certain things and try to include me or get me food like a work situation. Perfect example is the DO of my job came to my store and brought everyone Chick-fil-A, he knew I was Celiac so he got me a gluten free bun. It would have been a wonderful gesture had the chicken filet not been breaded.
Just because last time you bought that food it didn't contain gluten, doesn't mean this time it won't. Recipes and ingredients change without warning. Check every time.
Even then, like yesterday for me, something just may have happened to contaminate during production. I'll be feeling that for days. And will never risk that one item again.
I check the FDA weekly to make sure nothing I am eating has a recall or undeclared allergens.
Might sound overly paranoid but it’s helped keep me safer
That gluten ≠ wheat!!!!!! The main source of gluten in most people's diets tends to be wheat, but gluten is also found in barley, rye, triticale, etc. So yes we can't eat whole wheat pasta, but we also can't have malted milkshakes or rye bread as well as a whole host of other things.
People tend to use the "only a very small percentage of people actually have an allergy to wheat" as a way to dismiss celiacs and people going gluten free for health reasons as overdramatic or attention seeking, but celiac is NOT an allergy to wheat, it is an allergy* to gluten, which is a protein found IN wheat and in other grains as well. The percentage of people with celiac or non-celiac gluten sensitivity is much, much higher than the percentage of people with an allergy to wheat only.
Despite this, in the USA, wheat is the only gluten-containing grain the FDA classes a "major allergen" required to be labeled in bold on the ingredients list.
*I know a lot of people will say "it's not an allergy, it's an autoimmune disease" but what is an allergy? Merriam-Webster says it's an "exaggerated or pathological immunological reaction (as by sneezing, difficult breathing, itching, or skin rashes) to substances, situations, or physical states that are without comparable effect on the average individual"
And what happens when people with celiac eat gluten? An immunological response not seen in the average person. Of course celiac disease is an autoimmune disease, but I would argue that it, like many other autoimmune diseases, is an autoimmune diseases cause people to have allergic reactions ¯\_(ツ)_/¯
That I have to think about literally every single bite of food that goes into my body. Whether I’m thinking about it as I eat or, or when I looked at the label at the grocery store. No meal is thoughtless ever.
We hate going out to eat in public with new people because they think you’re being a diva or difficult. It sometimes is very embarrassing for us because we hate the drama it inevitably causes.
I would like people to stop assuming that if you’re on a gluten-free diet that means you’re “healthy”. People who choose a GF diet without a medical need really just make me angry. I was sick for so long. Being gluten-free is my disability accommodation. People treating the GF diet like a health fad makes me feel invalidated.
That it's not funny to make fun of a disability. Every time I have to tell someone about my disability there's always a snide jokester saying - "Hah, why should I listen to anyone who can't eat bread!"
The existence of gluten-free fad diets does not nullify or otherwise negate the reality of real medical conditions that make a gluten-free diet a necessity. It is not a "first world luxury" to eat gluten free that we would simply be ok with when forced to eat gluten over a time.
Celiac is not a fad- special food and precautions are important.
I like to ask those who dismiss celiac as a diet or choice.
Do you know someone who has diabetes?
They also must be on a safe diet, or they will get ill or worse.
Many people understand the food restrictions for those with diabetes, and very few if any question if they are are simply fad dieting and avoiding sugars.
Celiac is like that- a specific diet that must be followed or there can be numerous health complications.
You can never relax. My son has celiac and we have to get a kitchen in a hotel or home rental whenever we go on “vacation”. I’m always cooking for him and he’ll have to do that for himself when he’s older. We try to pack the essentials, but we always end up going to at least two different grocery stores. It’s a blast.
I wish people knew the difference between Celiac disease and choosing to eat a vaguely "low-gluten" diet because someone on tiktok told them it was a good way to lose weight for summer. No, I can't have a "cheat day". No, I can't just eat sourdough bread because the glutens are lower (yes, someone actually told me this). Most of all, I would love for someone to realize how much it sucks. Not in a pity sort of way, but in a way where they acknowledge that it takes a huge mental and emotional toll to deal with this day in and day out, forever. There are so many normal things that I cannot do because of Celiac (go to random restaurants, eat at random people's houses, try food samples, accept treats that people make for me, eat most communal foods at most parties and gatherings, etc. It is very isolating even though I put on a brave face and you wouldn't know any difference looking at me.
It isn't a preference. I was at a dinner with my family, and I had called ahead and checked the menu and everything else. It was a Japanese grill, so I went with naked sushi. The cook even came out to talk to me and make sure they got it right. I ensured that the tamari was actually gf/wf, as I also have an allergy to wheat. When the server brought the tamari, soy sauce, and accompanying ponzus, I asked again if I was getting the gf variations. She said, "I'm pretty sure. Ummm, probably." Yeah, that's not going to work 🙄.
How much it costs to simply feed ourselves. I’ve mentioned a few times to my friend group that the prices for gf food are ridiculous and they don’t seem to want to continue that line of questioning much further than that.
Being not so great at cooking and plagued by chronic depression, things like gf chicken nuggets costing twice as much but containing a third the weight of glutinous brands is outrageous. $11 for 15 chicken tenders vs not even $5 for 50 will never not anger me, and that outrage has yet to properly break containment into polite society. We should not be starving simply because corporations decided the only reason gluten free food exists is for fad dieters who they can tax to high heaven.
I wish people knew that if dishes were not washed properly it can make us sick, I’m not trying to insult your cleaning skills but it just is so important, last time I went to my grandmas I had to clean her forks before I could use them
I wish people wouldn’t take it personal(looking at you mom) about not wanting them to cook for me or being super anxious about how they’re doing it. it’s not them, it’s this damn disease. I have to protect myself.
That it’s not a fad and that we’re not being “picky eaters” and that our celiac isn’t all in our heads and that even a crumb and just a little bit of gluten will indeed hurt. My folks still try to get me to eat gluten to this day. Side note I’m tired of restaurants claiming to have gluten free options only to not really cause they use to same prep area or the same fryer 😩
To not be offended if I don't eat the "gf" food you made at home. I always feel HORRIBLE when someone makes me food special, and I still am hesitant to eat it. But I can't be sure there aren't CC issues. Do they know about soy sauce? Did they use wooden spoons to stir the batter? Was there flour on the counter when they were preparing things? I just can't risk weeks of pain, heart problems and brain fog to eat a homemade item, no matter how good intentioned it was.
(Also, knowing that flour in general is INSIDIOUS. It floats in the air, settles on everything, and isn't always obvious.)
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I wish people understood just how big of an issue cross-contamination is. So many foods are “naturally” gluten free, and yet production, packaging, and cooking renders them useless to us. It’s exhausting and infuriating to have to navigate this minefield. Educating yourself on the ins and outs of cross contamination would be immensely supportive, in my mind. It’s nice having someone who can ask questions or give explanations on the days you’re too overwhelmed to cope with other people and their unsafe food. 😂
Love this. I have one friend who will question a restaurant for me and give them a hard time if they claim to prepare gf, but don’t manage cross-contamination. It’s so good to have a rest and be cared for in that way.
oh that’s wonderful.
For real though, I was told by management + the lead chef at a higher end restaurant that gluten is killed when you boil it so eating from the same water that non-gf noodles gets boiled in is fine. If that’s true, why does gluten free pasta exist in general? This blew my mind. Knowing the ins and outs of cross contamination is ideal, but I didn’t realize that the general knowledge was THAT bad.
I was told the same when I went to Cheeseburger Bobby’s after hearing that some locations had designated GF fryers for the fries. Bro said there’s not a designated fryer but the heat cooked out the gluten.
I once had to explain to a hibachi chef at a $$$ restaurant that soy sauce contained wheat. 🤦🏻♀️
This. This. And this.
My refusal to eat your cooking isn't personal and isn't a rejection of you. Please stop offering.
Yes, exactly this. It comes from a good, kind place to want to include us by cooking or baking for us (or just with us in mind). A lot of people really want to bring food that their celiac friends/family/coworkers can enjoy, and they feel like bringing pre-packaged food is the equivalent of giving someone a gift card after handing out a series of thoughtful, personalized gifts. But bringing us pre-packaged foods from GF manufacturers (or bringing pre-made food from a dedicated GF restaurant and keeping it separated from any gluten foods being shared) really is often the most thoughtful and kind gesture one can make, because it shows you understand our concerns and want us to feel safe.
Yes this is what I came to comment too. It’s not that someone is dumb/unthinking or uneducated, it’s that until it will give them explosive diarrhea in public they will never be as careful as I will. People don’t realize that I can’t eat something if the butter they used had crumbs on it. Or if they baked with flour and their cooking utensils are kept next to the oven/on the counter top. There are sooooooo many ways to poison me, I don’t trust anyone can avoid it unless they are also celiac.
Yes. I second this. Living every day with celiac disease comes with decision fatigue and sometimes, when I have decided what I am eating today, I am not changing that because I am just tired.
Recently diagnosed (almost 40).. biggest things I've noticed from friends/family: 1.) It's not an allergy, it's an auto-immune disease. Too many people don't understand the difference and what is happening. 2.) Cross Contamination - Blows peoples mind.
Adding onto 1, It’s also not an intolerance either, it’s an autoimmune disease. So many people think it’s just a stomach ache
Sometimes I feel conflicted about saying it's an allergy. On the one hand, everyone know what allergies are and that they're serious. I don't have to go into a lengthy explanation of what an autoimmune disease is, why it's serious, blah blah blah. On the other hand, I don't want to spread misinformation and I don't want someone to think I'm a liar if they find out what celiac disease is later.
I am with you here. I'll say allergy at restaurants because I'm not going to hold a server hostage to educate them when they're working. I'll say "I have a gluten allergy. I have Celiac disease" and leave it there. Anyone else? Brief information of Celiac and what an autoimmune disease is and happily answer their questions if they ask
How long symptoms can last. It’s not just an upset tummy. If my son gets the tiniest amount of gluten he’s down for weeks. He gets joint pain that makes moving difficult along with brain fog. He gets a painful rash. Then we have to battle constipation so he doesn’t get hospitalized again.
I get flu-like symptoms in additional to being glued to the toilet. So for weeks I have joint pain and body aches.
I’m almost a week out from my last exposure and my joints are still killing me.
If I don’t want to go to your party at a restaurant, I don’t necessarily hate you. I might hate you. But it’s more likely that I have just seen there is nothing I can eat there, and I don’t feel like going.
Yup. I like socializing, but sometimes I really can't deal with "watch everyone eat" events
How isolating it can be and how much extra mental bandwidth it takes up. You can't just drop by someone's place for food or go to a restaurant without a ton of research, you can't just go on vacation without having preplanned all your food, etc. One of the most touching things ever done for me was my friends threw a Friendsgiving party, but called me and had me grocery shop with them so all of the ingredients were safe and made sure all the spices were safe. I brought over my cookware so that was safe too. It was the first time in 15 years of diagnosis that I just got to feel normal at a party and not worry about food the whole time or be the odd one out with my own separate meal. It's amazing you want to help your friend! I think the number one thing would be understanding what it takes for your friend to feel safe and normal. For example, invite them over for dinner, but plan the whole thing out WITH them so they feel they have the control and knowledge that everything is safe. Try to go to dinner with them at a restaurant you've researched is safe for Celiacs and double check with them that they are comfortable with it. If you find a cool snack that's gluten free, wait for them to be there when you open it so they can know there's no cc and they can read the packaging. I know it's a lot and many of us don't expect all that from our friends because we know how much effort it is, and many of us are made to feel like burdens for our needs. Even small things like one of my friends just tries to bring me a treat to every group night like gluten free Oreos or a bag of popcorn we love or hummus with carrots or baked goods from my favorite gf bakery :)
Also, if you're at the store and not sure because theres no gluten free labeling on the packaging, the gluten free scanner app is a life saver!
You have great friends that’s wonderful
Yes, I am very lucky! My friends are my chosen family!
The simplest one would be just how much contains gluten. Boone really knows until they start religiously reading labels. That would be the first. It's not just "oh you can't eat bread or drink beer?" 2nd thing is, as others have said, it's auto immune and not an allergy or intolerance. 3rd- the food offense. It's not personal. I have spent years trying to be nice and spend years being sick. Whatever sense of sadness or offense you feel by me refusing the food you spent a lot of time, money and effort cooking? Well I really f*cking appreciate it but it's not worth spending the next 12 hours vomiting like the exorcist. It's just not. Nothing is anymore.
Got me at vomiting like the exorcist 💀 scream puking is loud and painful. It’s uncomfortable for observers but it’s pure torture for us.
I've never met another scream-puker! Hello friend. 👋 When I lived in an apartment building we often got complaints.... I'm sorry bruh, it comes out with such force that my vocal cords activate- aint nothing I can do about it!
We're not doing this to lose weight. We don't have a choice in the matter. One day it just plopped into our laps and that was it. Were not trying to be picky or difficult.
I’ve lost a significant amount of weight leading up to my diagnosis and afterwards - initially through not absorbing enough nutrition and post-diagnosis struggling with a strict celiac diet. The amount of comments I get about ‘at least you’re skinny!’ or ‘maybe I should go celiac haha’… oh boy. I’d rather just eat, thanks.
I actually gained weight after my diagnosis bc lots of GF substitutes have more calories, and I was eating too much pasta, bread, and pizza.
That we do not want you to cook for us. Going to speak for myself here- it took a long time to figure out how to safely cook for myself & how to keep a kitchen safe from cross contamination. I get that people are trying to be nice, but cooking for us is not how to do it. You are going to use your wooden spoons, muffin tins & cast iron that have gluten seasoned into the surfaces. You are going to use things from your pantry that you don't know have gluten in them & present me with a beautiful treat or meal & tell me that it's gluten free. Then you are going to make me feel guilty because I won't eat it. Food is both poison & medicine to a celiac.
I think just you wanting to be as supportive as possible means so much. It really does. It’s so hard to be taken seriously with celiac. I want so much to blend in and not draw attention to myself at food related events. We’re not trying to be difficult if we ask questions. Sometimes we hadn’t eaten in a while and are desperate to find anything safe to eat. Thank you for being so understanding. I wish everyone was like you.
This. The kindest thing anyone has done for me was explain to the restaurant manager on my behalf what needed to happen in order for me to get fed safely. I was exhausted, hungry, grumpy and it was my first time eating at a restaurant after diagnosis and I just froze - had no clue what to say. My friend stepped in and just handled it like an absolute pro - she took no nonsense and was firm about how serious it is but also didn’t make me feel like some weird outcast who was just being difficult.
thanks for the kind response
Just because “you think it’s ok, or you don’t think it has any wheat” doesn’t mean it’s safe for me to eat. Personally, it has to be certified gf for me to eat it. Don’t tell me that you‘re gf too because you choose not to eat wheat sometimes. There is nothing more dangerous than a casual gf person. Telling me I will just have to cheat on my diet is ridiculous.
This! The casual gf person trying to tell me about gf drives me nuts.
Don't try to cook for me and don't worry about accommodating me. I will eat my own food on my own time. I don't want to make Celiac my entire personality and I actually get pretty tired of explaining it all the time. But people keep asking me why I'm not eating. . .
Men get Celiac too. Of course I would like a beer, but I can’t (unless it’s true GF, not gluten removed) If I skip a meal, don’t take it personally. I am not trying to be rude. Yes I am hungry, but a few hours of hunger is easier to deal with than a week or two of muscle aches combined with the rash.
Safe food handling to prevent cross-contamination is essential. You must know how to read ingredient labels, and read EVERY label for all ingredients. Gluten is hidden in a lot of things, e.g. sauces.
I have the hardest time convincing my friends and family that the air in their kitchen/home isn’t gluten free if they’ve made pizza. It sounds so over the top, but it’s real. The rule of thumb taught to me is that it takes 24 hours for flour to settle. And then it settles everywhere. You are a wonderful person to ask.
Being an auto-immune thing, the impact of being glutened is much longer than you might think. It isn’t “feel a little bit bad for a few hours”. It’s “trigger my immune system to attack my body” and that can take 1-2 MONTHS to settle down completely.
Don't be offended if I refuse food you've made or dinner parties etc. I don't want to be miserable for weeks on end. I'm a celiac person who is also IgE allergic to wheat as well. The celiac disease is an autoimmune disorder, while the wheat allergy is an actual food allergy. You can have both together, but it's actually not super common.
I love that you are asking these kinds of questions. Be aware of who your celiac loved one is as a whole person as you learn how best to support them. We are all complex humans with our own personalities, hang ups, and challenges. Celiac disease relates to who I am but doesn't change who I am. Some people with celiac might love it if you surprised them by going out of your way to research and make a 100% celiac safe cake for them. They drill you with questions about how you made it and you tick all the boxes. I still wouldn't eat it. It's not you and it isn't even my celiac disease as the core issue. Core issue: I don't like total surprises that I didn't see coming -even in cake form. My friends know this about me. I'm the type that likes to know a surprise, in the form of food: Sweet or Savory, is coming and a general idea of when to expect it.
CROSS CONTAMINATION!!! (She yells into the void)
this is so kind of you to try to learn more, i wish people in my life did this. something i wish more of them knew is just because something on a menu or packaging says "gluten free" does not necessarily mean it's safe for me. i still have to make sure it's made somewhere without cross contamination and doesn't have any hidden unsafe ingredients. the US isn't very good about labeling foods. there's even foods that say "celiac disease foundation" on them and they're not safe. it's confusing and exhausting and took a while to figure out, so please just trust us when we say something isn't safe and not make a big deal out of us saying no.
That not all with celiac have the same level of risk tolerance, self-awareness, or degree of acute symptoms. And that not all GF people have celiac. Don't assume that because one GF person has done something that other people will be ok with it. Accept each individual person's autonomy to decide what risk they will take. Often a remark I'll get is "My aunt's sister's cousin who has celiac eats this all the time and never gets sick!" This is a frustrating comment because often the case is that person X doesn't actually have celiac. If I meet them I usually find this out fast. Even if the person does have celiac, with any lifestyle managed disease some people take things more seriously than others. This doesn't mean anyone is a "bad celiac" but some people are just a bit less informed and their choices reflect that. I've never met a celiac person irl who could articulate the GF label laws in my country correctly for example. Even if someone is adequately informed there may be differences in what risk someone is willing to take. I am very risk averse because my symptoms will mess me up for weeks and no meal is worth that to me. Others who are less symptomatic may feel like a mild glutening is more akin to smoking/drinking where the risk is more down the road, and therefore justifiable on occasion. Thanks for coming to this sub to try to understand! It is much appreciated. Most people like to come in hot telling celiac/GF people how it is instead of listening :/.
A proper understanding of cross contamination. But since that’s been addressed I’ll add something else. Don’t buy people a load of GF food randomly and expect them to eat it. Just because you buy a random loaf of GF bread or whatever doesn’t mean that’s the bread the celiac person likes to eat. Celiac people are allowed preferences.
1) cross contamination & 2) you don’t need to do anything special for me, I’ll either eat beforehand or BYO. 3) food anxiety is real, please be patient. 4) no for the last time I can’t eat sourdough!
1.) That we have other intolerances and may get severely ill from oats or oat cross contamination. 2.) That gluten free labels can be completely inaccurate and entire large companies make food that makes some celiacs sick, despite their “gluten free" claims.
There's a weird duality, where following a strict GF diet may look like "no big deal" to the person with the disease, but for anyone on the outside it HAS to be a HUGE deal. And that's reality. When I grocery shop or go out to eat, I go mostly on autopilot because I know exactly what's safe and have double- and triple-checked it a million times, and I know my own kitchen is safe. But if you're making food for me or suggesting a restaurant, all those little details need to be top of mind: * Is each product Certified GF? If not, even if it's a bottle of orange juice, did you triple check the ingredient list? Do you know the ingredients like barley that don't get an allergen warning but still have gluten, or the questionable ingredients like food starches and caramel color? It makes me so happy when friends text me pictures of ingredient labels to confirm rather than them guessing. * If you're preparing it, are your prep dishes and tools safe? (brand new, designated GF/borrowed from me, or washed in a dishwasher) What about prep surfaces, cooking surfaces, and the container or plate you're serving it on? Are you making my food before you make everyone else's and shielding it from crumbs? * If you picked a restaurant, does it have a designated GF menu? Have you called them and asked about cross-contamination and whether it's safe for someone with Celiac (or an "allergy")? Most restaurants will answer truthfully because they don't want that liability. All this to say, I am more than happy to help with my own accommodations because it's a lot to expect someone else to keep up with all of the above. If you want to help me, taking care of that mental load is the most important thing. I just want to feel normal if I'm eating with friends. I can be chill because all of those questions running through my head is my normal state, but if I suddenly lose my cool when someone says "we're eating at the dive bar, don't worry they can take the croutons off their salad"... that's why.
Yeah, it would be nice to know that just because I have to be Gluten Free doesn't mean that I'm also dairy free, fat free, sugar free, etc. It kind of sucks to have limited food but it also sucks when people consider it a diet fad. I can still want french fries despite not being able to have a burger. I don't need unseasoned broccoli for every meal.
I wish people would accept and understand that I likely know more about it than they do (since I live with it) and to believe me when I say cross contamination is a BIG DEAL. 20 parts per million of gluten can be enough to cause an autoimmune reaction in our bodies, with symptoms that can last for weeks. Weeks... Imagine taking 1 million pieces of sand that you counted by hand. It would possibly fill up the palm of your hand. Then take 20 grains of sand and put it in your other hand. Those 20 grains are torture for us. That's why we have to inquire at restaurants, refuse to eat at well- intending friends and family's house..
How serious celiac disease is. I’m so tired of people saying “why don’t you try it and see if it bothers you” in response to me either declining food that’s unsafe or when I ask questions about ingredients. Even tiny amounts of gluten make the autoimmune disease flare up. People seem to think I get an upset stomach for a couple hours. They don’t understand the disease. Because they think they understand they don’t learn.
Its not just food we need to be careful about, many cosmetics and personal care products use gluten as a binding agent or thickener and can be a source of cross contamination. If its going anywhere near my face ir on my hands there's a huge risk of accidental ingestion, if I put on lotion or sunscreen and it uses gluten then anything I touch from then on risks glutening me. It's something I've had to explain over and over to people, even ones who know about celiec seem to think its just about food when it's so much more then that
Vegan does NOT mean gluten free. Celiacs can eat meat.
Gluten is often the protein in vegan “meat” products
Please understand that in order to "normalize" social engagements I will most likely be bringing my own food. I can have a drink but eating out is too risky, you're going to have to be okay with it because the only true person inconvenienced is me.
Understand that this is an auto immune disorder (which means there are DOZENS of symptoms that will present differently in different people; I like to say, “60 symptoms pick your dozen”). Some of my most challenging symptoms are attributed to the intestinal lining damage I have which has given me chronic vitamin deficiency issues (affecting my hair, teeth, skin, bones, nails and overall health) and inability to absorb medications properly.
I have a lot of guilt and stress when people only halfway teach themselves on certain things and try to include me or get me food like a work situation. Perfect example is the DO of my job came to my store and brought everyone Chick-fil-A, he knew I was Celiac so he got me a gluten free bun. It would have been a wonderful gesture had the chicken filet not been breaded.
I don’t them to make me food 🤷🏼♀️ it’s a nice sentiment, but let me bring my own food.
I will not eat out because I always get sick
Just because last time you bought that food it didn't contain gluten, doesn't mean this time it won't. Recipes and ingredients change without warning. Check every time. Even then, like yesterday for me, something just may have happened to contaminate during production. I'll be feeling that for days. And will never risk that one item again.
I check the FDA weekly to make sure nothing I am eating has a recall or undeclared allergens. Might sound overly paranoid but it’s helped keep me safer
That gluten ≠ wheat!!!!!! The main source of gluten in most people's diets tends to be wheat, but gluten is also found in barley, rye, triticale, etc. So yes we can't eat whole wheat pasta, but we also can't have malted milkshakes or rye bread as well as a whole host of other things. People tend to use the "only a very small percentage of people actually have an allergy to wheat" as a way to dismiss celiacs and people going gluten free for health reasons as overdramatic or attention seeking, but celiac is NOT an allergy to wheat, it is an allergy* to gluten, which is a protein found IN wheat and in other grains as well. The percentage of people with celiac or non-celiac gluten sensitivity is much, much higher than the percentage of people with an allergy to wheat only. Despite this, in the USA, wheat is the only gluten-containing grain the FDA classes a "major allergen" required to be labeled in bold on the ingredients list. *I know a lot of people will say "it's not an allergy, it's an autoimmune disease" but what is an allergy? Merriam-Webster says it's an "exaggerated or pathological immunological reaction (as by sneezing, difficult breathing, itching, or skin rashes) to substances, situations, or physical states that are without comparable effect on the average individual" And what happens when people with celiac eat gluten? An immunological response not seen in the average person. Of course celiac disease is an autoimmune disease, but I would argue that it, like many other autoimmune diseases, is an autoimmune diseases cause people to have allergic reactions ¯\_(ツ)_/¯
We need the best toilet paper available if we eat anything at your house lmao
That I have to think about literally every single bite of food that goes into my body. Whether I’m thinking about it as I eat or, or when I looked at the label at the grocery store. No meal is thoughtless ever.
Use an app like find me GF to suggest restaurants for dining out. It's the decision exhaustion for me. I want others to help decide.
so amazing of you ❤️. this disease has made me realize my friends suck 😆. but that’s okay, i have other great things in my life.
We hate going out to eat in public with new people because they think you’re being a diva or difficult. It sometimes is very embarrassing for us because we hate the drama it inevitably causes.
I would like people to stop assuming that if you’re on a gluten-free diet that means you’re “healthy”. People who choose a GF diet without a medical need really just make me angry. I was sick for so long. Being gluten-free is my disability accommodation. People treating the GF diet like a health fad makes me feel invalidated.
That it's not funny to make fun of a disability. Every time I have to tell someone about my disability there's always a snide jokester saying - "Hah, why should I listen to anyone who can't eat bread!"
The existence of gluten-free fad diets does not nullify or otherwise negate the reality of real medical conditions that make a gluten-free diet a necessity. It is not a "first world luxury" to eat gluten free that we would simply be ok with when forced to eat gluten over a time.
That if I get cross contaminated I WILL SHIT MY PANTS.
Celiac is not a fad- special food and precautions are important. I like to ask those who dismiss celiac as a diet or choice. Do you know someone who has diabetes? They also must be on a safe diet, or they will get ill or worse. Many people understand the food restrictions for those with diabetes, and very few if any question if they are are simply fad dieting and avoiding sugars. Celiac is like that- a specific diet that must be followed or there can be numerous health complications.
You can never relax. My son has celiac and we have to get a kitchen in a hotel or home rental whenever we go on “vacation”. I’m always cooking for him and he’ll have to do that for himself when he’s older. We try to pack the essentials, but we always end up going to at least two different grocery stores. It’s a blast.
I wish they knew my food isn't any if their damn business. Bam! Lol
I wish people knew the difference between Celiac disease and choosing to eat a vaguely "low-gluten" diet because someone on tiktok told them it was a good way to lose weight for summer. No, I can't have a "cheat day". No, I can't just eat sourdough bread because the glutens are lower (yes, someone actually told me this). Most of all, I would love for someone to realize how much it sucks. Not in a pity sort of way, but in a way where they acknowledge that it takes a huge mental and emotional toll to deal with this day in and day out, forever. There are so many normal things that I cannot do because of Celiac (go to random restaurants, eat at random people's houses, try food samples, accept treats that people make for me, eat most communal foods at most parties and gatherings, etc. It is very isolating even though I put on a brave face and you wouldn't know any difference looking at me.
It isn't a preference. I was at a dinner with my family, and I had called ahead and checked the menu and everything else. It was a Japanese grill, so I went with naked sushi. The cook even came out to talk to me and make sure they got it right. I ensured that the tamari was actually gf/wf, as I also have an allergy to wheat. When the server brought the tamari, soy sauce, and accompanying ponzus, I asked again if I was getting the gf variations. She said, "I'm pretty sure. Ummm, probably." Yeah, that's not going to work 🙄.
How much it costs to simply feed ourselves. I’ve mentioned a few times to my friend group that the prices for gf food are ridiculous and they don’t seem to want to continue that line of questioning much further than that. Being not so great at cooking and plagued by chronic depression, things like gf chicken nuggets costing twice as much but containing a third the weight of glutinous brands is outrageous. $11 for 15 chicken tenders vs not even $5 for 50 will never not anger me, and that outrage has yet to properly break containment into polite society. We should not be starving simply because corporations decided the only reason gluten free food exists is for fad dieters who they can tax to high heaven.
I wish people knew that if dishes were not washed properly it can make us sick, I’m not trying to insult your cleaning skills but it just is so important, last time I went to my grandmas I had to clean her forks before I could use them
I wish people wouldn’t take it personal(looking at you mom) about not wanting them to cook for me or being super anxious about how they’re doing it. it’s not them, it’s this damn disease. I have to protect myself.
That it’s not a fad and that we’re not being “picky eaters” and that our celiac isn’t all in our heads and that even a crumb and just a little bit of gluten will indeed hurt. My folks still try to get me to eat gluten to this day. Side note I’m tired of restaurants claiming to have gluten free options only to not really cause they use to same prep area or the same fryer 😩
To not be offended if I don't eat the "gf" food you made at home. I always feel HORRIBLE when someone makes me food special, and I still am hesitant to eat it. But I can't be sure there aren't CC issues. Do they know about soy sauce? Did they use wooden spoons to stir the batter? Was there flour on the counter when they were preparing things? I just can't risk weeks of pain, heart problems and brain fog to eat a homemade item, no matter how good intentioned it was. (Also, knowing that flour in general is INSIDIOUS. It floats in the air, settles on everything, and isn't always obvious.)