Anyone here NOT take precautions against cross-contamination?

[u/killinnnmesmallz]

Let me preface by saying that I know cross-contamination is dangerous and I need to eliminate it in order to fully heal. That's a risk I'm very aware of and trying to balance against other important factors.

The nature of my work is very social and requires dining out with clients several times a week and lots of international travel. I know that despite my best precautions, cross-contamination is going to happen and probably fairly often. I would rather have a little "tolerance" in my system so that I'm not getting horrendously sick everytime it happens. Getting sick on a work trip means I lose the income.

Has anyone else made a similar decision to not try to eliminate cross-contamination? If so, how has it worked out for you?

EDIT: I'm looking for genuinely constructive feedback, not just to be told that I'm harming myself. I know that already.

EDIT 2: I should explain what I mean by "tolerance" here. The stricter I am with the diet, the more symptoms I experience if I do eat gluten. I know that's likely because my gut is more healed and that makes the reaction more noticeable.

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[u/jennlody]

I used to be more flexible and go to restaurants that definitely had cross contamination, I ate mcdonalds fries, basically if it didn't make me obviously sick I'd keep going back and would skip the "I have celiac" conversations. This was when I was 18-20, 10+ years ago now.

My reactions started getting worse and worse as it went on. My headaches last longer, I'm no longer just nauseous but I will throw up everything I eat for days, I get constipated for weeks after and it's painful. I had to do a full elimination diet and cut out any eating out for months to get back to an okay spot. I have symptoms that just won't go away and fear it was damage done from those years of not caring. I'll say I definitely regret it but that's just me.

[u/signalssoldier]

I also don't take cross contamination as seriously as most regular posters here and also in the glutenfree subreddit. I am well aware of the science and health impacts of this decision, but I knowingly assume the risks. I used to be totally asymptomatic but think over time I've developed into a mild symptomatic person (biggest thing is brain fog).

This is what works for me:

• fully gluten free household
• never knowingly eat anything with gluten containing ingredient
• prioritize restaurants with EITHER a marked GF menu, or where the cuisine is primarily naturally GF
• okay assuming risk with CC unless it's egregious

Some examples - I eat at a chipotle/cava/sweetgreen/chick fil a without any concern. Occasionally a taco bell even though that's a little more sus for me but I'll do it. Almost any Indian or Mexican place I'll eat at just ensuring no bread and no flour tortilla. I'll eat at a diner and get naturally GF breakfast food, etc.

The biggest change I've made on my journey is not eating big-chain "token" gluten free food. So like IHOP GF pancakes, or a GF pizza from dominoes. There's just no way that those aren't almost always being handled with a huge amount of gluten everywhere.

Additionally, and I've said this before either on this subreddit or maybe the GF one. I totally understand why some people are so passionate about trying to educate Celiac peeps to essentially become bubble boy regarding gluten. Yes that is the only "true" way, the "minmax" way. And a lot of people who are symptomatic can immediately feel like dogshit and totally reinforces following the most strict precautions possible.

That being said, there is literally so many things in life people assume risk over, it's just a matter of it being an educated decision or not. I don't drink alcohol. People drink alcohol regularly knowing the horrible health outcomes it has for you. Same with sugar or high calorie diet, gaining weight, smoking or vaping, all the comorbidities that come with that. Older generations just existing with lead in the paint or asbestos in stuff. Some people never exercise or stretch, or don't hydrate enough.

All of these things exist on a spectrum of course, I'm not saying a celiac occasionally eating CC gluten is the same as someone who just needs a little more water each day. But there are assuredly "normal" things that "normal" people do everyday that have a higher risk of messing up your life than occasionally CC, and people treat them like adults. It's one thing if someone is misinformed and is making an uneducated choice, I'd definitely advocate for people knowing all the risks of a choice before making it. But if you do, I mean, you only got one life lol.

[u/Santasreject → u/signalssoldier]

Frankly this is likely how the vast majority of celiacs actually live their life. This sub is absolutely not representative of the average celiac.

Frankly the science shows that average compliance with GF diets by celiacs takes care of any risks that diet change is going to affect.

I’m pretty similar but may use a little more caution on restaurants at least just judging if they are decent at cross contact prevention or not, and wouldn’t eat a Taco Bell, but I had CFA last night. But we are people in a much similar risk avoidance bracket that would make many here clutch their pearls

I also never have avoided flavoring, colors, yeast extract, etc. in the US they are not items that we need to worry about despite the constant claim being thrown around here. Hell even the celiac groups blatantly ignore the actual regs when they claim what can be put in flavorings and literally say all sorts of things can be hidden when the regs explicitly forbid it.

[u/clarinettingaway → u/Santasreject]

I would caution on flavoring because I have reacted to more than one product with flavorings. Trying a product with natural flavorings has to be an educated risk for me (US based)

[u/Santasreject → u/clarinettingaway]

I spent about a decade working with food flavorings in the US and got access to the proprietary formulations from multiple major flavor houses. Not a single one had anything even remotely concerning for any allergen except maybe two flavorings that called out peanut, and I was dealing with in the range of 500-800 complex flavoring mixtures.

Natural and artificial flavorings really are not chemically different. The main difference is where the compounds were sourced from. Flavor chemists will use pure compounds as much as possible because they are more predictable. The only difference there is that natural ones are extracted from plant, animal, or enzymatic reactions (and are distilled to purify them); artificial ones are just synthesized in a lab. Certain ingredients you really cannot create so they use natural extractions always (things like citrus oils, floral extracts, cinnamon oleoresin, etc) but the vast majority of compounds are pure individual compounds going in.

Secondly the flavoring concentrates are VERY low concentrations relatively because if you go too high things will crystallize out. Most complex flavorings are 2-3% in a carrier (water, alcohol, propylene glycol, etc) and then that mixture is used at very low percentages in the final product (0.5-2%). So basically, short of them putting straight flour in as the main ingredient (which is not allowed under the FDA laws) you won’t be getting gluten from the flavorings. People love to claim that malt can be hidden in “natural flavorings” but if you read past the first part of the regs everyone loves to quote you will see that malt is not allowed to be hidden there and must be declared by its common name.

I’m not disputing that you’ve had reactions to products, but them being due to gluten hidden in flavorings is the absolute least likely cause.

[u/clarinettingaway → u/Santasreject]

This is interesting to hear from someone in the business. I’ve mostly read about (and experienced) barley being used in natural flavorings, especially for smoke flavors. Is that not accurate in your experience?

[u/Santasreject → u/clarinettingaway]

I was working with liquid flavorings primarily. But barley malt used in flavorings must be declared per 21CFR101.22(h)7.

Secondly grains as a whole do not contribute to the flavor so their primary purpose is never going to be flavoring which is the first requirement to have something grouped under “flavor”.

If you’re reacting to smoke flavors, I would seriously consider a reaction to the woods that are being used to produce the smoke or something like histamine intolerance.

[u/clarinettingaway → u/Santasreject]

Thank you for the info stranger!

[u/Infamous_Island_8418 → u/signalssoldier]

Such a great point about the other risks that people take every single day that are arguably “worse” than a little cross contamination. Yet when you come onto this sub people will berate you for not taking the diet seriously enough. We’re all adults. We can be educated on what the risks are and then make our own decisions about how to handle that. I’m much more likely to die in a car crash, but I still drive everyday.

[u/matteocom → u/signalssoldier]

My god the relief of finally reading an honest take on this sub Reddit! I'm much the same as you, and like OP, I do often travel for work. I will always order something gluten free at a restaurant and let the staff know, but I don't (and can't reasonably be expected to) worry about every risk of being cross contaminated. When I'm home, strictly GF. Sometimes you read posts on this sub Reddit that really make me think I'm a complete idiot for not living my life in a gluten free clean room...

[u/JaziTricks → u/signalssoldier]

Well said.

Additionally, not all celiacs have the same sensitivity and reaction levels.

This is another statement that can trigger the purists. But there are studies showing this.

[u/Santasreject → u/JaziTricks]

This.

And the documented levels for even the most sensitive celiacs are much higher than many people like to claim.

I don’t discredit that people have symptoms but I strongly question that many of the reports that seem questionable are from gluten. I spent years after I was diagnosed blaming “hidden gluten” before finding out I was actually reacting to other things as well. Once I addressed those issues I magically stopped “getting glutened” randomly.

[u/mysaddestaccount → u/Santasreject]

How did you find out what the other things were jw??

[u/Santasreject → u/mysaddestaccount]

It’s controversial, but I’ve gone to chiropractors that do applied kinesiology. It’s very weird but the results I’ve gotten have been outstanding. Been using a lady for just over a year now and I’ve resolved so many issues I’ve been dealing with for years now. Beyond subjective results as well my HR is lower, my HVR has tended up consistently over the year, and my sleep time and quality have improved.

[u/ArdryanaStahr → u/Santasreject]

That's another thing reddit loves to hate on, but I feel better than I have in years (literally since my 20s I've had issues with my L4), and my newest chiro is the only person who was able to help me. Everyone else said the damage was permanent (even other chiros). I've looked at the studies, and the science simply doesn't back the hate they get. /shrug/

[u/Santasreject → u/ArdryanaStahr]

Yeah I see a lot of that to acupuncture too, people keep pointing to select studies that claim there’s no benefit despite the fact that you have studies that show measurable benefit and even have MD’s practicing it some times. Hell my primary care is a DO and does manipulations for patients.

[u/ArdryanaStahr → u/Santasreject]

Yeah, I was a bit skeptical of acupuncture, too, when I first heard of it, but a friend has been going regularly and it's helped a lot with his chronic pain, and it's the only thing that has helped.

[u/Santasreject → u/ArdryanaStahr]

Yeah o had decent luck, my main issue was that my underlying causes couldn’t really be addressed with it but it was helping my pain for sure.

Funny enough it just came out that another system was discovered in the body that seems to follow the TCM layout of meridians.

[u/ArdryanaStahr → u/Santasreject]

Oh, man, that's the worst. At least it helped with the pain. That's really cool. I'll have to look into that! I am fascinated by stuff like that. Thank you! =)

[u/UnicornStatistician → u/JaziTricks]

When starting my celiac journey I was as far from a purist as you could get. I literally tried every cheat code out there. These days, I will eat at restaurants that are not dedicated GF but do have a reputation for being celiac aware.

Ordering GF food from places that really have no idea has caused me significant issues resulting in regretting my life choices - hours spent in the bathroom, endless trips to a store to get antihistamines, and days feeling like a truck ran over me.

I would literally love to be less diligent but I end up paying some pretty steep prices when I make poor decisions.

[u/JaziTricks → u/UnicornStatistician]

Yep. Being diligent about celiac is generally the way.

"Take it easy" isn't right.

My comment was merely that not everyone had the same level of sensitivity and damage from minor stuff. And like you said eating in reputable GF places without going fully fearful has worked for you.

Happy you found the balance. This is such an annoying illness to handle! ❤️

[u/ExaminationFirm6379 → u/JaziTricks]

That claim about damage from "minor stuff" requires proof.

[u/ExaminationFirm6379 → u/JaziTricks]

Except for sensitivity/reactivity does not equal damage or no damage. The damage is the same across sensitivity levels

[u/JaziTricks → u/ExaminationFirm6379]

This claim needs substantiation.

A softer claim is "don't confidently infer a lack of damage from lack of symptoms". Definitely true.

But generally, symptoms correlate with damage. So "I'm less sensitive" should likely imply "I'm getting less damage".

Sure, would love to see high quality studies quantifying this.

[u/ExaminationFirm6379 → u/JaziTricks]

Making a statement like "not all celiacs have the same sensitivity and reaction levels" is dangerous because people are going to read that and think that if they have no symptoms then they're going to be fine to CC or perhaps even raw gluten depending on their reaction to it.

That's why I felt the need to interrupt and add that comment. What you said lacks nuance. What IS true is some celiacs have no symptoms and some have severe symptoms and there's a spectrum in-between. That would have been a better thing to say.

There is no evidence that if you have no symptoms when eating gluten that the damage is not the same.

I don't appreciate you trying to correct me and then making another statement like " generally symptoms correlate with damage". That's a very incorrect statement and it's extremely dangerous as well. I'm a completely asymptomatic celiac, so I should know. Please do your research on asymptomatic celiacs.

[u/Legitimate_Chair5110 → u/ExaminationFirm6379]

Maybe, rather than “the damage is the same” stating something along the lines of the potential for damage being the same would be more accurate.

[u/ExaminationFirm6379 → u/Legitimate_Chair5110]

No. Jesus. Your statement is only correct if tailored towards celiacs who are already known to be symptomatic, which you didn't specify. As an asymptotic celiac I'm telling you the damage IS THE SAME as yours would be if I ate gluten and I never have symptoms. My blood markers were above testing limits and endoscopy proved it. I don't like how this thread is forgetting the silent celiac.

If you're symptomatic at baseline and eat something contaminated on purpose and don't get symptoms you're gambling. That's the truth. There is no way to know if your body launched a reaction unless you immediately get a blood test followed by endoscopy. For a disease this serious, and as an RN, I would always lean towards asking people to consider the worst of the options. Assume that damage will occur if you eat gluten or contaminated food regardless of symptoms, ESPECIALLY as we know that a large subportion of the community experiences no symptoms at all, ever.

[u/myeyesarecircles94 → u/signalssoldier]

Wow, you’re my celiac twin. For what it’s worth, I had another endoscopy after 10+ years of living this way (for other reasons) but they took another biopsy anyway to make sure I didn’t have refractory celiac and they said I must have been doing an incredible gf job because my villae looked great.

[u/raspberryrubaeus → u/signalssoldier]

I’m only ~2.5 years in but this is pretty similar to how I live my life and a refreshing take to see.
My labs look great and I’ve maintained some quality of life while taking educated risks when necessary. A lot of these groups scared me at first and then I started reading from peer reviewed journals, understanding the nuances of labels etc., and got a lot better at making decisions that work for me and my health.

[u/ADashery → u/signalssoldier]

I’ve had celiac my whole life and this is basically exactly how i live too

I am symptomic and it’s been working fine thus far. Whenever I’ve had my antibodies re checked they always come back negative so I take that to mean that even if I’m getting a tiny amount of gluten through cross contamination occasionally at a restaurant, it’s not enough to produce my autoimmune response. The last time I had a true celiac reaction. was when I accidentally took melatonin with wheat three days in a row.

[u/Bridey93 → u/signalssoldier]

You make me feel more sane. I (nearly exactly) follow the same rules- there are one or two things in my household that aren't, but they're kept separate and rarely used. I choose only restaurants that are known to be able to accommodate GF (either naturally or a marked menu). I will say, I don't usually risk places that have a language barrier from me, it's not worth the risk. But I don't judge you for it. I don't risk Taco Bell, but when absolutely necessary, I'll get hash browns and a hash brown bowl with an allergy mark on it at CFA.

Those are my "I'll risk cc"- very minimal risk, but still probably pretty safe.

[u/bookleaf12 → u/signalssoldier]

This describes what I do almost exactly! I am aware that it’s not perfect and introduces risk. But probably 98% of the food I eat is perfectly cc-free and I accept the risk about the rest. I’m also lucky to not have any symptoms so it’s not about a “tolerance” for me, more about ability to live my life and not be crippled by anxiety. Also fwiw, this is the approach I took right out the gate from getting diagnosed and when I had my follow-up endoscopy 9 months later I was completely healed. Is there maybe sub-microscopic damage they can’t see that’s happening because of occasional cc? Maybe, but again to me it is worth the trade off.

[u/Relative-Bake6713 → u/signalssoldier]

The funniest part is if you move a little bit over to the no lactose crowd they’re all like “I’ll give myself a migraine and the shits for a DQ blizzard idc” 😂 (yes I am one of them)

[u/signalssoldier → u/Relative-Bake6713]

Yeah for sure, if I was just "gluten intolerant" vs actual celiac, my ass would definitely accept some blowout symptoms once in awhile to absolutely dog a stuffed crust pizza, crunchy baguette, or many of the other foods I miss from pre-diagnosis.

[u/Relative-Bake6713 → u/signalssoldier]

I didn’t say lactose intolerant, I said no lactose. Some people do have a full lactose allergy

[u/Dcamp → u/signalssoldier]

Best comment in this subreddit in a long time.

I respect everyone’s decision in how they manage celiac, but I do think this subreddit is very much dominated by the strictest, monk-like adherers to a gf diet.

I’m slightly more conservative than you (don’t eat at Taco Bell hah) but follow a similar approach to eating out. For me it works and so far my celiac is well managed.

About 95% of my meals are eaten from our house which is 100% gluten free, but to me eating out is an important outlet for me socially and I choose to take calculated risks to live a relatively normal life.

[u/pissdice → u/signalssoldier]

I really wish I could have a fully gf house :/ ive been glutened so many times just because someone else couldnt wash up after themselves properly

[u/MikeClimbsDC → u/signalssoldier]

Yeah this is what I do, sans full gf household. My wife and kiddos still eat gluten, but we have separate cutting boards, separate foods that we would possibly double dip in, and take cross contamination pretty seriously.

Out in the world depending on the cuisine I’ll take more of a risk, but generally ask serious questions about CC and every once in a while opt out eating if it’s too sus for me.

[u/anonymousmouse9786 → u/signalssoldier]

I’m with you, I literally could’ve written this comment! And really, my yearly blood tests are unconcerned and my last year’s endoscopy was clear. I fully believe we all have different levels of risk tolerance and for some people, what you’ve described is really an acceptable way to be gf without going insane.

[u/Razzmatazz1919 → u/signalssoldier]

I’m the same exact way. I’ll eat cereals that don’t have gluten in them directly but aren’t labeled GF due to CC and things like that. My bloodwork has always come back as normal despite these things. I don’t have a reaction from this amount of CC so it works for me.

[u/SillyRelationship195 → u/signalssoldier]

Gf pizza from restaurants was one of the hardest things for me to give up and also the most impactful. Unless they have a separate oven and space, the flour is everywhere. I used to eat one a week for years lol yikes

[u/unfortunately2nd → u/signalssoldier]

I'm curious what you eat at Taco Bell. My wife follows the same rules as you and she does occasionally eat Taco Bell. The only thing she eats though is the Chicken Cantina tacos. I'm not aware of anything else marked without gluten. Though I agree that's a big risk.

[u/signalssoldier → u/unfortunately2nd]

Literally just the hard shell basic cheap tacos, and probably chips and queso. It's only really ever if I'm out really late at night and nothing else is open or around, maybe single digit number of times a year.

[u/unfortunately2nd → u/signalssoldier]

Just a heads up and you may know. The beef has oats the slow roasted chicken does not.

[u/ExactSuggestion3428 → u/unfortunately2nd]

Taco Bell isn't a great choice IMHO. While I personally think most fast food isn't the best, at least something like Chipotle you can probably do ok if you're willing to get them to get new bins, change gloves AND it's a good location.

But... TB has gluten in almost all of its food menu items. The ground beef has non-GF oats in it for example. The chicken cantina taco is listed on their website as having no gluten ingredients, but it is one of the few items. I can't access the US allergen info chart easily but the Canada site has basically everything containing gluten ingredients except the chicken cantina stuff and some of the veggie things. Even many of the sauces/dips are fucked lol.

[u/Legitimate_Chair5110 → u/signalssoldier]

Oddly enough, what you describe is more strict than most celiacs that I have come across in any social media platform including a few very large groups that I adminned intensively for a few years. I am also in the GF household group but I would say that there are more celiacs living in mixed households than in fully GF households if not living alone.

[u/Dry-Faithlessness655 → u/signalssoldier]

My daughter is GF for nearly 20 years and reads all the labels and has a science degree.
if something says may contain gluten she’ll say it’s one part per million and decide whether it’s safe to eat,

[u/Constant-Barnacle-35 → u/signalssoldier]

I just got diagnosed and I’m also asymptomatic. Do you think starting the GF diet is what changed you into mild symptomatic? Or was it something else? I’d really appreciate an insight on this. Thanks!

[u/ADashery → u/Constant-Barnacle-35]

Everyone is different but generally the more you adhere to the diet the less your reaction is. As someone who was diagnosed as a kid, this  got me in trouble in college because I thought since I didn’t have symptoms I could get away with eating gluten every once in awhile. But over time my reaction got worse and worse and I had to get back on the band wagon. Now I have almost no reaction to cross contamination . Once, a restaurant gave me regular bread ones and I took a bite and just had a small headache the next day. But I definitely couldn’t eat a whole piece of regular pizza or anything without a reaction.

[u/Cool_Dinner3003 → u/Constant-Barnacle-35]

I was asymptomatic when I was diagnosed 3 years ago. The longer I am gluten-free, the more severe my symptoms. Now, I will start throwing up about 3 hours after cross-contamination.

[u/livebeautifully20 → u/Constant-Barnacle-35]

Diagnosed one year ago, and I was completely asymptomatic. Still am. I wish I could get a trigger to know if I'm eating correctly. Sigh.

[u/signalssoldier → u/Constant-Barnacle-35]

I honestly have no idea and people who say they do are probably at best making an educated guess. I would wager there is some truth to the notion that the longer you are GF, when gluten is introduced back in, it can hit different/harder. But everyone is different, I mean part of it could be psychosomatic, part of it could be people have different comorbird things happening, or an undiagnosed additional thing that overlaps in symptoms. Like for example I've seen some people say they get a regular reactions from certified gluten free oats. I'm like, at that point, you probably just have an oat intolerance, don't blame gluten lol.

[u/Santasreject → u/Constant-Barnacle-35]

Frankly I suspect that many “asymptomatic” people are just used to their mild symptoms and have stopped noticing them.

I can tell you every time in my life I have been able to work through a health issue I start noticing returning symptoms much earlier and more obviously because they had become my normal for a while and not they weren’t.

[u/anthrocenekid → u/Santasreject]

People say they’re asymptomatic and then proceed to describe a laundry list of non-GI symptoms.

[u/Legitimate_Chair5110 → u/Santasreject]

This is exactly what I was going to say. I had chronic gnawing hip pain that did not affect my movement much but was incredibly distracting and since I have an incredibly high pain tolerance (medically documented) I imagine that it would have been hellacious for most people, a variety of mildish and worse neurological issues (eg random bouts of mild aphasia), and weird hair chaos all of which was either almost totally chronic or so frequent with no obvious association with any trigger aside from weather or other random culprits. This was while I was nearly completely GF due to adhering to a Low FODMAP diet but with an extra strict take on any ingredients with the FODMAPs in gluten containing grains so for a long period only not avoiding CC and then at some point occasionally allowing a touch of normal soy sauce or a sushi roll with a tempura component every few months. The only symptom that I had ever directly associated with wheat specifically was nearly two decades prior to this time period and that was during the 90s when gorgeous whole wheat bread was served at every good restaurant in the US and I had moved to a historically hippie lifestyle area so had switched to whole wheat for sandwiches made at home until I realized that I was practically passing out after even one slice of the stuff like seriously just about the same feeling as being gonzo if ever having too much to drink. I had serious GI issues at the time requiring colonoscopy but never given an endoscopy and had the incomplete/inaccurate blood tests given at the time. My GI specialist was actually a lecturer at a major university so should have been knowledgeable but told me that y reaction to whole wheat was impossible when, reality, it was like clockwork and witnessed by others. Because of all of the above and because I was pretty certain that I had been told that they were including genetic testing with the labs early on so was under the impression until reviewing my records with a neurologist decades later that I was negative on genetic testing I had been vacillating between a nagging suspicion and being in denial that CD was even a possibility even when that neurologist suggested that we run the genetic testing based on my own medical history. Once I was strictly GF so much just went away.

[u/jokass149 → u/signalssoldier]

This is 100% me and you articulated it better than I ever have been able to, even to myself. I’ve never “cheated” in 6 years since diagnosis, only eat at restaurants that have some gf reviews or a confident staff, and I fully accept that eating at those restaurants comes with some small risks. I was undiagnosed for many years and my gut fully healed, confirmed by biopsy. I have a celiac panel done yearly and it’s always clean.

So I’m gonna have an occasional Daura, I’m gonna eat gf food prepared by knowledgeable friends, I’m not gonna ask my wife if she’s brushed her teeth every time I kiss her… and I in no way judge anyone who wants or needs to be more or less strict than this!

[u/Soft-Asparagus4546 → u/signalssoldier]

This literally perfectly summed up my approach almost exactly wow

[u/Soft-Asparagus4546 → u/Soft-Asparagus4546]

Also, when I was so so so so strict, I wasn’t eating enough. Developed severe anxiety around food. I don’t knowingly eat gluten ever, but I take risks when I feel like I’ve done my best advocating for my needs but knowing ultimately it’s out of my hands. I now eat a healthy amount and am a healthy weight and less anxious around food which helps my physical and mental health over all. So that’s the trade off I try to make even though sometimes it’s still hard

[u/Fickle_Flatworm_3928]

I used to be exactly where you're at, had a job that basically revolved around client dinners and couldn't exactly whip out my own tupperware at a michelin star place without killing the deal. I kept a little gluten in my system on purpose for about two years, just enough that a stray crumb wouldn't wreck me for three days

it worked in the sense that I didn't lose my job and only got the mild brain fog instead of the full-body shutdown. the trade-off nobody talks about is the slow burn damage though, my iron levels tanked and my dentist was the one who finally connected the dots after my enamel started going weird

you're making a calculated choice and I respect that, just know the math changes on you over time. maybe schedule a blood panel every six months if you're gonna ride this line, catching the vitamin stuff early saved my ass

[u/tupiao]

I ate the way you describe for years as I currently live in a country where celiac disease is genuinely unheard of. For probably 7-8 years I was fine. Occasionally I would get a little sick, but nothing I couldn't manage. But eventually, my symptoms started to become worse, and would last longer. And eventually one time when I was cross-contaminated, the reaction I had was so bad I felt like I was dying. I was at work and had to leave early and struggled to make it home on the subway (2 hours.) I had to start cooking literally everything I ate at home after that.

I can't say if it was my eating habits coming back to bite me in the ass or something else. But I did eventually reach a point where I couldn't keep risking it because the fallout suddenly became so much worse than it ever was before. I guess my point is, I understand what you mean about "tolerance", but it's not always something we can control or influence. It sometimes just suddenly changes. If you can handle the physical discomfort and want to risk it, for the sake of your career, that's your choice. But it may suddenly put you in the toilet for an hour in the middle of a client dinner, which is arguably worse than not eating anything at all and just having a drink.

[u/elizabethandsnek]

Honestly there’s times I’ve been fed up with the limitations and started to care less about CC. Every time it has ended with me getting sick (obviously) and re-realizing that is a dumb thing to do and isn’t worth it in the long run. I have never experienced a tolerance build up, it’s more just feeling mildly terrible constantly so it’s less noticeable that you’re continually poisoning yourself. I would recommend getting a drink and the absolute safest item on the menu (like a plain salad) if there is one and mentioning the celiac disease if they look at you funny or comment on it. Or better yet, take your clients to an activity that doesn’t involve eating if possible.

[u/Usual_Ice_186]

Hmm, not intentionally. However, I was repetitively receiving minor gluten contamination over the course of a month from a hospital's "celiac safe" menu items. It wasn't even enough to get me sick from individual contamination events. But rather than building tolerance, it absolutely tanked my ttg and and sent me back to the hospital shortly after for uncontrollably projectile vomiting and pooping blood. So, yeah, I don't know if it would work. Maybe you can pretend to eat, like cut up your food and move it around your plate if the place you're at has no hope of being safe. Or invest time in identifying a couple safe options in each city. It's not a great solution, I'm sorry.

[u/SrirachaPants]

Okay so I do know what you’re asking and I used to do this for years UNTIL my son got diagnosed. (Except “tolerance, idk what you’re talking about there bc I have never had a tolerance, just the degree of sickness might vary if I only eat a tiny bit).

Once he was diagnosed, I started asking all the time and being super careful. I would never want my son to suffer and get sick even a little bit, so why would I also be ok with that for myself?

People have food allergies all the time. Work trips happen and you do the best you can. I have been with people who are fasting for Ramadan, people with severe peanut allergies, who take care of themselves even on work trips. Sorry dude but I do know what you mean and I do not do it anymore.

[u/Infamous_Island_8418]

I’m much the same. I don’t intentionally eat gluten at all, but I’ll eat anything at a restaurant that is gluten free by ingredient, even if there’s a risk of cross contamination. It’s the level of risk I’m happy with for myself, and I’m lucky in a sense that I’m pretty much asymptomatic so risking cross contamination allows me to still live my life, travel, etc.

I know I’m still potentially damaging myself to an extent, but my antibody levels have come down still so I’m comfortable with what I’m doing.

[u/GeoffreyGeoffson → u/Infamous_Island_8418]

Me too!! Diagnosed since 2009.

Respect people who are super strict - but the attitudes on this sub are much stricter than the general population from my experience

[u/Infamous_Island_8418 → u/GeoffreyGeoffson]

Totally agree. If someone feels better/safer being super strict then good on them for doing that. But I think that’s just not the reality for most of us!

Also I’m glad to hear someone who’s been diagnosed for a while also takes this approach! I was only diagnosed 1.5 years ago but plan to keep this level of risk tolerance forever if I can

[u/Simplixt → u/Infamous_Island_8418]

Same for me.

You should also look at your mental health and quality of life. Developing paranoia or depression is just as bad for your life expectancy as celiac disease itself.

With no symtoms with cross-contamination and anitbody levels fine, I don't turn every restaurant visit into an interrogation of the whole staff. When the menu and the waiter states it's gluten free, that's enough. I don't need to speak the chef for their cross-contamination protocoll in the kitchen.

But I understand why people reacting more senstive have to act differently.

[u/Aiayame → u/Simplixt]

There's a huge difference between making choices that work for you and implying that someone else's precautions are excessive or detrimental to their mental health, aka "developing paranoia or depression is just as bad".

I'm glad you feel comfortable with your approach, but your experience isn't universal. Being more cautious doesn't automatically mean someone is paranoid or sacrificing their quality of life. I can prioritize my mental health while also taking the risks of cross-contamination seriously, as can anyone else.

I think that's the part of your comment that doesn't sit right with me. It feels less like acknowledging our different experiences and more like suggesting my approach is unhealthy simply because it's different from yours and slapping blanket paranoia. The understanding feels feigned.

[u/cunfabuloust → u/Aiayame]

I just want to chime in and to say I've seen posts and comments where people question and responses encourage questioning things like plain frozen veg. That every "may contain" is a high alert. That level of internal stress isn't good for very many people - where they back themselves into a corner so small that they question and have stress over simply vegetables. Where people post if chickens eat wheat you'll eat wheat from that chicken. Where they are being told they are killing themselves by taking any risk. That any reaction couldn't be another food intolerance or an upset tummy, but that they have failed and must be more strict. That they are causing irreparable harm to their children because doing everything they can is literally never enough. That there is certainly gluten everywhere and you MUST never eat out, never eat anything except certified, even if it's just plain frozen veg. 

I think it needs to be acknowledged that there are times and posts in this sub that people are working themselves into paranoia, being advised to exist in a high alert state, and it's often highly encouraged. 

[u/Aiayame → u/cunfabuloust]

I've seen the posts too. I'm not saying they don't exist. I'm not saying people in this subreddit haven't exhibited anxiety, paranoia or depression. I'm also not condoning false information "aka CC from chickens eating wheat", or "don't ever eat out". I'm simply saying that people can be concerned about CC and not be paranoid or depressed. It doesn't have to be a mental health issue to take precautions. I was simply pointing out there's a massive difference between acknowledging problems and implying that all people who take precautions for their health are mentally unwell. Just want to make sure we're not dismissing people or making them feel "less than" just because they're concerned and take CC precautions. People have different experiences, circumstances, and risk tolerances. Also, I've personally gotten sick from "plain frozen veg" due to undisclosed shared lines. So, my frozen and canned vegetables and fruit have "gf" on it. That doesn't make me "paranoid" or "high alert". I just prefer not being sick 🤷‍♀️

[u/Simplixt → u/Aiayame]

I'm not sure why you feel attacked. With “But I understand why people who are more sensitive have to act differently” I've acknowledging that. And if a more restrictive protocol needs to be used because reacting more sensitive, that's obviously no paranoia.

I'm just higlighting that depression and isolation are a danger with celiac disease that isn't discussed enough. And if you only spend time on celiac reddit and follow too many “celiac influencers” on social media, etc. ... this can also lead to unhealthy behaviors and reinforcement mechanisms.

I remember posts here on the forum where people said they no longer meet up with friends at restaurants because there might be gluten on the tables and doorknobs—even if they just order water.

[u/MinionKevin22 → u/Simplixt]

Imo there is no such thing as "more sensitive". I once had a restaurant ask me how sensitive I was because they wanted to know if they could put my gf bun on a shared grill. I set them straight.

I went undiagnosed for more than 15 years. I ate gluten because I " wasn't sensitive" . It was a fluke it was even discovered. Now 22 years later, my body is paying the price for not being able to alert me.

[u/Simplixt → u/MinionKevin22]

As you said yourself, there is a "more sensitive" in showing immediate symptoms.

Of course that dosen't mean there isn't any inflammatory reactions or reduction in villi.

[u/adorais → u/Simplixt]

I've always considered the immediate side effects symptomatic people a short term visible and unpleasant experience with no long term harm, vs the invisible inflammatory reaction & vilii destruction. Wondering if others see it the same way, or if im misunderstanding things... wdyt?

[u/Simplixt → u/adorais]

The open (and little-studied) question is what effect less cross-contamination caution has on your long term health.

Of course I'm 100% gluten free, but I'm following a less strict cross-contamination verification protocoll when visting restaurants, hotels etc.

I just can tell that my blood value, biopsy and iron/vitamins are 100% fine with my personal way of handling it.

But of course, for highly symptomatic people, that's not even a question, as the immediate side effects of cross-contamination are already ruining your days.

[u/Fumquat → u/Simplixt]

Being sick in bed instead of making it to later important events makes me depressed AF.

The unreliability and pain is way worse than any restrictions I observe.

So, yeah, I’m one of those who will hang at a restaurant and order bottled water in the original container. I don’t bother interrogating waitstaff because they really can’t know the choices and layout of the kitchen 100%.

[u/ExactSuggestion3428 → u/Fumquat]

Yeah, same. I think people overestimate the "paranoia" and depression involved. I think being uncertain is worse.

I am certain that I'm not eating out at a restaurant. It's already decided. I show up to meet people and order a drink. Either I bring food with me or have eaten before. There's no stress or anxiety because I know exactly what is going to happen and that I wont' get sick.

Conversely, I think a lot of celiacs who are trying to make "being normal" work for them get stressed because what if they show up at the restaurant and they ask the questions and the vibes are off? What if there's a noodle in their rice? Etc. I ain't worried about none of that.

[u/Infamous_Island_8418 → u/ExactSuggestion3428]

I think that’s the exact point that’s being made though. Mental health is an important factor that isn’t talked about enough, but it is personal for everyone. For myself, it’s important that I’m able to actually eat out at restaurants with friends. The anxiety and depression would occur (for me personally) if I could only go and order a drink. So we all make choices about risk that also prioritises our sanity

[u/Aiayame → u/Simplixt]

I don't feel attacked lol. I pointed out the part that didn't sit right with me.

[u/ExactSuggestion3428 → u/Aiayame]

Yeah... I used to be more chill about CC and it was very bad for my mental health because I felt too ill to participate in social events properly. So like, if a friend invited me camping I would be hesitant to go because I couldn't tell if I'd be feeling well enough to do so or would be worried about having to shit every 2 minutes. I couldn't participate in sports consistently either and that was a big part of my identity and social network.

Also since I get DH, the aesthetic of getting glutened is terrible for my self-esteem and impacts what clothes I can wear. Wearing long sleeves and pants in July isn't the best.

[u/killinnnmesmallz → u/Simplixt]

The mental health part is an aspect that's not talked about enough. I think that is ultimately what's hanging in the balance for me. I want to be able to live a "normal" life and join my clients for dinners. That's very important to me. I'm willing to accept the physical trade-offs for as long as they remain tolerable.

[u/Neandertard → u/Infamous_Island_8418]

Same. I eat out at restaurants all the time and very rarely get glutened - maybe once a year, if that. My last endoscopy and biopsy were all clear. I need to live, and food (and wine) are important to me. In my part of the world (capital city, Australia) high end restaurants are very good as managing coeliac and my trust level is high.

[u/throwaway_lolzz → u/Infamous_Island_8418]

Same here!

[u/Pasdeshat → u/Infamous_Island_8418]

I did this until I started having crazy reactions and developed mcas lol. So I recommend being strict.

[u/Infamous_Island_8418 → u/Pasdeshat]

I’m sorry that was your experience. I think it’s important to note that that is rare though and can be caused by many things (not just being less strict about coeliac), and so I’m not personally changing my entire life around what I perceive to be a very small risk

[u/Pasdeshat → u/Infamous_Island_8418]

I’m not telling you to change, just that it happened to me and is a possibility. Good luck

[u/ElephantUndertheRug]

So not me, but a sibling of mine

They were diagnosed over 20 years ago at this point, back when CC wasn't as well understood or talked about. We're night and day with how we manage eating out, where we eat, etc. They take risks I never would, eat at restaurants I wouldn't touch, and generally are confused and surprised when I discuss my caution re: cross contamination. They are also sick on an alarmingly regular basis, suffer a lot of chronic and painful comorbidities, and are in a CONSTANT state of GI distress (diarhhea every day multiple times a day), whereas I am completely symptom-free (unless of course my toddler glutens me - death by Cheez Its lmao).

Make of that what you will. I'm no doctor, but I'd say that's probably not a coincidence :/

Someone on here once said that you have to compare eating gluten to rat poison: sure, that tiny little bit you ingested won't kill you. By why TF would you keep eating it knowing someday it might?

Honestly OP I get that you feel like you have to do this for the sake of your job (and in this economy, I don't blame you for not wanting to risk your position either!). But I'd ask- do you REALLY have to? If you simply said to your clients "I have an autoimmune disorder that requires a strict medically restricted diet" and moved on, would that really be enough to tank your deal? Personally, to me, if you think the answer is yes, that sounds like you're dealing with a lot of rather sh!tty people >.<

[u/ExactSuggestion3428 → u/ElephantUndertheRug]

Yeah, or you can also choose "better bet" restaurants. While I don't eat out myself, when I used to it wasn't like I got sick every time. Some of the mixed places I dined at clearly did take it seriously when I informed them I had celiac. They were places that had good reviews on Find Me GF and that had a decent reputation in the local celiac community.

There's a big difference between dining at places like that and just picking a random restaurant and hoping for the best, especially if dining out is a regular thing. If hosting clients you can usually direct where the place is. I have done this as well.

[u/Dumb-Brain92]

Me! And I’m not afraid to say it. I don’t knowingly eat gluten, I voice my gluten allergy at restaurants, I don’t eat fries in a shared fryer. BUT I am going to live my life. Cross contact is obviously very real, but the science of cross contact isn’t conclusive in ways people say it is. It is recommended to strictly avoid gluten and all cross contact possible BECAUSE the science and the studies don’t have all the answers. And every person is different. And the threshold is different for everyone.
I personally have celiac and MS. I have those things helping define my life for me. So while I will take a lot of precautions, I refuse to live in a safety bubble, because I’ve only got this one life.

[u/LoganMav23]

Im kind of in your boat. Literally in Japan now for work and its so difficult because even if you try hard to find a spot it still will likely have cross contamination. I juat make the decision to bring food on trips or not eat at the dinners. Even at home I have 2 young kids and cross contamination is extremely difficult to control even at places like Chipotle or something. This is probably one of the shittiest diseases because its not immediately lethal but shitty enough your feel like crap when you get Glutened. I am also fairly asymptomatic in that, I only really get diarrhea and its not even that bad. So I have no idea of how much cross contamination is affecting me, even though last time I got my numbers I was good. And within yhe normal ranges. So i am right there with you on this one, sometimes I just have to accept the inevitable, that i will likely get Glutened just by how much.

[u/Loves_Eating_Lead]

I have an eating disorder, i got to balance keeping those voices quiet while also being careful with gluten. So i am not as strict as i should be, its a continual balancing act and i totally get where you come from. I be as strict as i can within my circumstance and not judge others if they can't be strict either.

[u/Coffee4Joey]

I just don't understand that if a job is so important that dining out with clients and traveling internationally is a constant, how is OP not "worthy" enough to be able to eat safely? Like: plan ahead (as these things no doubt require.) Whoever is buying all these airline tickets can do the research to have celiac safe restaurants. If that's not possible then planning ahead means OP eats hard boiled eggs and keeps safe snacks on hand, and doesn't eat unsafe things when dining out in unsafe places.

I just can't with the hiding of food safety issues and "pretending" it's ok to eat unsafe things lest you offend someone in the business world. No other condition plays this game. You can be discreet so it's not anyone's business, but learn to advocate for yourself and rehearse phrases if necessary. That's applicable to people with family members who are weird about people eating too. Learn from people who have the inability to drink alcohol socially: they know what to say so they're abstaining isn't the focus of the social gathering.

[u/ExactSuggestion3428 → u/Coffee4Joey]

Yeah, also if OP is being flown around by their employer and meeting clients, I'd imagine they are mostly eating at "fancier" type places that are more willing to take accommodations seriously, or could direct meetings to such places. What international travel implies depends a lot on the country, but again a lot of business people get put up in very westernized hotels that could probably manage reasonably safe food, especially if OP uses a translation card.

[u/Dry-Faithlessness655 → u/Coffee4Joey]

My GF daughter has been to Europe twice, Cambodia & Japan each three times, 12 cruises, America and going to New York in December and has never gone hungry.
Airports are the worse for GF.

[u/Legitimate_Chair5110 → u/Dry-Faithlessness655]

Airports can be difficult but there is often a safe option as long as travel is not an off hour. The find Me GF will have suggestions for safe options in many airports. That said, I usually try to travel with enough meals and snacks to get me through a flight and hotel/accommodations check-in because I do not do very well on highly processed foods especially when adding the stress on the body that travel creates. I will make something for the trip out and for the trip home, I will stop at one of the restaurants that I have had safe meals at and get takeout.

[u/killinnnmesmallz → u/Coffee4Joey]

Yeah, that is absolutely not the kind of life I want to live. And that's the point of my post really.

I very much enjoy my job and eating out. I'm happy to always order gluten free things and let the staff know I'm celiac, but anything more than that takes the joy out of these experiences. I don't want to be missing meals for hard boiled eggs, even if that means my health declines. I'd rather die at 45 then live my life always worrying whenever I have to eat.

I suppose this gives me my answer.

[u/holdthestrings → u/killinnnmesmallz]

I'm not gonna rehash what others have said on the merits of the risks and I'm not passing judgement either.

I just wanna point out that there's a huge middle ground before dying at 45. I think it's easy for us to frame it as "I'll either live or I'll die, c'est la vie" but the other possibility with living is we develop chronic health problems and be suffering for a long time.

as an anecdotal example, I know someone and the eventual malnutrition has taken a huge toll on them. fatigue (permanently low iron), constant pain & discomfort, hair loss, gauntness (skeleton face). they're not gonna die anytime soon but they're in agony and miserable.

and that might not happen to the rest of us! we may be totally fine! it's just an outcome to consider.

[u/Legitimate_Chair5110 → u/killinnnmesmallz]

And gastric cancer is an excruciating, awful way to die

[u/mckenzie0421]

I’m so jealous of all you asymptomatic folks, if I get cross contamination I’m immediately violently sick and will have the shits for days, so ya I’m pretty careful

[u/Lead-Forsaken]

I have ended up temporarily lactose intolerant due to mistakingly using a whiskey sauce with a tiny amount of gluten for a short period of time. Another time, I ended up with a fodmap issue. All I know is that aside from everything else, an unhappy gut can lead to more food restrictions. Not being able to eat a bunch of vegetables is a pain.

[u/chronicallygf]

You’re not “building tolerance” you’re pretty much just poisoning yourself constantly and not allowing your intestine to heal

[u/killinnnmesmallz → u/chronicallygf]

You know what I mean

[u/daisypunk99 → u/killinnnmesmallz]

No. I’m pretty sure you actually think it’s building some kind of tolerance. That’s not how this disease works.

[u/killinnnmesmallz → u/daisypunk99]

I love being told what I actually think by an internet stranger

[u/chronicallygf → u/killinnnmesmallz]

No I don’t know what you mean lol

[u/Awkward-Bird]

I just call ahead and make sure they’re aware 🤷‍♀️
Where I live, usually fancy places have some sort of solid allergy precautions in place.

[u/mbatet]

I genuinely hate the term "asymptomatic," because there’s so much more to this than just textbook celiac symptoms. I’ve been dealing with this for 10 years now, not as a celiac myself, but as the mom of a celiac kid. Her diagnosis caught us completely off guard, she never had rashes, stomach pain, nothing. The very first red flag was the intestinal damage on her biopsy. How did we end up getting one? Because even without obvious symptoms, as soon as she started solid food as a baby, she barely grew. We started running tests at age 1 yo, got the final diagnosis at 6 yo, and now, 10 years later, at sixteen, she’s still the shortest kid in her class, has totally flat hair, and chronically high cholesterol. Not to mention other things.... I don't know if they're related, but I’ll always wonder... "Social" struggles; I don’t know whether to call it anxiety, mild autism, or alexithymia. It’s nothing extreme at all, but SOMETHING is definitely there, she’s just not quite like the other kids. Her pediatric GI (a top reference for pediatric celiac disease in my area) has always believed it is connected, so we’ll always have that doubt. On the flip side, she’s never had an obvious reaction, and has "never been glutened" in over 10 years (not even the one time we messed up and she ate regular cookies). She’s strong, super athletic, competitive, and literally never catches a cold. I know another celiac (in my job) who is completely reckless. He "eat gluten-free" but never bother checking a single label (grabbing regular potato chips without even checking if they're labeled safe). Whenever I tell him to be careful, I’m called a buzzkill. And look, I get it—maybe he just don’t care anymore, he is late thirties early forties, married, have a kid, he is able not to care... But with my daughter, I’m not taking risks. I refuse to compromise her future with another autoimmune disease, infertility, or cancer. Maybe it’s easier to be careless when it’s your own body, and I know it sucks and is socially exhausting... but honestly, I’d much rather err on the side of caution.

That said, I know I'm a buzzkill, and I can understand OP and the rest who choose to have more freedom. I literally CAN understand. Maybe I just need to vent, but please, and especially for the poor souls who are new to this and trying to navigate it for the first time, let me be clear: ASYMPTOMATIC DOES NOT EQUAL NO DAMAGE. At least, please, understand that... the damage is still happening, it just comes down to what level of risk you are willing to take on. And as I said, I can understand.

[u/AprilPearl321 → u/mbatet]

Have you considered her stress level? A person in a chronic state of stress is in chronic fight or flight and is therefore, only focused on surviving....not thriving. Having tests run from the age of 1 to 6 sounds like it could possibly be traumatic for a child. I know from my own experience and I thought I'd mention it because you might not have thought of this. She needs laughter, fun, freedom, good food, and plenty of sunshine and water. She will grow, but she needs to have her nervous system calm down and she needs to feel safe to be able to do that. She needs to relax and have fun, plain and simple. ❤️

[u/SillyRelationship195]

I used to ignore the cross contamination thing. Then one day i was complaining about my bloating and fatigue and thought maybe I should try. My husband also decided he wouldnt eat gluten at home anymore.

Within 4 months I lost 2 pant sizes in bloating, learned that is IS possible to have normally formed poops regularly, my diet WAS healthy aside from the cross contamination for me, and that a lot of my pains and sick feelings were 100% because of fhe gluten, i had just been experiencing it for so long and it didnt cause an "attack" so I thought it was normal.al.

Its not. Cross contamination is damaging your organs whether you feel it or not. You are absolutely allowed to do what you want with your body and rhis was my experience eith my symptoms. Regardless of your symtpoms though, if you have celiac, cross contamination is damaging your organs and if you are lucky enough to live long enough, it will catch up with you.

Its a pain, but my personal experience tells me its absolutely worth it!!

[u/SillyRelationship195 → u/SillyRelationship195]

As for solutipns: I bring gf instant oatmeal packets, microwave gluten free Mac and cheese, protein bars, nuts, etc so that i have SOMETHING in a pinch. Most places can make you a salad safely.

I dont exclude every restaurant that covers their butt by saying it will have CC, but I look at reviews and in my local gf or celiac facebook page (I alsp join local ones for where im travelling). I was just in Victoria and ate at 3 places that werent considered celiac safe, but after talking with the kitchen abojt their protocols I felt very safe and had no reactions.

It 100% takes a lot of work, which is why I didnt do it for years. But its been life changing im ways I didnt know was possible!

For some more context, I was diagnosed at age 5 in 1998. So when I was in my teens and early 20s and was starting yo manage it alone, I stopped caring and got careless. I just dont want anyone else unnecessarily experiencing that too!

[u/seandelevan]

I just did…for the first time…albeit very slowly. For example….it was about a year ago, shortly after being diagnosed, I ventured out to my favorite local Mexican restaurant. I only ate the their chicken soup….it was just broth, rice, chicken, avocado, and some veggies. And that was the ONLY thing I ate at any restaurant for almost a year. Then not too long ago I began to look at their menu….they had a lot of dishes with rice, chicken, veggies….I ordered it. Was fine. I asked if they thicken their cheese with flour. They said no. Added that and I was fine. Then it occurred to me to ask about their corn tortillas. I avoided them thinking they were deep fried in a shared fryer. To my shock the waitress was like “ughhh these are out of a bag”🤣 I was depriving myself for a year when I could had simply asked. So that’s my advice. Ask. You never know.

[u/and_er]

You can't build a tolerance. Your body doesn't react less to what triggers an autoimmune condition; it reacts MORE. The damage is cumulative.

You can eat out safely. Have thorough conversations with the serving staff. And even before you get to the restaurant, advocate for yourself by finding places you can eat safely and communicate with your clients. I think the conundrum you're speaking of here is entirely avoidable if you take ownership of where you're going to be meeting them.

[u/parametricize]

You don’t need anyone else’s permission to live your life. You are an adult, but there are kids with Celiac who become teenagers and read this subreddit. I think it’s important for them to understand that the medical guidance is to avoid CC, and while the studies may not be plentiful, the safer thing to do is assume that sensitivity re: immediate symptoms does not equal sensitivity re: villi damage and proclivity towards more serious comorbidities.
I guess I appreciate that most people on this sub default to conversations about the safest choices. No doubt there is room for adults to take risks that they deem “worth it” for their own lives.

[u/thesnarkypotatohead]

As someone who was asymptomatic (undiagnosed) before I got about as sick as this disease can make you and lost damn near all quality of life for two years and almost straight up died:

There are no factors as important as your health. None. I understand the spot you’re in and why this feels like this is a reasonable position/compromise, I really do. But I will also die on the hill that you can only take that position cuz you haven’t experienced full loss of health and quality of life. I don’t want you to get there or know what that’s like. You’re not building up tolerance, you’re slowly eroding your small intestine’s ability to get you nutrients from your food.

Your body, your life, your choice. I sincerely hope you’re one of the lucky ones and this bill never comes due.

Edited to add: this probably sounded really stern, it’s just concern. I think you deserve better and wish you nothing but the best.

[u/Mr-Vemod → u/thesnarkypotatohead]

Two things here:

1. Studies are unclear on whether the attitude that OP has actually leads to worse histological outcomes. There have been large studies that show weak or no correlation between subjective strictness of a diet and intestinal damage.

2. Stress and isolation are arguably much more dangerous for your health than sporadic CC. Of course this depends on the individual, but if the mental and social cost of being extremely cautious is very high then it is not certain that the strict approach is better for your health in the long term.

[u/thesnarkypotatohead → u/Mr-Vemod]

My approach doesn’t stress me out, but I appreciate the concern! I think there’s a line between “constantly risking gluten exposures” and “social isolation and extreme stress”. As I said, it’s OP’s choice.

I totally get what you’re saying. I’m not saying you’re wrong - in that we absolutely have to find that line between taking care of ourselves and driving ourselves insane with stress. I don’t think that’s what’s on the line here though.

And it bears noting that cc (OP isn’t describing what they believe to be sporadic exposures - they specify they’re doing this multiple times a week) can and will eventually also destroy your mental health.

Edited to add: I can also personally attest that your physical body and health falling apart due to unchecked celiac is incredibly socially isolating and stressful. And if OP is frequently glutening themselves, then that’s the fire they’re playing with.

[u/SoSavv → u/Mr-Vemod]

Subjective strictness and objective strictness are not the same.

When study subjects have self reported adhering to what they believe is subjectively a strict GF diet, they can still experience unintentionally CC. We can't be 100% safe all the time. That's why studies show a disconnect between diet and intestinal damage.

But what OP is doing is objectively and intentionally glutening themselves. So, on top of the "phantom" CC they may experience in every day life, they are knowingly adding avoidable gluten on top of it.

I have no opinions on what OP is doing. But applying the logic of subjective self reported adherence to intentionally consuming gluten is not based in science.

[u/ExactSuggestion3428 → u/SoSavv]

Agree.

If you look at GIP studies, a pretty good chunk of celiacs can't stay below 50 mg/day if their life depended on it. In those studies they do usually also assess diet using validated scoring systems, bloods, biopsy, and subjective symptoms. As you say, often the folks who subjectively believe their diet is strict and who score well on the diet inventories have lots of gluten in their waste and sometimes also elevated serology/damage.

So clearly, those dietary surveys probably aren't capturing important nuance or the threshold for "high compliance" is set too low. Having looked at some of these surveys, the questions are basically like "how often do you eat gluten on purpose," and "do you read the ingredient list" type of thing, so it's not surprising that they fail to correlate with something that can detect compliance issues on a higher resolution basis than serology.

[u/Mr-Vemod → u/SoSavv]

That’s not really what I meant. There have been studies that show very little correlation in damage between groups of people who say they are relatively uncaring of CC and people who say they are. There are of course other confounding variables here, but the point is that the danger of occasional CC is far from settled.

[u/Yarn_moose → u/thesnarkypotatohead]

I 100% agree with you. (Edit: ted talk incoming lmao, sorry 😭) A job is not as important as your health, especially because a celiac continuing to eat gluten for an extended period of time can cause permanent damage to your body. For example, they risk the villi in their small intestine losing the ability to absorb nutrients from food. If it's bad enough, they'd become malnourished no matter how much they eat. It can cause a host of other serious health issues, too. It's unfortunately not optional for a celiac to completely avoid gluten to the best of their ability if they don't want to seriously fuck up their bodies. It's like poison.

I absolutely understand folks need to work to survive, and that it may also be crushing to give up something you love doing (if that's the case here). But you need to survive (/be healthy enough) to work, too. If you give yourself one or more serious, permanent health conditions because you kept glutening yourself for your job, you could eventually become disabled & unable to work, and then where would you be? I truly mean all of this with love, I'm not trying to be an asshole.

If you cannot make accomodations (for example, bring your own food to the restaurants and explain it's medically necessary bc of your celiac) necessary to protect your health, I would very, very seriously consider what you (meaning OP & the folks acting similarly) are willing to lose to keep doing what you're doing.

Is it truly worth potentially disabling yourself or causing lifelong chronic pain or other debilitating health issues? Do some in depth research on the effects of a celiac continuing to eat gluten long term, and pleaseeee do not take this decision lightly or based on convenience or preference. It is a very big deal. It might seem fine right now because you don't currently have severe symptoms, but it will not stay that way indefinitely. And by then, it might be too late to undo all of the damage you caused to your body.

I'm sorry for the whole damn ted talk lmao, I feel quite strongly about this & tend to overtype. Again, I really, truly mean all of this with love. I'm physically disabled (unrelated to celiac) and it fucking sucks. I would really hate to see someone disable themselves over this. I also gave myself permanent nerve damage (I have gluten neuropathy as well) bc I was too stubborn to go GF sooner, and it feels like I'm being fuckin electrocuted every time I get glutened now. I'll always regret not going fully GF much sooner.

[u/WatercressOk9933 → u/thesnarkypotatohead]

What exactly happened to you if I may ask?

[u/thesnarkypotatohead → u/WatercressOk9933]

The short answer is that advanced malnutrition is a horror show that slowly makes your entire body shut down.

The slightly longer answer is that my list of symptoms at that point was a mile long and they ranged from irritatingly unpleasant to life-destroying. At the end before I was diagnosed my heart was no longer functioning properly, and it landed me in the ER multiple times in the month before my endoscopy. (Nobody ever suggested celiac as a possibility, they were looking for GERD.)

And my nervous system was shot. I couldn’t leave my house because I was having panic attacks that made my entire body seize up and prevented me from breathing whenever I tried.

My doc thinks I had quiet celiac (not actually asymptomatic, but the symptoms were atypical, unremarkable and easy to brush off as minor/to live with. Low iron, gum inflammation/mild TMJ, things like that) for about 8 years before my awful symptoms started. That went on and just kept getting worse for two-ish years before I finally got diagnosed.

The really detailed answer is very, very long and a lot of it is either very dark or just really gross.

[u/WatercressOk9933 → u/thesnarkypotatohead]

I feel you. I was only diagnosed in May after having been sent to hospital, my blood results showing life threatening anaemia (I was on liquid iron for years but it was still going down).  I needed a blood transfusion and iron infusions. I'm still weak and I'm losing so much hair I may actually go bald.

Are you feeling better?

[u/thesnarkypotatohead → u/WatercressOk9933]

Yup! Everything resolved except my two pre-existing issues (insomnia and back pain, both of which are temporarily made far worse by gluten exposures) once I adopted the celiac diet after being diagnosed. It’s kinda wild.

It can get better. It took a couple of years for me to fully feel like myself again. Hang in there. 💜

[u/RainyMcBrainy]

It seems you're almost asking for permission rather than just doing what you want. There are all kinds of people with celiac disease. Plenty of people purposefully don't manage their disease correctly. You can be one of those people too, you don't need permission from the community. People would probably appreciate that if that's what you choose to do that you don't go telling everyone you have celiac disease and then engage in behaviors that are unsafe, that makes it more difficult for the community, but at the end of the day nobody can control what you do or how you present yourself.

People willingly engage in practices that are bad for them all the time. They smoke, drink, do drugs, don't exercise, never eat healthy food, etc etc. If you want your unhealthy thing to be gluten, so what? Other people smoke a pack a day. You're an adult and you know the risks. Just do what you want. Trying to justify yourself here will be unpopular and won't get you the answers you are looking for.

[u/killinnnmesmallz → u/RainyMcBrainy]

I'm not intending to ask permission. I'm genuinely asking people who have chosen this course what their experiences have been - has it been worth it, whether they have any surprises, etc.

[u/SignificantPomelo → u/killinnnmesmallz]

It's going to be hard to say if our experiences have any bearing on your own, since this disease manifests so uniquely in everyone. For instance, I don't really notice cross contamination, so when I went to Japan I decided to not worry about it and also fudge it a little for soy sauce if I had to. (I read some stuff saying that it's possible soy sauce is safe but we don't really know. The fermentation process breaks down the protein to where it's not detectable on the normal tests like ELISA. Some countries, I think Sweden, have even declared it safe officially -- but a LOT of people in this forum say they react to it, so I'm skeptical.) I still carried my own soy sauce and ate a lot of hard boiled eggs and bananas, but I didn't stress cross contamination and I did eat a little soy sauce a few times and felt ok. However! I got covid and neither of my travel companions did, so I have to wonder if my immune system was thrown off by my little experiment.

In every day life I do occasionally throw caution a bit to the wind with respect to cross contamination, but I try not to do it too often. I think it would be much tougher if I was traveling internationally a lot, meaning a good portion of my meals were at places that didn't really understand how to cook safely for celiacs.

Good luck! I hope you're able to find a good balance between being able to live and also staying healthy. I wonder if you could get yearly endoscopies to see how much damage you're actually doing?

[u/RainyMcBrainy → u/killinnnmesmallz]

What kind of response are you looking for? That'd be like going to an alcohol addiction sub and being like, "Hey, I know I struggle with alcoholism, but I'm going to drink again anyway, what do you recommend?" or a weight loss sub, "Hey, I know I struggle with obesity, but I'm going to stop exercising completely and eat fast food for every meal, what do you recommend?" Frankly, you should probably try posting somewhere with people who aren't medically trying to avoid gluten.

I don't want you to think I am coming at you or anything. I don't care how you live. I work night shift and that's super unhealthy, but there I am anyway. Most of us have something that's going to get us. But I wouldn't go posting asking for "advice" about how something I know is bad for me and making it seem like I am trying to get out of the consequences of my own actions or something. If you're going to do something bad for you, consequences likely follow. There's always the exceptions though like the man who smoked a pack a day since he was 12 and lived until 90 with no lung cancer or COPD. But we can't reasonably assume we will be the exception to anything.

[u/killinnnmesmallz → u/RainyMcBrainy]

The answers I've gotten, such as "I've not worried about cross contamination and in the beginning that was fine, but over time the reactions became worse so I can no longer ignore it" are what I'm looking for.

Again, not advice but rather people's experiences further down the line. I want to understand the risks more than "you'll have bowel damage." What does that look like day-to-day and at what point did the scales tip in cost vs benefit.

[u/RainyMcBrainy → u/killinnnmesmallz]

Well, elsewhere you said you'd be fine with dying at 45. My grandfather died from undiagnosed celiac disease (undiagnosed until the cancer happened) which was the likely cause of his bowel cancer which was his true cause of death. He lived until his early 60s though so nearly 20 years past your aspirations. Personally, I'd rather kill myself than die of bowel cancer. It's a terrible death. But to each their own. We'll see.

[u/stonedwithmybestie]

I get diarrhea

[u/menagerie_my_library]

Me and my family were all diagnosed 30 years ago and are so confused sometimes by how strict and weird it has become. Cheezits, Oreos and chicken nuggets though make up for it. Anyone here from the days of rice cakes, corn tortillas, and that ancient grain quinoa pasta?

[u/_MildlyCurious → u/menagerie_my_library]

Diagnosed 30 years ago too and we only had glutino lemon cookies, glutino bread (and it was disgusting) and rice crackers😛

[u/menagerie_my_library → u/_MildlyCurious]

In the early 2000s there was this brown rice bread it was super dense, you had to toast it. I haven't seen it in years but I kind of miss it - I always said if you don't think about the fact it should be bread it is good

[u/allisonasinasin]

That fact that you are choosing the comfort and convenience of your work clients over your personal health is kind of sad.

Your profile says you’re a dating coach so you’re not teaching people how to accommodate someone with allergies??

[u/killinnnmesmallz → u/allisonasinasin]

I was expecting judgment in the responses, but this is unfair.

I never said I was choosing the convenience of my work clients over my health. I said I work in a very social job that has me eating out often. My clients would be more than happy to accommodate me; it's me who doesn't want to have to worry and think ahead everytime I eat out somewhere. I love my job and I don't want to stop eating out. I also want these meals to be as low stress as possible.

I don't understand how making a personal decision can be equated to me telling my clients not to adhere to someone's medical needs. That's simply not true.

[u/SillyRelationship195 → u/killinnnmesmallz]

Your response is totally valid. Just had an adjacent thought:

Ive made lists before of all of the places I can safely eat in each area of town. That way you take the brain work out of it! "Oh well should get somwthing to eat" "great, these are the options!"

[u/killinnnmesmallz → u/SillyRelationship195]

This is a great suggestion. I'm going to do some research and come up with a list for myself and also to add to my website so clients know which restaurants I prefer to eat at.

[u/Maia-Odair]

there is no building a "tolerance " you are harming yourself

[u/killinnnmesmallz → u/Maia-Odair]

I'm aware of this, this is not what I'm asking.

[u/ExactSuggestion3428 → u/killinnnmesmallz]

...it's very unclear what you are asking, then?

[u/killinnnmesmallz → u/ExactSuggestion3428]

I am asking people who knowingly take the risk of CC what their experiences have been like.

[u/Hii-jorge]

My husband is pretty loosey goosey about CC. Thankfully, he doesn’t react much to a shared frier. He usually won’t ask people to change their gloves. (It drives me crazy and I speak up when I’m there)

If you’re eating at fine dining places with a reservation, email ahead of time! We ate at a 2 star restaurant and I actually caused a bit of a scene because I didn’t believe the food they gave my husband was gluten free (it looked identical to mine). They were so kind and went above and beyond to make a safe meal for him.

Outside of that, best wishes and take care of yourself 🩷 There’s definitely long term ramifications to this choice, but I absolutely understand that sometimes you have to choose to pay your bills first and figure the rest out later.

[u/ExactSuggestion3428]

In fairness, nobody can totally eliminate CC. I'm someone who is very strict (never eats out, GF claims on almost everything etc.), I get CC'd sometimes due to random BS. Everyone will have their own line in the sand when it comes to what they are willing to do to avoid CC, and for some people eating out is one of the things they are unwilling to give up. That's ok.

But, I think there is also a wide variety of strategies in restaurants that can give very different results. It's not a black and white thing, harm reduction is perhaps more the goal. If you have to dine out with clients a lot, you can presumably direct what restaurant this is at, or have some influence. If so, you can choose one that is going to be a bit safer, i.e. has decent reviews on Find Me GF instead of idk, a pizza place where there is flour everywhere and you don't have a hope in hell. And be sure to actually talk to the server first.

International travel of course depends on what country, but again, possible to choose harm reduction over idgaf about CC. Some countries that don't have a lot of celiac awareness are going to be tougher, but I assume if you're travelling for business they are putting you up in westernized hotels that probably do have some concept of celiac. Translation cards are something to look into as well.

One thing to point out is that there's no "tolerance building" with celiac. Celiac is not an allergy. If anything, continued exposures just make it more likely you'll become more symptomatic. As someone who is very symptomatic (20 ppm not good enough), probably due to my diagnosis being delayed, that's why I don't eat out period. So I think you don't want to be trying to do that since you may end up like me - unemployable if eating out.

[u/thatotherMLE]

I'm a newer diagnosis. I think that some celiac spaces online get into really unhealthy purity testing and fear mongering. We're in a strange position where diet does directly impact our disease. But sometimes that gets blown into who can be the "most" purely gluten free, anti inflammatory, etc. Similar to others, I never knowingly ingest gluten. I do occasionally eat products with wheat allergy cross contact warnings. I also stick to gluten free items when eating out and flag it as an allergy for precautions, but will not avoid establishments. So far it has worked with only 1 reaction which I healed from quickly. I think my follow up bloodwork and endoscopy will also be telling. If things aren't healing, maybe I'll need to adjust.

[u/PurpleOk5460]

Hey, chef & celiac here! Cross contact is a part of my life, as well. I take every step I can to mitigate it. Tolerance isnt a thing. It all adds up.

Keep a 100% gluten free house. Be anal about it. I even replaced my wood & plastic. Gluten exposure is a cumulative thing, so starting at 0 is the most helpful.

Plan ahead for restaurants and make good choices. If you go somewhere you can't safely eat, get a tasty coffee or drink. The hardest part is assuring others that you're ok not joining on the food. You end up managing their emotions more than your own.

Things worth asking while out:

Sauces/soups made in house? Do they use a roux or a bouillon? (Very popular brand of stock paste that even my fine dining jobs used is eluding me, but it contains wheat.) Avoid anything with soy sauce as an ingredient. Restaurants use the bulk, normal soy sauce with wheat flour. Hidden source that has glutened me is marinated meats.

Avoid shared fryer. If getting GF pasta, ensure that it is going in a separate pot of boiling water. Avoid a pizza station at all costs. Salad stations are sometimes sus bc of croutons. Mostly fine. Burger & Sandwich stations are sus, especially if the sauce is not in a squeeze bottle.

As often as possible, check out the menu in advance and have some choices & questions ready to go. If the server seems unsure, it's totally cool & normal to ask that you speak with a manager "just to avoid a game of telephone." Again, coming from someone in the industry. It's fine. This also makes it much more likely that the kitchen staff will be told how to handle your order. Say that it's an allergy. Even though that's not technically correct, it'll trigger the correct cross contact protocol.

Also, any gluten exposure prolongs your healing. Just be good to yourself & allow yourself to believe that it's possible to do your job without gluten exposure. There may be a change or accomodation you're not even thinking of, since it's so new! We get stuck in patterns.

[u/Fancy_Marionberry154]

I’m half asian, and i’ve always liked to travel asia - so finding out i’m celiac turned my life upside down and Im still trying to process it.

When i’m home I do take CC more seriously although i don’t let it control my life. But when i travel to visit family or another country I have to turn a blind eye to it and just go by ingredient. A lot of cultures are not aware of gluten free and won’t accommodate for it, unless it’s a western owned restaurant which can be hard to come by.

End of the day, I know it’s not the best practise. That’s my choice to make though and i’d say to others to do what makes them comfortable.

[u/puddingsins]

My two cents: this “building up a tolerance” you refer to does not work like you think it does. Regularly exposing yourself to gluten because you think it will imbue you with some sort of resistance is a short-term strategy that will catch up with you. 

That said, I also eat out several times a week, and travel frequently across borders. I am also extremely sensitive. 

I expose myself via cc unwittingly once every 12-18mos or so. That is a reasonable amount of risk for me To have the kind of lifestyle that I enjoy. 

I would just say that if you’re vetting the restaurants and having the conversations, you might not be exposing yourself to as much risk as others in this forum would have you believe - many people on have a lot of fear because they don’t understand how to do that and can’t tolerate uncertainty. If yours is a situation where having the client pick the restaurant and being treated a certain way is a lot of the fun, I would find a way to work this restriction into that concept of fun. 

[u/EstablishmentMoney62]

I'm not very big on cross-contamination avoidance only because I'm very non symptomatic. I do still eat 99.99% gluten free, though

[u/aitchbeescot → u/EstablishmentMoney62]

My gastroenterologist said that non-symptomatic coeliacs (like you and me) are his hardest patients because we don't know if we've been glutened. His advice was to try my best to avoid gluten and was happy with my results.

[u/5mokahontas → u/aitchbeescot]

Is it recommended for you guys to get your levels checked and endos done more frequently?

[u/aitchbeescot → u/5mokahontas]

I haven't had any done for years. The clinic I was going to stopped doing reviews and said that something else would be put in its place, but it has never materialised, I was first diagnosed because I kept being turned away from donating blood for low iron levels. I have been successfully donating blood for a number of years now, so evidently my diet is going OK.

[u/ExactSuggestion3428 → u/5mokahontas]

Yes, it is recommended that celiacs get repeat serology annually, and perhaps more if their serology is abnormal (to see if interventions are working). This is especially important for asymptomatic folks.

Unfortunately many patients and doctors are not aware of this and assume that a patient without symptoms must be fine.

From the AGA practice guidance35408-8/fulltext):

Best Practice Advice 10: Celiac serology has a guarded role in the detection of continued intestinal injury, in particular as to sensitivity, as negative serology in a treated patient does not guarantee that the intestinal mucosa has healed. Persistently positive serology usually indicates ongoing intestinal damage and gluten exposure. Follow-up serology should be performed 6 and 12 months after diagnosis, and yearly thereafter.

[u/EstablishmentMoney62 → u/aitchbeescot]

That's what I do as well, at least to the best of my abilities, since I don't have anyone else in my family that is a celiac that could understand the struggle.

[u/veetoo151]

Minimizing your exposure the best you can is always the best route. A tolerance doesn't reduce your internal damage. Symptoms or not, your immune system damages your intestines when you are exposed. Like, if I were you, I'd be improving my emvironment at work to make it safer. Even if people there think you are crazy (since most people are ignorant and/or misinformed). Like, packing your own lunch, and eating separate, or at least cleaning your eating space everytime, and letting people know the seriousness of your rules and expectations. You have to stand up for yourself when you have celiac. It's one of those things people don't think about at first as another thing celiac people have to deal with.

[u/GwenLoguir]

I am new to this. So I asked my doc how long until symptoms will get better. Doc said up to 2 years for adults. And then : but even tiny amount of gluten will postpone it.

We dont have many eating activities in work, but I will skip them or have my own food. Personally, my health is already fucked up enough, complicates life a lot, it goes into finances as well, and I dont want to risk me ending up being unable to work.

[u/stressforless]

I had no symptoms before being diagnosed. Pretty quickly after diagnosis and cutting out gluten, that stopped. Now even a little bit means I’m up at 2am in the bathroom for hours, and dragging all day.

It’s not worth it for me. I don’t travel a lot for work, and it would stress me out if I did. I’m actually traveling this week and it’s stressful but also just a part of my life - so I expect to go places to hang out and drink water or a soda, then eat a lot of snacks before and after. I scoped out places so if I get time to grab my own food I can.

If I was asymptomatic I’d probably be less cautious about cross-contamination out in the wild.

At home, however, we are not a strict GF household. I make my kids sandwiches with regular bread and gluten snacks every day. But I know that I’ll wipe down the counter, we don’t share anything that touches gluten (peanut butter jar, toaster oven, food that will touch gluten is served in a separate dish from the main pot), and I wash my hands before touching my food. I very rarely cook gluten pasta or anything anymore either, and high risk things like flour aren’t in the house. Unless that all starts making me sick, this is a level of risk I’m fine with because it’s within my control.

[u/brazenmavens]

When I was first diagnosed I would be more lax, so I wouldn't eat things with gluten in it, but I would still order things like fries from a "communal" frier until I started having reactions to it.

Eventually I couldn't tolerate it any more and it does suck, but it wasn't worth it eventually. I do sometimes trust places I shouldn't, but we're just doing the best we can.

[u/toocuteforthisshit]

as long as you’re not going to restaurants, telling them you’re celiac, but eating foods with CC. makes the rest of us look bad

[u/popcornwasabi]

I am also not as leery as most people seem to be in this sub. Namely, I eat out all the time. BUT I:

• Cycle through the same 5-7 places that are all highly rated on FMGF (or are just 100% gf to begin with) and have strict protocols in place.
• Keep my own home and pantry 100% gluten free (I do allow people to bring gluten into my home but it’s rare and I have a system).
• Get bloodwork done every 3-6 months and my vitamins and levels are routinely checked.
• Have a dietician who has celiac herself and keeps me apprised of studies and information such as this one: https://www.gastrojournal.org/article/S0016-5085(19)41340-1/fulltext

But the big thing is that I am rife with mental illness lol. CPTSD, OCD, etc. And before anyone tells me that celiac can affect my mental health I promise that isn’t the case here. I developed celiac recently (no damaged villi, even, in my scope) and I’ve been mentally ill for 20+ years. Food makes me happy. Being able to go to restaurants makes me happy. I’m going abroad next month and I’m looking at FMGF for restaurants so I’m going to do my due diligence but I’m still going to enjoy. I do my best and I hope for the best and at the end of the day that’s how I’ve chosen to live. Maybe in the future I’ll choose or need to be stricter, but for now my blood levels say I’m okay and I’m happy.

[u/stltbone]

I was diagnosed two years ago and don’t have (external) symptoms the way most people here are.

My blood test numbers were all above 150 when diagnosed. I am very social and live a really active life with my wife. The only reason I cried when I was diagnosed because of how it would impact her.

I kind of made an agreement with myself that I would be really strict about eating gluten free ingredients for the first year and then see how my blood tests were. I don’t even tell them I am celiac when I order, unless it is pasta so it’s in different water.

My blood tests came back fine after a year, just slightly above the key number, and I have felt much better. My anemia( why I started my diagnosis journey) has gone away and I feel much better.

I have a follow up scope in a few months so we will see how I am doing internally but that’s how I have justified it and it’s worked ok for me in terms of keeping a normal life.

In your situation for example, I would never worry about going out with clients and getting salads or telling the servers you’re celiac and asking for one of the proteins and veggies made GF and trusting them. That’s me tho

Note- I think most of the people on this sub really make this a personality trait and love to let people know they suffer and can’t talk about anything else. Misery loves company. I get they have a different experience than you or me but I wouldn’t worry about most of the comments trying to shame you. You would probably disregard their opinion after having a 2 minute conversation with them in the real world, girlboss

[u/K8b80]

You will not get a tolerance. Unfortunately that’s not how our disease works. Each small cross contamination does damage inside. I heard they’re coming out with a new drug to help with this sort of thing, but it’s not on the market yet. I know you don’t wanna be a pain, but it’s literally your life

[u/charliehixon]

Right there with you. The worst my symptoms have ever been was in the months post strict covid quarantine because for the first 6 months I exclusively ate without cross contamination and then slowly reintroduced takeout followed by dining out. Also in a similar boat where I choose travel, experiences dining out, and living a relatively normal life with cross contamination over a hyper strict lifestyle. It works for me and I’m thankful that it does.

Way I handle it in restaurants: I still always start every order by telling them I am celiac and gluten free. When they ask about cross contamination my line is “to the extent that it can be avoided is greatly appreciate. I understand your kitchen is not a 100% gluten free facility.” And then I let the chips fall where they may. I’d say I accept the non-cross contamination side swap 80% of the time (salad in lieu of fries) and usually my decision is dependent on my overall consumption. Getting a burger? I don’t need fries. Getting something light on carbs/starch and also drinking liquor? That’s usually the 20% of the time I’ll accept the cross contamination and get the fries.

[u/Uncertain_Boeing_737]

I think you’re saying that if you’re a little bit glutened all the time you’ll be able to handle cross contamination but that’s not true.

This “tolerance” you’re talking about is not going to protect you from having worse symptoms from cross contamination. It will make you overall sicker and you might not be able to travel after a while. I am not trying to just say “you’re harming yourself”, but I want you to know that each cross-contamination will build up and your body is going to get weaker over time. You might not be able to tell each time you’re CC’d but it’s going to be because your body is already so sick, not because you’re not reacting to the CC.

At some point you might regret allowing yourself to be CC’d over and over because your body will hit a point where you’re not going to be able to just power through anymore.

[u/unapalomita]

It was bad for me, I got careless in May/June and paid the price, my hair falls out so 🥲 all the momentum I made taking Minoxidil was lost

I would bring my own snacks / try to get a place with a kitchen / try to pick a dedicated GF restaurant or just get a drink

When my family goes out I either skip or will only have a drink

[u/Extreme-Cookie-7821]

I eat out at restaurants quite a bit as well. Just be smart about it. Ask a lot of questions. I find the biggest culprit of CC is a shared fryer. Stay away from anything that says, “crispy” eg, “Topped with crispy shallots”. For breakfast, especially at hotels, bacon is sometimes fried in the fryer. Home fries or potatoes are often fried in the fryer.

I wouldn’t intentionally consume gluten to build up a tolerance or anything like that. I don’t think it works like that.

Proteins are generally safe: steak, chicken, fish. Careful of breaded things. Sometimes pork chops are breaded. Like I said, ask a lot of questions. Tell people you are celiac and that means you can’t have flour, bread, wheat, etc. Don’t assume people know anything.

[u/EffectiveGrand4580]

I was diagnosed in January 2025 and did not pay much attention to cross contamination until very recently. Mostly due to the fact that until recently, I didn’t get symptoms from CC.
Recently I get symptoms from all CC, as well as from lotions that contain oats, which was never an issue for me until now. I’m not sure if that’s typical, but just thought I should mention it should the same thing happen to you eventually.
I won’t tell you to never eat out with your clients given I am in a similar situation, but be careful (as is possible)

[u/dizzymatter96]

I didn’t know I had celiacs and was just gluten free to see if I got better. Then I did. But after 5 1/2 years of not knowing I was celiac I had an exposure and immediately had a pancreatitis flare caused by the wheat. So now I have to be careful about cross contamination or I could die.

[u/HumanBeing3636]

I've never been formally diagnosed but my mom had celiac. I get GI symptoms, dermatitis, brain fog from gluten. I never wanted the bowel biopsy to confirm a diagnosis (this was before the blood test was available) so I eliminated gluten. All of my symptoms went away. I take cross contact seriously because I get diarrhea and other GI symptoms when I'm glutened. Ultimately you have to do what works best for you, know the risks, and make the best choice in the moment. If I'm going to a restaurant where I can't safely eat, I just have something to drink. I eat beforehand and pack a Lara bar or some other GF bite in my bag. To me, it's not worth it.

[u/reverendcook]

Man, my body freaks out so bad that any type of gluten will cause my body to freak out and my blood pressure raise to stroke levels. Although I am not a celiac just turn 35 and my body decided no more gluten and no more cheese. I started making my own meals now. Some places have gluten free options and can try their best to limit cross contamination. I saw a pill that is suppose to help digest gluten like the lactose pills. Has anyone try it yet does it work?

[u/mysaddestaccount]

I know a woman who does this and she has heckin symptoms all the time and orthopedic issues. She has no idea she's getting glutened (she grew up in a time when the science was way behind so she doesn't know)

[u/achybreakysmart]

Is there a reason you can’t use apps like the premium version of Find Me GF to find suitable restaurants and ask some basic questions on site (i.e. “Could you mark up this menu with dishes that are GF and aren’t prepared in a shared fryer/on shared surfaces?”)?

My work is also social and requires international travel. I find that taking those two basic steps eliminates a lot of risk—I’m very, very rarely sick and my ttg numbers are great. I’m also very respected at work, and my colleagues don’t mind.

[u/Jinxie1206]

Sometimes I take the risk. It’s not always avoidable and I get really hungry.

[u/Fyi_its_vari]

my gf doesnt take her cross contact for herself seriously 😔 but she knows the risks and at least we know the places that the cross contact doesnt ruin her day! Pappa Johns and Firehouse subs are safe for her with their gluten free food but dominos isnt 🤷

[u/Dry-Faithlessness655]

I’m not GF but my adult daughters is so when I cook or bake for her I make sure all surfaces
Are thoroughly cleaned.
I never had a single issue in 20 years. All flours etc are all GF labelled in large print on the container.

[u/Ravishing_panda]

I do and somehow still get fucked/my gut isn't healing. I might have refractory. But our dogs food is even gluten free. I don't eat out. Whole foods. Etc.

[u/killinnnmesmallz → u/Ravishing_panda]

I take a medication at the moment that I saw is sometimes used in cases of refractory celiac. I'd recommend checking out low dose naltrexone if you haven't come across it already.

[u/Ravishing_panda → u/killinnnmesmallz]

Thank you all my doctors are clueless and I've seen 3 GIs -.-

[u/warriorprincess71]

Find restaurants that are celiac friendly. Check out the Find Me Gluten Free App. Don't be afraid to explain to the server that you need your food to be handled properly for an allergy. Eating out is tough, but you should be able to do so safely with some planning.

[u/wisdomseeker42]

I do take steps, but this is how I handle unavoidable potential cc. It’s an enzyme that breaks down gluten in the stomach before the intestines. I take it early in the meal so it has plenty of time to work. It lets me travel, and I can enjoy potluck with knowledgeable friends, or eat at decently safe (and sometimes sketchy) restaurants. I’m sensitive and would feel it in the past, which was why I started looking for something. I had a clean biopsy early this year, so it works.

It’s not a cure, and I would not eat a whole slice of pizza with it, but if you’re generally avoiding it and just need something for cross-contamination, this would probably be healthier for you in the long run.

[u/Kitty_and_Cola]

A lot of people on this subreddit can be almost evangelical about CC and I totally understand why - they’re right that your health is the most important thing. 

I think unfortunately what many forget is that mental health is also critical. When I was diagnosed with coeliac disease it hit my mental health incredibly hard for a very long time. And i was only diagnosed because i had been experiencing recurrent miscarriages (caused by coeliac disease). Multiple pregnancy losses weren’t enough to send me in a spiral of depression, but the intensity of living with strict GF diet adherence was. For some people, of which I am one, the social impacts and loss of enjoyment of food, can’t be overcome. 

I was incredibly strict during subsequent IVF and pregnancy, and since then have eased up (noting that I’m largely asymptomatic). Like many here, my household is gluten free, I’ve never knowingly eaten gluten, and I always talk to wait staff at restaurants. I won’t eat anywhere that people act confused about coeliac disease, but I will occasionally eat from a shared fryer etc. I won’t order from Uber eats unless it’s a mostly GF restaurant, but I will get takeaway if I can call up and order. 

And honestly, I’ve made many coeliac friends and most of them are similar. They’re just not on this subreddit posting all the time. 

Now, I do live in fear of developing a reaction to CC, or causing damage and it having a long term impact. But for me, I have to balance physical health with mental health, and that’s how I’ve landed.

ETA: I’m also cautious about what I order. So, I would never order pasta at a non-GF or coeliac society endorsed restaurant. If it’s a place I’m not sure about, I stick to safer foods like steak and salad where possible. 

[u/mbatet]

You see.... the "building up tolerance" would work in reverse.

Exposure will worsen the illness and will add another problems that you don't have right now but will have in the future if you don't cut gluten. So, what you are doing is adding to your future problems.

And I'm sure that this is not what you would like to hear, and I know life it's not fair. But if you need to be socialble for work, better just not eat than be exposed to cross contamination.

I assume that you don't have sympthoms, so you would no even be considering that.

I don't really like the term "asymphtomatic", because if you really are celiac, a biopsy will show that you, in fact, have very serious sympthoms.

I'm sorry, I really am, this illness sucks so much.

edit: I don't know how to write

[u/HugeAntPenis341]

Oh wow... That's quite the logic. I used to travel a ton for work and had to have dinner with clients. If I couldn't eat safely at a restaurant I would eat before and just have a drink at dinner. A quick explanation to the group usually allows for everyone to continue on with normal conversation. I would prefer that to being sick all the time but everyone is their own person so good luck with that plan

[u/anartistnamedjes]

So. I dont mean to be rude at all - but I’m not sure what you’re looking for here if you already know that it’s bad for you. You can take your clients to places that are safe for you.

[u/rugger522]

I don’t know how much control you have over where you choose to eat for work but if you get some control the app find me gluten free can be super helpful in determining what restaurants will have the best/most options

[u/Immediate_Effort7528]

Doubt many people here who does not take precaution would reply since they’d just get slandered by the rest of the sub who are mostly strict

[u/Novel_Passenger_8251]

I had an endoscopy a year ago for a different issue, and my doctor said he took a look around since he was already in there, and everything looked really amazing, no noticeable issues from celiac. I’ve had celiac for about 18 years now. I always do my best to avoid cross contamination (for example if a restaurant asks me if it’s a preference or an allergy, I always say an allergy so they wipe the counters, change their gloves, exercise caution, etc), but I’m also eating chips and salsa when I go to a Mexican restaurant even though they likely fry everything in the same fryer.

Everyone’s bodies are different, and some people can handle cross contamination, and some can’t! Depending on the food, I’m willing to risk it. 🤣

You do what works best for you!

[u/Ok-Peace2787]

I wouldn’t say I made the decision not to eliminate cross-contamination. But I certainly don’t limit myself because of it. The only exception to that is deep fried fries that have other gluten things cooked in it. Only reason for that is because I do feel crappy if I have a full serving. I will steal a few from my husband’s plate without issues. I’ve been doing this for 10 years now. My tTG-Iga has always been higher than the recommended range. But I had a recent biopsy that was fine.

[u/AgitatedTree]

I eat out all the time, I’ve just got a strict set of restaurants nearby or chains I can trust. I make reviews on Find Me Gluten Free when I can, because I know it’s extremely helpful to get reviews on that app from other celiacs. I try not to mess around with anything that would go in a fryer (unless there’s a dedicated fryer, bless) and normally don’t have any issues. I got diagnosed 6 years ago (via biopsy after colonoscopy) and this is generally what i’ve done since, after noticing my anxiety was spiking from how hyper-vigilant I was about it. One of my roommates has a peanut allergy that could kill her, so we’re all generally good about wiping down surfaces, and cleaning stuff in the dishwasher. Is it the safest? Hell no. Does it make me happy, and still reduces the amount of gluten I eat? Absolutely. My philosophy is that i’m down to take the risk if that social experience is worth it, the food is REALLY good, or if I’ve got some pepto in my bag lol. Do what works for you.

[u/Wild-Watercress7757]

Coeliac here who used to have more symptoms from CC when I was younger compared to now. However I do take precautions and try to avoid where possible (eg shared fryer), but totally understand for social and international travel. We have used digestive enzymes for a long time that have helped dramatically reduce any symptoms from CC.

In Australia we have Gluteguard which I take before a potential CC meal. But really I love the ones we used to get in the US from Enzymedica: Glutenease and Digest Gold with ATPro. I am also soy and dairy intolerant so taking both of those before a potential CC meal significantly helped prevent or reduce symptoms.

[u/Work4PSLF]

We have a split household, half with celiac disease and half without. We take obvious precautions (separate toaster), but otherwise have a normal kitchen. The bloodwork of the family members with celiac disease shows they’re doing great.

[u/GiratinaBabbies]

Most places I'm pretty sure can't guarantee there's no cross contamination so there's always a slight risk. Cross contamination like in chippies is a no go but my toaster at home is fine because the crumbs simply fall to the bottom. I'm luckily not sensitive enough for extremely slight traces of gluten (like barley malt) to become unwell. Still, I need to be careful. There's definitely nothing wrong with being extra careful though.

[u/-slaps-username-]

i handle glyphosate on almost a daily basis i’ve accepted that i’ll probably get cancer by the time im 50

[u/Imaginary-Vanilla993]

No celiac I know irl believes in cc lmfao

[u/Filledwithrage24 → u/Imaginary-Vanilla993]

That’s weird…

[u/Imaginary-Vanilla993 → u/Filledwithrage24]

Yeah it makes me feel insane for following cc protocol. They all act like I’m neurotic. And I’m only a medium strict celiac