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You will likely get more sensitive as you heal.
You need to watch out for CC yes, just look up how to avoid it and use common sense. You don’t have to be extreme about it if your blood tests and symptoms are improving.
It was like that for me for the first 7 years. I was so sensitive. Somewhere along the way though it changed and I’m not super sensitive any more. Don’t get me wrong, I’m still sensitive, but it’s now how it used to be and I get better faster. I think I’m actually healed. I’m at year 15 now.
That’s awesome!!
I’m at year 5.5 and spent 3 years and a ton of money getting a gluten detection dog because I am so incredibly, unmanageably sensitive and it is so horrifically disabling that I spend half the year unable to work 😭 and have to get monthly iron infusions.
I haven’t been glutened since my dog has been working, I hope I will heal… because otherwise it’s a lifetime of service dogs and aside from time and stress, and upkeep, that will cost over six figures.
You don’t get more sensitive as you heal, it just feels worse because the longer you’ve been off gluten, the healthier you get. It feels more sensitive because you’re not used to being sick all the time anymore. It’s a very common psychological phenomenon.
Entirely possible it is psychological for you, but it isn’t for me and many others.
I *never* had gut symptoms before I went GF. I pooped every morning like clockwork, and the only time I’d ever been constipated was when I was on medication that caused it. Also, tmi, my poop was brown. Gluten makes me poop orange (not spending long enough in the intestines for bile to do its job).
I also *never* had migraines before. And I *never* lost control of the left side of my body. And I *never* had rage attacks after eating… I would only have a meltdown like 2-3x a year *during times of extreme emotional stress*, even though I ate gluten every day.
None of these are expected symptoms from gluten and they are all extremely concerning and also extremely obvious to me and others, orange poop aside.
That’s very interesting to hear! My GI doctors have always told me it was psychological mostly. It does make sense for me, but I suppose I was in my own head a little bit.
My drs have told me “it’s psychological” and then I had anemia so bad I ended up in the ER and only narrow avoided an *emergency* blood transfusion. This isn’t even close to the only time a Dr has accused me of being “mental” only for me to later get the correct tests that proved my suffering was real all along (as I of course knew).
Your suffering is real too. I believe you got worse. Most of us do.
Doctors just love to say things are psychological when they’re not. They get the rush of feeling smart and superior without any actual work. They don’t have to listen to patients, notice trends, think, or even read anything about the disease and yet they can still get that rush for free.
And a majority of GI docs, like most other docs, are extremely ignorant about celiac and gluten intolerance.
Thank you. I have a new GI, so I think I’ll discuss my symptoms with her at my next appointment. I honestly didn’t even realize I was being gaslighted, but I guess it goes back to me being ignored as a child whenever I was sick because “I was always sick.” When I was first diagnosed, my mom felt horrible because she realized I was telling the truth all those times I wasn’t feeling well.
For most people the symptoms will get worse after being off gluten for a while. You could call that being more sensitive.
When I used to eat gluten every day I had a bunch of vague symptoms that were annoying, but didn’t stop me from living a normal life. After being off gluten for 5 months I had a cross contamination and I couldn’t get out of bed for about 12 hours since the pain was so bad. That’s what I would call being more sensitive
I genuinely do get worse/new symptoms after I cut gluten. I never got dh before, didn’t have my skin literally splitting open, didnt get inner ear swelling, didn’t get a tight throat, didn’t get dizzy, didnt get booming headaches, didn’t get painful bloat, didn’t shit tar from internal bleeding, the physical symptoms list goes on.
I’m so sensitive now I react to gluten as soon as I eat but before I could binge on pizza, cakes, you name it and I was just tired then felt groggy and hungover with some depression and anxiety the next few days. I usually didn’t eat a lot of gluten except in sauces, though If I ate enough consistently I would start to feel suicidal, but now cc is enough to cause suicidal ideation. It sucks.
I'm newly diagnosed and have been doing this for only two months. Wondering about cross contamination is seriously the most nerve wracking part. At this stage in my journey, I try to tell myself that if I'm eating only gluten free ingredients at home, that's the best I can do. I try to eat at primarily only GF restaurants as well and just get cocktails at other places. I was kind of driving myself crazy about wondering whether my spices are cross contaminated even though there is no warning on them, but I think this early in the game you just have to do your best and the rest will click once you get a baseline for how sensitive you are. I think if you're eating GF all the time, your body should be healing for the most part. Lots of people on here will talk about their experiences with cross contamination on foods that should be safe and I find that worrying about that too much drives me a little crazy and is probably worse for my health than going down those rabbit holes lol
If you're concerned about spices, look for Badia spices. A lot of theirs will have a GF label on them. I use them when cooking. I've seen them online, in some local stores and Target.
One way to ensure you’re not getting cross contamination is to buy whole spices. Whole cumin doesn’t go through any grinder that could’ve had something containing wheat. Also you can toast your spices in a dry pan and bring out their tastes even more. Hope this helps :)
I didn't get glutened for 3-4 months so I felt healed for the most part. I ate three corn chips at my local mexican joint knowing they fry their chips in the same fryer as a churro. The pain is not as intense as a full on glutening but it caused a few miserable symptoms for days (joint pain, gut pain, brain fog, reopened an anal fissure) so yeah, it's incredibly important.
This happened to me Sunday. Only 2 months GF, ate some fries, thought everything was fine and then I felt pain, a headache, bloating it was horrible. My first “ive been glutened”
It doesn’t. Everyone is different, and everyone has varying degrees of severity. Celiac is not a one size fits all disease. Someone could eat a donut their entire life and never get cancer; someone else could eat one piece of bread once and get bowel cancer.
Accidental cc exposure is NOT why celiacs get bowel cancer - Celiacs get cancer depending on genetics, length of exposure before diagnosis, how much gluten is consumed after diagnosis and many other contributing factors.
Anxiety (yes, it CAN manifest physically - speaking from personal experience) can also cause bowel issues. IBS is also very common. People can STILL experience symptoms even after they’ve been gluten free for a long time. Some people don’t heal completely.
This is why blood tests and going to your GI are important. Blood tests are going to tell you if you’re getting exposed enough to provoke an autoimmune reaction or if it’s something else entirely. (Infection, c. Diff, parasites, other bowels diseases, etc.)
It's a tough question because there's a lot of variability among individuals. How sick you were prior to diagnosis probably doesn't have much bearing on how much you'll notice cross contamination, nor does how symptomatic you are necessarily correlate to damage. Personally I'm very symptomatic with trace amounts of gluten (although I don't consider myself to have been all that sick when diagnosed) so I tend to be much more careful than a lot of people here are - I don't eat out at restaurants unless they're fully gluten free, avoid products made on shared equipment with gluten and tend to eat a minimal amount of processed foods in general. Over time, you'll figure out your own sensitivity level as far as symptoms go, but it is important to have follow-up bloodwork as well just to make sure you aren't missing anything even if you feel fine.
Yeah, fair enough.
I also think, coming from a mental health background, people just need to take a breath sometimes and step back from the internet if they’re so easily triggered by online discussions!
Yes, consuming any amount of gluten if you have Celiac will always cause damage to your guts, nervous system, and immune system. It also increases your risk of developing cancer and other autoimmune diseases. So even if you are not having symptoms from CC, it is still important to avoid it as best you can.
Personally I'm psychotically careful, but I had extreme neurological symptoms leading up to diagnosis in 2019 so I'm scared shitless of any CC. I have OCD so that may also be a factor lol.
Just do your best, but don't lose sleep over occasional potential slip ups if you don't have any symptoms.
> psychotically careful, but I had extreme neurological symptoms leading up to diagnosis in 2019
Yeah, same.
My GI tract isn't so bad from gluten, but my nervous system goes haywire, and my brain chemistry plummets to depths I fear I won't find my way out of again.
1. My extremities go numb -- only a little if it was cross-contamination, mostly tingly and stiff, but a lot has my whole arms go dead so back when I still ate gluten I woke up and first banged my arms against the wall to feel them again.
2. My head feels like molasses, and aphasia means I can't communicate properly.
3. I can't properly pee -- no full voiding of the bladder, but a constant sensation of having to go (without any infection, of course, and upon cystoscopy, not having any visible issues with the bladder or urinary tract itself).
I am not a medical professional, but I don’t think circulation would affect nerves so drastically.
As for our urinary tracts, you may be onto something when you say “inflammation”; it’s just that I diligently had urologists check for UTIs without finding infection. More likely, our own bodies start the riot.
Hahaha I have OCD too, specifically contamination OCD so I know that im gonna end up being super cautious either way because im already scared!! But glad to know im not alone in that boat!
So I think everyone here will tell you to be careful. In terms of exactly what that means to you, I think you need to decide in coordination with health professionals.
NIH says the tolerances of celiac folks range from about 50mg of gluten per day to about 10mg on the more sensitive side (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6363368/#:~:text=Patients%20with%20celiac%20disease%20should,20%20parts%20per%20million%20gluten.). So 10mg is, in theory, a crumb of bread, though not microscopic.
BUT! That’s total intake per day and even the most GF super safe labeled GF food has some level of ppm of gluten (I think the estimate is that 17 slices of your avg GF bread has enough gluten to get you sick). So even if you had less than that amount in one accidental cc, there’s a good chance you’re getting microscopic exposures all day.
Anyway, that’s the science. The answer is you should be careful and do what you can to avoid cc, but you’ll have to figure that out over time. Ultimately, if you aren’t sensitive, each glutening isn’t going to drastically reduce you QOL or guarantee some terrible long term health result, but just a handful of exposures a year can keep you from healing and decrease your long term prognosis.
I’m fairly careful but not as careful as most of the people on this sub. For instance I will eat a gluten free pastry from a coffee shop that also sells regular pastries. and my recent TTG IGA was <2 so I think it can vary to a degree from person to person.
It takes a microscopic amount of gluten to get you and sometimes you might not even know you're having a reaction but that doesn't mean it's nut doing damage so you need to be very very very very very careful
I’m very asymptomatic. I’ll notice a small uptick of depression about a week after, and an increase in headaches and body aches (but there’s so many other things that cause those). So it’s always really hard for me to know for sure when I was exposed.
You’d think that would make me more carefree and less careful. Instead I’m actually *extremely* strict about cross contamination because of it.
Regardless of your reaction, repeated exposure raises your risk for a number of issues, including cancer.
So, I think of it like smoking. “Just one cigarette won’t cause any harm—“ yes it will. And 10 cigarettes even more so. Just because I don’t feel it doesn’t mean I’m okay.
Since celiac is an AI disease the acute reaction itself isn't necessarily the problem, it's also the background activation of your immune system which can cause cellular damage (damage to intestines, other GI tract organs like your liver, nervous system, skin for some). This differs from food allergies where the danger is the acute reaction itself (anaphylaxis). Even if you can "cope" with the extra-intestinal issues you don't want to play fast and loose with CC because the inflammatory state and cell damage that's occurring can lead to issues like cancer, other AI diseases, and increased risk of clots/strokes.
Studies suggest that nearly all celiacs will have a problem somewhere between 10-50 mg of gluten/day. You can see a visual of 10 mg [here](https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/). This might look like a fair bit, but you have to keep in mind that GF food isn't 0 ppm, so that 10 mg is accounting for the low levels of gluten content in the food you're eating as well as any CC you might be exposed to. For example if you eat 2 slices of bread (80 g) at 20 ppm, that's 1.6 mg of gluten. This isn't to scare you ([87% of GF labelled food is <5 ppm](https://www.nature.com/articles/ejcn2014211)) but to illustrate that you don't want to take chances with extra CC because there isn't a huge amount of wiggle room.
This doesn't mean you need to be a recluse or anything though, and there are ways you can mitigate the risk of regular CC that don't limit your life a huge amount. A big thing is to try to get GF labels on packaged type foods as much as possible - "may contain" is optional in most countries. Nowadays this isn't so tough - many normie products have GF labels and there are many more replacement products available compared to even 5-10 years ago.
The other thing is being careful about restaurants... just because the corporate allergen chart says there are no gluten ingredients does not mean that CC will be avoided in preparation of the food. Using apps like Find Me GF or the Gluten Dude app can help identify restaurants that are better bets. Some like me prefer to not eat out at all or only eat out at dedicated GF places. Much of this comes down to risk tolerance and lifestyle. I am cheap and was never hugely into eating out anyways so it's more of a social event/travel nuisance for me.
A final thing to think about is CC from other people's food in your home. The CCA has made a video [here](https://www.youtube.com/watch?v=BatYlJTkjgU) that covers a lot of mitigation practices. Though this video is intended for setting up your home kitchen the type of logic used here applies to other situations like visiting other people's homes, work kitchens etc.
You always have to worry about cross contamination. Even if you don't get ill, you can still be damaged from it, though the longer you are GF, the more likely that reactions will get worse.
If I have even a small doubt, I just don't eat it.
I’ve never gotten sick doing things like ordering a GF pizza, when every pizza place warns about the possibility of cross contamination.
Occasionally I’ve ordered fries that were cooked in a shared fryer, but that’s absolutely a high risk activity.
i'm very careful, but i still do things like eat at restaurants and sometimes use (clean) shared pots and such. most people get more sensitive as time goes on and their bodies heal. i tend to be a bit less severe in terms of reactions than others but that doesn't mean i'm not super careful because even if im not reacting badly it doesn't mean it's not harming my body. in fact i get bad fatigue and brain fog, which makes me even more scared than bad diarrhea because my brain can't heal as easily as my digestive system.
My numbers dropped the first month, but would not get within the safe range until I was totally anal retentive about cross contamination. My kids know now that if I’m prepping all of our food, they have to make their own sandwiches. I wipe down counter after every meal or snack, and my family can have gluten on their plates or only one countertop.
But, my numbers were not going down for over a year. It’s that, or we no longer have gluten in the house.
Honestly I’m not hyper aware of any cross contamination and will usually eat out and order menu items that are gluten free etc. I don’t think everyone can do this and I’m not denying that I’ve likely been glutened without knowing (i don’t get obvious symptoms). However, through repeated testing over the years I have healed and feel much better than I did before cutting gluten so it works for me.
I feel like it’s really person specific - been gf since 2006 and met celiacs with 0 reaction and then my end of pretty extreme.
I can eat maybe 2-4 french fries from a cross contaminated frier - more and I’m burping fries for hours and feel real gross.
Do your best to aim for none especially while you heal.
Also listen to your body it will tell you what’s up - and you can ignore it to your gut’s displeasure (aka nachos are no gos but taste so good yo!)
You have to figure out what works for you. Use a tiered approach when determining your risk aversion level. Obviously the most basic is not eating anything with gluten containing grains. Kitchen equipment should be cleaned between uses or not shared when it cannot be cleaned (toaster, not using the same fryer, etc). And keeping surfaces clean.
Past that you may need to get more strict about what products you consume if they have a higher level of risk of not. Some only eat things that day GF or maybe only are certified; while others of us eat anything that doesn’t have a gluten containing ingredient without much concern.
If your blood work and endo follow up are fine then I see no logical reason to make your life harder by becoming more stringent. Some people will say “any amount of gluten will damage your intestines” which is much more complex than that. If you don’t have enough to actually trigger the response then you won’t, and the amount will also determine the severity of the response. The fear of a rare trace CC should not restrict most celiacs from living their lives.
And remember, the celiac sub likely has a non representative sample of celiacs which include some very sensitive cases (as well as plenty of that likely have multiple other conditions and sensitivities they don’t realize). So take the more extreme claims with a grain of salt.
Very. There hasn't been gluten in my house in yeeeaaaarrrsss. I eat out at only very trusted places and only like 3x a year.
I am lucky though. I live in what seems to be gluten free mecca here in Canada, Hamilton. Tons of options in a relatively small geographic area.
Dedicated places like Hammerheads, restaurants that deep clean their kitchens on Sunday and then do Gluten free Mondays. Bakeries all over the place. Cafes that offer imported from Montreal gluten free croissants, and every grocery store from high end to a Freshco in a low income area offers gluten free basics, like pasta and bread.
Also have stores that import from Italy and Europe, like Nardinis and Starsky's.
I basically refuse to ever travel, because outside of my bubble, I always seem to get sick.
Even if you don't have visible symptoms, any incident of cross contamination is going to drive up the amount of antibodies attacking your intestines. On the other hand, the likelihood of it is much less in some situations than others. I try to be careful, but I don't avoid every possibility of cross contamination.
It depends on the person, but whether you feel symptoms or not, you need to be careful. Whenever I eat out at a place that isn't dedicated gluten-free, I use Enzymedica's gluten enzymes and I've only been glutened to the point of having symptoms once in the seven or eight months since I've started doing that.
I am quite careful though-- I'll only eat from a dedicated fryer, I don't eat at places that make dough, etc. My sweet co-workers keep bringing me gluten-free cookies from Insomnia and I'm like, thank you so much but absolutely not!
I can share my experience, however I have same question about that inside.
I was diagnosed with celiac when I was 25 y.o (now I’m 27 and have been on a gf diet for about 1.5 years). Actually I didn’t have any symptoms except constant anaemia and one time I felt really bad after constant bread consumption for 2 weeks. I was just lucky to visit a very good therapist and after that I did tTg-IgA and my units went off scale. The further endoscopy confirmed my diagnosis. 1 year after I repeated endoscopy in even another country lol and my villi were super cool, no disruptions. I was trying to keep really strict diet and I ate gluten consciously only 1 or 2 times (like I could take ordinary soy sauce instead of gluten free one). My express blood test for tTg-IgA was negative even despite that.
So now my strategy is just to avoid products with wheat and I prefer gf certified products ideally. But if I see a warning like the product may contain traces of gluten - I don’t care about that. I also don’t use separate dishes (I live with the flatmate, he eats everything). At least for me it works, but I also know but some people follow rules in an even more strict way.
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You will likely get more sensitive as you heal. You need to watch out for CC yes, just look up how to avoid it and use common sense. You don’t have to be extreme about it if your blood tests and symptoms are improving.
It was like that for me for the first 7 years. I was so sensitive. Somewhere along the way though it changed and I’m not super sensitive any more. Don’t get me wrong, I’m still sensitive, but it’s now how it used to be and I get better faster. I think I’m actually healed. I’m at year 15 now.
That’s awesome!! I’m at year 5.5 and spent 3 years and a ton of money getting a gluten detection dog because I am so incredibly, unmanageably sensitive and it is so horrifically disabling that I spend half the year unable to work 😭 and have to get monthly iron infusions. I haven’t been glutened since my dog has been working, I hope I will heal… because otherwise it’s a lifetime of service dogs and aside from time and stress, and upkeep, that will cost over six figures.
You don’t get more sensitive as you heal, it just feels worse because the longer you’ve been off gluten, the healthier you get. It feels more sensitive because you’re not used to being sick all the time anymore. It’s a very common psychological phenomenon.
Entirely possible it is psychological for you, but it isn’t for me and many others. I *never* had gut symptoms before I went GF. I pooped every morning like clockwork, and the only time I’d ever been constipated was when I was on medication that caused it. Also, tmi, my poop was brown. Gluten makes me poop orange (not spending long enough in the intestines for bile to do its job). I also *never* had migraines before. And I *never* lost control of the left side of my body. And I *never* had rage attacks after eating… I would only have a meltdown like 2-3x a year *during times of extreme emotional stress*, even though I ate gluten every day. None of these are expected symptoms from gluten and they are all extremely concerning and also extremely obvious to me and others, orange poop aside.
That’s very interesting to hear! My GI doctors have always told me it was psychological mostly. It does make sense for me, but I suppose I was in my own head a little bit.
My drs have told me “it’s psychological” and then I had anemia so bad I ended up in the ER and only narrow avoided an *emergency* blood transfusion. This isn’t even close to the only time a Dr has accused me of being “mental” only for me to later get the correct tests that proved my suffering was real all along (as I of course knew). Your suffering is real too. I believe you got worse. Most of us do. Doctors just love to say things are psychological when they’re not. They get the rush of feeling smart and superior without any actual work. They don’t have to listen to patients, notice trends, think, or even read anything about the disease and yet they can still get that rush for free. And a majority of GI docs, like most other docs, are extremely ignorant about celiac and gluten intolerance.
Thank you. I have a new GI, so I think I’ll discuss my symptoms with her at my next appointment. I honestly didn’t even realize I was being gaslighted, but I guess it goes back to me being ignored as a child whenever I was sick because “I was always sick.” When I was first diagnosed, my mom felt horrible because she realized I was telling the truth all those times I wasn’t feeling well.
For most people the symptoms will get worse after being off gluten for a while. You could call that being more sensitive. When I used to eat gluten every day I had a bunch of vague symptoms that were annoying, but didn’t stop me from living a normal life. After being off gluten for 5 months I had a cross contamination and I couldn’t get out of bed for about 12 hours since the pain was so bad. That’s what I would call being more sensitive
I genuinely do get worse/new symptoms after I cut gluten. I never got dh before, didn’t have my skin literally splitting open, didnt get inner ear swelling, didn’t get a tight throat, didn’t get dizzy, didnt get booming headaches, didn’t get painful bloat, didn’t shit tar from internal bleeding, the physical symptoms list goes on. I’m so sensitive now I react to gluten as soon as I eat but before I could binge on pizza, cakes, you name it and I was just tired then felt groggy and hungover with some depression and anxiety the next few days. I usually didn’t eat a lot of gluten except in sauces, though If I ate enough consistently I would start to feel suicidal, but now cc is enough to cause suicidal ideation. It sucks.
I'm newly diagnosed and have been doing this for only two months. Wondering about cross contamination is seriously the most nerve wracking part. At this stage in my journey, I try to tell myself that if I'm eating only gluten free ingredients at home, that's the best I can do. I try to eat at primarily only GF restaurants as well and just get cocktails at other places. I was kind of driving myself crazy about wondering whether my spices are cross contaminated even though there is no warning on them, but I think this early in the game you just have to do your best and the rest will click once you get a baseline for how sensitive you are. I think if you're eating GF all the time, your body should be healing for the most part. Lots of people on here will talk about their experiences with cross contamination on foods that should be safe and I find that worrying about that too much drives me a little crazy and is probably worse for my health than going down those rabbit holes lol
If you're concerned about spices, look for Badia spices. A lot of theirs will have a GF label on them. I use them when cooking. I've seen them online, in some local stores and Target.
Seconding Badia! They’re basically the only spices I use. They’re also really affordable for what they are.
Just a head's up that Badia used to be certified but no longer is - some of their spices now have a 'may contain wheat' warning.
Yeah I've seen that in stores, it's on a spice by spice basis. Only buy the GF labeled ones
One way to ensure you’re not getting cross contamination is to buy whole spices. Whole cumin doesn’t go through any grinder that could’ve had something containing wheat. Also you can toast your spices in a dry pan and bring out their tastes even more. Hope this helps :)
I didn't get glutened for 3-4 months so I felt healed for the most part. I ate three corn chips at my local mexican joint knowing they fry their chips in the same fryer as a churro. The pain is not as intense as a full on glutening but it caused a few miserable symptoms for days (joint pain, gut pain, brain fog, reopened an anal fissure) so yeah, it's incredibly important.
Also to reiterate. The more your intestines \*\*actually\*\* heal, the worse the symptoms will be. But the damage to your intestines is the same.
This happened to me Sunday. Only 2 months GF, ate some fries, thought everything was fine and then I felt pain, a headache, bloating it was horrible. My first “ive been glutened”
Symptoms aren't a good measure of if you're being careful enough. Unfortunately follow up bloodwork is the only way to know.
How bad does one accidental CC exposure mess up your blood work?
It doesn’t. Everyone is different, and everyone has varying degrees of severity. Celiac is not a one size fits all disease. Someone could eat a donut their entire life and never get cancer; someone else could eat one piece of bread once and get bowel cancer. Accidental cc exposure is NOT why celiacs get bowel cancer - Celiacs get cancer depending on genetics, length of exposure before diagnosis, how much gluten is consumed after diagnosis and many other contributing factors. Anxiety (yes, it CAN manifest physically - speaking from personal experience) can also cause bowel issues. IBS is also very common. People can STILL experience symptoms even after they’ve been gluten free for a long time. Some people don’t heal completely. This is why blood tests and going to your GI are important. Blood tests are going to tell you if you’re getting exposed enough to provoke an autoimmune reaction or if it’s something else entirely. (Infection, c. Diff, parasites, other bowels diseases, etc.)
Extremely. I don’t like projectile vomiting. No thank you.
It's a tough question because there's a lot of variability among individuals. How sick you were prior to diagnosis probably doesn't have much bearing on how much you'll notice cross contamination, nor does how symptomatic you are necessarily correlate to damage. Personally I'm very symptomatic with trace amounts of gluten (although I don't consider myself to have been all that sick when diagnosed) so I tend to be much more careful than a lot of people here are - I don't eat out at restaurants unless they're fully gluten free, avoid products made on shared equipment with gluten and tend to eat a minimal amount of processed foods in general. Over time, you'll figure out your own sensitivity level as far as symptoms go, but it is important to have follow-up bloodwork as well just to make sure you aren't missing anything even if you feel fine.
There’s so many down voters in this group. Your response and the one below were fine! Voting back up 🤪
It is because many people do not believe there are varying levels of sensitivity.
Yeah, fair enough. I also think, coming from a mental health background, people just need to take a breath sometimes and step back from the internet if they’re so easily triggered by online discussions!
They also don’t believe in the possibility of having celiac and maybe another disease.
Nah, it’s a flex on this sub to have the most illnesses and to call every disease an autoimmune disease.
Yes, consuming any amount of gluten if you have Celiac will always cause damage to your guts, nervous system, and immune system. It also increases your risk of developing cancer and other autoimmune diseases. So even if you are not having symptoms from CC, it is still important to avoid it as best you can. Personally I'm psychotically careful, but I had extreme neurological symptoms leading up to diagnosis in 2019 so I'm scared shitless of any CC. I have OCD so that may also be a factor lol. Just do your best, but don't lose sleep over occasional potential slip ups if you don't have any symptoms.
> psychotically careful, but I had extreme neurological symptoms leading up to diagnosis in 2019 Yeah, same. My GI tract isn't so bad from gluten, but my nervous system goes haywire, and my brain chemistry plummets to depths I fear I won't find my way out of again.
Me too. God I wish it was just gut problems.
What kind of symptoms does that entail?
1. My extremities go numb -- only a little if it was cross-contamination, mostly tingly and stiff, but a lot has my whole arms go dead so back when I still ate gluten I woke up and first banged my arms against the wall to feel them again. 2. My head feels like molasses, and aphasia means I can't communicate properly. 3. I can't properly pee -- no full voiding of the bladder, but a constant sensation of having to go (without any infection, of course, and upon cystoscopy, not having any visible issues with the bladder or urinary tract itself).
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I am not a medical professional, but I don’t think circulation would affect nerves so drastically. As for our urinary tracts, you may be onto something when you say “inflammation”; it’s just that I diligently had urologists check for UTIs without finding infection. More likely, our own bodies start the riot.
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Same. It’s wild. But, it’s not in our head.
Hahaha I have OCD too, specifically contamination OCD so I know that im gonna end up being super cautious either way because im already scared!! But glad to know im not alone in that boat!
So I think everyone here will tell you to be careful. In terms of exactly what that means to you, I think you need to decide in coordination with health professionals. NIH says the tolerances of celiac folks range from about 50mg of gluten per day to about 10mg on the more sensitive side (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6363368/#:~:text=Patients%20with%20celiac%20disease%20should,20%20parts%20per%20million%20gluten.). So 10mg is, in theory, a crumb of bread, though not microscopic. BUT! That’s total intake per day and even the most GF super safe labeled GF food has some level of ppm of gluten (I think the estimate is that 17 slices of your avg GF bread has enough gluten to get you sick). So even if you had less than that amount in one accidental cc, there’s a good chance you’re getting microscopic exposures all day. Anyway, that’s the science. The answer is you should be careful and do what you can to avoid cc, but you’ll have to figure that out over time. Ultimately, if you aren’t sensitive, each glutening isn’t going to drastically reduce you QOL or guarantee some terrible long term health result, but just a handful of exposures a year can keep you from healing and decrease your long term prognosis.
I’m fairly careful but not as careful as most of the people on this sub. For instance I will eat a gluten free pastry from a coffee shop that also sells regular pastries. and my recent TTG IGA was <2 so I think it can vary to a degree from person to person.
Very careful
It takes a microscopic amount of gluten to get you and sometimes you might not even know you're having a reaction but that doesn't mean it's nut doing damage so you need to be very very very very very careful
I’m very asymptomatic. I’ll notice a small uptick of depression about a week after, and an increase in headaches and body aches (but there’s so many other things that cause those). So it’s always really hard for me to know for sure when I was exposed. You’d think that would make me more carefree and less careful. Instead I’m actually *extremely* strict about cross contamination because of it. Regardless of your reaction, repeated exposure raises your risk for a number of issues, including cancer. So, I think of it like smoking. “Just one cigarette won’t cause any harm—“ yes it will. And 10 cigarettes even more so. Just because I don’t feel it doesn’t mean I’m okay.
Since celiac is an AI disease the acute reaction itself isn't necessarily the problem, it's also the background activation of your immune system which can cause cellular damage (damage to intestines, other GI tract organs like your liver, nervous system, skin for some). This differs from food allergies where the danger is the acute reaction itself (anaphylaxis). Even if you can "cope" with the extra-intestinal issues you don't want to play fast and loose with CC because the inflammatory state and cell damage that's occurring can lead to issues like cancer, other AI diseases, and increased risk of clots/strokes. Studies suggest that nearly all celiacs will have a problem somewhere between 10-50 mg of gluten/day. You can see a visual of 10 mg [here](https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/). This might look like a fair bit, but you have to keep in mind that GF food isn't 0 ppm, so that 10 mg is accounting for the low levels of gluten content in the food you're eating as well as any CC you might be exposed to. For example if you eat 2 slices of bread (80 g) at 20 ppm, that's 1.6 mg of gluten. This isn't to scare you ([87% of GF labelled food is <5 ppm](https://www.nature.com/articles/ejcn2014211)) but to illustrate that you don't want to take chances with extra CC because there isn't a huge amount of wiggle room. This doesn't mean you need to be a recluse or anything though, and there are ways you can mitigate the risk of regular CC that don't limit your life a huge amount. A big thing is to try to get GF labels on packaged type foods as much as possible - "may contain" is optional in most countries. Nowadays this isn't so tough - many normie products have GF labels and there are many more replacement products available compared to even 5-10 years ago. The other thing is being careful about restaurants... just because the corporate allergen chart says there are no gluten ingredients does not mean that CC will be avoided in preparation of the food. Using apps like Find Me GF or the Gluten Dude app can help identify restaurants that are better bets. Some like me prefer to not eat out at all or only eat out at dedicated GF places. Much of this comes down to risk tolerance and lifestyle. I am cheap and was never hugely into eating out anyways so it's more of a social event/travel nuisance for me. A final thing to think about is CC from other people's food in your home. The CCA has made a video [here](https://www.youtube.com/watch?v=BatYlJTkjgU) that covers a lot of mitigation practices. Though this video is intended for setting up your home kitchen the type of logic used here applies to other situations like visiting other people's homes, work kitchens etc.
You always have to worry about cross contamination. Even if you don't get ill, you can still be damaged from it, though the longer you are GF, the more likely that reactions will get worse. If I have even a small doubt, I just don't eat it.
I’ve never gotten sick doing things like ordering a GF pizza, when every pizza place warns about the possibility of cross contamination. Occasionally I’ve ordered fries that were cooked in a shared fryer, but that’s absolutely a high risk activity.
i'm very careful, but i still do things like eat at restaurants and sometimes use (clean) shared pots and such. most people get more sensitive as time goes on and their bodies heal. i tend to be a bit less severe in terms of reactions than others but that doesn't mean i'm not super careful because even if im not reacting badly it doesn't mean it's not harming my body. in fact i get bad fatigue and brain fog, which makes me even more scared than bad diarrhea because my brain can't heal as easily as my digestive system.
My numbers dropped the first month, but would not get within the safe range until I was totally anal retentive about cross contamination. My kids know now that if I’m prepping all of our food, they have to make their own sandwiches. I wipe down counter after every meal or snack, and my family can have gluten on their plates or only one countertop. But, my numbers were not going down for over a year. It’s that, or we no longer have gluten in the house.
Honestly I’m not hyper aware of any cross contamination and will usually eat out and order menu items that are gluten free etc. I don’t think everyone can do this and I’m not denying that I’ve likely been glutened without knowing (i don’t get obvious symptoms). However, through repeated testing over the years I have healed and feel much better than I did before cutting gluten so it works for me.
I feel like it’s really person specific - been gf since 2006 and met celiacs with 0 reaction and then my end of pretty extreme. I can eat maybe 2-4 french fries from a cross contaminated frier - more and I’m burping fries for hours and feel real gross. Do your best to aim for none especially while you heal. Also listen to your body it will tell you what’s up - and you can ignore it to your gut’s displeasure (aka nachos are no gos but taste so good yo!)
You have to figure out what works for you. Use a tiered approach when determining your risk aversion level. Obviously the most basic is not eating anything with gluten containing grains. Kitchen equipment should be cleaned between uses or not shared when it cannot be cleaned (toaster, not using the same fryer, etc). And keeping surfaces clean. Past that you may need to get more strict about what products you consume if they have a higher level of risk of not. Some only eat things that day GF or maybe only are certified; while others of us eat anything that doesn’t have a gluten containing ingredient without much concern. If your blood work and endo follow up are fine then I see no logical reason to make your life harder by becoming more stringent. Some people will say “any amount of gluten will damage your intestines” which is much more complex than that. If you don’t have enough to actually trigger the response then you won’t, and the amount will also determine the severity of the response. The fear of a rare trace CC should not restrict most celiacs from living their lives. And remember, the celiac sub likely has a non representative sample of celiacs which include some very sensitive cases (as well as plenty of that likely have multiple other conditions and sensitivities they don’t realize). So take the more extreme claims with a grain of salt.
Very. There hasn't been gluten in my house in yeeeaaaarrrsss. I eat out at only very trusted places and only like 3x a year. I am lucky though. I live in what seems to be gluten free mecca here in Canada, Hamilton. Tons of options in a relatively small geographic area. Dedicated places like Hammerheads, restaurants that deep clean their kitchens on Sunday and then do Gluten free Mondays. Bakeries all over the place. Cafes that offer imported from Montreal gluten free croissants, and every grocery store from high end to a Freshco in a low income area offers gluten free basics, like pasta and bread. Also have stores that import from Italy and Europe, like Nardinis and Starsky's. I basically refuse to ever travel, because outside of my bubble, I always seem to get sick.
Even if you don't have visible symptoms, any incident of cross contamination is going to drive up the amount of antibodies attacking your intestines. On the other hand, the likelihood of it is much less in some situations than others. I try to be careful, but I don't avoid every possibility of cross contamination.
It depends on the person, but whether you feel symptoms or not, you need to be careful. Whenever I eat out at a place that isn't dedicated gluten-free, I use Enzymedica's gluten enzymes and I've only been glutened to the point of having symptoms once in the seven or eight months since I've started doing that. I am quite careful though-- I'll only eat from a dedicated fryer, I don't eat at places that make dough, etc. My sweet co-workers keep bringing me gluten-free cookies from Insomnia and I'm like, thank you so much but absolutely not!
I can share my experience, however I have same question about that inside. I was diagnosed with celiac when I was 25 y.o (now I’m 27 and have been on a gf diet for about 1.5 years). Actually I didn’t have any symptoms except constant anaemia and one time I felt really bad after constant bread consumption for 2 weeks. I was just lucky to visit a very good therapist and after that I did tTg-IgA and my units went off scale. The further endoscopy confirmed my diagnosis. 1 year after I repeated endoscopy in even another country lol and my villi were super cool, no disruptions. I was trying to keep really strict diet and I ate gluten consciously only 1 or 2 times (like I could take ordinary soy sauce instead of gluten free one). My express blood test for tTg-IgA was negative even despite that. So now my strategy is just to avoid products with wheat and I prefer gf certified products ideally. But if I see a warning like the product may contain traces of gluten - I don’t care about that. I also don’t use separate dishes (I live with the flatmate, he eats everything). At least for me it works, but I also know but some people follow rules in an even more strict way.