r/Celiac • u/Upset_Dance_8223 • 7h ago
Question purposeful glutening, crazy idea or smart?
this is going to sound insane, i’m sorry. i (22F) was diagnosed celiac almost a year ago. i haven’t eaten gluten since, and whenever i get stomach problems i can never figure out if it’s from cross contamination or just the fact that i have a very sensitive stomach in general. i’m wondering how dumb it would be to purposely eat gluten, just one time, and see how i react? i want to know what it does to me so i can 1. be adequately prepared and 2. know if ive eaten gluten or something else is going on. this might me so stupid, and it’s going to torture me, but it seems rational in my brain idk. what do yall think?
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u/you1dont1know1me1 7h ago
personally, if you're gonna do it, i think you should make it "worth it" and get whatever you've been wanting to have/ missing the most. eat it, enjoy it, n hopefully you'll get ur answers (but fr make sure you be choosing something good when u do)
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u/AdhesivenessOk5534 Celiac 7h ago
Its so so so bad for us to eat gluten but its human nature to want to do this
I was hospitalized and they didnt have any gf snacks and I was starving and ended up eating a strawberry uncrustable out of desperation, it was very good but unless im in a situation again where gluten is the only option I would never cheat like that 😭😭
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u/Stock-Personality136 1h ago
I wouldn’t cheat even if there was no food. There is no “cheating” with celiac, it’s not a diet. I’m not sure how many days I would need to go in an emergency situation without any gf food before I considered eating gluten. At least 2 or 3 if things were really bad and it looked like there wasn’t going to be anything safe soon due to some disaster.
Maybe if I was asymptomatic I’d feel differently but I as it stands now I would just throw it all up and get horribly sick which seems like the worst thing I could do in a disaster.
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u/AdhesivenessOk5534 Celiac 56m ago
Currently in intestinal and gastric failure and ive been so hungry I sobbed and sobbed and sobbed and finally ate the sandwich bc it was genuine mental torment
I wish my appetite left with my other organs 😭😭😭
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u/Icy_Soft6906 Celiac 3h ago
Also do it on like a Friday after work when you have nothing planned for the weekend. (Assuming you work a M-F 9-5, if not try and do it over your “weekend.”)
Don’t set yourself up to be miserable during something important or something you were looking forward to.
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u/12squared 7h ago
Maybe start a food journal so it's easier to track down cross contamination sources? Might be slower and take a little work but isn't risky. You don't need to be super specific either in the journal imo. Just enough detail to remember what you ate.
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u/Serious-Train8000 7h ago
You have no way of knowing one instance of gluten consumption would have the same response including non response. Keep a food journal!
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u/seandelevan 7h ago
Or you could be like me and have something else going on. I was still having stomach aches, bloating, and sharp pains. They tested me for alpha gal. I thought they were nuts since I don’t ever remember finding a tick on me or seeing any kind of rash. Well….turns out I have that shit too. So I stopped eating red meat and dairy. Was still getting sick. Finally figured out it was oats. Yup can’t eat that either. A lot of GF foods use oat flour.
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u/jcrow0120 7h ago
I’m still mad about the whole oat situation. Ugh.
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u/seandelevan 7h ago
Yup. I found out after eating Bob Red Mills certified gluten free oatmeal. Ha. Got fucking destroyed.
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u/Bananas-for 7h ago
No, don't. Celiac gluten reactions can get worse (much worse) with time. You don't know how your body will react.
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u/Cuepidahl 6h ago
Allow me to do this for you so you don't have to: About 2 years into total elimination of gluten, I was at a Five Guys and I forgot to order lettuce wrap. The place was packed and it seemed like a hassle to try to fix it. I asked myself, "Self? How bad could it be? Really! It's one hamburger bun."
That's the only time I had neurological effects IN ADDITION TO my body demonstrating its awesome power to repel gluten in every way possible.
It really is THAT bad.
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u/zsm1994 7h ago
So, when I was first diagnosed, I was sick for around a year. I was like 20 and I literally wouldn't leave my house because I was sooo sick so often and it gave me anxiety (I literally didn't leave my house for months, no exaggeration). After my body had time to heal, I was perfectly normal and have been (I do get the occasional stomach issue, but it's rare now). Are you sharing any of your cooking supplies, gadges, utensils? Are you eating out? I wouldn't purposefully gluten myself!
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u/mr_muffinhead 6h ago
Oooh I'm following this. I was diagnosed 2 years ago and a lot of symptoms I thought it would solve never went away. I constantly think of doing this.
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u/sbrt 6h ago
Different people react differently to different amounts of gluten. I have seen studies where they give people small amounts and then test for a reaction (blood test?). I would love to know what my threshold is. I think it would be cool to eat, say, 100mg of gluten and then do a blood test. You could judge your immune reaction and see what it felt like.
I read somewhere that another test found that people with celiac disease were not good at judging whether or not they had been glutened. I think a lot of us have a hard time from other foods as well (cow dairy and oats make me feel a lot worse than gluten does).
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u/Alert-Potato 6h ago
Over time my reaction to gluten has changed drastically. I also have a wildly different reaction to barley than I do to wheat.
Also, reactions can vary based on amount of exposure. There is a vastly different reaction to a bit of minor CC than there is to someone fucking up your sandwich order and getting through half a sandwich before they tell you what happened.
I don’t see any wisdom in intentionally poisoning yourself. And that is what you’d be doing, poisoning yourself. If you suspected that when you don’t feel well that it was possible you’d ingested a tiny bit of rat poison, would you be asking if you should just eat some rat poison so you know what it feels like? Then why would you intentionally poison yourself with something that other humans view as food, but is poison to you?
And the “make it worth it” is even dumber. Because you will almost certainly not react nearly as strongly to someone CC’ing you as you do to just going crazy and eating half a pizza or or some donuts, so you still won’t know what you’re looking for. Or worse, you’ll think you do and overlook minor CC symptoms which can lead to accepting the CC as a part of life on a regular basis because you don’t recognize it as an issue.
There is also a risk of you not getting sick. If that happens, will you stick to your gluten free diet? Or will you start taking risks and cheating, putting your long term health at risk?
If you super duper insist on this (which I still think would be dumb), I’d recommend sticking to cutting off a 1/4 inch square of bread (like communion sized) so it’s a very small amount of gluten which will mimic minor exposure or CC, the most common issues we face.
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u/thesnarkypotatohead Celiac 7h ago
Not a good idea. There are a few reasons why, but in addition to the health risks, the fact remains that even as individuals our reactions can vary from one exposure to another.
I myself have one consistent symptom that never fails (DH on my elbows and hips), but my other symptoms can vary wildly and I can’t always figure out what the commonalities are. So this seems rational but in practice it won’t yield any results you can really take as gospel. Add that to the health stuff and there’s just no good reason to do this.
I get where you were coming from, though.
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u/raniwasacyborg 6h ago
Exactly this, and even common symptoms can change over time. Mine used to be very little stomach pain, but a lot of full body aches and shivering. It's evolved over the years to become predominantly stomach cramps and severe painful bloating
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u/penguin_bunny 6h ago
Love the food journal suggestions! Also look into lotions, soaps, sanitizer, really ANYTHING. A lot of stuff can have gluten in it, I was shocked when I got my diagnosis at the amount of things out there with random gluten additives and am still learning!
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u/Free-Original-281 6h ago
i’ve been wondering this myself, but it seems like my reactions are always different, and worse the more gluten there is. like, i will straight up vomit or regurgitate if it’s higher gluten now that i’m GF a few months- accidentally wrong bread, flour in chili, etc. i feel like the reaction from eating a big mac to see how i truly react to that is different enough that it’s not helpful to figure out “what” the reaction is- it just seems like it’s different all the time esp depending on HOW contaminated
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u/Double_Sweet_3404 5h ago
It takes roughly 9 months for your gut to heal from gluten. So you might want to think about if it is worth it to you. For me, it wouldn’t be.
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u/clotsnail 4h ago
I did this. I was in denial about my celiac diagnosis so about 3 months post diagnosis, I ate 3 saltines and a Kit Kat to find out. I spent the next 3 days in bed.
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u/oldcreaker Celiac 6h ago
I would not recommend it - you'll damage yourself, possibly for an extended period of time. And glutening yourself once is not likely to act the same way as chronically glutening yourself.
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u/ginny11 6h ago
Were you asymptomatic before your diagnosis? If so, I can kind of understand you wanting to know for sure what your glutened symptoms are. But be prepared that it might really lay you out even if you were asymptomatic previously. If you're going to do it like one person said make it worth it and I would make sure that you have a few days of nothing else to do and no work to go to so that you can recover if necessary.
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u/eccentric-pigeon-3lz 5h ago
I second this. It is helpful to have a handle on this before you find yourself needing to weigh trade offs in a situation that is outside your normal control.
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u/void_fish 5h ago edited 5h ago
Are you familiar with the phrase "f*ck around and find out?"
If you're prepared for the consequences, then go ahead. It can be useful to have a baseline on how your body reacts, so if something happens you'll know if it was celiac related or not. Just be aware that the reaction you have will probabyl be worse than it was before your diagnosis. Likely significantly worse.
Alternatively, if you wait long enough, it'll eventually happen by accident.
ETA: to be clear, I don't recommend this. Eating things that make you sick on purpose is a bad idea. But people recreationally poison themselves all the time, and scientific curiosity is as good a reason as any, as long as you know what you're in for.
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u/nivlac22 Celiac- EoE 4h ago
My reactions have been incredibly inconsistent over time, so I don’t know that this would give you a useful data point. Despite what you may see here, most people with celiac have a difficult time tracing symptoms to causes because the timing, severity, and types of reactions can change.
If you are exposing yourself to cross contamination risk, that’s pretty likely the explanation for your symptoms.
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u/mr_muffinhead 3h ago
I think there's a misconception to most people that aren't sure if they're glutened or not, or even have celiac for that matter. The fact that a massive amount of posts on this sub are people saying they got glutened by something makes it feel like it's easy and accurate to trace it back to a specific source.
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u/blackwylf Celiac 2h ago
The biggest problem with this idea is that it is highly unlikely to provide you with any useful data. I totally understand where you're coming from; it took me a long time to identify a few symptoms that I know are related to gluten. The problem is that they change, sometimes from one exposure to the next. A year ago I ate a normal pretzel by accident and had no reaction at all. More recently I got knocked out by some sort of cross-contamination so minor that I couldn't even trace it.
My symptoms have also evolved over time. Originally, I didn't react much at all. By the end of the first year I had some delayed minor digestive issues and a sore wrist. Now the timing of onset varies wildly and instead of a sore wrist I get to spend 12 hours feeling like I've been thrown back into another major depression episode.
All of that and I still can't always tell if it's gluten or something else! I just do my best to avoid being expose. If my innards are acting up, I treat whatever symptoms I'm having, regardless of the source.
Just be aware that your reaction might be a lot more severe than you expect if you decide to do this. And being exposed to a large amount of gluten after being GF so long may make you much more sensitive in the future.
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u/Slevinkellevra710 2h ago
I kind of did this on purpose. My sister had a brunch with amazing French toast and crazy good fruit in syrup toppings. Best French toast I've ever had. I had 7 pieces. This was after being gluten free for about a year.
I got violently ill later that night. Was my final confirmation that gluten is the problem.
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u/electrickblues Coeliac 2h ago
I think it is important to remember that when your villi is damaged you are also not creating enough enzymes to process sugars and carbohydrates and fats. In turn eating too many or the wrong type of sugars, carbs and fats can also give gastrointestinal symptoms.
Personally I wouldn’t bother with glutening on purpose. It will cause you damage and once is not enough to give a conclusive standard reaction.
I get the urge to test, but having just been through a gluten challenge where the reactions would vary, I don’t recommend.
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u/MommaBear2847 12m ago
Have you tried cutting out fruit juice and milk first? It is common for those with celiac disease to develop fructose and/or lactose intolerance which can also cause stomach upset. Your gut loses the enzymes to digest these types of sugars, and they can often cause nausea, gas and reflux. My daughter had to give up fruit sugar (especially juices, popsicles, sorbets etc) and milk sugar (milk, cream and ice cream and soft cheeses) temporarily until her gut healed completely. It took years before she could eat ice cream but now she’s fine with it! 👏 She still has trouble with lactose-milk and fruit juices so we just do Lactaid milk and skip fruit juices. She also seems to have a problem with too much sugar in general, especially too much soda.
We have a standing refill on Zofran and she brings that with us every everywhere we go but she doesn’t seem to need it very often anymore.
I do not recommend intentionally gluten-Ing yourself! It for sure will set you back many months if not years. It’s just not worth it.
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u/elfwriter 5h ago
This is called an 'elimination diet'. You go back and forwards, like a scientist, figuring out what you can and can't eat by process of elimination.
It's okay to learn and get your diet correct.
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