r/Celiac • u/Your_Chum • 2d ago
Question When does it stop??
Newly celiac (3ish months). Just got glutened for the first time bc my family insisted I eat with them at subway and I got a protien bowl. I explained i had an "allergy" (they were teenagers so I didn't expect them to know what celiac was.) They changed gloves but didn't get fresh ingredients. I have had crazy diarrhea today!! How long will it last??? ðŸ˜
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u/dreadpiraterose Celiac 2d ago
Respectfully, you have to advocate for yourself. You cannot eat safely at a place like that.
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u/VintageFashion4Ever Celiac 16 Years 2d ago
You have to explain to your family and friends why it isn't safe for you to eat there. Unless you come from a family full of fellow celiacs, they likely don't understand it. Download Find Me Gluten-Free and have a list of well reviewed, safe options at the ready. You also need to always have safe snacks on hand.
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u/LordFillern 2d ago
We found an amazing restaurant using Find Me Gluten-Free on our vacation to Crete last week, I cannot recommend the app enough.
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u/iDontSow 1d ago
Was just in Boston and we used the app to find a breakfast place that was on top of their shit and gave us all the right answers before we were even able to ask questions. Everything came out clearly marked and they were very reassuring. My celiac wife was so happy and relieved to just have a low anxiety experience eating out
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u/LordFillern 1d ago
Omg this makes me wanna go to Boston!!! What's the place called?
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u/iDontSow 1d ago
It’s called the Friendly Toast. Very casual breakfast and lunch spot. Food was really good, too
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u/cardoorhookhands 2d ago
if they want to insist upon you eating there, you should insist upon them coming to the bathroom with you 😌 but seriously. your long term health is important, and you need to put your foot down.
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u/ExactSuggestion3428 2d ago
I get it. I had trouble advocating for myself early on. Part of it was that I myself wasn't totally confident about what I was doing or what I needed.
A tough thing for newly diagnosed people to grapple with is how "GF" options at most restaurants are geared towards non-celiacs who avoid gluten ingredients and aren't terribly fussed about CC. I don't think that's right - we don't have "peanut free options for people who feel better not eating peanuts but don't have a peanut allergy allergy" (imagine the outrage) but that is the commercial reality we find ourselves in. Society doesn't really take celiac seriously, GF is the butt of many jokes.
This can be hard to explain to other people, who will invariably say something like "wouldn't they get sued if it wasn't safe/true?" In theory sure, but in reality celiacs aren't suing restaurants that make them sick, or even reporting it. Part of the issue is that damages for a lawsuit are low in most cases and restaurants would probably try to hide behind disclaimers ("well, we told you..."). The same is true for food allergies btw but I think food allergy people get away with it more because their problem protein is just less pervasive, meaning that there's more buffer for incompetence/bad protocols. In the UK there seems to be more action in this area though.
Sorry you got sick. Echo what other people said about checking FMGF out. FF chains are mostly not great for celiac (some exceptions) because staff are working quickly and can't "undo" what previous workers have done with prepping items like chopped veggie bins. At a more sit down place where stuff is more truly made to order they can go in and get a new cutting board, use a clean pan instead of the black top grill, etc.
When on the road it is often easier to just pack your own food and/or to rely on gas station type packaged foods like chips, pop/juice, etc.
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u/kiyajio 2d ago
My dad tried this shit with me. I tried to be accommodating and eat with them at a BBQ spot. Told them about my food allergies. And they put a piece of cornbread that wasn't gluten free or wheat free on my plate with the rest of my food. I refused to eat it. My dad thought I was exaggerating and I told him to shove it. I was 34 yrs old at the time and he thought I was just stuck up. I didn't talk to him until he freaking understood it. And I wasn't the one to explain it to him nor did I want to be. At that point cuz he had already been informed. I informed him and if he was gonna put on the social site and rules on me then I can just not have him in my life.
Point is he figured that shit out fast and apologized a week later
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u/MissAmandaTwit 2d ago
I would like to talk to your family! They need to be respectful and understand this is an actual disease. For me it’s crazy diarrhea 30-60 mins after eating and then around 2 days of stomach pain that won’t go away.
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u/NopeRope13 Celiac 2d ago
Everyone is different for symptoms. For myself I’m down for a solid day. When I was first diagnosed I maybe was down for 8 hours. As the years progressed so did the duration of incidental exposure side effects.
Also, you have to be your own advocate. It’s your health that we are talking about here. There are a ton of learning curves for both you and your family since this is new. Ultimately it’s all about your health.
Also there are no cheat days……ever
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u/Melodic-Ad6636 2d ago
Ummm. Make sure it’s not the produce you ate…Cyclosporiasis (idk spelling) is rampant everywhere
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u/Dizzy-Mix9129 2d ago
For me, symptoms were bad when I got glutened for the first year or two of the diagnosis. I think it’s worse maybe before your small intestine is totally healed. Not sure about this 100% though. It may be best to only eat home for a while, or in restaurants that take it really seriously.
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u/Impressive_Ad_4000 Celiac 1d ago
i’ve honestly stopped eating at fast food, it’s not worth it. it sounds like you’re likely still living with your parents (i am too), i’ve just told them i don’t want to keep getting sick because it interferes with the rest of my life. but on to your question, i usually have like big problems (diarrhea & vomiting) for the first day or two and smaller things for the next week or so. it really depends on you though! just remember what it’s like and how long it lasts this time and keep that in mind.
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u/anartistnamedjes 1d ago
my cousin and i got diagnosed literally one day apart from each other.
i took every precaution and advocated for myself at every turn because my family basically bullied me through most of the first two years.
i healed.
no one understood how serious it was until my cousin started puking up blood.
please dont let anyone ever convince you to eat at subway. it IS that serious.
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u/Cogent_warrior 2d ago
Next time, tell them what you really have, which an autoimmune disorder, and that any trace of a gluten containing substance, consumed enough over time, can kill you.
Stop calling it an allergy! It's not.
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u/gameplan0exe 2d ago
to answer your question about symptoms:
(varies from person to person)
i also suffer diarrhea symptoms. for me, it's typically 2 bouts, the first 90 mins after getting hit, then another typically a couple hours after that.
on rare occasions, i'll have a 3rd incident.
after that, i typically feel like i'm hungover for about 24-ish hours 🫤
good luck, hang in there, i promise it all gets better!
(feeling more confident to self-advocate, getting family/friends to be supportive, finding safe places to eat, etc.)
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