Crohn's diagnosis at 13 and I don't even know where to start with food
We got the official diagnosis two weeks ago after almost a year of back and forth with GI. I knew it was coming but it still hit differently when they actually said it out loud. My son is 13 and he is already at that age where everything about his body feels like a source of embarrassment, and now we are adding this on top of it. The GI team gave us some general starting points about nutrition but honestly I left that appointment feeling more overwhelmed than when I walked in. There is so much conflicting information online. Some sites say go low fiber, some say high fiber, some say certain foods are universally bad, some say it is completely individual. I don't even know what question to ask first. The thing that worries me most right now is school lunch. He refuses to bring food from home because he doesn't want to stand out. We live in a mid-size town so the school cafeteria is pretty standard. He had a really rough flare-up in November after what we think was a greasy pizza day at school, though we can't be certain that was the cause. He has become so anxious about eating at school now that sometimes he just doesn't eat until he gets home at 3:30. I am trying really hard not to make food into a source of stress or shame for him, because I know he already has enough on his plate emotionally. But I also feel like I'm walking on eggshells every meal trying to figure out what is safe and what isn't without making a big production of it. My husband thinks I'm overthinking it and that we should just wait for more guidance from the GI team. Maybe he's right. I don't know. Has anyone been through this with a kid this age? How do you handle the school piece? And how long did it take before you felt like you had some kind of handle on what foods were triggers versus just noise?
Replies · 10
First, I just want to say that what you're describing, that feeling of leaving the GI office more confused than before, is so common it almost should be on the discharge paperwork. The information overload is real. We don't have Crohn's in our house but I've done a lot of reading because my 4 year old has some overlapping gut stuff and I've gone down a lot of the same rabbit holes. From what I understand, and please lean on your actual GI team here, the fiber question is really individual and often changes depending on whether there's active inflammation or a calmer period. So the online advice contradicting itself might actually be two people describing different phases of the same condition. That distinction might be worth asking your son's doctor to spell out specifically for where he is right now. The school thing sounds genuinely hard. A 13 year old not eating until 3:30 because he's anxious is its own issue on top of everything else. I wonder if his GI team has a dietitian attached who works with kids his age? That might be a different conversation than the medical one.
Coming back because I thought of something. A food and symptom journal, even a really simple one, helped us so much just in terms of having something concrete to bring to appointments. Not to diagnose anything ourselves but because the GI team can actually see patterns you might not notice day to day. Even just jotting down what he ate and how he felt a couple hours later. I know a 13 year old probably won't do it himself but maybe you could do it quietly on your end for a few weeks.
The school lunch thing made my stomach drop a little. My kid is only 5 so we're not there yet but I can already feel how that's going to go eventually and it scares me. Skipping lunch entirely sounds so hard on his body AND his mood. Does the school know about the diagnosis at all? I don't know if that opens any doors or if that would make things worse for him socially.
We told the school nurse and his homeroom teacher but he specifically asked us not to tell anyone else and we are respecting that. The nurse has been kind about it. There is technically a plan on file for him to use the restroom without raising his hand, which matters a lot to him. But the lunch piece we haven't figured out. He won't bring a lunch box because he says it looks babyish. I've been trying to think of options that don't scream 'special diet' but honestly I'm stuck.
ok so I have a 2 year old and zero firsthand experience with any of this so take my perspective for what it is, which is basically nothing useful on the Crohn's side. but the part about your husband saying you're overthinking it. I hear that dynamic a lot and it makes me feel a certain kind of tired on your behalf. sometimes the other parent thinks 'not spiraling' and 'not worrying enough' look the same from the outside and they really aren't.
That is exactly it. He's not dismissive, he's actually really involved. I think he just copes by trying to stay calm and I cope by trying to understand everything. Both of us want the same thing we just get there differently. Most of the time it works. This week it has been a bit of a friction point.
The 'not making food into a source of stress' thing is so hard. Like that is the goal every single day in our house too and some days I nail it and some days I very much do not. With a 5 year old the stakes feel different than with a teenager but the underlying guilt about every meal is something I recognize completely. You're clearly thinking about all the right things even when it doesn't feel like it.
the thermos thing. I'm just going to say it. does your son drink anything from a thermos or an insulated cup? because depending on what works for him food-wise, some warm options travel in a thermos and look like literally nothing, just a drink container. no lunchbox required. probably a dumb idea given I don't know his specific situation but sometimes the packaging solves the social part even when the food is the hard part.
This is actually not a dumb idea at all. He carries a water bottle every day already so a thermos wouldn't look out of place. I'm going to think about this. I would need to figure out what he can actually eat comfortably right now but as a format idea this could really work for getting around the social piece. Genuinely hadn't thought of it that way.
Checking back in to see how you're doing. The next GI appointment, if you haven't already, maybe go in with a written list of questions specifically about what a 'safe day' looks like for him food-wise versus a flare day, and ask directly for a referral to a pediatric dietitian. Especially one who has experience with IBD in adolescents, that combination of age and condition really is its own thing. Sending you a lot of patience for the weeks ahead.