One year gluten free and my daughter finally feels like herself again
I want to share this because when we were in the thick of the diagnosis I searched everywhere for posts like this and could never find enough of them. Our daughter was diagnosed with celiac just before her 9th birthday. The year leading up to it was genuinely one of the hardest stretches our family has been through. She was exhausted all the time, had stopped growing the way she should have, and had these episodes of stomach pain that would just floor her. We went to so many appointments. We felt like we were chasing something invisible. She turned 10 last month. She has been strictly gluten free for just over a year now. And I am sitting here tonight watching her do a cartwheel in the living room and honestly I had to come write this down somewhere because I almost cried. The change did not happen overnight. The first few months were so hard, mostly for us as parents trying to learn everything, cross-contamination, reading labels, explaining it to her school, talking to her friends' parents. She had a few accidental exposures early on and it was heartbreaking every time. But her care team was with us the whole way and we just kept going. Around month four or five she started sleeping better. Her color came back. She started asking to go to the park again. Little things. By month eight her growth had caught back up. Her pediatric GI team said her bloodwork was moving in the right direction. She told me recently that her stomach "just feels quiet now" and I think about that phrase a lot. I know this community has a lot of people who are earlier in the journey and I just want to say: it can get to a good place. Keep working with your care team, be patient with yourselves, and know that the learning curve does flatten out. We are not perfect at it but we are so much better than we were. Happy to answer anything if it helps anyone.
Replies · 11
okay I needed this tonight specifically. one of my twins had her GI follow-up today and I left feeling like we are nowhere near the light at the end of the tunnel. she is only 2 so the diagnosis journey is still so messy. thank you for posting this.
Two year olds with any GI diagnosis is just a different level of hard. You can not really explain it to them yet. I hope today's appointment at least gave you something to hold onto even if the answers aren't clear yet. Sending you a lot of patience.
right? she cannot even tell me what hurts or where. I am basically just watching and guessing constantly. and her twin is completely fine which makes everything even more confusing because they eat the same things. well, ate. we are separating a lot of foods now and that is its own chaos.
Aylin (RN) here. I read this twice. Thank you for writing it out so carefully. What you described about the slow timeline, the accidental exposures, the bloodwork gradually improving, that tracks with what families generally experience. The gut lining takes real time to heal and the first several months can feel like you are doing everything right and seeing almost nothing for it. Parents need to hear more often that that period is normal, not a sign that something is wrong with how they are managing it. The phrase your daughter used, "my stomach just feels quiet," that is such a good description of what remission can feel like for kids. They often do not have the words for it until the noise stops. Just want to add for anyone reading: if you are in those early months and struggling, please keep that communication open with your own pediatrician and GI team. Every child's healing timeline is different and your specific team knows your child's picture.
The twin dynamic is genuinely one of the more complicated situations I see families navigate. Genetics plays a role in celiac risk, but having one twin affected and one not is not unusual at all. It does not mean anything was done wrong, it is just how the condition can present. What you are doing by separating foods and working with the team is exactly the right approach. It is a lot to manage with two little ones though, I won't pretend otherwise.
Something I want to add that I forgot to put in the original post. The cross-contamination learning curve was honestly where most of our stress lived in the early months. We were scared of our own kitchen for a while. What helped us was just committing to one slow weekend where we went through everything, got a few dedicated cutting boards and a separate colander, and that was kind of it. It stopped feeling like a minefield after that. We also have a son with Crohn's so our house was already navigating a lot of food complexity and I thought adding celiac would completely break us. It did not. You adapt more than you think you will.
the colander thing. I genuinely did not think about that. we have one colander in this house and it has definitely touched pasta. adding that to the list right now.
The kitchen transition is such a real thing and families don't always get enough support on the practical side of it. General guidance from GI dietitians tends to be really helpful here if your team has access to one, just wanted to mention that since not everyone knows it is something you can ask for.
Yes, we actually did get a referral to a dietitian early on and I cannot recommend asking for that enough. It helped so much to have someone walk through the practical stuff with us rather than us piecing it together from google at 11pm.
Coming back the next morning because I kept thinking about this post. Asked our GI coordinator today about a dietitian referral. Did not even know it was something I could just ask for like that. Thank you. Genuinely.
That makes my whole morning. Good luck. You are doing great even when it does not feel like it.