Helping child go strict gluten-free and concerns about growth/height

[KimMS]

Hello,

My daughter (almost 13) was diagnosed with celiac 1.5 years ago. I also have celiac and gluten ataxia so we are on this journey together. In another post, I mentioned how my AGA IgA has not really gone down even though my ttg IgA is down in normal range, and a biopsy one year ago showed my villi were healed/basically normal. My daughter's GI is concerned that her antibody levels are not going down fast enough (they dropped drastically the first year and she grew three inches, but they have slowed the past 6-9 months and her growth has plateaued). Doctor is concerned that she will not grow to her full height if she doesn't get her levels down as low as possible before her growth plates set).

It seems the main culprit for both of us is eating out. We are very careful, but I did begin to eat out more when she was diagnosed b/c I didn't want to unnecessarily restrict her (esp. socially), and the celiac nutritionist agreed. But now we are facing the reality that we need to redouble our efforts and only eat at home and possible dedicated gluten-free establishments. This is sad, but her health and growth are worth it (btw, she has been symptom free this whole time, so we thought we were okay, but the bloodwork tells a different story).

My questions are:

1) What are ppl's experience with children hitting a growth spurt after going gluten-free? Is this likely that she will grow more if we get her levels down?

2) After her window of growth closes (growth plates set), is it possible for her to eat out again (still being extremely careful) and monitor with bw and possibly repeat biospsy if needed? Her growth is crucial right now, so that is our focus, but I'm wondering if she will be able to expand her eating options at some point when she is older or if she will have to stay this strict for life.

3) What recommendations do you have to navigate this time with an almost teenager (both navigating social things, parties and making sure she has adequate nutrition as she can be picky). I know she can bring her own food to events we anticipate (lots of prepping ahead which makes me tired ::sigh::). But the hardest thing is the spontaneous times where we can't prep ahead. I am concerned about her getting enough variety in her diet and the nutrients she needs (she loves rice and gluten-free pasta - basically rice - but these have little/no nutritional value).

[Scott Adams]

It sounds like you and your daughter are navigating celiac disease with a lot of care and dedication, and it’s wonderful that you’re prioritizing her health and growth during this critical time. Since her antibody levels and growth have plateaued, tightening up her diet by avoiding eating out (except at dedicated gluten-free places) is a smart move—even if it’s challenging socially. Many parents of celiac kids report significant growth spurts once gluten exposure is minimized, so there’s hope she’ll catch up if her levels improve. As for the future, while her growth window closing may reduce some risks, celiac is lifelong, and staying as strict as possible will likely always be best to avoid long-term complications, even if occasional cautious outings become manageable later.

Navigating this with a teenager is tough, especially with spontaneous social events. For unplanned outings, keeping safe snacks (like GF protein bars, nuts, or fruit) in her bag or your car can help. To boost nutrition, try sneaking in variety where you can—like lentil or chickpea pasta instead of rice pasta, or adding veggies and proteins to her favorite dishes. Involving her in meal planning might help with pickiness, and connecting with other celiac families or support groups could provide social strategies and emotional support. It’s exhausting, but you’re doing an amazing job—your efforts now will set her up for a healthier future. Hang in there!

[KimMS]

Thank you! This is very helpful. Quick followup: what is your recommendation re: gluten-free prepared foods (labeled gluten-free or certified gluten-free) during this time of being more strict about eating gluten-free? Is it necessary to eat only whole foods prepared at home, or is it safe to include prepared / packaged foods in her diet (I'm thinking particularly of snack foods)?

[Scott Adams]

This varies a lot from person to person. I include foods that are not certified gluten-free but are labelled "gluten-free", while super sensitive people only use certified gluten-free. Both types of products have been found to contain gluten, so there are no guarantees either way:

It you are in the super sensitive group, eating a whole foods based diet where you prepare everything is the safest bet, but it's also difficult. Eating out is the the most risky, even if a restaurant has a gluten-free menu. I also include items that are naturally gluten-free, for example refried beans, tuna, pasta sauces, salsas, etc., which have a low overall risk of contamination.

[KimMS]

Thank you! Very helpful.