A mile high gluten free meal!
I wonder if anyone can give Amy some advice. Her 11 year old daughter is getting ready for her first trip away from home, by herself. To add to the stress of this, her daughter also has celiac disease. What would you do if you were in Amy’s position?
Amy’s story –
This summer, 11 year-old Laura will be attending sleep away camp for the first time. Â Several reasons make this trip a unique one. Â First, Laura was diagnosed with celiac disease in 2010. Â Second, the camp (which is an ordinary camp, not a gluten-free camp) is a month-long. Â And third, its location is in Reggio Emilia, Italy, near Bologna.
Laura is traveling with CISV, an international peace organization that focuses on developing globally-minded leaders and building cross-cultural friendships through camps and programs for children and young adults. Â She is one of four American delegates to a camp that will bring together representatives from 15 countries for the month of July. Â The students stay mostly at the camp, with two weekends spent with Italian host families, and two excursions to see the area in which they are staying.
In addition to the anxiety of going away so far from home, Laura’s parents are trying to prepare for her dietary needs. Â Her celiac disease is well maintained under the strict gluten-free diet which is currently tightly controlled by her mom and dad. Â As for anyone with celiac, controlling the diet at home is much easier than when out and traveling. It’s hard and unfortunately, gluten happens.
As part of the interview process for this camp selection, Laura attended ‘mini-camp’ for a weekend near home. Â Her mom worked with the camp manager and caterer to carefully review and adjust the menu and preparation, took gluten-free foods just for Laura, and drove the kids to the camp to make sure that she could speak in person to the adults in charge. Â Despite all of this, and despite the best of intentions of everyone involved, Laura was still served Rice Krispies ‘off menu’ and got sick.
Trip preparation has to shift to teaching Laura to advocate for herself to adults, which is very difficult for an 11 year-old to do. Â This is different than living life as an adult with celiac making choices and decisions regarding food for yourself.
So add being a child traveling independently (with an adult leader) to the problems that all celiacs have:
- How do you prepare for traveling and all of the unexpected issues that come along with it (no availability of gluten-free foods; lack of space for carrying too much; etc.)?
- How do you ensure that the campsite can and will accommodate the dietary need?
- How do you educate the camp staff about celiac when you don’t speak their language? Â Granted, this is Italy, so there may be more awareness.
- How do you educate two different host families and ensure their willingness and ability to accommodate the dietary restrictions for a weekend?
- How do you craft a plan in case of accidental ingestion when campers can’t have cell phones or computers, and we are completely reliant on the adult leader?
- And how do you empower an 11 year-old to advocate for herself when she has no ability to buy her own food?
Come to think of it, are we nuts to let her go??? Â I may actually just buy an open-ended ticket to Bologna right now! Â Let me know your honest thoughts about this. Â We are really struggling because we want the world to be open to Laura, and we’re trying not to keep her in a bubble. Â We don’t want celiac to limit her in any way, or for her to feel limited or defined by it. Â How do you do it???
Amy would love to hear your thoughts and any advice you may have to give her? Any ideas at all and be honest..
Gluten Dude
Apr 10th, 2013There are so many levels to this question. I’ll just stick to the gluten-free part of it.
When I was 11, I was the last person to stick up for myself, so I would have had a real hard time telling people my food issues. Perhaps Laura is more confident than I was at that age. Only her Mom knows this for sure.
I would think the camp could maybe handle it, but two weeks at a stranger’s home…that’s a tough one. You can’t expect them to totally understand what 100% gluten-free truly means.
To her Mom, I would say this: Your intentions are awesome, but listen to your gut. If it says it’s not right at this time, then it’s probably not right. 11 is awfully young and she’s got her whole life in front of her.
My two cents. I hope it works out ok for everyone.
Amanda
Apr 10th, 2013I’m not a parent, but my first instinct is to let her go. What does Laura think about it? Is she concerned? Growing up with severe food allergies, environmental allergies and asthma made traveling difficult but my parents allowed for it. Sometimes I got sick and had to come home but for international travel, we just did our absolute best to prepare. The best way to get Laura to advocate for her own health is to put her in a position to start doing so. I think it will be a great experience. There may be some times where she will get sick, but it happens. Even as adults, we try to avoid it to the best our ability, but we can’t completely control it unless we stay in our houses all the time.
Just my two cents 🙂
Emma
Apr 10th, 2013Will you be able to contact the adult leader and discuss it with them in advance? Generally though Italians are very good with celiac disease, so as long as Laura learns the (simple) phrases to explain it to them she should be fine. Also, pharmacies are the place to go to buy gf items, if she gets the opportunity (or needs to advise anyone else where to go).
Erin
Apr 10th, 2013I have Celiac Disease and started going to sleepaway camp when I was 12. My mom spoke to the camp cook and nurse before my time away at camp. Ultimately, it was up to me on a daily basis to make my food decisions and to ask the cook if what I was eating was safe or not. I was my own advocate for all of my food choices at the time. At 12, I believe I was mature enough to engage in this conversation with my counselors, cook, and nurse and so did my parents who sent me to camp. 11 does seem a little bit young to me to send a child overseas alone but if this 11 year old is mature enough to do the same thing, I think that she should go.
Additionally, this camp is in Italy. I found there was a lot more awareness and availability of gluten-free food in Italy than there was in the US. If the parents engage the camp as well as the host family starting NOW, this will help educate them by the time this child goes away for the summer.
Yes, it is possible that this child might ingest gluten away from home so it is also important to educate on how to deal with a possible glutenting of their child. Let’s hope they never have to deal with this though!
Sian / GF Mrs D
Apr 10th, 2013This is so fascinating, as the Dude says, there are many levels to this question.
My first thought on reading this question is that no mention is made of what Laura feels about the trip and what concerns she may have, it’s all about what Amy (the mother) thinks. Appreciate this may have been edited out for purposes of the blog post but firstly I think Amy needs to sit down with Laura and talk honestly with her about any fears she may have. She should also talk through situations that might occur (e.g., Laura’s served something which she thinks may contain gluten, she’s at a meal in home or restaurant and there are no safe options for her but she’s hungry, or the airline doesn’t load her GF meal etc) and ask Laura to talk through what she’d do if that happened.
On a practical level, I’d also do the following.
1. Speak to the camp coordinators and find out if any of the host families are either coeliac or familiar with coeliac disease. Awareness is very high in Italy (all kids are tested for coeliac) so chances are either one of the families might be coeliac or have a family member who is and perhaps Laura could be placed with them
2. Take translation cards into Italian of what can / cannot be consumed. These will be useful in restaurants too
3. Laura should learn a little Italian – just saying “senza glutine” is often enough to get people to point out what is / isn’t suitable to eat although clearly this doesn’t address cross contamination issues
4. Research where the shops / pharmacies are in the towns Laura will be to stock up on gluten free snacks
5. If this isn’t already the case, Amy should spend some time explaining how she prepares dishes in the house and the foods which may contain gluten as well as common causes of cross contamination in the kitchen
I think if Laura is mature (even for 11 years) and her Mum works hard to prepare her in a positive way for the sorts of situations that might occur and how to deal with them, there’s no reason why she shouldn’t go.
I know 11 is young but I started going to France & Germany on school trips and language exchanges when I was that age. Appreciate the distance is less and at that stage I didn’t have intolerances to deal with when I stayed in host families but I can still remember the excitement and sense of adventure going away without my parents gave me. It made me super resourceful (e.g., aged 12 I took one of my classmates to a police station to report in French he’d had his bag stolen. I can’t imagine what the gendarmes thought of that, ha!) and made me think laterally about how to solve problems because I was met with unfamiliar situations in a foreign place. These are key life skills.
I know I’d be terrified if I were Amy about letting Laura take the trip but I also know that I’d want my kids to take adventures and see the world just as my parents never held me back. As a parent, however, I’d make sure I helped  Laura as much as possible to prepare for the trip with the understanding that if Amy wasn’t convinced Laura was prepared to put in the advance effort, she wouldn’t be able to go.
Very interesting question, though. I really hope Amy keeps you updated on how this progresses!
Laura
Apr 10th, 2013Thank you so much for your responses, everyone! I’ve sent Amy the link to the post so I’m sure she will appreciate all your thoughts and advice.
Katie
Apr 10th, 2013I would just second the fact that Italy is VERY Celiac-friendly. Every restaurant I went to in Rome knew exactly what I meant when I said Celiac or gluten-free and many offered gluten-free pasta (which was WAY better than any I’ve had in the US). The resort I stayed at in Assisi offered a huge variety of gluten-free packaged goods for breakfast (crackers, muffins, etc.) and every grocery store I visited had a good selection of gluten-free products. In short, it was far easier to eat gluten free in Italy than at home in the US.
Jen Brown
Apr 11th, 2013My young celiac daughter is 6 years old so I haven’t had to deal with anything like this…yet.
Assuming that Laura is happy and excited about going on this trip, I think her mom is on the right track to let her go (while also figuring out every little thing she can do to help her prepare).
In addition to the suggestions already made, if I was Laura’s mom, I would do these two things:
1. Find someone associated with the camp in Italy who is versed in “gluten-free” and is willing to be an on-the-spot, go-to helper for Laura. As many have said, celiac disease is more widely understood in Italy. With any luck, there is even an adult leader with celiac (or with a close relative with celiac).
2. Arrange to have shelf-stable gluten free supplies mailed to the camp in advance for Laura (breakfast cereal, bread rolls, cookies and crackers). This will empower her to take charge of her own food if she needs to. For example, if the cooks screw up the first night or one of her host families doesn’t “get it,” she dip into her stash of long life GF bread rolls. Then she can relax (somewhat) knowing, worst case, she can always put together a quick cheese sandwich with some fruit or veg to round things out. Amazon in the UK has an online gluten free shop and I’m sure there is an equivalent in Italy. Shipping from Europe would also allow her mom to help her re-stock as necessary over the course of the month.
Laura will have to be ready to advocate for herself and also will have to be prepared to eat for survival (ie gf cookies with raisins and nuts) in some situations. She should be mentally prepared for an accident or two.
When it’s all said and done, it should be a very empowering experience for her. When it’s done, she’ll know that she can do anything.
I wish her the best of luck and would really love to see a follow-up post from Laura and her mom on how it turns out.
Becci
Apr 11th, 2013As a coeliac teen (15) I say that you shouldn’t let her stop doing anything she’d like to do! I’ve been on camps, holidays with friends, school trips abroad and it is hard yes, but as long as your daughter is clued up on her condition and is responsible enough to know what she can and can’t have then it will be fantastic for her! Also it will be a really good learning experience to get used to having to deal with these issues that WILL continue on in her life 🙂 As soon as she gets independent with the care of herself, the better. Just make sure all the staff at the place she is going, and the people who will be taking care of her are clued up and very aware. Also, make sure she is equipped with plenty of GF snacks and as much as you can fit amongst her items, just in case. That’s what I have done in the past, hopefully she will not be needing these emergency supplies but it’s better to be safe than sorry! She will have a great time!
Becci
x
Bethany
May 14th, 2013I would definaltly let her go. She may make mistakes, but I believe she will do her best. This is a hard disease to have, but like the rest of us she needs to find her way of living with it. My mother sent me to France when I was 14 by myself. At the time I was only lactose intorant now I am gluten intorant as well. That trip opened the world to me and gave me confidence in myself that would stay with me for the rest of my life. Yep, I had to learn to say no, but I learned to work around what I felt were flaws that made me different from everyone and see how I could turn those challenges into an adventure. I believe she will have a fantastic time and learn not to have fear or let her disease stop her from living life to the fullest. I hope she has a blast!