Nephew with celiac - what is fair/appropriate when visiting grandma?

[Anonymous]

Anonymous wrote:

Anonymous wrote:Gluten free would not be the end of the world. But gluten free, cabin and kitchen sanitized, new baby, sick nephew, far from stores, cooking new foods, and panicky parents of a 2 year old does not sound like a "vacation" to me.

Winner, winner
(glute-free) chicken dinner.

+ 2 (gluten free muffins)

You forgot to add in a MIL who has already cleaned and sanitized the entire kitchen and won't budge, thousands of dollars in airline tickets, a 4 hour drive after air travel and Target food.

OP, you have to let us know how this went!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:From the SIL POV, if you are 4.5 hours from civilization, where is the nearest hospital? If she is newly diagnosed, she may be worried if there is cross contamination it's far to get her two year old to a medical facility.

gluten exposure for someone with celiac disease doesn't cause anaphylactic shock -- it isn't an allergy. It causes damage to the gastrointestinal system and can cause symptoms such as muscle and body aches, joint pain, fatigue, bloating and gas, nausea, stomach cramps, constipation, diarrhea, rashes, headaches, depression, brain fog and irritability, which can last for a day or more like a week to get back to normal. But you don't need to go to the hospital.

I agree that the child won't need urgent immediate medical care like a child with an allergy. However, my understanding is that the symptoms, particularly those of newly diagnoses patients whose intestinal damage is still healing, can last longer than a week.

The young kids I know who have been diagnosed with celiac were so sick before diagnosis that doctors were suggesting life threatening conditions like cancer or cystic fibrosis. In addition to feeling lousy, kids with celiac stop growing and learning. Healing this child's intestines so he doesn't miss this window for brain and body growth is a higher priority than it would be for an adult with the same diagnosis.

I should note that the reason I know a number of kids with celiac is that I'm a special ed teacher, and kids with celiac tend to be over represented in special education classrooms because the "brain fog" can seriously impact learning.

Lap of celiac here. I think your perception may be biased by the subset of celiacs you are seeing. It sounds like you are seeing the kids with the severest symptoms. My kid had a persistent stomach ache eczema patches, and a somewhat distended belly. But absolutely no FTT (opposite really) or severe manifestations. Fairly certain she never would have been diagnosed without the new blood tests as nobody expected celiac from her constellation of symptoms, and she wasn't anywhere near sick enough to go for an endoscopy without that positive bloodwork.

Now it sounds like the 2 yo in OPs case may be on the sicker end. But just wanted to point out that celiac has historically been way under diagnosed because so many folks have more silent or minimal symptoms.

PP here, my impression is that many people who have more moderate symptoms go years without a correct diagnosis, so a child diagnosed by 2 is likely to be on the severe end. All the kids I have worked with were diagnosed early, because I teach young kids. So a kid diagnosed at 10 wouldn't have been a celiac kid at 5 when I would have taught them.

I'm just saying that what may be reasonable precautions for an older person, may not be reasonable for a newly diagnosed toddler, both because of the typical behaviors of a toddler, and because the health needs of toddlers are different.

I also think that the needs of grandma are important. I know that my mom has never taken kindly to being treated like a babysitter with specific instructions. When my kid had a significantly restricted diet (for other reasons), my mom still wanted to be able to make choices for him. Knowing that everything in the fridge was safe would have made things easier for her.

My kid was diagnosed at 5. Historically children with mild to moderate symptoms went years without diagnosis barring comorbid illnesses like diabetes. The advent of screening blood tests is rapidly changing that.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

OP here - because I don't have access to the kitchenette because BIL and SIL have reserved the guest cabin. I would do this in a heartbeat and wouldn't have even posted if I were able to use the kitchenette. For all you who say 'what if you travel out of the country' - we've been out of the country 5 times with our kids, and I just bring a cooler/ bag with the foods they will eat. They can last for a week on pb& j - but I haven't found any GF bread that I can get past any of us. I actually bought a bunch of stuff to try (noodles, bread, etc) so it isn't as if I am not trying, but we haven't had much success and I don't want to spend 5 days (not to mention thousands in plane tix and rental car) with hungry grumpy kids if I can find a reasonable way to bridge this gap.

You bring food to foreign countries for your kid?

Jesus...your kids need this trip, to learn their diet isn't the center of the universe. Land the helicopter mommy.

Can't believe it took someone else this long to post the same thought OP, you need to deal with your kids' issues and this trip is a good straight. There is no good reason good that kids should only eat the items you have mentioned. Time to end the lazy parenting.

[Anonymous]

Anonymous wrote:OP, will you update us as this story unfold? It's really got the makings of a classic!

(In laws, childhood food allergies, family vacation in the stix...)

+1!!

[Anonymous]

Anonymous wrote:

Anonymous wrote:Why do PPs keep bringing up two kitchens? OP said that the second kitchen is a kitchenette, with just a microwave for food prep. That's not sufficient for either family. I think some compromise on OP's side will be the only way to go.

The only full kitchen stays GF. There are plenty of GF options for kid friendly favorites, and OP should just substitute the GF options for a week for most meals. It's a good life learning lesson for kids that traveling means food can be different. Of course her kids won't starve with GF substitutes for a week. The celiac kids needs are more important.

However, if OP must have gluten bread and pb&j or anything else that can cross contaminate, she should store these things in the kitchenette and prepare food there. Obviously, she can only do microwave meals there, so it seems logical to keep it simple.

OP here - because I don't have access to the kitchenette because BIL and SIL have reserved the guest cabin. I would do this in a heartbeat and wouldn't have even posted if I were able to use the kitchenette. For all you who say 'what if you travel out of the country' - we've been out of the country 5 times with our kids, and I just bring a cooler/ bag with the foods they will eat. They can last for a week on pb& j - but I haven't found any GF bread that I can get past any of us. I actually bought a bunch of stuff to try (noodles, bread, etc) so it isn't as if I am not trying, but we haven't had much success and I don't want to spend 5 days (not to mention thousands in plane tix and rental car) with hungry grumpy kids if I can find a reasonable way to bridge this gap.

You mean you drove to Canada? Because I don't understand how you could go anywhere else with a cooler or bag of food. And, if you seriously took food to Canada or Mexico...well, I can't even.

You need to deal with your kids picky eating issues. Now.

[Anonymous]

Why couldn't the problem just be solved by asking if you could use the kitchenette to make sandwiches and other simple meals for your kids, which you could carry back to the main house to eat? They could stay in the cabin, but not make use of the kitchenette, or let their child eat food from it.

[Anonymous]

OP here - because I don't have access to the kitchenette because BIL and SIL have reserved the guest cabin.

Just ask them if you could use it. It is not that big a deal. They probably just want it for the privacy and would probably be ok with feeding their 2 year old only from the main kitchen.

[Anonymous]

OP, do you see how quickly people have come up with solutions here? In the time it took you to post your beef, you could have sat down and easily thought through:

1) "Simple" gluten-free foods that your kids do like
2) "Good enough" gluten free substitutes, like the nuggets
3) "Containable" non-gluten free food, like individual microwave cups of mac and cheese and noodles and soup
4) "In-room dining" options like bread for PB sandwiches in your bedroom with a closed door

When you look for problems, you'll find them.
When you look for solutions, you'll find them.

[Anonymous]

OP - celiac parent here. I would encourage you to continue your experimentation at home with foods that are both GF and that your family likes. It can be done with this trip in mind, but presumably you will have many more meals in the future with this child and it will be good to have those all inclusive menus in your repertoire.

And I'll reiterate that folks are happy to help you with brand suggestions. I'm sure most GF families have done a lot of experimenting to find the brands that work for us, and many of us have experience feeding non-GF kids at our house. So for example I get that some of our GF pastas doesn't pass muster with kids used to regular, but we've recently found some that do.

Heck - I've been doing this 3 years and just this week discovered that my kids don't hate all GF soy sauce, just the Tamari kind.

[Anonymous]

Man, my daughter was recently diagnosed with celiac. I understand that the world doesn't revolve around her. We take food everywhere, barely go to restaurants anymore, and are generally getting used to things.

But my sister is planning a birthday party for my niece, and is planning on making everything gluten free. Not because I am forcing her, but because she loves my daughter and wants to make her comfortable.

Because for family, sometimes, you suck it up. I would expect this complaining from acquaintances. Definitely not for family.

I think the use of paper plates is reasonable. But also, gluten free food has come a long way. As someone who can compare both kinds of food, gluten free pizza can be delicious and nuggets taste very similar. Get cheerios for the kids.

The mom is being unreasonable, true. But maybe she is tired, and constantly worrying about cross contamination is hard for her. Maybe they had a conversation with grandma, and grandma decided that, for ease, the house should just be gluten free. It is EXHAUSTING constantly worrying about what touches what. It's recent for me and I'm exhausted, and I don't have a newborn to worry about. I think she deserves a little slack.

[Anonymous]

Anonymous wrote:

OP here - because I don't have access to the kitchenette because BIL and SIL have reserved the guest cabin.

Just ask them if you could use it. It is not that big a deal. They probably just want it for the privacy and would probably be ok with feeding their 2 year old only from the main kitchen.

Usually kitchenettes are part of another room. I am guessing that one reason why they want the cabin is to have a space to contain toddler while caring for baby, so if the kitchenette is in the bedroom or living area, this probably wouldn't work.

Is the microwave freestanding? Could OP just take it to her bedroom? Then she could.microwave nuggets in peace.

[Anonymous]

Everyone can stop offering solutions. Eleven pages of solutions. But OP doesn't really want solutions.

[Anonymous]

Anonymous wrote:Everyone can stop offering solutions. Eleven pages of solutions. But OP doesn't really want solutions.

OP here and hold on, this isn't fair. I think you are confusing me with other posters. My original question was what if anything I could ask for reasonably and I have only chimed in since then to add facts (e.g., explain why we can't use the kitchenette without displacing BIL and SIL from that cabin and that we will be too remote to stay in a hotel or sneak out to McDs every couple days) and to mention that I have previously dealt with the picky eating by bring food for my kids, which I would willingly do this time and keep my mouth shut if there were a place I could keep that food and feed it to my kids (as the educated celiac-ers on this thread have noted, cross contamination is a big issue, so it isn't 'keep the pb & j in your room,' it is 'no bread in the house'). I haven't been nixing the suggestions given.

In fact, I have been taking notes about brands and even tried some of them tonight (Bell and Evans nuggets were a definite no. Annie's Mac was OK, not great. And Udis bread I could not get past myself, let alone my kids!). Please keep them coming!

And I have decided that if my good faith efforts to figure out how to feed my kids GF for 5 days doesn't pan out, I am not unreasonable to ask the parents for an accommodation but give them the choice of what it is (switching cabins, labeling our food clearly and using paper plates, permission to use microwave, etc). I think PPs who pointed out that Grandma may be the driving factor here may be right.

In other words, I have learned that while I should do my best to accommodate them, I am not the only mom out there who thinks it is too much to ask of us on our vacation to have our kids (the younger one is 4, BTW, so not exactly old enough to have empathy toward his 2yo cousin) not be able to eat any of the foods they typically eat for 5 days. Hungry kids away from home in a different time zone is not a vacation.

Thanks to all. I will continue to take GF suggestions for bread, pasta and nuggets (will try applegate next). And yes, I will report back

[Anonymous]

^^Yes your 4yo should be able to have empathy. My 3yo goes to daycare and understands that Billy and Susie don't eat cheese because it makes their tummies hurt, so we didn't serve pizza at her birthday party; we grilled hot dogs and burgers instead. Give your kids a chance to have empathy! Don't rule it out without trying.

[Anonymous]

This is your husband's family? I would stay home and let him deal with feeding the kids for a week. You can print out all the suggestions for GF foods people have provided in this thread.