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

[Anonymous]

I know many people with Celiac and have two in my own family. No "require" a gluten-free kitchen. For most cross-contamination won't pose much of a threat, as the damage from gluten is cumulative. Cross-Contamination is only a real risk for those with the severest of Celiac.

[Anonymous]

Anonymous wrote:I know many people with Celiac and have two in my own family. No "require" a gluten-free kitchen. For most cross-contamination won't pose much of a threat, as the damage from gluten is cumulative. Cross-Contamination is only a real risk for those with the severest of Celiac.

This is really just incorrect. Damage from gluten isn't cumulative, and there is no "severe" or "mild" celiac disease. Celiac is a disease that you either have or do not have. Even if you have celiac disease, but aren't experiencing symptoms (silent celiac) you still have the disease and gluten is still causing damages, you just aren't feeling them.


Here's a good article explaining this:

http://theceliacmd.com/2013/07/my-doctor-told-me-i-have-mild-celiac-disease-what-does-that-mean/


Even a small amount of gluten is bad for people with celiac disease, and cross contamination is a huge issue.

http://www.todaysdietitian.com/newarchives/100713p16.shtml


Now if someone is gluten free because they have a gluten intolerance, or they are trying a gluten free diet for other reasons (some people try gluten free/casein free for autism, ADHD etc -- the circumstances there might be different, I don't know. But for celiac, you really need to avoid even tiny amounts of gluten.

[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 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.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:Holy jebus. I have read the entire thread.

There is no way in hell I would not be absolutely, perfectly, sincerely, and abashedly embarrassed to have to cancel three days before because -- wouldn't you know it, life always throws things at you like this -- seems like we've picked up the stomach bug going around. It's terrible. DH and I will feel queasy, and I will have been around people who've been vomiting [I'm sure they've vomited before at some point, at least someone I've seen recently]. Heavens, we can't bring that to a remote place with the Grandma and the new baby. So very very sorry. We'll see if we can pay a fee and use the tickets another time. Unfortunately, we won't make it at the same times as everyone else, but at least we'll see Grandma, and we'll try to make it out to see the in-laws and cousins (and new baby!) as soon as we can. Of course we will stay in a hotel -- you don't need to deal with visitors with a new baby! The kids will love camping out in a hotel room, but we'll have such an amazing time in between meals. It will be great.

So very, very sorry. We feel terrible about letting you down. Gosh, life sure is complicated. Thank you for understanding.

+1

[Anonymous]

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.

[Anonymous]

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.

[Anonymous]

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.

[Anonymous]

Can you nicely ask to switch lodging and explain your reasoning?

"We want want to keep nephew safe and kitchenette will allow safe place to prepare food for my kids. Easier for everyone than cleaning down the main kitchen everyday!"

[Anonymous]

Go to Target. Buy all the gf stuff you can. I just browsed their website, and there are lots of options. There are gf versions of pancake mix, Cheerios and other cereals, cookie mix, chicken nuggets and tenders, crackers, cheese puffs/Pirate Booty, fruit snacks, hot dog and hamburger buns, frozen waffles, corn dogs, pizza crust, granola bars, lunch meat, Thai/Indian simmer sauces, french fries, breakfast sausage, etc.

Other foods are naturally gluten free: tortillas, popcorn, cheese, eggs, fruit, vegetables, some soups, rice noodles, taco shells, yogurt, ice cream bars, tuna fish.

Buy individual microwaveable cups of macaroni and cheese, noodle bowls, and soups, so that you can heat and eat them without contaminating any dishes.

I might not be thrilled, but really, gluten-free for a week isn't the end of the world.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:Go to Target. Buy all the gf stuff you can. I just browsed their website, and there are lots of options. There are gf versions of pancake mix, Cheerios and other cereals, cookie mix, chicken nuggets and tenders, crackers, cheese puffs/Pirate Booty, fruit snacks, hot dog and hamburger buns, frozen waffles, corn dogs, pizza crust, granola bars, lunch meat, Thai/Indian simmer sauces, french fries, breakfast sausage, etc.

Other foods are naturally gluten free: tortillas, popcorn, cheese, eggs, fruit, vegetables, some soups, rice noodles, taco shells, yogurt, ice cream bars, tuna fish.

Buy individual microwaveable cups of macaroni and cheese, noodle bowls, and soups, so that you can heat and eat them without contaminating any dishes.

I might not be thrilled, but really, gluten-free for a week isn't the end of the world.

Very smart, very easy.

[Anonymous]

Lots of junk food is gluten free. Like, most brands of chips. Doritos, cheetos, fritos etc. All are corn based.

I just don't think it's that hard to go GF for a week. Or, if you must, ask if you can keep some things in your room (like bread and PB&J). The kids can eat in there, off paper plates, you take to straight out to the outside trash can.

Honestly this is not that big a deal.

[Anonymous]

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.

[Anonymous]

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...)